Lessons From Joey

Another HUGE Milestone!

2010-04-21T16:39:00.002-04:00

Today I got to say goodbye to one of Joey's therapists...his dietitian. This is the first therapist involved with Joey that we have been able to say "we don't need you anymore" to, and it feels GREAT! One less person visiting the house, one less note to add to our ever-growing binder. I certainly don't anticipate we will be giving out walking papers to any other therapists but it sure feels good to cut down Joey's "fan club" by one!

I am pleased to report that Joey is eating extremely well. He gave up Pediasure Plus from a bottle when Ben was about one month old and has never looked back. His tolerance for texture has been steadily increasing and the variety of foods he is eating is the best it's ever been (can you say green beans? peas? beef???). We still have a long way to go to feeding independence as he is not feeding himself at all and still consumes purees and fork-mashed foods, but I am 1000% confident he is getting all of the nutrients he needs on a daily basis and has for quite some time. It makes working on the other stuff a whole lot easier.

Joey also received a visit at preschool from the special education teacher and vice-principal from the elementary school he will be starting in September. I stuck around for the morning and watched Joey through the one-sided mirror window, just to see what they were seeing. I was impressed that the vice-principal came as well, and he sat with me, asking questions, throughout their visit. They were there to assess his needs regarding an educational assistant and equipment he will need in September. While neither of them gave me the warm and fuzzies I do feel like they are caring people who are good at their jobs, I have a lot of confidence that they will do everything possible to make this transition as easy as possible. We are having a big team meeting at the school on May 11th so I am preparing with questions and concerns that I would like addressed.

Ben, my Sweet Potato, is growing and thriving. I can't believe he's 7 months old! I am in love with the little personality he has developed, he is a complete joy to have in our lives. He just began rolling both ways in the past week so I am bracing myself for his increased mobility and the baby-proofing that we'll need to do. We've been pretty active together when Joey is in school, doing mommy and baby yoga and aquafit togther, I'm enjoying our alone time together as I sometimes feel like he doesn't get as much of our attention as Joey did when he was a baby. A mother's guilt I suppose...

- P, J, J & B

Grab the Kleenex

2010-04-20T07:51:00.006-04:00

Someone brought this blog to my attention, and I mistakenly read this entry first thing this morning, right before the morning rush to get 2 kids out the door and Joey to preschool by 9am.

I have never written about Joey's birth, not even in a journal for myself. The pages in his baby book remain blank, I look at them every so often and say to myself that I'll get around to it.

It's been 4 years.

I can't bring myself to do it. The entire experience, including his birth, me leaving the hospital without him and the 26 days he spent there on his own are just too painful for me to recall in any great detail, though I know I should sit down and write it out before all of the details are gone forever. I'm sure I've already lost a lot by waiting this long.

Then I read this blog. This Mom wrote about the birth of her daughter 7 days later. Her daughter that was born with Down Syndrome, which they were not aware of beforehand. The fact that she threw in some AMAZING photography of the day really had an effect on me.

Anyway, here it is. I warn you, you WILL shed a tear, so get the kleenex.

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

New Neuro, New Meds

2010-04-19T08:54:00.005-04:00

I can't believe it's been 2 months since I updates, time has FLOWN by. Lots of changes and news.

First off, Joey's seizures. We started the valproic acid, Joey took it for about a month and at our follow up appointment with our pediatrician it was decided to wean him off prior to his appointment with the neurologist. It wasn't making much of a difference, he was still having at least one or two seizures a day. The pediatrician wasn't comfortable increasing the dose or changing medications....I brought the videos of the seizures with me to the appointment, and while he is sure it's some sort of "neurological event" that Joey is experiencing he said they weren't common seizures and wanted the neurologist to decide where to go from here. So we discontinued the medication and by the time we met with Dr. M at Sick Kids last week he had been off the medication for about 2 weeks.

Dr. M is the neurologist we met with a few times a couple of years ago when Joey was originally diagnosed with Angelman Syndrome. Once it was determined that Joey didn't actually have AS, and at the time he wasn't experiencing seizures, Dr. M said there was no reason for Joey to remain his patient because his specialty was AS and seizures. From there we have met with numerous neurologists, none of whom we really connected with (to put it nicely!). Now that Joey is having seizures I requested that we see Dr. M again and now he will be our neurologist for good, which makes us very happy as he is a wonderful man.

We met with Dr. M last Wednesday. We showed him the video of Joey's seizures, he thinks they are "complex partial" seizures, rather than "atonic". He has prescribed another med, Trileptal, which is another class of medication and is prescribed specifically for this type of seizure (and various mental illnesses, including depression and bi-polar disorder) so we're hopeful this will put an end to the seizures. Whiel the seizures themselves are short and do not in an of themselves cause any harm to Joey, he does lose most of his muscle control which can cause him to fall. I don't want him to start falling while he's learning to walk! We will have a follow up at with Dr. M in 2 months, along with another EEG at Sick Kids under sedation to hopefully get a better idea of what is going on.

In other Joey news, I am pleased to say that he is eating better than ever before! While it's still mostly purees and baby foods he is eating up to 80 calories in a meal, which is amazing for him. He is eating a lot of things he previously refused, like green beans, peas and cereals. Starting this week we are going to experiment with his prescool snack. I've been sending chocolate pudding for his snack, because it's easy and it's guaranteed Joey will eat it. Often I would pack something else, like a yogurt or fruit, but of course he was refusing it because he knew the chocolate pudding wasn't far behind. Since he is eating such huge breakfasts now I think it's safe to start sending fruit or yogurt and NO pudding...if he doesn't eat his snack it's not the end of the world, he has lunch an hour later. We'll see how this goes!

This week the special education teacher from the school Joey will be attending next year will be coming to observe him at preschool. This is in preparation for our big meeting at the school on May 11th, where we will be getting together with the teacher, the principal and all of Joey's therpaists to discuss his transition to junior kindergarten in September. ~sniff sniff~ I am a little sad that Joey is going to be starting school, a little nervous about how he will cope with such a huge transition and also really excited for his world to be expanded so much. He has made such huge progress attending preschool for just 5 hours a week, I am eagerly anticipating huge leaps when he's attending school 8 hours a day, 5 days a week.

Last month we braved the drive to Florida with both kids, taking 3 days to get down there. While the kids were AMAZING (no whining or crying at all!) that's because we stopped a lot and spent 2 nights in hotels on the way down. The boys and I ended up staying an extra week with Gramma Phyllis and Papa Roy and Jason drove back on his own. I flew back with the boys, and while most everyone was very helpful I don't think I will do that again until one of them is walking and can understand simple directions. It was exhausting! But well worth it, 2 weeks in Florida was a great treat. I'll post photos soon.

- P, J, J & B

Joey's Seizures

2010-02-23T15:54:00.002-05:00

We've managed to get a couple of Joey's seizures on video. The first was taken on Saturday and we didn't realize until after the fact that the camera was set to capture video in low quality, so it's pretty grainy:

The second was taken this morning, just before we were getting ready to leave for the hospital for Joey's EEG. It was pretty early and we didn't have many lights on so it was a really dark video that I lightened afterwards, so again, not the best quality:

We don't normally just let him fall over like that (and he's totally fine, I promise!) but he also doesn't normally fall on his head when he is leaning against something. In the first video he sort of gently slides down, but he just fell over fast and hard in the second video. You'll notice in both that he very quickly recovers and it's like nothing ever happened. Unfortunately we just had to do what we had to do in order to get some video of this, it was pretty difficult not to just drop the camera and attend to Joey.

I brought the second video with me today and the technician who performed the EEG was very glad to see it. She said that based on the type of seizures he is having (atonic seizures) she didn't expect to see much abnormal activity on the EEG because there is no "focal point" with that type (not sure what that means yet, haven't had a chance to Google it!). Sure enough, she didn't see anything unusual on his EEG but she said that what Joey is experiencing is definitely seizure activity.

So I will bring the videos with me to the pediatrician in 2 weeks so he can also see what is happening. While I am not happy Joey is having seizures I am glad that someone has finally confirmed for us that these are indeed seizures.

- P, J, J & B

Lessons From Ben

2010-02-22T07:38:00.003-05:00

Ahhh, my sweet baby Ben. Already I feel as though he is somewhat left out of our public celebrations of achievement. But that's not to say that in the privacy of our own home we don't marvel over his milestones, because we absolutely do. All of the little things that Ben does that Joey did so late, or not at all, are all cause for a "Honey, come quick! Look at what Ben is doing!" in our household. With Joey we shelved the baby books at around 4 months, since it was pretty clear by then that he was not going to follow the standards set by typically-developing children. With Ben it was a pleasure to pull them off the shelf and exciting to follow along as he does his thing. So far he has done what he's supposed to when he's supposed to, which is such a relief.

Baby Ben is now referred to as "Big Ben"...he weighed in at 5 months last Wednesday at 18.5 lbs! To put that in perspective Joey was 17 lbs on his first birthday. Ben falls in the 75th percentile for weight and 95th percentile for height and head circumference. He's a big baby! I know you're not supposed to compare kids but I think it's only natural to compare your experiences, and I think it's harmless enough as long as you're not expecting one kid to "measure up" to another. Despite having 2 boys we're not able to re-use a lot of Joey's clothing. Joey needs all of his waistbands taken in while Ben needs them taken out! From a very young age, maybe 6 months, I was shopping for tight-waisted clothing for Joey and already I am looking for loose-waisted clothing for Ben. I recently had to put a pair of size 6-12 month pants in the donation bag because they were just too tight on Ben, it looked like I had put a rubber band around his waist!

Here's a couple of pictures from Valentines Day...Joey in 2007 and Ben in 2010,both wearing the same outfit. Joey was 10.5 months old and Ben 4.5 months old, but fitting into the same outfit!

And some bathtime photos which really show off that adorable baby chunk:

So enough about his size...Ben has also proven to be the sweetest, most even-tempered and agreeable baby. He picked up on the rhythm of our household and just followed along all on his own, he has a nice long nap in the afternoon just like his big brother and most recently has slept through from 8:30pm to 7am on most nights. When he is awake he is just so happy and content, he is at that magical age when just looking at him and smiling can cause an outburst of laughter. He finds Joey particularly amusing, and Joey is just so gentle with him...most of the time. The very few times that Joey has been less than gentle was not on purpose, he just doesn't understand that he can't climb on Ben like he climbs on everyone else. I am often asked how Joey is adjusting to having Ben around...for the first month I think his nose was a bit out of joint, and he expressed his displeasure by crying at bedtime every.single.night for 4 weeks straight. That quickly ended and now it seems they love having each other around. When I pick Joey up from preschool and put him in his car seat it is a struggle to get him buckled up because he is lunging over at Ben trying to make him laugh.

Here is a little video I call the Joey and Ben Show. Joey is a bit of a scene-stealer, but Jason and I laugh our heads off every time we watch it:

Some random photos, just because:

I love seeing Joey through Ben's eyes. Ben only sees his older brother, he doesn't see any limitations or disabilities, he doesn't know that Joey *should* be talking, or *should* be walking. He sees a sweet, gentle and happy little boy who provides endless hours of entertainment. Ben contentedly sits in his car seat while we work with Joey on his physiotherapy at preschool, just watching quietly, almost as though he doesn't want to interrupt this very important work. In return Joey sees a little baby who doesn't threaten him, or bully him, or expect anything of him except smiles and laughter. Such an amazing start to what I hope is a close friendship between brothers.

Joey's New Tricks

2010-02-13T18:22:00.005-05:00

As promised, here are some videos of Joey's new tricks. The first is Joey attempting the stairs from the playroom to the kitchen. Ironically, these are the stairs he fell down when he first got mobile about 2 years ago, and you'll notice they are hardwood with tile at the bottom. Eeek! But now he's showing interest in going up. The toy I'm using was actually a Christmas gift for Ben from Nonno Joe and Nanny Sue but Joey has made it his favourite, so it's our current method of motivation.

Here is the first of 3 videos of Joey using his latest walker. This is the first walker where there is no support around his body at all, it's all up to him to hold on, steer and walk. The only thing we're doing to help is we attached two "leashes" to the handles to pull back on a bit because otherwise he gets going way too fast and wipes out, LOL. This is in the basement of his preschool, where he receives therapy weekly. His therapy assistant Patricia is the one "holding the reins" and you can also see his Resource Teacher in one of the videos as well.

The cool thing about this last one is that he pulls himself up and just gets going again!

Day one of the medication for Joey's seizures has gone off without a hitch. Well, mostly. He doesn't like taking it, and it's a red liquid, and he drools, so we still have to figure out the logistics of doing this 3x/day without staining all of his clothing. But it doesn't appear to be having an effect on him in any way yet...no "dopiness" at all. He's had 3 seizures today, the first two were the same as always and the last one was a bit shorter. Coincidence? Probably, I doubt the medication would have any effect after 2 doses. Next post will be dedicated to sweet Baby Ben, since he too has had some amazing changes! - P, J, J & B

Long Overdue, Lots of News

2010-02-12T17:27:00.005-05:00

Some cuteness from my boys right off the top :)

On to other news....

Lots of progress with Joey. He is using a new walker at preschool and when he is in the mood he can really get going. As usual it's a motivation thing with him, and like his mother he also needs to be very well rested to be cooperative. We did manage to get some great video though, which I will post soon.

Joey has made some gains at preschool with his peers as well. Although he still eats mostly purees he has eaten snack with his friends, when the menu is applesauce or yogurt. Twice now there have been chocolate cupcakes and Joey has taken a few bites...he doesn't chew, but sort of sucks it off the spoon, sucks it in his mouth to sort of melt it down and then swallows, but it's a start.

He also did something pretty amazing this past Thursday and I am so grateful to his wonderful teachers who immediately grabbed the camera and documented it for us. He was scooting around on the floor as usual, playing with a truck, when it suddenly hit him that some of his friends seemed to be doing something fun at the tables, so he moseyed on over and pulled himself up to play at the table!

What I love most about those pictures is that he looks just like all the other kids. It's so heartwarming as his Mom to see him looking so "normal".

Last week I registered Joey for kindergarten. ~sniff sniff~ I can't believe my baby is going to be 4 years old in less than 2 months, and will be starting school in September! Our local school was one of those chosen to be the first to implement full day, full week kindergarten for 4 and 5 year olds in Ontario, which works out well from a daycare perspective. The school will be offering before and after school care on-site so he won't have to move from school to a different location for daycare until I am finished work.

The registration itself was much better than expected. Joey was at preschool so I went with Ben, who was extremely charming and flirted with everyone. I am in love with the school, so clean and modern while still quite small. All of the staff I met were wonderful, the other parents registering kids for kindergarten that have older kids at the school were all telling me how wonderful it is. The special education teacher, Mrs.B, spent over an hour with me and I was very impressed with the facilities they have for students with special needs. I also appreciated her attitude...after asking me about his disabilities and what accommodations they will need to make for him she then spent lots of time asking about who Joey is aside from what he *can't* do. She asked what he likes, what he's good at, how he can best be comforted when upset. It made me feel good as a parent knowing that she cares about him as a person, not just a disabled kid. So the next step is to bring Joey for a tour, and Mrs. B. welcomes us at any time, and as often as we'd like. It's literally a 5 minute walk from our house so I'd like to get Joey over there often before September.

Now for the bad news...Joey has developed seizures. We had noticed a strange thing Joey would do once in a while, he would sort of make a humming noise, his muscle tone would decrease and he'd drool more than normal. At first we thought it might be another one of his unusual sensory-seeking behaviours, and it only happened very infrequently. Over the past few weeks Jason and I noticed a marked increase in frequency and started to wonder if it was a controllable behaviour or seizure activity. This morning it happened while he was in his high chair for breakfast and he slumped right over and put his head on the table, and his eyes sort of closed and rolled back a little bit. I called our nurse practitioner just to leave a message, hoping he'd talk to our doctor on Monday when she was in next and they could let me know what to do, I wasn't overly concerned. He was immediately concerned and called our doctor at home. Our doctor wanted us to go to the hospital immediately to meet with the pediatrician on call, who happens to be our regular pediatrician (Dr. K.) anyway.

After describing to the Dr.K what Joey's episodes are like he is positive they are atonic seizures, will likely continue to increase in frequency (they've gone from maybe 1x/week 3 months ago to several times a day...today he's had 2 already) and as he learns to walk there are increased risks of injury from falling. He suggests starting medication right away and has said that he's not overly surprised at this development because Joey already has neurological issues going on. He said he would have been more surprised if we had made it out of childhood without seizures developing. He basically said it's very likely Joey will need to be on meds for the long term, like well into adulthood. And these meds are 3x/day...blech. To date Joey has never needed medication for anything other than Tylenol :(

So he gave us a prescription for Epival (Valproic Acid) and has set us up with an EEG on the 23rd. Tonight Jason and I were discussing whether or not we want to start medication, and of course we were second-guessing what we've observed and wondered if maybe it's NOT seizures. As if he was listening to us Joey proceeded to have a seizure while standing at the couch, and fell straight backwards, banging his head on the floor. That pretty much sealed the deal for us, we'll be starting the meds in the morning.

There's more to update, and of course my little Ben has many honourable mentions, but it is late and we have a long first day of new medications ahead of us tomorrow so that's all for now.

- P, J, J & B

Ooops! Sorry to leave you hanging.

2010-01-10T22:09:00.004-05:00

The holidays were so busy I just didn't have time to update after Joey's appointment in December with the neurosurgeon.

Anyway,the neuro appt was as expected, another doctor with a God complex. When I asked my first question he cut me off with "if you don't believe me I'll send you for a second opinion".
~sigh~

I wish doctors understood it's not that we don't believe them, it's that we just want to understand what they're telling us.

He claims that "no doctor in Canada would operate on Joey's cyst even with a gun to their head" and "I will see 4 more of these cycts today and by far Joey's will be the smallest". So glad he's clairvoyant.

I tried to explain that while he sees this all the time we don't, and we're talking about MY CHILD, but that got him even more ridiculously defensive. I think we have a big black X on our file there as "difficult parents who ask too many questions". So we'll do another MRI in 6 months to monitor the growth and that's it for now. By that time our regular neuro will be back from sabbatical thank God, since she is very kind and takes the time to explain things.

The positive thing is that it seems the cyst presents no immediate danger according to 2 neurologists now, so we'll put it out of our mind for now.

Ben is growing like a weed and Joey has made some progression towards walking, including ANOTHER new walker. I'll post more soon!

- P, J, J & B

2009-12-09T08:19:00.012-05:00

Not much to update, just that our consult with the neurosurgeon has been bumped up to December 18 from January 8. I'm crossing my fingers that this guy will be a bit more thorough in his explanations. It could go either way...he's seen the email I sent to Dr. M so he may feel badly for us and want to explain things well, or we may now have a big black X on Joey's file at Sick Kids as being "difficult parents". We shall see, I'm trying to stay positive about it.

In other news...here are some photos that were taken at a grocery store photo studio. I don't usually go to those after the bad experience I had with Joey (I took him at 8 months and when I told the photographer that he couldn't sit up because of a medical condition I got a big sigh, followed by "well, that will make things difficult". That was the last time we ever went somewhere to have pictures done, and not coincidentally when I bought my Canon Rebel DSLR and started taking pictures myself!) but we did this to get a picture of Joey and Ben along with cousin Ty as a gift for Gramma. I made up my mind earlier that day not to get all uptight about this, as we are only given a 20 minute allotment to get these pictures done, and we were dealing with a 9 week old, a 10 month old and a disabled 3.5 year old. I'm glad I gave myself the pep talk because this was a colossal FAIL! Joey started crying as soon as he saw Ty and that was it. Ty is a perfectly pleasant, happy and sweet 10-month old but is very busy, as all kids are at that age, and it's just too overwhelming for Joey. He takes some time to warm up to Ty every time we see him and 20 minutes in a strange place just wasn't enough. Anyway, here they are:

Photo #1: Joey only appears mildly annoyed in this one, he hadn't gotten all geared up yet. Ty is one second away from smacking Ben on the top of the head, which resulted in a a brief bit of crying but Ben's tough. I especially like the placement of Joey's right hand.

Photo # 2: Joey now appears to be in great pain, and oddly, he also appears to be a giant! Something about the perspective of this photo is waaaay off. Ty is happy about it all though :)

Photo #3: Ty has left the room! We couldn't coax a smile out of Ben, nor could we get him to actually look at the camera. And as Jason says..."gee, where have I seen a baby in a basket against a white background before?" Yeah, not very original.

Photo #4: This is actually photo #1, taken at the very beginning before Ty or Ben entered the room.

And Photo #5: This is the best that could be done to get the two of them together. Blah.

I took some great pictures for our Christmas card but I'll save the one we used for the new year, I don't want to spoil the surprise for those of you on our Christmas card list! But here are some others to tide you over:

I'm trying to post some videos of Joey and Ben together but am having technical difficulties, so I'll save those for another day.

- P, J, J and B

Benign

2009-11-30T15:14:00.002-05:00

Email from Dr. M, the Chief of Pediatric Neurology, received today:

Thank you --

I have had Joey's MRI from November 2006 read here. The cyst is not seen.

I have asked Dr. T (the neurosurgeon) to review the MRIs --he feels that the cyst seen in the October 2009 scan is benign and there is no need for concern, however he will attempt to arrange an earlier appointment so you can discuss the cyst directly with him.

I had left a telephone message for you --but you do not need to return my call unless you have other concerns. I will ask our booking office to provide an appointment for Joey with Dr. B (the neuro that we had asked to be switched to after our first experience with Dr. L, but she is on sabbatical until July 2010) as soon as she returns.

- Dr. M.

Good enough for me....for now. Of course I still have questions:

WHY it is considered benign? How can something be so big and push on the brain so much and not be a problem?
How can they be sure it is not causing pressure and/or headaches?
How do they know it is not responsible for some of Joey's unusual and unexplained emotional outbursts?
How big will they allow it to get before doing something about it?
How often will it be monitored by MRI?
Can those MRIs be done at our local hospital?

At the very latest we should see Dr. T January 8th as originally scheduled, but it sounds like it could be sooner. I feel a bit better about the whole thing now that 2 other people have reviewed Joey's case, so now I will be a good girl and wait patiently for my turn to see the fancy doctor :)

- P, J, J & B

2009-11-25T16:49:00.002-05:00

Approximately 45 minutes after sending my email yesterday I received a response from Dr. M:

Thank you for your e-mail.

I'm sorry that you had a difficult experience in our clinic. Would you please courier the CDs of Joey's MRI to me. I will arrange to have the MRI from 2003 loaded onto our system here and then reviewed by neuroradiologists.

We can then discuss the results with Dr. T.

Due to her prompt response time and willingness to deal with this situation I will forgive her error...the first MRI was in 2006, Joey didn't exist in 2003 :)

I sent the CD and reports by Purolator today, guaranteed to be there by 10:30am tomorrow. I'm hopeful she will get back to me by Friday evening.

- P, J, J & B

Off to See the Neuro Tomorrow

2009-11-20T16:15:00.004-05:00

Quick update - there was a cancellation at Sick Kids for tomorrow and they called to offer us the appointment, which of course we accepted. Luckily I told our local hospital that I needed the CD with Joey's previous MRI and brain ultrasound images urgently and it was ready and picked up by Jason on Friday, so we are prepared. I'm just putting together my list of questions now so we use our time wisely when meeting with the neurologist.

Here are some random pictures of the kids:

Jason and Ben when we were in Niagara Falls...don't the look alike?

Ben posing by the window in our Niagara hotel room

I absolutely LOVE this picture. That's totally his Daddy's expression.

Whoops! I took apart this gate to wash it and didn't put it together properly. Joey quickly realized my mistake and let the cats through before attempting to escape himself!

Ben at 2 months, getting bigger by the day!

A ridiculously huge grin!

- P, J, J & B

Mission Accomplished

2009-11-18T14:29:00.003-05:00

Joey has an appointment with a neurologist on Monday November 30, how's that for action?!

It's with the very first neuro we saw when Joey was a baby and it will be at Sick Kids Hospital. We are to bring all of his images with us on a CD...his first MRI, EEG and head ultrasound...for comparison purposes.

We still have the appointment with the neurosurgeon on January 8th, but depending on the results of the appointment on the 30th that may get bumped up.

Now, to get the images on CD in time for the appointment, that's my next mission!

- P, J, J & B

Neurosurgeon Appointment is Booked

2009-11-17T21:32:00.003-05:00

As I was told to do last week, I called the neurology department on Monday to find out when an appointment was booked for Joey. A very kind lady looked him up on the computer and told me that the neurologist attempted to triage his referral on Friday but was missing some information, which was received later in the day from the pediatrician but now it has to be re-triaged and this wouldn't be done until Friday of this week. I asked what information was missing and she told me it was the MRI results. Ummmmmm, you mean the MRI that was conducted AT Sick Kids?!?! I was in disbelief, this was turning into another comedy of errors.

I immediately called the "Patient Representative" department of the hospital. Let me just say this...if you are ever dissatisfied with anything that happens in a hospital the first thing to do is contact the hospital ombudsman, or patient advocate/representative department. The very kind lady who took my call got things done, and quickly. She managed to find out that we had been booked to see a neurosurgeon on January 8th, and told me that I would be receiving a call tomorrow morning from the neurosurgery/neurology clinic supervisor to discuss what was happening with a referral to a neurologist. We still need to see/talk to a neurologist prior to January 8th as we have a million questions about the MRI findings and no one to explain it to us.

I was satisfied with all of this for now, and then to my surprise I received a call on my cell phone at 5:30pm from the Chief of Pediatric Neurology. After just having read her biography and list of awards and achievements on the Sick Kids website I felt honoured that she actually took the time to call me herself, almost like I was getting a call from the Queen or something! She spent a good 20 minutes on the phone with me...her initial assessment based only on the MRI report in front of her and nothing else was that an arachnoid cyst like Joey's are somewhat common, they are very conservative about treatment and likely would just watch it closely for growth or change with the support of a neurosurgeon. She also said the changes to his white matter were very non-specific. I asked her if it would make a difference if there was no evidence of this cyst or white matter changes on his MRI at 7 months of age and she was confused, since this report specifically says there is no past MRI for comparison. I advised her that there was, in fact, another MRI done at RVH in Barrie and that the report from that MRI was completely normal. Add this to the comedy of errors! She did say that changes things quite a bit, that it would indicate obvious growth over the past 3 years and that is when they consider surgery. She said that while it is routine to the neurosurgeon (burr a small hole in the skull, drain, close) it is major surgery for a child.

The bottom line is that she was unaware we didn't have a neurologist and agreed that we needed to meet with someone ASAP. She said she was going to leave a message for her assistant to deal with this first thing in the morning and get us an appointment with the very first neuro we met with when Joey was 6 weeks old, since that would be a "follow up" appointment rather than a "new patient consult", the latter taking much longer to schedule. She assured us it would be a matter of days or weeks before we could see him, not months, and certainly before the neurosurgeon consult in January. She is going to ask that a copy of the MRI from 3 years ago be sent to this neuro's attention so that he can compare the images from both to get an accurate picture of what is going on.

So now it's time to compile my list of questions to ask the neurologist, and I do have many! I hope he books off a substantial amount of time for our appointment :)

- P, J, J & B

Google is my Best Friend

2009-11-11T21:54:00.007-05:00

Who was I trying to fool? There's no way I could wait 2 weeks to follow up! At 8:30am I was on the phone to Sick Kids Hospital trying to determine when we will be seen. 2 very unfriendly clerical staff later I now know that there is no such thing as an "urgent referral"...in fact, the second receptionist had a snide little chuckle when I told her that Dr. J had sent an urgent referral. She was all too happy to inform me that how urgent a referral is is not up to the referring doctor, or up to me or anyone else, it is at the sole discretion of the neurologist who triages all referrals. This doctor, whose name I am not allowed to know, will be reviewing referrals this Friday. So apparently if I call back on Monday this woman, who obviously has never had the experience of being told that HER child has a cyst in their brain, may be able to tell me when our appointment is. It really should be a prerequisite for ALL staff at a children's hospital to have a bit of compassion and understanding.

Aside from all of that I have of course done a whole lot of Googling, and have also managed to get a copy of the actual MRI report (Sick Kids told me 4 weeks to get a copy, luckily Dr. J and our own family doctor treat us like actual people and provided me with a copy today). According to the report the type of cyst Joey has is an "arachnoid cyst", more common in males, and more common on the left side but Joey's is on the right. It also states there is some "increased FLAIR signal in the parietal white matter". I'm not exactly sure what this means in layman's terms but it seems to mean abnormal electrical activity in the brain? The myelination is consistent with his age, which is ironic since this was the only abnormal finding in his first MRI and the reason for the repeat exam!

There is a LOT of information out there on arachnoid cysts and it's difficult at this time to apply a lot of it to Joey specifically. In what I've read it would appear suspicious that the cyst didn't appear on the first MRI as they are usually present at birth. What is scaring me the most right now is a possible rupture if Joey sustains a fall or blow to the head of some sort. What is making me sad is that it seems highly likely that Joey has been experiencing headaches but of course is unable to communicate to us when something hurts. The idea that my baby could be experiencing pain and he can't tell me so therefore I can't try to fix it is something NO parent or child should ever have to experience.

We are seeing our family doctor on Monday so hopefully she can help me interpret this report a little bit.

- P, J, J & B

The MRI Results

2009-11-09T20:36:00.004-05:00

This morning I received a call from Joey's pediatrician, Dr. J, with the results of his MRI...Joey has a fluid-filled cyst measuring approximately 3cm x 2cm, the fluid is cerebrospinal fluid (CSF). It is located in the right middle cranial fossa, which is over the right ear in the temporal lobe.

Ummmm, yeah. She really couldn't tell us much more, since neurology is not her specialty, and currently we do not have a neurologist since they all decided that they had done everything they could in regards to investigations. Obviously not! Apparently the only people who thought a repeat MRI was necessary were Joey's parents and this pediatrician, and obviously we were on to something.

What Dr. J could tell us was that the cyst is relatively large, and is likely contributing to his symptoms (low muscle tone, lack of speech, cognitive delay etc.) but that it would be unrealistic to think that once the cyst has been dealt with Joey will turn into a "normal" little boy. She did say that this is a big indicator that Joey's brain did not develop correctly in utero, likey in the first trimester. She could not say why this wasn't found on the first MRI at 7 months or what that could mean, and she could not tell us for sure what the best course of action will be. What she did say that there are a few treatment options in the case of a cyst that is obviously symptomatic...it can be left alone and monitored regularly for growth, a shunt could be placed in the cyst to drain it to another part of the body where the fluid will be absorbed or we could be looking at a craniotomy to remove the cyst. It all sounds pretty scary to me.

So an "urgent" referral has been made to both a neurologist and a neurosurgeon at the Hospital for Sick Kids in Toronto. Funny enough, when we left there 2 weeks ago after the MRI we were sure that we'd seen the last of that place for a while, and now it looks like we'll be spending more time there than ever.

We will update again once we know more.

- P, J & J

Joey's MRI and Ben's First Smile

2009-10-24T22:50:00.006-04:00

Thursday we took Joey to Sick Kids in Toronto for an MRI, a follow up to the one he had at 7 months of age. This one required general anaesthetic which is always a little bit scary. He seemed to do fine with it though, despite his cold. We were in at 9am and on the road home at 12:30pm,not bad! The results should be in in about 2 weeks. Here's the little guy in his hospital gown waiting patiently for his turn:

Ben surprised us with his first smiles on the early side, only 4.5 weeks! This was the first one we captured with the camera at about 6 weeks:

So more pictures of the ever-changing Ben:

That's all for now :)

- P, J & J

Another New Walker, Some Cruising and a Healthy Chunky Baby!

2009-10-19T07:31:00.005-04:00

Yet another new walker! This was brought last Friday as an experiment, just to see how close Joey was to reaching this level of walker, not really expecting much at all. Well, he surprised us all, check it out:

I think we've reached the end of the line with walkers, which is great news! Not to say Joey doesn't need one anymore, but I just mean that there really isn't another one for him to "graduate" to after this. We've gone from a very supportive walker to one with almost no support at all. The "walking wings" that we're using around Joey's chest almost like a leash is more for safety than anything else. We started off without using them and Joey was just fine, but as he learns how to use it he is prone to moving a bit too quickly and falling so we use them as a way to catch him. He looks pretty happy with himself!

Another new development is that Joey has begun to "cruise" furniture. For those not familiar with what that means it's the stage in learning to walk when a kid uses furniture to hang on to for support while moving from one spot to the next. So far he's only done it in one place but as we've learned with Joey that's how it all begins!

On Thanksgiving we went to Papa Roy's daughter Julie's house for some turkey yumminess. There Joey was met with not one, not two but THREE dogs! Joey has never really shown a fondness for dogs....okay, he's basically cried every time he's around one, and we really don't want him to grow up with a fear of dogs so this was a great opportunity. Two of the best behaved Jack Russell terriers I've ever met were quite interested in him, and after about 10 minutes Joey warmed up to them. Here's a picture of Joey trying to share his truck with Abby:

And on to my sweet little Ben. Or my sweet giant Ben I should say. At his check-up today he weighed in at a whopping 10 lbs 5 oz, an entire 2 lbs heavier than 2 weeks ago! He is in the 75th percentile for both head circumference and weight, 50th for height. Having always had feeding issues with Joey this is a delight for us. He's just over a month old now and still an incredibly easy-going baby. He loves to be held and carried, and if neither is possible he adores his swing:

And now just some general cuteness of both my boys:

- P, J & J

Joey Runs Away from Home

2009-10-04T10:05:00.004-04:00

Okay, well maybe he didn't "run" but "Joey Butt-Scoots Away from Home" didn't have the same ring to it.

The playmat you see in the foreground with the polka dots on it has been Joey's safety zone for well over a year. We would take it everywhere and he would pretty much stay right on the mat and rarely stray. If he did go off the mat it was usually to retrieve a toy and he'd scoot right back onto it.

So yesterday Jason was cleaning out the garage and he had Joey set up to play out there. All of a sudden the door to the house opens and Jason yells "come look! he's running away from home!" and sure enough there is my child halfway down the driveway! I thought maybe it was a fluke but he did it over and over again each time we brought him back to the mat. He's certainly gaining confidence!

This was the second video I took. The first one is dizzying to watch because the camera is shaking with my laughter. I wonder what the person in the car that drove by must have thought!

Joey is definitely settling into his role of big brother. He is now more interested in Ben and is surprisingly gentle with him.

Ben is a little chunk. He was weighed again on Thursday and is now 8 lbs 5 oz! He eats ALL.THE.TIME. This is new territory for us, a child who enjoys eating, asks to eat, finishes what we give him to eat etc. What a treat! He's already out of newborn diapers and into size one! Just look how his face has filled out:

Week one home with both boys went much better than expected, though I do have to give a shout out to Gramma Phyllis, who took Joey to preschool on Tuesday and Thursday and also took him all morning on Wednesday. It made getting errands done much easier with just one child. And of course Lori, who accompanied us on our shopping trip on Wednesday and treated me like royalty by carrying Ben in the car seat, bringing in my groceries etc. I finally did tell her that I was feeling great now and had no problems lifting/carrying, but she insisted :)

- P, J & J

Baby Ben Joins the Family

2009-09-20T09:10:00.008-04:00

Benjamin Charles completed our little family on September 16 at 2:17am after a relatively short 8-hour labour. It was tears all around when he was born and our repeated "is he healthy?" inquiries were met with a resounding YES from the doctors and nurses. They all knew about Joey and the fact that there was no way to predict if this baby would have the same disabilities and shared in our joy when it was obvious that Ben was 100% healthy. A few pictures of the moment...I remember not being able to see for a time because I was crying so much:

So I got my wish...a "typical" hospital birth, baby beside my bed, visitors, and a healthy baby. I didn't realize that the typical birth experience is served up with a healthy dose of adrenaline, accompanied by complete insomnia, exacerbated by an over-crowded birthing unit and maternity floor. Every planned induction and c-section for that day was sent home and rescheduled...except for us. Though I was scheduled to be induced at 7:30am it didn't happen until 6pm, but Dr. S was unwilling to postpone my induction to another day because of the cholestasis.

Joey came later that day to meet his new brother, however he has determined that if he doesn't look directly at Ben he must not exist. We did manage to get one shot of actual eye contact:

And how cool is this? 2 similar photos taken of Joey and Ben at almost the exact same age. The resemblance is crazy!

Joey:

Ben:

36 hours after birth we headed home. I was pretty much delirious with exhaustion, not having slept for even an hour in over 2 days. The first few nights were rough, but it must be said that it had nothing to do with Ben. He is a SUPER easy baby, so much like his big brother in his contentedness and lack of crying, just minus the severe disabilities. I had really psyched myself up for a colicky baby after how easy I had it with Joey, but so far he is fantastic.

Ben developed a bit of jaundice after he had been home for 2 days, so we had to return to the hospital on Saturday where they discovered that his bilirubin was up considerably to 242. They sent us home but we had to go back the next day to re-test, at which point it had risen to 252. On Monday we saw our family nurse practitioner, who re-ordered the test, and on Tuesday it was finally coming down and was at 219. His colour is much better, he is eating like a champ (what a treat after dealing with severe feeding issues for 3.5 years!) and he has gained enough weight to be back up to his birth weight of 7 lbs 13oz so there are no plans to re-test.

For the first few days Jason was home with us, and when he returned to work my Mom came and stayed for a week. She just left today so starting Monday I am o my own with my two boys. I am scared and excited all at once. It will be nice to develop my own routines but not having any help on a daily basis will be a big adjustment. Jason is pretty good at sharing nighttime duties which in turn allows me some sleep, and when I am rested I can do anything. When I'm not, well....lets just say you wouldn't want to be around me.

On Thursday I returned to our nurse practitioners office just to have Ben's weight checked and was met by our nurse and family physician who were eager to meet him. Our nurse, who has been so supportive of me, always asking how I'M doing first rather than how Joey is, asking after Jason and how we are coping, asked me a very frank yet interesting question...did Ben's birth make me sad about Joey? I thought about it for a second and realized that the exact opposite is true. Ben's birth has somehow "vindicated" the difficulties and challenges we've experienced with Joey, and having a child now that will likely develop typically makes me feel like I get the best of both worlds. I have said it so many times before, we are SO LUCKY to have Joey in our lives, the things he has taught us, the people he has led us to meet, the patience he has inspired and the satisfaction he has with himself are all amazing things that most other families will never get to experience. I'm sure a lot of people look at us with some form of pity, or fear that having a disabled child could happen to them, but in a way I feel sorry for THEM, they will never know what having a kid like Joey brings to your life, but I get to experience that AND having a typically developing child. So anything I feel like I was robbed of before has been returned to me through Ben, and I'm sure he will have all kinds of stuff to teach us too.

- P, J & J

A story about two little boys and a tractor....

2009-09-11T16:23:00.008-04:00

So we had a tractor for Joey to ride on all summer, graciously loaned to us by Joey's previous nursery school. It was a little beat up, the back wheels were at a bit of an angle and a few of the screws were missing, but Joey loved it and it was excellent practice at balancing. We used it all summer with the knowledge that we'd have to return it.

Since we got it I had been looking for one of our own, new or used, to replace it when it inevitably had to be returned. It had come to our last option...to buy it direct from Little Tikes in the US for $50 USD, plus about $40 shipping, plus exchange, plus duty and customs charges. A little rich for this family with one of us about to take a huge cut in pay to go on maternity leave for a year! So I happened to mention that I was looking for a used one on a message board I frequent, which was met by a response from a lovely lady named Devin in upstate New York. You see, Devin has a son named Brenden who is 3 years old as well and has autism, so she understood how incredibly difficult it is to find that special toy that just "works" for a special needs kid. So, right away she asked Brenden if he would be willing to give his toy to another little boy who needed it. Brenden is non-verbal but understood and shook his head "yes". 3 days later the UPS man arrived with a big box containing Joey's new tractor, along with a note from Brenden and a picture of him riding the tractor!

So of course we put Joey on the tractor right away, took a picture (the one below) and sent it off with a thank you card to Brenden from Joey, explaining to him that Joey's muscles don't work the same as other kids and that this was one of the toys that he is really able to use, and thanking Brenden for doing such a kind and generous thing.

The really nice thing is that this tractor is in much better shape, since it hasn't been used by a school of children, and much more stable for Joey to ride on. I' m pretty sure the expression on Joey's face says it all! Thank you Devin and Brenden, many tears were shed in this house the day that tractor arrived over the kindness of strangers!

In other Joey news, he received a new loaner walker last Friday. This one has much less support that the "Pony" he was using before. We still use the Pony purely for exercise and for Joey to experience the freedom to move around outside as he wishes, but it certainly wasn't aiding in getting him to walk independently anymore, he had surpassed its usefulness. So along comes the "Spider", as Jason calls it. It definitely provides less support and causes Joey to work harder, and has all kinds of adjustments that can be made as he gets stronger in it. Surprisingly he took to it right away, unlike the Pony which took him months to make a move he started moving a bit right away:

So that's pretty exciting for us, and he will start bring it to preschool as well so he is upright with his peers.

Today is our last day as a family of three. I had all kinds of mommy-son stuff I wanted to do with Joey on our last day alone together, but it just wasn't in the cards. Joey picked up a bug after only 2 days of preschool and last night I started feeling under the weather too, so today we moped around being sick together. After dinner he is off to Gramma's since Jason and I are headed to the hospital at 7am tomorrow morning for my scheduled induction. Our next post should include pictures of Joey and his new baby brother!

- P, J & J

Induction is Booked, Anxiety Sets In

2009-09-04T12:06:00.005-04:00

It's so strange to know the date your baby will be born. Some people feel that way about knowing the sex of the baby before it's born, which is something I just HAD to know, but I feel like knowing the arrival date spoils to surprise even more than knowing the sex.

But, I know that due to the cholestasis it's best to induce between 37-38 weeks, and I will be 38 weeks 1 day on September 15th, which will be this baby's birthday. Of course it's entirely possible he will decide to come on his own before then but so far he has seemed pretty comfortable where he is. So only a week and a half more of being a family of 3, soon our lives will be forever changed by the arrival of our 4th family member....does that make me sound anxious at all?! No, I know that there is no better gift I can give to Joey than the gift of a sibling, and I know this new little boy will be forever blessed to grow up with a brother like Joey. So I am excited, maybe just a bit anxious, but I am so busy over the next week that I won't have much time to think.

I also got the results of the biophysical profile ultrasound I had done over a week ago. It measures things like heart rate, amniotic fluid level, basic anatomical measurements, approximate weight of the fetus, fetal movements, fetal breathing and the reason we had the test done in the first place...muscle tone. The results are fantastic...8.8 out of 10! Anything over 8 is considered normal. There was absolutely nothing remarkable about the scan and all signs point to a happy, healthy baby. His approximate weight at 35weeks 1day was 6 lbs. 2oz.

Next week is a big week...Joey begins his new preschool! I'm praying the transition goes well, Gramma Phyllis is going to accompany him for the first few weeks so hopefully that will help. Tuesday is the big day!

- P, J & J

Sippy Cup Success!

2009-09-02T09:08:00.003-04:00

For the first time in 3 years, 5 months and 2 days Joey held a bottle and brought it to his mouth! This has been the bain of our existence, having a child who relies on others 100% to feed him both solids and bottle, so this is HUGE progress!!! He didn't actually drink from it, but he picks it up, plays with it and brings it to his mouth repeatedly. I think he just needs to figure out that he needs to tip his head back to get anything from it. Of course I managed to capture it on video this morning:

About 2 weeks ago I purchased the bottles you see in the video, as they were the only ones that took he nipples from Joey's other bottles and had optional sippy cup handles. This was a big deal for us as Joey has been using the same bottles since he was released from the hospital at 26 days old. For the past 3 weeks I have been feeding him from the new bottles just to get him used to the shape and size but with no pressure for him to hold it himself. On Monday I decided to put it in his crib with him for naps and bedtime with just a little bit of water. This morning I removed it and it looked like there were bite marks on the nipple but I couldn't be sure. So this morning I refilled it and put it on the floor, where he proceeded to put it in his mouth!

What a lovely start to the day :)

- P, J & J

Pulling to Stand, Again, Again and Again.

2009-08-31T16:57:00.007-04:00

Joey is standing more and more these days, and in different places too. Last week he was scooting around in the hallway upstairs and decided he wanted to get back into his bedroom:

The fantastic part about that isn't so much that he stood up at the door, but that he obviously comprehends that the door handle must be grasped and turned in order for the door to open.

He also started standing at one of the baby gates in the living room:

And of course he stands in his crib:

I wish I could figure out a way to reconfigure his bedroom furniture to get the crib away from the window...the blind was a great motivator to get him to stand up but unfortunately it now needs to be replaced since he ripped a giant corner of it off. I'm also a little worried about what we will do once his centre of gravity gets a bit higher and he can fall right out of the crib. He is simply not ready to sleep on a bed, or even on a mattress on the floor. He doesn't understand "bedtime" and there is just no way he'd stay on his mattress to go to sleep. I suppose we'll cross that bridge when we get to it.

Joey was fitted for his new AFOs (ankle/foot orthotics) last week. Up until now he has had SMOs, which only came up to his ankle, but now that he's standing and walking with assistance he needs more stability up into his calves and knees, so these will come up higher on his leg. I went to this appointment armed with several interventions, like toys, books, videos loaded on the camera to distract him with, snacks etc. thnking this would be a nightmare like his haircuts tend to be. To my great surprise he just sat in the chair on his own and allowed the orthotist to do his thing without a complaint. He was actually quite interested in what was going on and wasn't even bothered by the casts being cut off!

And I saved the worst for last...a short video clip of my poor, poor boy at his group therapy session last Friday:

Joey has been attending a therapy group for non-walkers (kids who are at the age that they *should* be walking but aren't due to various disabilities) since January of this year. He basically cries through the whole thing. Gramma Phyllis has been the one to take him to class every week (2x/week over the summer) and while I knew he cried and wasn't happy I really didn't appreciate how bad it was until I went with him last week. It has baffled all of us as to why he hates it so much...it's a fun group where they play and sing songs, the therapists and other children are very friendly, the environment is kid-friendly, he is rested and fed beforehand and the activities are not too difficult for him. If you've ever met Joey you know that he rarely cries, maybe a total of 15 minutes in a 7-day period, so for him to react this way is very unusual. I don't even think we have ANY other video of him crying since he was born!

After much debate Jason and I have decided to let Joey take a break from this class for the next session which starts in 3 weeks. Joey has a lot of changes coming up...a new preschool in just over a week, a new baby in the house any day now...it's probably best to give him a break and maybe try again later. I just can't imagine he's getting very much out of the class when he is so miserable!

As for Joey's new baby brother, we surpassed a milestone yesterday. On Sunday I was exactly 35 weeks 6 days pregnant, which is how far along I was when Joey was born. So as of today I am officially the most pregnant I've ever been, and getting nervous with the realization that this baby can come at any time now. I don't feel ready but I'm not sure if I'll ever truly feel ready. Last weeks' tests seemed to be fine...no ultrasound picture though, apparently a 35-week baby doesn't look like much of anything in an ultrasound picture. The tech said I'm measuring bang on with my dates, which is great, but of course she can't tell me anything else. I haven't received a call so I'm assuming everything else checked out okay. Tomorrow I have another weekly non-stress test at the hospital and if Dr.S. is the on-call doctor I'm going to try and pin him down to an induction date. If he's not there I'll see him Friday morning and should have a definite date booked at that time.

- P, J & J

Joyful Joey

2009-08-16T18:46:00.011-04:00

I can't believe it's been almost a month since I last updated the blog. So much going on! I'll start with Joey...

It's no coincidence that if you remove the "e" from his name it spells joy, because that is what this kid brings us on a daily basis. Our most recent lesson from Joey? To find enjoyment in the everyday, as he does with our new curtains in the living room:

http://www.dropshots.com/pmq97#date/2009-08-18/07:00:50

(sorry about the link, I can't add videos over 100 MB directly to the blog. The bonus is that there are lots of other Joey videos on dropshots.com!)

He is also now pulling to stand over and over again, but only in 2 places..the couch and his crib. He finishes the move 99%, he just needs to work on getting his left foot under him.

His walking with assistance is getting smoother as well. He has his favourite places to walk to, usually from the front of the house to his swing in the back, but he will walk pretty much anywhere outside. Inside is more of a challenge as he would rather just scoot around on his bum on the comfy carpet and hardwood.

We have a little pool for Joey in the backyard, which he absolutely loves on hot days. So much do that we've taken to giving him his bath in it on occassion.

And on a couple of the hotter days we enjoyed a swim in Zia Jodi and Uncle Jason's pool along with cousin Ty. We finally had the chance to use this floatation aid which we received as a gift somewhere along the way but can't remember from who! If it was you please know that it is the BEST one we've ever used, it fits him perfectly now, requires very little air to blow it up and folds up nice and compact. I'd also love to know where it was purchased :)

Joey and Ty having a "conversation":

We had a chance to get our garage organized and our super-deluxe double stroller finally made it's way out of hibernation. We bought it back in March and it's been waiting patiently to see the light of day. We decided to take it on a test drive, Joey gave it a thumbs up:

We're still on the hunt for this Little Tikes tractor. It's been great for Joey,and with the addition of his new safety gear I actually feel comfortable moving a few feet away from him instead of hovering over the poor kid. This one belongs to his previous nursery school and has to be returned in a few weeks, so if you know where I can find one new or used please let me know.

Aaaaaand of course he took a tumble. But it's okay, he was protected. A few tears and all was well.

Joey's little brother is also doing well. I am now 34 weeks pregnant and things seem to be going smoothly.We haven't had to go back to Mount Sinai at all, which is a blessing. Beginning at 32 weeks my regular OB has been on top of things and I go to the hospital weekly for non-stress tests (NSTs). I've had 3 so far and all three were excellent, the baby seems to be enjoying himself in there and is doing everything he should be. I've had more bloodwork done, everything is checking out fine. I'm still waiting for my most recent bile acids test result and I suspect it will be higher than before as unfortunately the itching is getting worse.

It's hard to believe that a week Saturday I will be 35 weeks 6 days pregnant, which is when Joey was born. I'm hopeful this baby can stay in just a bit longer...Dr. S.would like to induce me somewhere between 37-38 weeks. This pregnancy has flown by compared to my pregnancy with Joey...with him I felt like an elephant, like I was gong to be pregnant with him forever. This time I'm not sure where the time has gone. I finished work on July 30 and have been very busy getting lots of things done around the house before the new arrival. His room is about 90% complete and thanks to Gramma Phyllis taking Joey to his physio group every Thursday and Friday morning I've gotten some bigger projects done too. I'm bracing myself for life with a "typical" newborn, I know we were very spoiled by Joey's infancy. He was such an easy kid, he woke through the night like all babies but would just eat and go back to sleep. He was content all the time, and I'm nervous that this new baby won't be as easy!

Tuesday I have another NST at the hospital, followed by a bio-physical profile ultrasound.I'm excited for the ultrasounf for a few reasons...I've never had an ultrasound past 24 weeks with either pregnancy so I can't wait to see the little guy! I also want to confirm for the 6th time that he really is a boy and not a girl. Most importantlythey are going to be checking the baby's muscle tone, something I didn't realize could be accurately assessed in utero.Apparently it takes a great deal of muscle tone to maintain the fetal position and that's what they're going to be looking at. It would have been so interesting to have had an ultrasound of Joey at 35 weeks....

That's all for now. Hopefully next week I'll have an ultrasound picture to share!

- P, J & J

Big, Big News!

2009-07-23T08:35:00.006-04:00

Joey has started walking! Well, not completely, and certainly not independently, but it's definitely a start and much more than he's ever done in the past. Thanks to Gramma's hard work (and I suppose Joey's too!) she discovered that he will now take steps with the only support being someone holding his hands. You'll see in the video he's still very unbalanced and there's no way he could do it without hand-holding, but it's thrilling to see such progress regardless.

Here's a little clip from the playground outside of IKEA, we were there last night and thought we'd let him "stretch his legs" before getting back in the car to head home.

Gramma is such a pro she can do it with holding just one hand, but Jason and I aren't that advanced yet. I'll capture the one-handed walking on video soon.

The best part is that he is HAPPY while doing this, not crying like he has in the past when we made him work. I think he is starting to understand how much fun it is to be up on his feet!

More updates to follow, we've had progress in other areas but I wanted to get this most exciting news posted ASAP!

- P, J & J

Quick Pregnancy Update

2009-07-02T12:48:00.005-04:00

I received a call from the nurse at Mount Sinai hospital...it appears my bile acids are now starting to increase, up to 14.1 from 12.9 in May, despite an increase in the medication last month. Not devastatingly serious, but certainly explains the increase in itching over the past few weeks.

I also failed my glucose test, which means I now have to take a 3-hour glucose tolerance test and this likely indicates that I have gestational diabetes yet again. My level was 9.9, and normal is up to 7.8. Apparently anything above 7.8 identifies 90% of patients with gestational diabetes.

So I will have to take the 3-hour test sometime over the next week, and I'm going to have to increase my medication for the cholestasis from 3 x/day to 4x/day. I can go as high as 5x/day at my discretion, anything more than that I have to discuss with my OB.

Other than that this baby seems to be doing fine...lots and lots of kicking, usually at the worst times but that's okay, it's reassuring me for now. I believe that now that I'm in my third trimester we will begin weekly non-stress tests at some point. My next appointment with my local OB is July 16, and then I meet with my high-risk OB at Mount Sinai July 23, along with another high-risk OB that specializes in liver problems during pregnancy. We're hopeful that the 23rd will be the last time we have to travel to Mount Sinai, if the high risk OB is still comfortable with my local OB following me until delivery.

That's all for now,

-P, J & J

Joey Graduates Preschool and Other Stuff

2009-06-29T21:27:00.008-04:00

Joey and Gramma Phyllis graduated from Preschool last week. This is no small feat! After attending one day per week from October to June the progress Joey has made is astounding. His initial fear of other children has all but vanished, he finds other kids interesting rather than scary and can be left on his own for periods of time to explore and be independent.

None of this would have been possible without Gramma...she attended faihfully every week, and it was A LOT of work. The school is in a church basement with stairs...lots of stairs, and Gramma was solely responsible for Joey's mobility so it involved a lot of carrying. Joey's needs are too great for him to attend this preschool without assistance, so without Gramma Joey would have missed out on this amazing opportunity because the funding for mediators has been both cut and frozen, we could not have afforded to pay someone $15 an hour all year to accompany Joey. So a big THANK YOU to Gramma, we couldn't have done it without you!

Here's Joey with Gramma coming down the "red carpet" to get his diploma:

Joey and Gramma accepting the diploma from his teacher, the wonderful Mrs. V.

Joey and Gramma sitting proudly with the rest of Joey's class

Joey and his classmates. He's the second from the left in the front row. That's right, the one who is much more interested in his neighbour that anything else :)

Next year Joey will be attending a different preschool in preparation for the transiti0n to junior kindergarten in September of 2010. This new school feels they can handle Joey without a mediator, which is the next big step. Gramma is going to attend with him for the first few weeks as I'll be busy with a newborn but the goal is that by October we will be dropping Joey off and picking him up, not staying with him throughout the class. I know he can do it and I'm so excited for him to experience this independence from family members, a HUGE step!

In other news:

At the beginning on June Jason and I took what will likely be our last trip to Vegas in a loooooong time.

In all the times we've been to Vegas (6 for me, 5 for Jason) we've never actually had our picture taken with the sign.

Jason in heaven...Star Trek slot machines!!!

The friendliest slots in Vegas, the progressive Elvis slots. They move around Vegas from casino to casino, we actually had to research where they were before we left. We found them safe and sound at Planet Hollywood. The progressive hasn't been paid out since 2006 and I thought for sure it was waiting for us, but no such luck.

I was so excited to be in Vegas during their extremely hot weather so I could use the pools, but this is the crowd we encountered. Even thought he pool "complex" was huge, it was wall to wall people like this everywhere.

Ahhhh, the best sign to see when on vacation. I love visitng the US but am always so happy to be returning to the best country in the world.

And last but not least, on to Joey's latest discovery..."singing". It's very cute, but very loud and once he starts he goes on, and on, and on.... Here's just a sample. I warn you, turn your volume down :)

Ouch!

2009-06-17T15:46:00.003-04:00

Poor kid can't catch a break. On Sunday night Joey was bitten by a mosquito at the outer tip of his eyebrow. All seemed normal until Monday night when it started to swell, and this is what he looked like when he woke up on Tuesday morning:

Other than some rubbing he didn't seem that bothered by it, but the delayed reaction caused us some concern. So Tuesday morning we went to see the nurse practitioner and the doctor and after a thorough examination we decided to take a wait and see approach, as our clinic tries to be as medication-free as possible. Just a dose of Advil to bring down the heat and swelling and we were on our way.

He's definitely looking better today, though it's not completely gone. We have been told it could take up to a week for it to resolve completely! Next week is nursery school graduation so I'm hoping it's gone by then...

- P, J & J

New Pictures

2009-06-14T18:07:00.003-04:00

Not much to update... Joey's little brother is developing well, everything seems to be stable right now. Our last visit to Mount Sinai on the 3rd was very quick...Dr. R said he is comfortable that we've done all of the investigations possible and everything appears to be normal at this point, short of doing an amnio we've pretty much done everything we can. I go back one more time to meet with him in 2 weeks, and then another specialist on July 15th (she specializes in liver problems during pregnancy) and if all goes well he is happy to have me followed by our regular OB and deliver locally, which is great news! I'm still marginally itchy but the medication seems to be doing its job. I know I'm not out of the woods yet, my third trimester starts at the beginning of July and I expect it to get worse then.

Joey is doing very well. Still no huge progress towards walking but we're trying to be patient and celebrate the little things. Today we went to visit Papa Roy and play with the little toy tractor Joey's nursery school has lent us over the summer. Jason and I had never seen him on it before and were so pleasantly surprised at how well he balances and moves on it:

Yesterday was his nursery school's year-end picnic, we found some cool equipment on the playground that he really enjoyed, especially this little flower that spins:

Hugs from Mommy on the teeter-totter:

Nursery school comes to an end in 2 weeks, so Gramma gets a break over the summer. Tomorrow we're touring a different nursery school that may be better able to accommodate Joey in the fall, though I will be very sad if we have to leave the one he's at, they've been so great to us.

- P, J & J

It's Definitely a BOY!!!!

2009-05-20T16:11:00.002-04:00

That was the longest ultrasound I've ever had...the tech did a complete anatomy scan, which took 40 minutes, then came back and asked to take a few more pictures, which took another 10 minutes. After that the doctor came in, another 30 minutes of ultrasound, then he wanted to switch rooms/machines so he could look at something more closely, that lasted another 20 minutes. I guess when you have a child with unexplained disabilities people want to make sure they don't miss anything!

Anyway, the doctor couldn't find anything left of the cyst on the brain, which is great. He did however find a calcification in the abdomen, near the liver, but says it's like the cyst...if there are no other anatomical problems (like clenched fists, short femurs etc.) it means nothing. Anyway, for some reason I find it less concerning when it involves the liver and not the brain. And I have a feeling that if everyone had over an hour and a hlf of ultrasound scrutiny performed on their unborn children there would be a lot more "cysts" and "calcifications" found!

He said everything else about this baby looks perfect, and I'm measuring within a day of my due date. All in all it was a very good day!

G-Tube is a No-Go....For Now

2009-05-19T17:00:00.003-04:00

Today we met with a nurse practitioner and a doctor in the G-tube clinic at Sick Kids Hospital in Toronto. Definitely a worthwhile trip, it was extremely informative and really helped us to get down off the fence and make a decision.

Jason and I have decided that at this time a G-tube would essentially be trading one aspect of Joey's quality of life for another. We honestly thought that G-tube feeding would be easier and faster than what we deal with now. The nurse practitioner and the doctor were both amazing, and they described everything involved from start to finish. Each feeding would require Joey to be kept still and quiet for about 40 minutes to feed him one can (237 ml) of Pediasure. That would likely involve keeping him strapped in a chair for that length of time, at a minimum of 2-3x/day in order to increase his caloric intake from what he currently consumes. 1.5 hours strapped in a chair per day? I think not! The other option was overnight feeds, which would be tricky because of how active Joey is, and would also involve monitoring throughout the night, you can't just hook himup and go to bed. Fiddling with the tube,pump etc. after he falls asleep would disturb his sleep, not to mention ours. One of the most amazing things about this kid is his very solid, regular sleep pattern. Since 15 months old Joey has slept through the night, usually 10 hours, without waking. Do we really want to mess with that?

So after much consideration and discussion we have decided to put off the G-tube...for now. Right now Joey is eating very well, unlike 2 months ago. Things may change, and they now have a file on us and we can change our minds at any time. The doctor was very much in agreement with our decision. He told us that many of the kids that come through their clinic are just black or white in regards to making this decision, and he agrees that Joey is in a grey area. We did talk about a less invasive alternative, which is appetite stimulants. He seemed to know a lot about these medications and will consult with our pediatrican about it further. We may be able to try this the next time Joey's feeding takes a turn for the worst, and maybe it will get him back on track more quickly.

So right now I'm in the hotel Starbucks while Joey and Jason take a little nap. We're staying at the Hyatt downtown Toronto, which is lovely and has just been renovated. We have a great view of the CN Tower from our room on the 15th floor and tonight we're going to be tourists and take Joey up to the top of the tower. Mount Sinai and Sick Kids is about a 25 minute walk from the hotel and the weather is gorgeous, not too hot and not too cold. It's turned out to be a great day, we're really happy we decided to stay in town for the night.

Tomorrow morning at 8:30am is my level 2 ultrasound. I'm hoping that the doctor won't find any trace of the cyst and that we find out if this is a boy or a girl! Right now the baby is hiccuping up a storm, just like his/her older brother did when I was this far along, which is why I'm here typing instead of napping with the family.

Wish us luck tomorrow!

- p, J & J

Good News, for a Change

2009-05-14T15:47:00.005-04:00

Just a quick update...I received a call from the nurse at Mount Sinai with some of my blood test results from last week. My bile acids have gone down to 12.9, which indicates the medication is working somewhat. It's still above normal but lower than the 15 it was measuring a month ago. My other liver function tests are still relatively normal, with the exception of a slightly elevated billirubin (if it gets too high it results in jaundice).

The risk for the baby to have Down Syndrome is 1/34,800 and the risk of Spina Bifida is 1/19,000, both very low risk, these stats are "the best they can get", according to my regular OB, Dr. S., who I saw on Friday. His response to the choroid plexus cyst? "Who cares?" were his exact words. He said that because the rest of the ultrasound was normal, and my Down Syndrome, Spina Bifida and other test numbers are so high, there is no reason to worry. He also said that when he worked at London Health Sciences Centre a number of years ago they wouldn't even mention these cysts on ultrasound reports if no other abnormalities were found, because they are almost always insignificant. He really does have a way of putting things that makes me feel a whole lot better. I'm haven't stopped worrying 100% and probably won't until this baby is born, but I do feel much more confident that this baby is healthy.

This Tuesday is Joey's appointment at Sick Kids in Toronto for the consultation with the G-Tube clinic, and Wednesday morning is my appointment at Mount Sinai for the level 2 ultrasound. We're going to make it a mini family vacation and stay downtown Toronto for the night, go out for dinner and find something fun to do with Joey. Hopefully I'll have great news from both appointments on Wednesday!

- P, J & J

This kid is messing with my head

2009-05-11T16:37:00.004-04:00

Joey and I travelled to Vaughan today to a 3D ultrasound place, hoping to determine the sex of this child once and for all. After 20 minutes, one Grande Iced Mocha from Starbucks and 2 Pop Tarts later, this baby would NOT uncross its legs! The tech said her best guess was that it was a boy, but wouldn't commit to anything. She said the cord was a bit in the way, and while she *thought* she caught a glimpse of a penis she just isn't sure. Now keep in mind, this place is not a medical clinic, they do this for a profit, so the last thing they want is to tell someone they have to come back to be sure, since a repeat visit is free, so if she was sure she absolutely would have said so. Here is the picture I got today, which she was very reluctant to give me as she feels it's "misleading":

Joey quite enjoyed the ultrasound, and was very interested in the black and white images on the big TV. When the tech would switch to 3D the colour changed to a more sepia-like tone, and he would lose all interest. As soon as she switched back to 2D he was glued to the screen!

I have a gut feeling this baby is a boy, and have decided that I will decorate the nursery in green, just in case my gut is wrong :) A week from this Wednesday is my level 2 ultrasound with the doctor at Mount Sinai, so hopefully this baby will uncross its legs by then. Of course I''m a bit more concerned about the cyst on its brain, but the issue of its sex has been a nice distraction from the worry.

- P, J & J

Happy Mother's Day

2009-05-10T17:30:00.005-04:00

Nothing new to report. I just wanted to share this article from the LA Times that was posted on a special needs parenting board I frequent. So timely, and all so true.

Happy Mother's Day to everyone!

These moms know true love
Mothers face tough challenges in raising children with disabilities, but there are rewards in the role.

Deedra Williams doesn't need breakfast in bed or a spa massage to celebrate Mother's Day tomorrow. She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities.

They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.

And everyone knew better than to interrupt, criticize or offer advice.

"No one tried to fix it here," explained Williams, a mother of two sons -- a "developmentally typical" 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.

"We can relate to what each one is going through because we're all in the same boat," Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.

"What I took away from this weekend," Williams said, "is acceptance."

And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.

Raising a disabled child requires a sort of hyper- vigilance. "Motherhood amplified," Nina Loh called it, describing life with her 7-year-old twins -- a "typical" daughter and a son with spina bifida, who has had 13 surgeries and may need more. "The stakes are so high. And there's really no end in sight."

Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering "Healing the Mother's Heart" retreats six years ago, to give women a safe place to vent "the anger, the guilt, the joy . . . all the feelings."

Smith's first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to "walk, talk, sit, use his hands or feed himself," she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.

I asked Smith if she felt cheated, robbed of some of the joys of motherhood.

Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, "when I hear my friends talking about what their kids are doing . . . going off to college, getting married."

Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers.

"I never wanted to be different," said Eileen Sunderland, whose 7-year-old son has autism. "I wanted to fit in. . . . But you can't go to lunch with all the moms at preschool. You can't meet them in the park, because you always have a therapy appointment or a doctor visit to get to."

And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you're trying to get your son to stop flapping his hands like wings.

Still, some said their children's diagnosis provided an odd sort of relief -- a validation of a mother's instinct that something was wrong, or a vindication of their parenting.

"I thought I was an inadequate mother," recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. "I wondered 'Why am I so stressed out? Why can't I take my boy to the market?' Other kids sit in the cart and behave. There must be something very wrong with me."

For others, the verdict triggered fear, panic and disbelief.

When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell "was hyperventilating into a paper bag for 10 minutes."

Gosnell had every prenatal test her doctor offered during her pregnancy, "because I did not want a child with a disability," she said. "I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids."

But children can stretch a mother's boundaries.

Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, "Mommy, I want to teach you a magic trick." Tears spilled down Gosnell's cheeks as she shared the story. "Her progress has been so astounding in the last seven months, and everybody agrees it's because I'm home working with her. . . . I've learned about patience and love and how to give myself to someone else."

And about how important a mother is to her child.

I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me -- a "see, it could be worse" reminder to count your blessings this Mother's Day.

But it was their spirit, as much as their stories, that took me down a different path.

The way every description of a child's disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.

The way they never labeled their other children "normal," just "developing typically."

How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter's tattoo and appreciated her sense of humor more. Or focused less on the "C" in statistics class and more on the hard work she put in to earn even that.

These women are not saints or martyrs. But they see gifts where others might see only hardships.

"Write this column for them," Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges. "We're not special," she said. "We're just human beings, doing what we do with love."

Just like every other mother.

Gender Confusion, Among Other Things

2009-05-06T20:21:00.003-04:00

Lots to update! It seems this blog has temporarily shifted from Lessons from Joey to Complicated Pregnancy Updates.

First off, I had my 19-week anatomy ultrasound on Monday. I told the tech we already knew the sex, so at the end she said it was a boy. WHAT?! We've been planning on a daughter for the past 4 weeks! She told me this before Jason came into the room, so of course he thought we were joking. The tech showed us what is supposedly a scrotum and penis, but to be honest, I just didn't see it. With Joey is was extremely clear, I didn't question it at all because it was so obvious. This time, not so much. And the first tech was so sure it was a girl! So the jury is out for now,thank goodness we haven't gone overboard with the shopping or decorating! Not being able to stand the suspense I've booked a 3D ultrasound next week, so hopefully we'll have it confirmed one way or another :) Boy or girl, we don't care, except for two things...boys are statistically more likely to develop "issues"" like Joey, even my OB says that boys really are the weaker sex in that regard. I did feel a sense of relief when I was told it was a girl, so a bit of panic has now set in. The other thing is a name...we have NONE for a boy! Not one that either of us even kind of likes. This is going to be tough.

Today Jason and I went to Mount Sinai Hospital to meet with a high-risk OB at the Special Pregnancy Program. We had to give all of our history again, which were of course accompanied by the sympathetic looks and obligatory words of condolences. This is often an issue when Joey isn't with us as I think people get a picture in their mind of what a non-verbal, deveopmentally delayed 3-year-old who doesn't yet walk must be like. They don't actually see the happy, smiling, social, sweet, easy-to-please and affectionate little boy that Joey is. I often find myself thinking (if not actually saying) ''it's not as bad as you think!!!''

Anyway, the doctor was fantastic and basically reiterated what my regular OB has already said...yes, I have had multiple complications but none of them, in isolation or in combination, is likely the cause of Joey's disabilities. He, like everyone else, is stumped but feels from our history that everyone has done everything right, ordered the right tests, investigations etc. to determine a correct diagnosis, but it really looks like we're just a part of that 3% of the population who has a disabled child with no explanation. Regardless, he does think that my previous complications warrant being followed by him, and he even feels I should give birth there rather than at our local hospital. I didn't like that idea at first but then I started thinking about how in addition to Mount Sinai there are 3 other world-class hospitals in 2 city blocks (including Sick Kids) so why would I turn down that kind of care???

We reviewed my test results for the cholestasis. A normal reading for bile salts is 4. High is 8. My reading at 10 weeks was 15. They've seen as high as 40 and above, and in his experience there have been little complications as a result. He's happy I've started the medication already and will continue to monitor me closely, along with my regular OB. Today he ordered another blood test to see where my levels are, hoefully they've come down as I've been on the medication now for 3 weeks. I'll call at the end of the week for the results. The doctor is also referring me to another high-risk OB that specializes in liver disorders during pregnancy, for another consult.

And now for the scary news...This doctor, Dr. R, also received the results from Monday's ultrasound while we were there. It shows a choroid plexus cyst on the left side of the brain. Often a soft-marker for Trisomy 18 (babies with Trisomy 18 rarely live past one year, if they make it to birth at all), it can also indicate absolutely nothing and resolve on it's own, a much more likely scenario. According to the rest of the report, they weren't able to get the best anatomy scan because baby wasn't cooperating with his/her positioning, but from what they could see everything else looked normal. That fact, combined with the negative results from my first trimester prenatal screen, certainly lowers the risk that this is Trisomy 18 but doesn't eliminate it. So I go back to this hospital for a high-level U/S performed by a doctor (usually they are performed by a tech) in 2 weeks. I've been told that most often, when this type of cyst is found in in the absence of any other anatomical abnormalities it results in a positive outcome, meaning the cyst resolves before birth and there are no other effects. So I'm hoping if it hasn't actually resolved that it has at least shrunk from the 8.5mm it was measuring on Monday. The Dr. who is performing the ultrasound in 2 weeks is an expert in brain and spinal anatomy, so that's comforting.

So a very eventful few days, filled with more and more stress. I'm trying to keep calm and not worry but that's almost impossible. I just have to keep reminding myself that I have the best possible care...my regular OB, the new high-risk OB, another high-risk OB specializing in liver disorders, an OB that specializes in fetal brain and spinal anatomy scans, my family doctor and my nurse pracitioner. I'm not really sure how many specialists I haven't seen! Dr. R. called me "an interesting connundrum" and seems genuinely concerned, I feel like this baby and I are both in very good hands.

P, J & J

Let the Complications Begin

2009-04-17T23:06:00.005-04:00

Today was my second appoinment with the wonderful Dr. S, my OB/GYN. The good news from the appointment is thatso far it doesn''t appear I am developing gestational diabetes again, and I am also now feeling her kick more strongly and more frequently, all great things. But...after my last appointment at 10 weeks he ordered a bile salts test, to get a baseline to compare against later on in case I began developing symptoms of Intrahepatic Cholestasis of Pregnancy, which is a liver condition that I had during my pregnancy with Joey. As it turns out he won't be getting a baseline, because the values are already substantially elevated, indicating that it has already started with this pregnancy. It's relatively early for this to have started already which can indicate that it will develop more seriously as well.

In case you don''t know what ICP is, here is the description according to the March of Dimes:

INTRAHEPATIC CHOLESTASIS OF PREGNANCY (ICP)

What is ICP?

ICP is a pregnancy-related liver disorder in which there are abnormalities in the flow of bile (a substance produced by the liver that aids in the digestion and absorption of fats). These abnormalities lead to a build-up of bile acids (components of bile) in the mother's blood, resulting in symptoms such as severe skin itching.

What are the symptoms of ICP?

The symptoms of ICP can range from mild to severe. Symptoms usually start in the second or third trimester of pregnancy. The most common symptoms include:

Skin itching: Itching often is most severe on the palms of the hands and soles of the feet, but many affected women itch all over their bodies. It often gets progressively worse and may interfere with sleep and daily activities.

Jaundice: This yellowing of the skin and whites of the eyes occurs in 10 to 20 percent of women with ICP. Jaundice is caused by a build-up of a chemical called bilirubin in the blood, resulting from the liver disorder and decreased bile flow.
A pregnant woman should call her health care provider if she has these symptoms.

How common is ICP?

In the United States, ICP affects less than 1 percent of women.

What are the risks of ICP in pregnancy?

ICP can be very uncomfortable for the pregnant woman. It also can hurt the baby. Up to 60 percent of women with ICP deliver prematurely (before 37 completed weeks of pregnancy). Premature babies are at increased risk for health problems during the newborn period and for lasting disabilities and death. ICP also increases the risk for stillbirth, though the risk is small (1 to 2 percent). It is important to diagnose and treat ICP to help prevent these potential problems.

How is ICP diagnosed?

There are a number of skin disorders of pregnancy that can cause itching; most do not harm the mother or baby. Blood tests can tell if a woman's itching is due to ICP. These often include a blood test that measures various chemicals that show how well a woman's liver is functioning and the amount of bile acids in her blood.

How is ICP treated?

ICP often is treated with a medication called ursodeoxycholic acid (Actigall). This medication relieves skin itching, helps correct liver function abnormalities and may help prevent stillbirth.

The health care provider monitors the baby closely (with ultrasound and tests that measure heart rate) to see if the baby appears to be developing any difficulties, such as heart rate abnormalities, due to ICP. If the baby is having difficulties, the provider may recommend early delivery to help reduce the risk of stillbirth. The provider also may do a test called amniocentesis when the baby is at about 36 weeks gestation to see if the lungs are mature. If the baby's lungs are mature enough for the baby to breathe on his own, the provider may induce labor at 36 to 38 weeks to help prevent stillbirth.

What causes ICP?

The cause of ICP is not well understood. Pregnancy hormones and heredity appear to play a role. ICP appears to be more common in twin (or other multiple) pregnancies, possibly due to increased hormone levels. About half of women with ICP have a family history of related liver disorders.

Does ICP go away after delivery?

Symptoms of ICP generally clear up on their own by about two days after delivery. However, about 60 to 70 percent of affected women develop ICP again in another pregnancy.

Doesn't that all sound so pleasant? The symptoms in my pregnancy with Joey weren't really noticeable until I was about 6.5 months along. It''s also very likely that ICP is wha caused Joey to be born a month early...I was scheduled to be induced at 37 weeks due to the ICP but Joey came on his own at 35 weeks 6 days. This time is a bit different...I started feeling itchy about 2 weeks ago but said nothing to anyone, I really believed I was being paranoid and imagining things. With me it also doesn't start on the soles of my feet and palms of my hands, which is the most typical. I started feeling my back get itchy (not fun when no one is around to scratch for me!) and the front of my calfs.

So today I started the medication, which will hopefully bring my bile salt levels in my blood down to a safe level for both the baby and myself. It should also stop the incredibly annoying itching, or at least make it more manageable I hope. In the meantime Dr. S. wants me to meet with a specialist at Mount Sinai Hospital in Toronto within the next 2 weeks for further advice on treatment.

Despite receiving this bad news today I am still so happy tonight, since our sweet baby Joey will be returning from Florida tomorrow! Jason and I have missed him terribly and we can't wait to see him. Unfortunately for him the vacation ends pretty abruptly over the upcoming week, he has an appointment with the pediatrician on Wednesday and a dentist appointment on Thursday, along with all the work he has to catch up on with his physiotherapy and walker class. Poor kid, he's more schedued than we are :)

- P, J & J

G-Tube Update

2009-04-14T16:59:00.004-04:00

Today I received a call from Dr. J, the developmental pediatrician we met with in February. She was calling because Sick Kids Hospital sent her some forms regarding our consultation for a G-tube scheduled for May 19th and she needed further information from me.

When I told her of the new developments in regards to Joey's feeding she sounded quite alarmed, and said she will be calling Sick Kids tomorrow to get the appointment moved up because, in her opinion, this is now "rather urgent". She was not happy to hear that he was no longer taking any liquids at all (other than about 2oz of water in the morning and at night after we brush his teeth). I suppose there is a concern about dehydration, but I am very concious of it and know for a fact he is nowhere close to being dehydrated.

It was a bit disheartening to hear her language change from "if you decide to go ahead with a G-tube" to sounding more like this is a medical necessity, but I guess this isn't a shock. We've tried for over 3 years now to avoid a feeding tube, it has been difficult, time consuming and very frustrating. I think it's time to realize that we aren''t going to be able to fix this problem quickly, and in the meantime Joey needs to receive proper nutrition.

- P, J & J

Happy 3rd Birthday to Joey

2009-04-13T07:59:00.011-04:00

On April 1st Joey turned three years old. We didn't have a big party this year, as we were leaving for Florida the next day, but we decided to have a low-key pool-side BBQ while on vacation. I can't believe it's been three years since Joey came into our lives! In some ways it feels like yesterday, but in other ways I can't remember what my life was like without him in it.

And in keeping with the tradition he started last year, a few days before his birthday Joey went on a bottle strike. For the majority of 3-year-olds this is not a huge deal, in fact there are few 3-year-olds still drinking from bottles (I know this because of the judgemental stares I get from people while giving Joey a bottle in public). But for Joey this is a huge source of nutrition completely cut out of his diet. Up until now Joey would drink about 2 cans of Pediasure Plus (1.5 calories per ml.) from a bottle per day, one in the morning and one before bed, but now he's decided he wants none of it. Last year he replaced this with eating a huge amount of varied foods...this year, he's just increased the amount of the 3 or 4 things he already eats, namely Minigo (strawberry only), pudding (chocolate only), yogurt ("pink" flavours only) and blueberry baby food. This new phase is troublesome for so many reasons...Joey still does not feed himself at all, and does not eat a lot at one sitting, so that means he has to be fed at least 6x per day, which is time consuming, and he will only eat for a select group of people (right now that's Jason, Grandma Phyllis and to a lesser extent, me). Joey's caloric intake has dropped from about 1200/day to about 900/day, if we're lucky. I'm not even sure that 1200 calories a day was enough, given that he is still EXTREMELY thin and weighs less than 25 lbs at 3 years old.

So the light at the end of the tunnel, if things don't take a major turn for the better, is that we received notification that our appointment with the GI clinic at Sick Kid's hospital in Toronto for a G-tube consult is May 19. I can say for sure that if things don't improve drastically we will be going ahead with the surgery, and Joey will likely have a G-tube in place sometime this summer.

I've always said that pictures of kids covered in food were completely disgusting and should be viewed by the parents only, but since Joey has such a negative relationship with food I tend to celebrate any milestones, such as this little beauty:

Smiling while covered in chocolate pudding and strawberry Minigo...yummmmy!

Joey did extremely well on the flight from Toronto to Tampa. We had some very nasty turbulence that scared me out of my mind, but didn't bother Joey and actually seemed to act as a tranquilizer on him:

Joey also got a chance to sport his new fancy schmancy Superman swimsuit on the beach, courtesy of Zia Jodi and Uncle Jason for his birthday:

Last but not least, while we were in Florida decided to go ahead and get an "elective" ultrasound, something not readily available here in Canada. This was for the sole purpose of finding out the sex of this baby, since I am one of those people that would find out the sex at conception, if there was a way to do so. I was 15 weeks exactly, and the person doing the ultrasound said right away that this baby, much like her older brother, put her goods on display immediately and she could tell us that it's a GIRL! Joey is getting a little sister :) Here are some of her first pictures:

Umm, apparently since there's nothing "pointing back" towards the arrow this indicates that the baby is a girl. I'll just have to trust them on that one, since this just looks like a messy blob to me.

Now this one at least looks like an outline of a baby :)

So Joey is still in Florida with Grandma and Papa Roy for another week, lucky guy. We're both enjoying some lazy time but I miss the little guy terribly. Only 5 more sleeps!

- P, J & J

We're Still Here

2009-03-10T15:52:00.009-04:00

I had to take a bit of a hiatus, this pregnancy is kicking my butt! It is infinitely more difficult being pregnant when you already have a child at home, especially when that child has extraordinary needs. Add working 4 days/week, a nasty case of all-day sickness and exhaustion like I have never known and you get a pretty good idea why I just haven't had time to update our blog.

The good news is that this pregnancy is completely different than my pregnancy with Joey in almost every way. As of Monday I will be exactly 3 months along, 1/3 of the way there! The sickness is fading away, thank God, and the exhaustion seems to be subsiding a little bit. I had my first OB/GYN appointment last Monday...Joey and Jason both came with me and got to hear the baby's heartbeat for the first time, very exciting! I was surprised to hear it at 10 weeks, They couldn't find it with Joey until after 13 weeks. Normally you don't get referred to an OB/GYN until 28 weeks, until then you are just monitored by your family doctor, but they have classified me as "high risk" because of Joey so I was referred right away. Our OB, Dr. S., is AWESOME. Very understanding, very thorough and says all the right things to make us feel at ease. Last week he decided I should be referred to a high-risk OB at Mount Sinai Hospital in Toronto, just for a second opinion and to talk about perhpas doing a c-section this time, and possibly even an amniocentecis.

I have opted for the Integrated Prenatal Screening, which involves an ultrasound and bloodwork at 12 weeks to determine if there is an increased risk of some disorders like Down Syndrome or Spina Bifida. Of course I had all of this with Joey (minus the amnio) and all tests came back completely normal, so while they are great for detecting some things they obviously can't detect everything. As I've said before, we don't actually know what is wrong with Joey, so there is no way to test for it with future kids.

On to Joey news....what do these three things have in common???

They are the first non-fabric objects Joey has brough to his mouth and chewed on completely on his own. Maybe not a huge feat for most kids, but given that Joey has NEVER voluntarily brought anything other than fabric to his mouth this is a very big deal.

We've made some slow but steady progress with the walker as well. Here is a video of Joey in his walker about 2 months ago....he didn't really "get it", couldn't control it and didn't understand how to move himself around:

Here is a video taken about 3 weeks ago in the gym during physiotherapy. Again, HUGE progress for Joey! He can actually steer himself to where he wants to go, in this case it was the wooden rack with the velcro bells, which he loves:

In other Joey news we had an appointment with a Developmental Pediatrician, Dr. J. (we've been pretty lucky so far not to have more than one doctor with the same last initial!) on February 19. She spent about 2.5 hours with us but couldn't really offer anything further in regards to our search for a diagnosis. She will be changing his working diagnosis from Global Developmental Delay to something like Intellectually Disabled, which implies a more permanent condition. The Hypotonic CP label will stick for now, even though everyone unanimously agrees he likely doesn't have CP at all. It's best to get as close to an accurrate diagnosis as possible to save us time...right now we have to re-apply for a lot of things, like the disabled parking permit and money for a mediator, every few years because his current diagnosis doesn't necessarily mean he is permanently disabled, lots of people with CP go on to get a PhD, and many people can outgrow a global developmental delay. Dr. J. has recommended a follow up MRI to be done at Sick Kids, as well as a consult at Sick Kids for a G-tube. We're still not sold on that idea but we're willing to go for a consult.

Last but by no means least, in honour of my Grandmother who passed away Febraury 26, 2009, here is a picture of her with Joey when he was a newborn. She was the only Great-Grandparent Joey ever got to meet. She loved babies so much, and I am so sad she will not get to meet this new baby in September. But she did know we were expecting. I was able to visit her 3 days before she passed away, and when my Aunt reminded her I was coming and that I was pregnant my Grandmother told her that she was "praying for this baby to be healthy", so we're in safe hands.

We love you, Grandmere xxxxxxx

That was Fast!

2009-02-01T13:47:00.004-05:00

Joey is going to be a big brother! Apparently all we have to do is think about having a baby and it happens, for which we are very thankful but also very stunned. We knew what we were doing but really didn't expect for it to happen so quickly, so it took some time for us to adjust.

Joey's new sibling is expected to make an entrance around September 28/09. Of course we are thrilled but also terrified, this is going to be a long pregnancy filled with uncertainty and stress and worry. Because we don't know why Joey is the way he is we also don't have any way of knowing the odds of having another child with the same issues. We've been given the same odds as anyone else....5%

There are also the logistics of having Joey and another child, who we will assume for arguments sake will be "typical"...how on earth am I going to be able to carry a 3-year-old and a newborn everywhere? How am I going to carry Joey around when I'm 8 months pregnant? It's not as though it's just the occasional picking up and carrying, it's any time we need to leave where we are! Living in a 4-level sidesplit house doesn't hlep much...It's basically going to be like having twins...both will need to be fed, both will need to have their diaper changed, both will need to be carried everywhere.

But then there is the fact that Joey will have a little brother or sister to learn from, and that child will be so blessed to have Joey as a big brother. I'm excited about having a newborn again, I know a lot of people prefer the one or two year old stage, but I am truly a baby person.

So, boy or girl, Jason and I are excited to welcome the second, and last, baby to our family. Joey doesn't have a clue what is going on but I know he will love having a sibling.

- P, J & J

RSV

2009-01-16T08:58:00.002-05:00

After a chest X-ray and a thorough examination by our family doctor it has been determined that Joey doesn't have croup or pneumonia, he has bronchiolitis caused by RSV (a common respiratory virus in kids). He hasn't gotten any worse, and Advil seems to calm the coughing well enough. He's missed nursery school this week, along with his very first walker class which started yesterday, since he would have been around other kids and I didn't want to be "that" Mom who exposes her sick kid to other kids, but today he has physiotherapy and we're heading out soon.

This poor kid just can't catch a break! It seems like we've been on a cycle since October of two weeks sick, one week healthy. Luckily Jason and I have avoided catching this one, it's no fun caring for a sick kid but it's REALLY no fun if we're sick too. So hopefully he'll continue to improve over the weekend and be ready to go back to nursery school next week.

Joey still hasn't met his new cousin, but hopefully he'll be well enough by Sunday so Jodi and Jason can bring him over for a visit. I can't wait!

- P, J & J

Nostalgia

2009-01-14T07:55:00.005-05:00

I'm all warm and fuzzy about Baby Ty wearing some of Joey's newborn clothes and of course I had to take pictures. This is an outfit that my mom bought for Joey, he didn't fit into it until he was about 6 weeks old. He weighed 6 lbs 11oz at birth:

And here's Ty, 7 lbs 3 oz at birth, fitting into the same outfit right away!

I remember when Joey was born and all of the medical professionals going on about his "low muscle tone", and me, not having anything to compare him with, thought they were all crazy. I kept saying "but he's just a baby! He's not going to sit up on his own or anything!" but then I dressed Ty the other day and wow, did I feel the difference. That resistance in his little limbs, where you gently have to pry the arms and legs down to get them into the clothes...Joey really never had that. he was my little dolly, I could get him easily into anything because he was so loose and floppy. Now I get it.

So my poor baby is dealing with the croup I think. I took him to the doctor on Monday and she suspected early stages of croup or even possibly pneumonia, but it wasn't bad enough to send me rushing to the hospital. The Doc gave me a requisition for a chest x-ray and told me to take him in if he got any worse. Well, it's officially worse. He coughed so badly last night that it triggered his extremely strong gag reflex and he threw up his dinner. He has been coughing all night but like the sweet kid that he is he didn't complain, just fell right back asleep each time. I'm still waiting for him to wake up in order to decide about bringing him in. It's -31 here today, so I don't look forward to bringing a sick kid out in this weather. And then there's the method of x-raying the chest of a small child...he's had it done once before and basically they put his arms over his head and enclose him in a big tube sitting upright, with this plastic case snapped tight around his chest to keep him still. Ugh. Jason calls this machine the "iron maiden" and really, it does resemble some sort of torture device. Joey was only 7 months old when he had it done last time and I remember him bawling and me bawling, it was awful :(

Wish us luck!

- P, J and a croupy J

Joey's Cousin is Here!

2009-01-12T06:26:00.003-05:00

Baby Ty made his entrance to the world 10 days late on January 10, weighing 7 lbs 3 oz!!! Jodi had a rough labour which ended up in a c-section, but Ty is absolutely perfect and Jodi is recovering amazingly well. We are so excited to welcome him to the family! Jason and I are officially a Zia and Zio (aunt and uncle in Italian). We went and visited last night and met him for the first time, he is incredibly adorable and very laid back. Here are some pictures of the new little guy:

The lighting in the hospital room wasn't the greatest to work with, so he looks a bit more red and his hair looks much darker than it is in person. I ended up changing most of the pictures to black and white to minimize the redness so you could see how truly adorable he really is!

Unfortunately Joey hasn't met Ty yet, and probably won't for a few days. He's not feeling the greatest, and with Papa Roy having pneumonia and Gramma Phyllis coughing a lot too I'm worried he may have something contagious so he'll have to wait until he's better to meet his new cousin. I have a doctor's appointment for myself today, and while I generally don't run to the doctor's office for every sickness Joey gets (and he's had A LOT of colds since starting nursery school) this one is accompanied by a fever that spikes pretty high at times, so I think I'll get him checked out just in case if he wakes up again this morning with a fever.

Welcome to the world Baby Ty!

- P, J & J

Happy New Year!

2009-01-04T21:52:00.003-05:00

Now that I can see how many visitors come to our blog regularly I feel the pressure to post more often. Life is now in a bit of a lull, so I have time, but I know we'll go back to the craziness soon. It feels like the holidays officially end tomorrow and then we can all hunker down for a long winter. Normally I would hate this time of year, such a long stretch until April when we go to Florida, but there's so much to be excited about!

First, Jason and I will be a Zia and Zio very soon (aunt and uncle, in Italian) and Joey will be getting his first cousin. I honestly expected this baby would have been here by now, but we're all still waiting anxiously.

Second, we're going full-steam ahead with plans to have baby #2 (second and definitely last baby for us). I hope we're blessed like we were with Joey, there really wasn't much work involved in his conception...we were married at the end of March 2005 and I was pregnant by July!

It feels like our entire world has done a complete roundabout in just under a week. I'm looking forward to getting back into our normal routine, and to welcoming a new member to our family sometime in the future, something I couldn't say for sure just a week ago. It's a gamble, since we really don't know what's "wrong" with Joey, but we're usually pretty lucky...we did get married in Vegas after all. And how could we not have another child, look how gorgeous the first one is:

We DO make beautiful children :)

- P, J & J

Cheers to 2009!

2008-12-31T12:40:00.003-05:00

Well, my one Chirstmas wish came true today...I received a call from our geneticist with Joey's results for the Congenital Myotonic Dystrophy test....NEGATIVE!!!!! Phewf, I feel like a giant elephant is no longer sitting on my chest!

This puts us right back to where we were before, with no answers, but there is one difference....our quest to "label" Joey definitively is going to be taking a major back seat at this time. We certainly can't rule out future tests, but at this time we are no longer actively seeking a diagnosis.

It is entirely possible that there is an as-yet unnamed, undiscovered genetic condition that Joey has. It could be discovered 10 years from now, we don't know. But for now we will carry on treating Joey symptomatically and developmentally, and hopefully one day we can give him a sibling. At least the option is no longer off the table :)

We wish you a happy and healthy New Year, I know we are very much looking forward to ripping 2008 off our calendars and starting fresh in 2009!

- P, J & J

Caught on Tape!

2008-12-30T19:31:00.004-05:00

Well, Joey stood twice for us yesterday at home, and I thought it would be a while before I could catch it on tape. Today Joey went to Gramma and Papa's house, and I got an email around lunchtime telling me that he stood up EIGHT times! So of course when I went to pick him up I brought the camera and thought I'd try to get a video, and our boy never disappoints. Here it is...it's not mechanically "pretty" but it's a start!

And another quick video to illustrate why it is so difficult to catch him doing anything on tape, as soon as he knows the camera is on him, well...you'll see:

So I guess Joey just couldn't let 2008 pass into 2009 without giving us something big to celebrate. What absolute joy this child brings to our lives :)

- P, J & J

A Lovely Day for a Walk

2008-12-29T10:59:00.006-05:00

The weather here is perfect for a winter walk...sidewalks are clear, blue skies, no wind and temperature hovering around freezing. Joey and I have been sick off and on but are both finally better today, so I thought the fresh air would do us some good. I hauled out the heavy-duty snowsuit I snagged on Ebay last year, it was about $139 brand new in the stores, I got it for $35 and it was in brand new condition, score! Last year it was pretty big on Joey, but still functional, but this year it fits perfectly. So I used the "2 years out of a $139 snowsuit that I paid $35 for" argument to justify my Ebay addiction to Jason :)

So here are some pictures from our walk today:

Not too impressed at the beginning...

But by the end it was all smiles :)

Here are a couple of pictures of downtown Barrie, taken from the edge of the hill we live on. The rain did a number on the snow, there's almost none left!

It's so much prettier in the summer, but it's neat to take a picture like this in late December and see the bay all blue, instead of frozen over and with ice fishing huts everywhere. Ah, global warming...

- P, J & J

Another Down, then a Big Up! (quite literally)

2008-12-28T18:01:00.005-05:00

Well, the holidays have come and gone, and they definitely felt quite a bit different this year. Frankly I'm relieved they're over...not that they were miserable by any means, just a bit tough.

I thought by this, Joey's third Christmas, he would maybe start to "get it" in regards to the whole concept, and maybe even open up a gift or two unassisted. Not this year, but I still say "not yet" over "it will never happen". Maybe that makes me a bit optimistic, but that's a label I'm okay with since it's not one I'm very familiar with and it seems like a nice one to enjoy.

It's hard getting excited about a holiday when, prior to having a child, one of the great things to look forward to was seeing the holidays through the eyes of a kid, which would definitely bring new meaning to Christmas. December 25th was just another day to Joey, perhaps a bit confusing with all the tearing of paper, empty boxes to explore, a giant tree in the living room and lots of people around eating lots of food. So now we have to adjust our expectations and see the holidays in a completely different way. We'll get used to it, I'm sure of that, but this first one after the realization that we won't have "typical" Christmases in the future was just a bit rough.

Now, on to our incredible "up"... The three of us were in the basement, watching a show called "Till Debt do us Part" (great show, by the way) and they mentioned the divorce statistic being 50%. That then led Jason and I to discuss how it is so much higher for parents of special needs children (75% to 85%, although some research disputes this claim), and how unfortunate it would be if that were to ever happen to us, since there is no other person on the planet besides the two of us that TRULY understand what raising Joey is all about. We feel pretty lucky that in our case I think Joey has made us stronger as a couple, and we make a pretty good team.

Anyway, as we're having this discussion about the stresses of having a child who is delayed and how it had been a while since we had seen any major progress towards a new milestone I was holding the TV remote, and Joey was playing on the floor. Joey LOVES the TV remote, saw it waving around in my hand I suppose, scooted over on the floor and kneeled up to try and get it out of my hand. This is nothing new, he does it all the time. The part that had us both in tears of joy was when he then brought one leg up underneath himself, then the other, and then he was STANDING at the couch, completely on his own! I did not help him in any way, it was totally spontaneous and independent, almost like he heard our conversation and decided to show us yet again at the perfect moment that he is always working hard to do new things. My stomach flip flopped all over the place, we were astonished and silent, not knowing what to say or do. After about 10 seconds he leaned back and fell on his bum back on the floor, and then proceeded to scoot away and play with another toy, as though nothing unusual had happened. I burst into tears, and Jason was laughing hysterically and kept saying "good boy! GOOD BOY!".

This is how it all starts with Joey. We can go to all the PT sessions in the world, and encourage him to practice to reach a specific goal all we want, but the first time he does anything it's all on his own terms. It was like that with rolling over, sitting up and kneeling, and now we are beginning with standing. Don't get me wrong, without the PT he would not have learned how to do it, but we knew the first time he did this it would be a total surprise.

That's our boy, just full of amazing surprises :)

- P, J & J

Merry Christmas!

2008-12-25T18:09:00.005-05:00

Just a few quick pictures before we head over to Gramma and Papa's for Christmas dinner:

Opening my gifts Christmas morning

A random Joey/Santa pic from the nursery school festivities.

That's Joey's cousin in that belly!!! Little Gemma or Ty is due any day now, we're all so excited!

My new wheels, care of Zia Jodi and Uncle Jason. New Leafs jersey care of Mommy and Daddy!

Merry Christmas everyone!

- P, J & J

No News = Good News? I'm Not so Sure.

2008-12-24T16:51:00.004-05:00

Just a quick update:

I called the geneticist's office yesterday and left a message for the wonderful receptionist. She called me back right away, told me that I was correct in my assumption that Dr. V has been off and still is. She asked me to call her back next Wednesdsay, but was non-committal when I asked if the test results were back. So of course my imagination is running wild, thinking they are back, it's not good news and the Doctor has to meet with us personally to discuss. I could be wrong, but the last time we went through this in February my suspicions were dead-on.

So not to be a total downer this Christmas eve, I should also mention that Jason and I gave each other our gift to each other yesterday. We got free Leafs tickets and decided to make a night of it and stay at the Royal York in Toronto. The weather was crazy, so it was a good thing we stayed overnight. Our suite at the Royal York was lovely, with a view of the harbourfront and Union Station, looking so classically Christmas with the snow falling. I can't even describe how comfortable the bed was and we both got a great sleep, followed by a fantastic breakfast buffet the next morning and valet parking to bring us our car. It was a great treat, and despite the Leafs losing 7 - 2 we had a wonderful time.

For those of you travelling this Christmas eve please be careful, wherever you are. I know the weather here is going to turn icy. I am thoroughly enjoying (okay, becoming addicted to!) the live feed on the side of this page showing where people are logging in from, some places I recognize and know who you are (Hi Tanya! Hi Sarah and Avery! Auntie Eileen? Is that you?) and others are a mystery and my curiosity is getting the better of me (Ottawa? Port Elgin? California????). Jason says I need to get rid of that thing ASAP!

- P, J & J

The Ladder

2008-12-23T07:03:00.004-05:00

I wanted to post some pictures of the ladder Patricia's husband built for Joey. Here is the "real" one that he uses at physio, which costs $450 USD:

And here is the one that Patricia's husband made. And note the little bells hanging on the rung near the top, Patricia made those for Joey as a Christmas gift:

The homemade one is SO much more sturdy, it is just so perfect. As our contribution we will sand it a bit more and stain/seal it in the spring, so that it can be added to the supply of equipment that is loaned out to other families once Joey is done with it. Every time I look at it I am just so amazed, and reminded of the wonderful people we have been meeting along the way. We are seeing Patricia today for our last physio session before Christmas, and I have a card and gift certificate for her husband as a thank you.

Tonight Joey is having another sleepover at Gramma and Papa's house, and Jason and I are off to our gold seats at tonight's Leafs game in Toronto, followed by a night at the Royal York hotel. Yay! We're very much looking forward to it, and then tomorrow the Christmas craziness begins!

No response from our geneticist as of yet regarding the myotonic dystrophy test. I emailed her over a week ago and she didn't respond, which is very unusual for her so I can only assume she is on holidays. I'm going to give it one last try and call her office this morning and see if I can find anything out, if not I suppose my goal of having the results before Christmas won't be realized.

- P, J & J

Ups and Downs

2008-12-21T09:06:00.004-05:00

It's been a pretty emotional week for me. I had planned to update a few days ago after Joey's nursery school party, but it didn't go quite as planned so it was tough to come here and write about it.

As I had mentioned before, I was so excited to attend Joey's nursery school party on Thursday, as I never get to see him there with the other kids because Gramma Phyllis takes him every week. I was the first parent to arrive, grabbed a seat front and centre with my camera ready to take some video because the kids were doing a little presentation, singing 2 Christmas songs. There was a curtain dividing the room, and as soon as they drew it back and the kids started singing I did NOT have the reaction I anticipated. There were all of these adorable 2.5 - 5 year olds, a bit chaotic as they were singing but adorable nonetheless. Then there's my Joey, in Gramma Phyllis' arms, not singing, not even standing, and Gramma is singing for him. My heart broke in two, I'm sure of it. I froze, shocked that I was not reacting the way I thought I would. I wanted the floor to swallow me up and I felt horrible for thinking that. For the first time, there was my beautiful baby boy, among a group of his peers who are "typical" and it became painfully obvious that my child is extremely disabled. Somehow I managed to make it through with a smile plastered on my face, I even made it through the little social with Santa that followed, but once I helped Gramma and Papa Roy get Joey packed in their truck (I was supposed to go grocery shopping that afternoon) and I got in my car I started bawling, and just couldn't stop. I skipped the grocery store and headed straight home.

Something inside me definitely changed that day. The denial I've been living with the past 2 years is now gone and I am right in the thick of full-on grief. Great timing, huh? I've always loved Christmas, and I still do, but this one is already pretty emotional for me. But where there is a "down", it always seems to be followed by an "up"....

Joey started working with his PT assistant "P" in October. he instantly formed a bond with her, and now it's obvious to me that she has formed a bond with his as well. I could tell you the story of the amazing things she has done for us in the past few weeks, but instead I will paste below the letter I sent to her boss, which sums it up pretty nicely:

Dear Paul,

My name is Pamela and I have a 2 ½ year-old son named Joey. He was born with hypotonia, and since his birth we have also discovered that he is globally developmentally delayed. Since then he has been assigned the diagnostic label of hypotonic cerebral palsy. We have been involved in all sorts of therapy through various organizations, first through the neonatal Follow Up Clinic, and now we receive services from CCAC, CTN and SCS. Throughout this journey we have faced countless obstacles, and both my husband and I have had to become aggressive advocates for our son in order to obtain the programs and services that he needs, programs and services that quite obviously suffer from a lack of staff and resources. I am always the first person to speak up or express my dissatisfaction when we are not getting something we need but I try to balance that with recognizing when we receive outstanding service, which is why I am writing to you today.

J has been Joey's physiotherapist since December of 2006, when Joey was only 9 months old. From the very first time we met with her I have been completely impressed by her professionalism, knowledge and commitment to Joey's care. In fact, with all of the therapy Joey receives, including OT, SLP, nutritional support etc. I am happy to tell you that PT has been the most consistent, and that is due entirely to J. Recently Joey had a Bayley Assessment done, and the one area that he excelled at above all others was his gross motor skills, and I am positive that it is because of J's work with him over the past 2 years. She has always known when Joey only required maybe one or two visits a month, and also recognized based on his development when he needed more intensive blocks of therapy and made sure that it happened. In addition to the PT she provides she has been such a great support to me personally, offering advice and resources when asked, and sometimes just providing an ear to allow me to vent about some of the difficulties we have faced. All of these things combined make her an excellent therapist and an asset to your team.

Recently J identified Joey as a child who would benefit from the additional support of your newly added PT assistant, P. Joey began working with P on a weekly basis in October of this year. Just when I thought our service was as great as possible, I now find myself extremely grateful for Patricia's work with Joey. Joey formed an instant bond with Patricia, he behaves towards her as he only does with close family members, and P's response to this has been to treat Joey the same way. He has excelled under her care, gaining more skills in a 3-month period than I thought possible. Her wealth of experience has benefitted Joey so much, and we were so pleased to learn that Joey will continue to work with her in the New Year. P has gone above and beyond her job. Joey really enjoys a particular toy we use during his sessions, a simple set of colourful elastics with bells attached, and when I mentioned to P that I was having difficulty finding the elastic to recreate the toys she took it upon herself to buy white elastic, dye it herself with food colouring and sew the bells and Velcro on, giving a set to Joey as a Christmas gift. There is also a piece of equipment that we use for his sessions, the "ladder", that we have actually looked into building or purchasing ourselves, but it costs about $450, and given that we work full time and are raising a child with extraordinary needs finding the time to build something similar was very difficult. Tonight I received a call from P telling me that her husband has built a replica of this ladder for Joey to use as long as he likes. I don't think it's possible for me to express in words how amazing this was for her to do; I'm not sure how we could ever thank her.

I know it's very easy to simply say "thank you" to J and P, but I wanted to do more, so I have written you this letter hoping they will be recognized for their dedication and obvious passion for the job that they do. I also wanted you, as their supervisor, to be aware of the wonderful things your team does in the community.

Sincerely,

Pamela

Most people, when they have a child, see only a few people added to their life because of it. Maybe a pediatrician, or some new Mommy friends at a playgroup. At last count I would say we have met about 30 new people because of Joey's disabilities, and some of these people truly are angels on earth. Can you imagine our amazing "P", who has know Joey for all of 3 months, having her husband BUILD this piece of equipment for Joey??!! And wait till you see it (it's still at Gramma and Papa's house right now, but I will post pictures later). The one he uses at therapy is nice, but the one Patricia's husband built is even BETTER! When she told me about it I thought perhaps he slapped something together with scraps, which would have been fantastic in and of itself. but no, this thing is of the highest quality, and I know Joey will get so much use out of it.

Having a disabled child also changes the people around you, and your relationship with them. No one, not even she herself, thought that Gramma Phyllis would become the HUGE part of Joey's life that she is today. I wish you could have seen her up there with Joey during that Christmas presentation at the nursery school...instead of simply enjoying her retirement in Florida, which is where she and Papa Roy would be at this time of year if it wasn't for Joey, she was up there supporting Joey, and by doing so supporting both Jason and myself. And then there's Papa Roy, who has no biological connection to Joey whatsoever, and you would never know it. On Friday we had several appointments with Joey all over the city in the midst of a bad snowstorm. Papa Roy provided me with my own personal escort, following my car around in his truck from place to place, waiting patiently for Joey's appointments to end, just to make sure we got everywhere safely. I'm quite sure he could have done lots of other things for that 6 hours, but he lovingly wanted to make sure we got where we needed to safely.

~sigh~ So we are very lucky in so many ways, and I know this. And the luckiest thing is that we have this gorgeous, happy, sweet, loving boy who has had an amazing impact on everyone he meets.

- P, J & J

Joey's Weigh-In

2008-12-15T12:08:00.006-05:00

A short but very sweet update:

In September Joey weighed in at 21 lbs 16 oz, and today's weight was 23 lbs 1 oz! A gain of just over a pound in 3 months is HUGE for this little guy, I am so thrilled! We knew he had probably gained a bit but with all of the illnesses he's had over the past couple of months I thought he may have lost much of what he had gained.

Needless to say our pediatrician is very happy with the gain and there were no further talks of a g-tube at this time. And to top it all off he just ate a full lunch for me without a struggle. It's a good day!

- P, J & J

Joey's New Room

2008-12-14T16:02:00.008-05:00

Christmas came early to our house! We needed a new chair in Joey's room, as we still feed him bottles at least 2x/day. The chair we were using was great when he was smaller but not so much now that he's 2.5 years old! Enter Grandmere (my Mom), who gave us the lovely early Christmas gift of the glider and ottoman you see below! We looked everywhere for the right chair to meet our needs and found this one.

It's very comfortable for Joey and I both, and I much prefer the look of this to the traditional glider with the exposed wood frame. So THANK YOU GRANDMERE!

A couple of weeks ago I decided that the pale lavender on Joey's walls that has been there since we moved in had to go, so I repainted his room. The colours were inspired by the quilt, and I thought it was a nice colour that was a bit more "big boy". I took these pictures quickly with my little point-and-shoot camera, so they're not the best quality, but I assure you it looks better in person.

I made this photo collage of Joey's grandparents and Zia, and put it above his crib so they are "watching over him" while he sleeps and he will always know he is loved so very much.

My Grandmother made these curtains for Joey's nursery in our old house. I have a feeling they may be moved to our spare room and a valance will take their place, as Joey likes to reach out of his crib and play with the blind.

So finally, over a year after moving in, Joey's room is done!

We have a busy week coming up. Tomorrow is our visit with the pediatrician. We're anxious to see how much weight Joey has gained since his last weigh-in in September. He was doing very well with eating for the past several months but with all the recent colds he has had his appetite has gone downhill.

Wednesday we have our new OT and the dietitian coming to the house. I've identified one of the goals I'd like to work on, which is getting Joey to hold his own bottle or sippy cup and feed himself. So I need to go through our storage bins and haul out all of the different bottles and sippy cups we've tried over the past 2 years and see if there's anything that might work.

Thursday is a Christmas party at Joey's nursery school, which I am very excited about! Since Gramma Phyllis takes him every week I don't really get to see what happens (though Gramma is amazing at telling me all about his day!) so I'm looking forward to watching Joey with the other kids.

And Friday is his last day of Kindermusik for 2008, which Gramma Phyllis also takes him to. Afterwards it's off to the orthotist to have his new orthotics adjusted, which also means a trip to the shoe store for bigger shoes.

And to end this post here are some recent pictures of Joey, in all of his adorableness:

- P, J & J

Mystery Overall Fairy

2008-12-10T15:13:00.006-05:00

Who are you, mystery overall fairy?

I would like to thank you for the three pairs of gently used overalls you placed in a bag and tied to my front door! 2 sized 3T and even one 4T, all very cute and exactly what we were looking for...how can I possibly thank my anonymous benefactor?!

I have a feeling I know who it is but my conversation at Saturday night's Christmas party was clouded with a few chocolate martinis, so I will have to wait and see if I'm right...

- P, J & J

UPDATE: I was right! Thank you Susie, and thanks Jakob for lending us the overalls you once wore, and thanks to Charlie for lending us the overalls you have yet to wear!

We have some pretty amazing friends.....

New Videos!

2008-11-30T10:48:00.004-05:00

Lots of new stuff! This first video is pretty darn cute, I especially love how the cats are keeping a watchful eye on what he is doing:

Those food and water dishes for Kaiser and Vita have been there since we moved into this house a year and a half ago. Joey has never paid any attention to it, but recently he's become a LOT more curious about everything, and a little more bold. He moves large items around ( like his high chair!!!) by pulling and dragging them around the room. The first time we caught Joey doing this in the cat dishes I was bit disgusted; I mean, he sticks his hands in the water, then into the cat food, and then into his mouth! But given that he doesn't usually bring anything that resembles food to his mouth I guess this is a huge step, and little processed fish meal never hurt anyone, right? I suppose we should tell him "no" when he does things like this, but given his limited understanding of the word (and the fact that he thinks it hilarious whenever we say the word in a stern voice) it's best just to redirect him and/or move the object in question. Traditional discipline for 2-year-olds just don't work with Joey, as he really is never "bad" and I don't think anyone can misbehave if they don't understand they're doing so. But you'll notice he looks back at me many times, it could be just that he's proud of himself and wants to make sure I'm paying attention, or maybe he is starting to understand that there are some things he shouldn't be doing!In this case, shortly after this video was taken, we moved the dishes and now the feline members of our family dine in the laundry room :)

This next video is of Joey's latest physiotherapy session last Friday. We love our therapy assistant, Patricia, and Joey loves her even more. You'll also notice Gramma Phyllis keeping a watchful eye over her boy in the background! Our goal right now is to get him standing for as long as possible to build up the muscle tone in his legs. He doesn't yet have the balance, strength or coordination to stand without help. We love this little rack they have, Jason is hoping to build something like it for Joey for Christmas. The little bells are stitched onto multi-coloured wide elastic and secured like a bracelt with velcro, if anyone knows where I can find the elastic please let me know, he loves them and I'd love to make him some.

- P, J & J

How to Ask for what You Want...And Get it!

2008-11-28T07:41:00.006-05:00

Another challenge faced, and overcome!

To Whom it May Concern,

My name is Pamela L. I have a son, Joseph, who is 2 years old and has cerebral palsy. For the past year we have been receiving Nutrisure pudding through our provincial drug program, the Ontario Drug Benefit card. Each month we would receive 16 4-packs of pudding. Our son is on a diet of strictly Pediasure Plus and Nutrisure pudding, the pudding is the only solid he will tolerate. To date we have been successful at avoiding the insertion of a g-tube as he will take the Pediasure by bottle and pudding (chocolate only!) by spoon.

Last month I called our regular pharmacy to refill our prescription for the Nutrisure. When I picked it up I was given only 3 4-packs and told that the product has now been discontinued, and that Ensure pudding would take it's place. When the pharmacy attempted to order chocolate Ensure pudding through their wholesaler, McKesson, they were told that they can only get the butterscotch flavour and they weren't sure if or when they could get chocolate. In addition, it did not appear that ODB would be covering the Ensure pudding.

I have called your office in Montréal many times over the past 2 weeks and spoken to several very nice customer service representatives, but unfortunately they have not been able to help me. One person did offer to send me some $5 coupons, however I am not able to find chocolate Ensure pudding at any of our major pharmacies, including Shopper's Drug Mart, Zellers, Costco, Walmart and several grocery store chains. They all use the same wholesaler, and therefore cannot order the pudding as they are being told it is not available at this time.

I have a 2 year old disabled child who relies on this pudding. I find it irresponsible for your company to suddenly discontinue the Nutrisure pudding without sufficient notice to customers, and not having an alternative available. Furthermore, I have contacted the Ontario Ministry of Health today and they have informed me that your company has not even applied to have Ensure pudding covered! Should this not have been done prior to discontinuing the Nutrisure?

The situation for us has now become critical. We hd a bit of a reserve of the pudding built up but it is now gone. I encourage you to act responsibly and please send me some chocolate Nutrisure or Ensure pudding as soon as possible, work with your distributors to get the supply flowing and complete the necessary paperwork to have the new Ensure pudding covered under ODB. I am sure my son is not the only child who relies on this product.

I anxiously await your prompt response.

Pamela L.

And late yesterday I received a voicemail message from someone at the head office, saying they would like my address because they will be sending me some chocolate Ensure pudding, free of charge :) Thank goodness for that...Joey gets 8 cases of Pediasure Plus a month (which would cost $40 each) and 16 packages of pudding a month (at $8/package). At $438/month this kid would eat us out of house and home! We're not eligible for much in regards to provincial support, because it is all income-based, so this help has really been crucial for us. When you decide to have a child you're usually prepared for the cost of a crib, stroller, clothing and all the other accessories, but I don't think anyone banks on almost $450 per month in food at the age of 2!

In other news, yesterday Joey and I met with his physiotherapist and orthotist, to examine how he's doing with his SMOs (the little inserts in his shoes we have made last February). The darn kid keeps growing! He's completely outgrown his orthotics and the shoes, so we had new casts made right away and should have new SMOs next week.

Also, Joey's physio has been really torn about whether he needs SMOs (the small inserts he has now) or AFOs (ankle/foot orthotics, the bigger inserts that come up to the knee). In an ideal world she would like him to have both, for different purposes, but given that SMOs cost about $500/pair, and AFOs about $2000, and the provincial government would definitely not pay for both, it was a tough decision. However, luckily Jason and I both have decent benefit plans through our employers, and have enough coverage to pay for the SMOs. So we're going to get those now, and in February we'll get the AFOs which the government will pay 75% of, and our benefits will pay the balance.

And on another positive note, Joey is doing extremely well at nursery school, with the fantastic support of Gramma Phyllis! What a difference less than 2 months has made...Joey's reaction to other children is COMPLETELY different, he doesn't mind the noises anymore, which makes life a whole lot easier for everyone, and more enjoyable for Joey I'm sure. Yesterday I received a copy of Joey's class picture that was taken last month. As soon as I looked at it I of course zereod in on Joey right away. You've all seen lots of pictures of him, and he is pretty photogenic if I do say so myself, but in this particular picture his mouth is hanging wide open and my immediate thought was "Oh my, he really sticks out as the 'special needs' kid". But then I looked at the other children in the picture....it looks like a class full of special needs kids!!! What a laugh it gave us! I guess when you try and take a picture of a group of 2.5-5 year-olds it doesn't tend to turn out well. Almost all of the kids had their mouths gaping open, or their eyes rolled up looking at the sky. That made us feel a lot better! I wish I could post the picture here but since this is a public blog I'm not really comfortable posting pictures of other peoples' kids without their permission, so you'll just have to trust me on this ;)

- P, J & J

The Quest for the Right Clothing

2008-11-27T12:59:00.002-05:00

Buying clothes for your child should be fun and easy, right? Well, if that child is Joey it's more challenging, though still fun.

Because Joey doesn't walk, and is extremely skinny around the waist, finding clothes that fit him properly and actually stay on while he scoots around on his bottom is no easy task. He has the waist of a 6-12 month old, but the height of a 3 year old! Try finding pants that meet those requirements!

After much searching we found the perfect pyjamas. They're from the Gap, fit very slim, are one peice and have no feet. No feet is key...when Joey scoots around in footed pyjamas his legs end up inside the body of the jammies, causing face-plants, causing rug burn...you get where I'm going with this. So these special Gap jammies are only sold in the US, but I've managed to do my bit for the environment by buying them second-hand on Ebay. One probem solved.

My newest challenge? Overalls. Joey has outgrown all of his size 2T overalls and it's time to move on to 3T. Overalls are great for him, since they're adjustable and don't come off. Unfortunately, brand-new plain denim overalls can run about $40, which I think is a bit crazy for kids clothes, so I've started looking for second-hand overalls. They are nowhere to be found!!! I've checked all three consignment shops in our city, nada. With the unfortunate downward turn in the value of the Canadian dollar Ebay is no longer the cost-saving heaven that it used to be. $10 USD to ship one paid of overalls from the US to Canada?! I don't think so! So I've posted some "wanted" ads on Craigslist and Kijiji, hoping for some hits, and I've posted on the parenting websites I frequent, hoping someone might want to make some extra cash and sell me their kids' overalls. So far I've gotten some offers of Sesame Street and Blues Clues overalls, but if you know me you'll understand that I'm a bit of a snob when it comes to how Joey is dressed...no character clothing for my kid!

So my "hit" counter tells me that this blog is read thousands of times (which freaks me out just a little bit...who are all of you people reading my blog?!) so if you or anyone you know has some gently used size 3T denim overalls that you would like to sell, please let me know!

- P, J & J

Inspiration

2008-11-26T07:48:00.005-05:00

As we sit and patiently await the results of our latest test, I found myself needing some inspiration. I've inserted a link to a video about a little girl in Toronto named Teya. This video was first brough to my attention about a year ago, and I had the amazing opportunity to talk to Teya's mom, Jeanette. Both Jeanette and Teya are such huge inspirations to me. Teya for proving everyone wrong, and Jeanette for perservering, thinking outside of the limitations of our network of children's therapy services and believing in her daughter. Jeanette told me that after little progress with traditional therapies she basically "fired" everyone, and started over with this new type of therapy. She actually flew to Chile in order for Teya to receive therapy from the person who created it.

http://www.cuevasmedek.com/teya_mov.html

We're pretty lucky so far...no one has said to us that Joey will never walk. In fact, everyone seems pretty positive that we will, it'll just be in his own time. Despite his delays Joey has definitely developed quite a personality, and perhaps inherited a bit of his mother's stubborness! This poses challenges when it comes to therapy, but we are still confident that he will walk.

Today I finally broke through one of my own mental blocks and swallowed a bit of pride and got an application for an accessible parking permit for Joey. I had never really considered it before, but now that he is able to sit in shopping carts or in a chair by himself I find myself carrying him from the car to whatever building we're going to, instead of using a stroller. That was fine in the summer, but with the snow and ice upon us it's becoming increasingly dangerous for me to walk across a skating rink-like parking lot with a squirmy 2.5-year-old in my arms! Last week when we went to his physio appointment I carried him in, extremely nervous about slipping and falling because the lot was covered in a thick layer of ice. On our way into the building I passed the empty accessible parking spot, which was cleared of ice, well salted and there was a salted pathway to the door. So we're applying for a temporary permit, since we never know if/when Joey will be at least be able to stand on his own.

I hope you found the video as moving as I did. I'm glad I came across it again.

- P, J & J

Myotonic Dystrophy Test - Take Two

2008-11-11T16:12:00.003-05:00

So the lab eventually called me back and took full responsibility for this mix-up...CHEO in fact did not actually receive the blood sample until October 15, 6 full days after it was drawn. They offered to do a home visit to draw the blood this time, but luckily I heard back from our geneticist and decided not to risk it again with the local lab and this morning we headed to North York General and gave another sample. The poor baby didn't enjoy it much, but they were good and quick, and soon enough we were back in the genetics department watching the huge 100 gallon aquarium and it was all smiles.

Dr. V says she has gotten results from this test as quickly as 4 weeks, but it has also taken as long as 12 weeks. I noticed on the lab requisition that there were some circumstances that this test could be a rush job, but only if I was currently pregnant or Joey was less than 3 months old, so we get absolutely no priority at all in this case. Had I not been so mentally and physically drained I might have gotten pushy and asked that she request this one be rushed under special circumstances (maybe that Mommy is going to lose her mind?!) but I decided against it.

So it may not be until January that we get the results, but the good news is that Dr. V tells me that this is a definitive test, no room for misinterpretations like with the Angelman test fiasco back in February. I suppose I'll just focus on that positive for now!

- P, J & J

I am being tested...

2008-11-10T15:21:00.006-05:00

No, not my blood, but my patience.

I just received a message from Sick Kids Hospital to let me know that Joey's test for Myotonic Dystophy was NOT done, because Ottawa Children's Hospital (CHEO) did not receive Joey's blood sample until SIX DAYS after it was drawn, and they need a fresh sample to do the test.

So that would mean they received it October 15 or 16, knew they couldn't do the test and I am just being notified now. And here I was thinking that we'd be getting results any day now, but instead I'm spending the balance of my day calling around to the lab, Sick Kids and CHEO trying to find out where this mistake happened. I need to know so that we can figure out if we're just going to have to drive to downtown Toronto to get the blood drawn this time or if it wasn't the lab's fault maybe we can try again here. As I type this I am into my second half-hour on hold with the lab, and the longer they leave me hanging on the phone the more angry I am getting.

I am devastated. As I explained to the Sick Kids nurse (in between sobs) in the message I just left her, I am 33 years old and would like to have another child, but we need these results back before we can decide on that. I think about this test daily, wondering if Joey has MD, which would mean I have it too, and are we going to have another baby or am I going to be scheduling a tubal ligation because there's too big of a risk to have another child? I feel sick to my stomach knowing we have to start all over again.

- P, J & J

Pumpkins and Puke

2008-10-20T07:19:00.010-04:00

What a lovely title for a new blog entry, don't you think? We had round 2 of Pukefest 2008 over the weekend (round 1 was during our ill-fated trip to Florida in April). Poor Joey picked up something along the way and started feeling sick by the end of last week, with a deep, chest-rattling cough and lots of sneezing. It's hard to say if he was really sick to his stomach...he would throw up after a coughing fit. The poor child inherited at least one thing from his Daddy...an extremely weak gag reflex. This is also likely due in part to the low muscle tone in his neck and mouth, which also results in a whole lot of drooling when most kids are over that stage of life by the age of 2.5. The good news is that whatever this bug is it didn't travel to his head and he never did become congested, which is always our big fear when he gets sick because when he is congested he has a VERY difficult time eating or taking a bottle. His appetite seemed pretty steady so for that we're thankful.

After being inside Friday night and all day Saturday we thought Joey seemed well enough to go to Chappell Farms yesterday, something we do every year in the fall. He certainly wasn't his usual smiley self but he also wasn't miserable. We took lots of pictures, some with Joey in his adorable Halloween costume, and most of them are straight-faced Joe, instead of bubbly Joey. I'm okay with that, as most of the pictures we have of Joey are of him smiling so it's nice to get a few with a more serious look.

A bit of a smile on the hayride

The best we could manage of a family photo

Surrounded by pumpkins

Our sweet, sweet monkey

I love this picture of our friend Brian and daughter Georgia, searching for the perfect pumpkin

Time to go home!

Luckily Joey gets to go back to the farm this week with Gramma and his nursery school class. He seems to be on the mend so hopefully he will enjoy himself a bit more.

Today we have a busy day in store. This morning at 9:30am we have our early intervention infant development worker coming over, accompanied by our new speech language pathologist, to work on communication. I actually had some homework to do for this visit, and much like when I was in high school I procrastinated and was scrambling to get it done yesterday! I had to take pictures of Joey's favourite toys and the SLP is developing some sort of activity to do with them.

Then at 11:30am we have a team of three people coming over; our dietician, an occupational therapist and the OT's supervisor, to observe Joey eat and perhaps give us some suggestions on how to improve the situation. After my begging, pleading and advocating for more OT service we finally got approved for 2, yes TWO, OT sessions to deal with Joey's feeding issues. Apparently this new OT is really, really new, and at the suggestion of our dietician who is much more experienced with kids and feeding issues it was decided that the OT's supervisor should also join us. Yesterday the dietician called us and said she had been at a conference all weekend and learned some new things, and thought we should videotape Jason feeding Joey his dinner last night, since getting Joey to eat on command in front of an audience of strangers can be challenging. So Jason had homework too, which was a nice change for me, and he rose to the occassion. Once I figure out how to transfer it to the computer I'll post it on the blog so you can see what a messy affair feeding Joey is.

So I'm hopeful that this morning we will maybe get some more useful suggestions on how to make meal times more enjoyable for Joey, and how we can work on getting him to bring food to his mouth himself and maybe transition into the exciting world of textures. Fun times!

No word yet on the results of our MD test, but we're really not expecting anything for another month.

Wish us luck today!

-P, J & J

The Test is Done!

2008-10-09T16:20:00.004-04:00

In a brainstorm on my drive home from work last night I rememebred there is on elab in our city that is not part of the mass lab chain that every other lab here is part of. I called them when I got home and sure enough, they do this test! Just a few glitches, such as the days/times they can do the test, the paperwork they need etc. but that was all sorted out this morning and at lunchtime Gramma took Joey to get poked.

So as I type this Joey's sample is on it's way to Ottawa, and now we have a 8-10 week wait for the results. But that's okay, I just wanted the ball rolling before we leave for Vegas tomorrow. So now we can have a relaxing holiday, we're both so relieved!

Happy Thanksgiving everyone :)

- P, J & J

Just when we thought we were done....

2008-10-08T11:52:00.002-04:00

Another test has popped up. It’s a bit of a story, so bear with me.

Joey has seen 3 neurologists since he was born. Dr. L was the first one, we weren’t happy with him and requested a referral to Dr. B, who we met in January and she ordered the tests that Joey had done at Sick Kids in April. When we got the Angelman diagnosis, Dr. B automatically transferred Joey’s file to Dr. M, who specializes in Angelman. At our last meeting with Dr. M in June he basically told us that since Joey does not have Angelman he will be closing his file, and didn’t feel it was necessary to have him followed by a neurologist at this time.

So fast forward to 3 weeks ago. Sick Kids left us a message reminding us of our follow up appointment with Dr. B on October 2, which was booked way back in January. I called back, basically just to confirm that this was a mistake and the appointment wasn’t necessary. I ended up speaking with Dr. B’s nurse, who reviewed Joey’s chart in the computer system and read aloud a section of a letter Dr. B wrote to Dr. L saying that “Joey exhibits many characteristics of Congenital Myotonic Dystrophy” and if the tests that were completed in April are negative (which they were) she recommended he be tested for MD right away. This letter was written last February, and sent only to a neurologist we have not had contact with for well over a year, so obviously this information was never communicated to us.

Dr. B is a pediatric neuromuscular doctor, and her sprcialties are Muscular Dystrophy and Multiple Sclerosis. I would imagine that her assessment of Joey is worth something.

I asked that they use the DNA already banked for Joey at Sick Kids to perform the test, so we don’t have to take a day off work and drive 3 hours round trip to the hospital in order to simply give a sample. This is not possible, they need a fresh sample for this test, which is apparently sent to the children’s hospital in Ottawa to be tested. So I contacted our geneticist, Dr. V, by email and asked if she could do the test at North York general, and this was her response:

Hi,I am happy to hear from you.

After all of the confusion with the micro array results, it did not escape me that we have never found the diagnosis for Joseph. We have NOT tested him for myotonic dystrophy, as far as I can remember. I will check when I am back in the office tomorrow. The genetic test is the simplest way to test for this. I will see if we have banked DNA. If not, I would be happy to see you next week for a quick chat if you have questions, and to draw blood from Joseph. The myotonic dystrophy test is done in Ontario.

Best regards, Dr. V

Apparently Dr. V isn't aware it must be a fresh sample?! That email was received well over a week ago, and despite me emailing her again asking for an appointment with her as soon as possible, I have yet to receive a reply. So yesterday I called our local paediatrician, Dr. K. His receptionist is AMAZING, spoke to Dr. K. right away and asked if he could order the test so that we could give the sample here at the local hospital. Of course he said yes. So the receptionist said she would call the hospital right away, find out which requisition form is required and she would fax it right over to me. I knew it was too good to be true. Later that afternoon she called back…apparently they have NEVER couriered a blood sample to Ottawa and have no idea which requisition form is required for this test. The person who might know, who works in the chemistry department, was away. The receptionist called back again today and was told that our local hospital will NOT draw the blood for this test. We’ve been though this before with our hospital…last time we had to get North York General to fax all of the paperwork to our hospital, someone had to actually call them to give direction, the sample was couriered to North York general and they in turn couriered it to where it needed to go. HUGE HASSLE.

I was a lot more patient when we went through this for the Prader-Willi test, and the Spinal Muscle Atrophy test, because I knew deep down he didn’t have either of those. In fact, once the blood was drawn for those tests I forgot all about them until the doctor’s office called us. I had never heard of Myotonic Dystrophy before, and with Google being both my best friend and my worst enemy, I’ve found out a lot of disturbing things about this disease, which is a form of Muscular Dystrophy. Here are a few things I found:

What is congenital myotonic dystrophy?

Congenital myotonic dystrophy is the early childhood form of myotonic dystrophy (also known as Steinert's disease). Usually in myotonic dystrophy the symptoms begin to show in childhood or later in life, but symptoms of congenital myotonic dystrophy are evident from birth. It occurs only when the mother already has myotonic dystrophy (although she may not be aware of this) and she passes it on to the child in a more severe form. 'Congenital' means 'from birth' because the condition is usually identified at birth or soon after; 'myotonic' means 'involving muscle stiffness'; and 'dystrophy' means 'muscle wasting and weakness'.

What are the symptoms?

Often babies with congenital myotonic dystrophy have problems with breathing after delivery and may need to be helped using a ventilator. Suction to remove any secretions in the lungs may also be necessary. Respiratory problems may continue after the birth and can be very severe and life threatening, especially if the baby is premature. Once the neonatal period (28 days after birth) has passed, the respiratory problems tend to improve. The baby is often floppy (hypotonic) which means that she or he has poor muscle tone. This usually improves with age.

It is important that physiotherapy should be practised on the baby from a very young age to help with breathing and lung function, and to encourage movement and strength. The motor milestones (physical achievements, such as sitting unaided) and the intellectual milestones (such as talking) which a healthy child reaches by a certain age, tend to be delayed in a child with congenital myotonic dystrophy. There may be speech difficulties, particularly with clear pronunciation, and so speech therapy can be of help.

A baby often has swallowing, and therefore feeding, difficulties. She or he may regurgitate food, have bouts of colic and need food supplements. Some babies may need a feeding tube (nasogastric tube) or even at times of illness a drip (intravenous infusion) to help with feeding.

How early is diagnosis made?

During the pregnancy, a mother of a child with congenital myotonic dystrophy may have noticed that the baby was not moving around in the womb as much as normal, and had reduced foetal movements. She may have had hydramnios (excessive amounts of amniotic fluid) and premature labour. The mother may not be aware of having myotonic dystrophy herself until after the birth of her affected baby.

If you’ve followed our blog you can see there are so many things that fit with Joey’s issues. To be honest I can’t really understand why no one ordered this test earlier. With Angelman there was always doubt, given that Joey didn’t have so many characteristics of the syndrome. But this…well, Joey has ALL of the characteristics of CMD. And as I started researching MD Type 1, which I would definitely have if Joey was diagnosed with CMD, a lot of things made sense to me in regards to my own medical history.

So now we wait. I’ve sent another email to Dr. V. asking for help in getting the blood drawn here. I’ve spoken to the chemistry department at our local hospital myself, and the person I spoke to said she will have to talk to the medical director and she will get back to me. I was so hopeful that we would have the blood sample given and the test sent away this week. Jason and I are leaving Friday on our first vacation alone since Joey was born and I really didn’t want to think about this while we’re gone!

- P, J & J

Our Latest Lesson

2008-10-07T17:31:00.002-04:00

Through the blogging community I came across the blog of one very amazing family, who is going through a very difficult time in their lives.

http://sgirl79.blogspot.com/

Stacy has gone through her entire pregnancy knowing that her son, Isaac, would be born with several genetic abnormalities and likely would not survive long after birth, if he made it through the pregnancy at all. In addition to the blog I linked to above, she also started another blog as daily letters to Isaac:

www.mydearisaac.blogspot.com

I warn you in advance, do not visit either of these blogs without a box of tissues handy.

I have followed her blog for months and her strength and courage have been such a source of inspiration to me. Today was Isaac's birthday, a scheduled c-section. Isaac lived for 16 minutes.

The lesson I have taken from this isn't that "God only gives us what we can handle", nor is it that "things could be worse". Stacy wished for one thing above all others...to be able to hold her son while he was still breathing. Sure, she prayed for a miracle, but her biggest hope was simply to hold her son while he was alive.

So on the bad days I have, when I get angry and wish that Joey would just start talking or walking, I need to remember to be thankful for the seemingly small things that truly are a gift. Today Joey woke up with a smile on his face, he gave me hugs when I asked for them, and tonight he will cause Jason and I to laugh with the silly things he does.

And tomorrow I will get more than 16 minutes to hold my son.

- P, J & J

First Day of Preschool!

2008-10-03T22:37:00.003-04:00

Joey became exactly 2.5 years old on October 1st and started preschool the very next day! Gramma Phyllis went with him to act as his "mediator" and it went much better than any of us expected. I'm not sure if I actually took a breath the entire 2.5 hours they were there, I was dying to know how it went, but Gramma is very good at keeping Jason and I informed at work and I knew an email would be forthcoming. I was not disappointed! I thought instead of describing how I heard his day went I would just post the actual email. That way you can also see how lucky we all are to have Gramma and Papa in our lives :)

Well, I have to give Joey an A plus for his first day at nursery school!! It went so much better than even I had anticipated. I had brought a few familiar toys and his blanket to sit on if everything seemed too overwhelming. Unfortunatly, I had left them all in the hallway on his hook, so we went in cold turkey.

Fortunately they have the bead toy there so the first thing I did was sit him on a chair at the table and let him play with that. Then I moved him to the rug by the reading corner. Other kids came over to play with the toy too and he was ok with it. Then I moved him to the big rug where a few more kids were playing and once he was busy with a truck, I just walked away to talk to some of the other kids and watch him from afar. I never thought I'd get to that step today. I would have been happy to have him on my lap as long as he wasn't unhappy, but he was way passed that. He was moving around from the floor to the carpet, watching all the kids and what they were doing. He even tried to play with some of their toys. It was just awesome!

Then it was circle time and since he really doesn't like just sitting around doing nothing, I did have him on my lap and he played with my keys between songs while the kids talked about shapes and patterns and stuff like that. Then it was snack time!! We washed his hands at the sink and then he sat at a table with 5 other kids. I could have fed him off by himself but I wanted to see how this would go. He ate 3/4 of a minigo and a whole nutri pudding!!! Mind you this was between 10:30 and 11am so I'm sure he was hungry but the other kids were talking, and asking me to open up stuff for them, so I thought he did great. He spent a few minutes watching the others eat when he was done then let me know he'd enough so we moved back to the reading corner till the others were done.

Then it was time for gym, in the big gym upstairs. I figured we might as well give that a try too , so up we went. At first it seemed a little overwhelming, but there is a mini trampoline there so I sat him on it and bounced him like I do on the bed. He was all smiles. Then the teacher brought out a scooter board so he enjoyed that as well. All in all he had a good time up there, a few whiney moments but basically got through it happily.

After that is was story time. I knew he was getting tired so I sat him on my lap for the story. He actually seemed to be enjoying the book, watching the teacher as she read it and looking and smiling at the other kids. I was so proud of him. There were 2 other kids in there who cried a whole lot, but Joey was great. Now of course probably because I was with him and know the triggers that set him off and the things that calm him down. But I was not glued to him the whole time and when I felt he was ok to be alone, I sure let him do his own thing.

I think this was an excellent beginning. The teachers were very accommodating and offered to bring out other equipment if I wanted to work on his PT or OT stuff with him. I just told them that for today, I just wanted to follow his lead and let him be happy. But there are lots of activities that we can try when he is totally comfortable with the whole thing. The only thing is he really didn't want any lunch and fell asleep as soon as I put him down. He's tired and so am I. He'll be ready for a big snack when he wakes up.

So that was our morning. Time went by quickly. I thought 2 and 1/2 hours might be too long, but the pace is perfect for Joey. There is even a small aquarium in the classroom. I only really noticed it when another little boy tossed a couple of trucks into it!!

I guess Jason will be picking the boy up tonight. That's good cause Papa Roy wants to take him for walk if the sun is till shining after his nap and snack. See you all later.

One very happy, very tired Gramma.

Mustang Joey

2008-09-28T08:50:00.004-04:00

Joey has a new walker, the old one we called "The Green Monster" was just too heavy and cumbersome, it was too hard for him to actually move it. So now we have the Pony, which I prefer to call the Mustang, it's just so much more macho (you'll see the little picture of the horse on the bottom of the frame).

He's just starting to get used to it, and can't really figure it out yet so he basically just stands there, which is okay for now until he gets the concept. Weight-bearing on his legs is really important right now. I know he'll get it eventually...I remember when we first put him in his Jolly Jumper he'd just hang there, it was so sad! But once he figured out he could get his legs to move him around he was a wild man, so much so that we eventually had to take it away because his crazy jumping just wasn't safe anymore.

So here are some pictures and a short video clip of Joey and his Mustang, with a special guest star appearance of Vita Marie, our much loved therapy cat (she's not really a therapy cat, it just seems like she is) who loves Joey to bits.

- P, J & J

Vintage Joey

2008-09-27T21:41:00.004-04:00

I've been feeling a bit nostalgic about Joey's infancy lately, I really miss having a baby! Some people aren't really "infant people", they prefer the toddler stage, but I have to say that I really enjoyed Joey as a baby, I always wanted to just freeze time and keep him that little forever. So to satify my yearning to go backwards, I thought I'd post a few pictures of my sweet baby Joey:

His first picture after being born.

Teeny tiny in his cradle

Still able to fit in my lap

I have a thing for baby feet :)

- P, J & J

The Zoo

2008-09-23T06:55:00.003-04:00

Sunday Grandmere and I took Joey to the zoo. Despite my favourtie animals (the meerkats) being "off display" ( my Mom thinks they're busy with their Telus commercial appearances) we had a good time. For the first time Joey actually became whiney when he was hungry...it's probably happened before but it's always hard to tell with him, this time we're positive it was because he was hungry! Definitely a good sign. His eating is on another upward swing, and we're thrilled.
Not many pictures to share, by the time I thought about whipping out the camera Joey was ready for a nap and not his usual smiley self.

Sleepy Boy

Hugs from Grandmere (even sleepier)

Yes, they really got this close to us when we were sitting in the grass. No zoom used here! Joey wasn't a fan.

So it's back to work for me today, and Joey's first whole day with Grandmere!

- P, J & J

Lovely Sudbury

2008-09-19T15:01:00.005-04:00

We had a wonderful, if not whirlwind, trip to Sudbury yesterday. My dear husband drove the entire 3 hours there (stopping when necessary and without complaint for both his baby boy and for his pregnant sister!) and again on the way home. We had lunch with Zia Ev at her house, a visit with Zia Ange at her new retirement hme and then dinner with the whole clan. Have you ever visited an Italian aunt around lunchtime??? Let's just say it included ravioli with meat sauce, meatballs, salad, bread and a touch or red wine ;)

Despite a small bought with car sickness on the way home (poor Joey, and poor Zia Jodi who got to sit beside him!) a great time was had by all. Of course, we have new pictures:

This is of Nonno Joe (Jason's Dad, Joey's namesake) given to us by Zia Ange, keeper of all family history.

Joey with Zias

L-R: Zia Ev, Zia Jodi, Zia Ange

Dinner was at a pub, so we thought it only right to take a picture of Joey's very first time in a bar! (note both the proud Daddy and Joey's adorable new moccasins, picked up at the French River Trading Post on the drive up)

This picture turned out terribly, but it's the only one we have of the group at dinner.

So today we're off to visit Nonno Joe and Nanny Sue, a quick trip to Ikea and then to the airport to pick up Grandmere!

And just a quick "hello" to Gramma and Papa Roy, who I know are enjoying their vacation but are also missing Joey like crazy! Gramma never really mentally vacations from Joey, I know she is probably reading this even though she should be relaxing in the Okanagen Valley :)

- P, J & J

Bayley Results

2008-09-10T21:50:00.004-04:00

The results from Joey's Bayley Assessment are in, and here they are:

Scale Age Equivalency

Cognitive 6 months

Receptive Communication 10 months

Expressive Communication 6 months

Fine Motor 4 - 10 months

Gross Motor 8 months

So no major surprises here. The range for his fine motor is pretty puzzling. I would actually say he is much closer to 4 months than 10 months, I'm not really sure what he does in a fine motor capacity that would be considered equivalent to a 10 month old.

Given that the only therapy that he receives that has been consistant is physical therapy I'm not shocked that his communication, cognitive and fine motor skills are so low.

I'm beginning to become very disillusioned by our "system" for children with disabilities in this province. In talking to other parents of disabled kids I realize this is just another milestone for us on our journey, it seems that everyone reaches this point at some time. To quote from a very inspirational video that was shared with me a few months back... "This system is so flawed by it's inflexibility to adapt to an individuals' needs". Joey could be the (extremely cute) poster child for the need for change in the services available to special needs children.

I worry about the waiting lists, the lack of service, the lack of funding, the lack of support. Joey isn't even 2.5 yet and already I'm frightened about how on earth he will adapt to school. The gap between Joey's abilities and the desired milestones for children his age is getting steadily larger...while he continues to make progress and never loses skills, which is all very positive, he is still so dependent on others in every way. I mean, if his "age equivalency" average of 7 months doubles over the next year and a half, I worry about how my 4 year old, functioning at a 14 month level, could be integrated into a junior kindergarten class. My understanding of the availability of services once kids start school is that they become LESS available, and that kids with disruptive behaviour issues receive top priority. Will I actually reach a point where I'll HOPE that Joey develops behaviour issues just to receive the therapies he deserves? No parent should ever have to ask themselves that question.

On to the good news: We're on vacation this week, so Joey gets his Mommy and Daddy all to himself. It's been a busy week; OT, PT, first day of swimming lessons, pediatrician appointment, dietitian appointment. And that was all by Tuesday!

Joey weighed in yesterday at 21 lbs 15 oz, 90 cm tall. The pediatrician is still satisfied with his growth and doesn't feel a feeding tube is necessary yet. He is going to refer us to a developmental pediatrician (In Orillia, not at Sick Kids in Toronto, yay!) to evaluate him for a possible secondary diagnosis of Sensory Processing Disorder (SPD). I would be surprised if Joey WASN'T diagnosed with this...he has definite sensory issues...loud and unusual noises (especially indoors), tactile sensitivty with his hands and of course his unwillingness to put anything in or near his mouth except for fabric. I'm not sure how long we'll wait for this appointment but there's no rush.

The rest of the week is busy too...a trip to Sudbury to visit Jason's Zias and extended family tomorrow and Friday a trip to Ikea in Toronto, followed by dinner with Nonno and Nanny Sue, then off to the airport to pick up Grandmere! If the weather holds out we'll be going to the Toronto Zoo on Sunday or Monday. Lots of excitement :)

- P, J & J

The R-Word, According to Maria Shriver

2008-08-30T08:20:00.004-04:00

A great article, thought I'd share it :)

The 'R-word' is no joke
For the intellectually disabled and their families, it's just as bad as the "N"-word.
By Maria Shriver August 22, 2008

This has been a year filled with teachable political moments. Racism, sexism, ageism and "change" have been debated at kitchen tables and water coolers across America. But this last week, those gathered around my kitchen table have been consumed with another discussion, one that is not Democratic or Republican -- it's the "R-word" debate.

The "R-word" stands for "retard." For the 6 million to 8 million Americans with intellectual disabilities and their families, this word and its hurtful use is equal to the impact of the "N-word" on an African American.

The reason it's kitchen-table fodder is because of the Dreamworks film "Tropic Thunder," which topped the box-office charts when it opened last weekend and which will attract many more moviegoers this weekend. In the R-rated film, which I've seen, a character named Simple Jack is a caricature of a person with a developmental disability. In one of the scenes, the character played by Robert Downey Jr. chastises Ben Stiller's character for "going full retard," and the "R-word" is repeated many times.

As a journalist, I respect the right to freedom of speech, and my kids will tell you I laugh the loudest when we see a comedy. But as the niece of someone who had a developmental disability, and as a member of the board of directors of Special Olympics International, I know how hurtful the "R-word" is to someone with a disability. I know why "Tropic Thunder's" opening was met by protests on behalf of the intellectually disabled.

Listen to actor Eddie Barbanell, who serves on the Special Olympics board with me, and he will tell you in very emotional terms how the use of that word has made him feel rejected, stupid, demeaned.

Or you can talk to Special Olympics athlete Loretta Claiborne, who speaks on behalf of millions when she describes how the "R-word" has been used to mock and degrade her. She asks all of us to stop using this word without regard to its effect on the hearts and minds of people with disabilities.

There is an old saying: "Sticks and stones will break my bones but names will never hurt me." Even when I chanted it as a child, I never believed it. Words do hurt -- they break people's spirits, they break people's dreams, they break people's hearts.

Kids will see "Tropic Thunder," no matter the rating, and when they leave the theater and go out to their schools, their homes and their communities, they'll call each other the "R-word" because they think it's funny. They'll do it without any idea or regard to how it makes a person with a disability feel.

Too many in the intellectually disabled movement cannot speak out for themselves. It is up to their families and those of us who advocate on their behalf to explain that calling someone by the "R-word" is no longer acceptable and is anything but funny.It's not acceptable in a movie theater; it's not acceptable on a playground.

It's not acceptable that college coaches use it to chastise athletes. It's not OK to use it in a classroom or a boardroom.

"Tropic Thunder" is giving Claiborne, Barbanell and many other individuals and organizations that serve those with special needs -- the Special Olympics, the National Down Syndrome Society, the Arc, the American Assn. of People with Disabilities, Parent to Parent-USA -- a teachable moment. They are ready to join with the entertainment industry to change minds. Dreamworks' decision to include a public service announcement with DVDs of "Tropic Thunder" is an important first step, but far more needs to be done.

Just as important, parents must talk to kids at our kitchen tables about how we have felt when someone called us stupid, idiotic or lame. Because once we put ourselves in someone else's shoes, certain names just aren't that funny any more.

I often quote the Hopi prayer that tells us not to look outside ourselves for a leader. It tells us that we are the ones we have been waiting for. We can exchange one "R-word" for another: respect. We can teach our children that name-calling hurts.

Let's makes the "R-word" as unacceptable as the "N-word." Think of all we can accomplish if we work together.It's one thing in this political season that shouldn't require a water-cooler debate.

Maria Shriver is the first lady of California.

Lazy Weekend at the Cottage

2008-08-23T16:10:00.005-04:00

Last weekend we made a spur of the moment trip to Phyllis and Roy's cottage and we're so happy we did...a great time was had by all! The weather was perfect, Jason and I got to sleep in a bit (thanks Grandma Phyllis!) and we ate fantastic food. Poor Joey got attacked by a mosquito that was trapped in his room for the night, but the bites bothered us more than him I think. Of course we have pictures from the weekend:

The summer has flown by so fast! We're gearing up for a busy fall: Joey will be going to swimming lessons on Mondays with Mommy, Kindermusik with Grandma Phyllis on Fridays and of course nursery school on Thursdays starting in October. We also have a visit from Grandmere in September and Jason and I are taking a 4-night trip back to Vegas over Thanksgiving in October to look forward to. And as if all of that wasn't enough we now have another trip to Florida booked in April 2009. This time Joey will have a 3-month-old cousin joining him :)

- P, J & J

Joey Gets "Accepted" to Nursery School!

2008-08-10T07:30:00.004-04:00

This is such exciting news! After our experience with the last nursery school we tried to register him with, I was a little on edge when exploring different options. I ended up calling one of the oldest nursery schools in our city and immediately I could tell this one was going to be different. When I spoke to the registrar her immediate attitude wasn't one of "I don't know if we can do this", it was more like "let's see how we CAN do this". She spoke to me at length about what Joey's needs are, and told me she'd speak to the head teacher and get back to me. Within a week it was all sorted out and I had the registration package in my hands! They are willing to do a bit of a trial...Joey will be 2.5 years old on October 1st and that is the youngest a child can be to attend nursery school. So, we're doing a one-month trial for October, with Joey going once a week. Grandma Phyllis will be his mediator, so he will have the one-on-one support he needs. If it all goes well he will attend twice a week starting in November. It's the perfect way to begin exposing him to larger groups of kids his own age, and perhaps it will stimulate him to want to "copy" his classmates.

I'm trying not to place unrealistic expectations on this new experience. Joey is definitely more comfortable around other kids now than he was a year ago but their squeals, babbling and other assorted noises still really bother him and cause him to cry. It's entirely possible that he is not quite ready for this and we may have to withdraw after October and try again in a few months, but I am so happy for the opportunity to at least try.

I'm adding a video clip of Joey playing with his little friend Ava, who is 11 months old. You can see his facial expression start to change once she starts to make noises. I didn't actually capture it in the video but he did start to cry after a little while of Ava babbling, and once that starts it doesn't really stop until I remove him from the situation. His tolerance has increased though; 6 months ago the crying would have started within 5 minutes, but this time he held off for about half an hour. But I'll also post a picture of the two of them when we first arrived, and they were smiling at each other and at one point Ava laughed and Joey laughed with her. HUGE improvement for him!

Tomorrow Joey is having what's called a Bayley Assessment. It's a testing tool used to determine where he is developmentally. Here's a description of it:

The full name of the test is Bayley Scales of Infant and Toddler Development,.The child is asked to do a number of activities to see if their thinking, language, and moving (sitting, walking) skills are similar to children their own age. The Bayley-III has three major parts that are tested with the child: Cognitive, Language, and Motor. The parent completes a Questionnaire that looks at the child's Social-Emotional and Adaptive Behavior development. The scores that come from the assessment indicate how well the child performed compared to a group of children within the same age range.

I'm a bit nervous...apparently it takes 2-3 hours to complete, and if Joey doesn't appear to be "in the mood" they will reschedule all or part of the testing. It's all done through play and other social interaction, so it should be fun for him, but the person coming to the house to do the test is someone Joey has never met, which could pose a bit of a challenge. I've already been warned that sometimes the results can be a bit emotional for parents. Some parents are shocked by the level at which their child is functioning and it can be a bit depressing to see it on paper. I can't imagine I'll be shocked, I already know he functions at a 6-9 month old level in most areas. I suppose it they told me he was at a 3-month-old level it would throw me for a loop, but I really can't imagine that would be the case. If all goes well tomorrow we should have a written report in about 2 weeks. I think having that report would be very helpful to the nursery school and anyone else involved in Joey's care. Since we don't have a definitive diagnosis it's really hard to describe Joey and his needs/abilities to other people, so I think this will be very useful. Wish us luck!

- P, J & J

New Name for the Blog

2008-08-06T21:37:00.003-04:00

Thanks to a dear internet friend (Thanks B!) I now have a new name for the blog. The Angelman name doesn't seem appropriate anymore, and with the new name I think it's probably best to pick something that I will never need to change. It was fairly obvious once pointed out to me because I've already used it several times...Lessons From Joey. So in a few days I'll be changing the name. For those of you whose email address I have I will send you a new link, otherwise you can email me at pmq97@hotmail.com

The new address will be:

http://www.lessonsfromjoey.blogspot.com/

An update on Joey's progress is coming soon, along with some new pictures and video!

-P, J & J

Lessons from Joey - Part 2

2008-07-12T07:56:00.004-04:00

It's a little but very valuable lesson...you don't need expensive toys to have a great time! Here's a few video clips of Joey getting hysterical over an air-inflated frog that we use as an ottoman in his room:

It doesn't take much!

- P, J & J

Case Closed

2008-07-09T21:35:00.004-04:00

Today we made another trek to Sick Kids hospital in Toronto to meet with Dr. M. to review the latest genetic test results. He has basically told us that since he is a neurologist who specializes in epilepsy and Angelman Syndrome he doesn't feel it's necessary for us to continue to see him. At this time all of the neurological tests available have been performed with normal results, so he has referred us back to our pediatrican for follow-up. This brings some relief to the hectic schedule we've been dealing with over the past few months...now our file is closed with both the geneticist and the neurologist. It's a welcome break from the search for a diagnosis, and after what we've been through over the past few months think it has taught us to be happy for what we DON'T know and that having a diagnosis will not change Joey and what he is capable of. We have to focus on the positives; Joey has never regressed or lost any skills and he is HEALTHY. Going to Sick Kids so often in the last little while, seeing children with no hair from chemo treatments, and little babies who can't breathe on their own...well, it's enough to make us thankful for our healthy little boy. No abnormal tests, no medications, no surgeries...these are all amazing and wonderful things. So our quest to label Joey, which is something I think all parents of a special needs child go through, is over. His official diagnosis of "Hypotonic Cerebral Palsy" will remain as is, which we've always known was a very generic label that will enable us to access services and funding to help Joey develop and grow.

So on to our next battle....Joey being denied access to nursery school because "his needs are too great" in order to participate in activities with other kids his age. At the time this happened we were right in the thick of the whole Angelman confusion, so I didn't have much energy to deal with it, but as September looms and it becomes increasingly obvious that Joey doesn't spend nearly enough time around other children and is actually frightened of them, we know now that this is a priority. I have placed some calls to nursery schools to confirm this is what they're telling me, but I know that I understood correctly the first time. I was told that Joey's needs are too complex (not being able to walk, not being potty trained, not self-feeding) in order for him to enroll. I completely understand the limitations of staffing and the safety issues, so I offered to provide a one-on-one mediator to attend with Joey, at no expense to the nursery school. The answer was still "no", because if Joey had his own adult to work with him it would be too many adults, and if they did it for us they'd have to do it for everyone. Ummmm...yeah, and what's the problem with that exactly?! So calls have been placed, I'm asking for things in writing and will be taking this to the Human Rights Commission of Ontario and will lodge a complaint if necessary. NO ONE WILL TELL ME MY CHILD CAN'T DO WHAT OTHER KIDS DO. Period.

On a much happier note, Joey also had his first encounter with the slide at the park. It started out a bit rocky but ended positively!

He wasn't too sure at first

"Who the heck are you???"

All smiles at the end :)

And now that all of our gates are up and fully operational we haven't had any more Joey vs. Stairs incidents, thank goodness. He actually finds the gates amusing:

Other news:

Joey is now kneeling all the time, and can pull himself into this position himself. He will kneel at the coffee table or the couch and reach up to grab his toys.

His eating is on a little bit of an upward swing, but not much. In my never-ending search for high-fat-and-calorie purreed food to introduce to his diet I came across Macadamia Nut Butter at the health food store. Ten bucks a jar, it has TWENTY THREE grams of fat and TWO HUNDRED TWENTY calories in two tablespoons. So of course it is off limits to Jason and I! Joey has eaten it a few times mixed with pureed mango or pineapple and so far seems to like it. Sure beats peanut butter with it's measly 8 grams of fat!

We got a new stroller for Joey that supports proper posture so much better that we don't even need to use his special seat liner anymore! Joey's wonderful PT Jennifer checked it out on Monday at our last session and was very happy with how supportive the stroller is for him. And I like the funky red colour :) Pictures to come soon...

That's all for now. Hope you're having a great summer so far, we're certainly enjoying our first entire season with central air conditioning!

-P, J & J

The Final Word, Genetically Speaking

2008-06-24T15:22:00.007-04:00

We finally received the letter from Dr. V. along with a copy of the lab report on my parents' DNA tests. Here it is:

Dear Mr. & Mrs. L,

I am sending you a copy of the final CGH microarray analysis report on Joseph and the family. The array was done as a part of our search for an explanation of Joseph’s delays.

The laboratory reported a small missing piece in Joseph’s DNA, in a gene that causes a condition known as Angelman Syndrome. Mrs. L, you carry the same deletion, as does your mother. Your father does not carry this deletion. There is no one else in the family with the same issues as Joseph has.

The finding of this small deletion in Joseph’s maternal grandmother indicates to us that this is most likely a benign DNA variant of no clinical significance. Joseph DOES NOT have Angelman Syndrome. The rest of the microarray was normal.

We have not found a genetic diagnosis to explain Joseph’s difficulties. I do not know what the risk may be for you to have another child with similar problems in a future pregnancy. The risk based in population studies is 5%. There is no prenatal test that we can offer to check for these problems.

I regret that this has been such a difficult experience for you, with the hope/fear that we had a diagnosis followed by the finding that this is not significant. I do not have further tests to offer you at this time. I have not arranged a follow-up appointment for Joseph, but I would be happy to see him or to meet with you at any time, if you or your doctor feels it would be useful. Please call me if you have any questions or if you wish to have another appointment.

Yours truly,
Dr. V.

Our next step is to book a follow-up appointment with Dr. M, the neurologist we met with in May. The actual lab report states:

Interpretation of the significance of this deletion depends on the clinical presentation of the mother (me) since the deletion in her case is also of maternal origin (my mother). If the mother (me) is considered clinically normal, this deletion is likely benign and unrelated to the patient's phenotype.

"Likely" benign and unrelated. Not sure how I feel about that...is it likely, or is it a fact? Dr. M. seems to be more involved with the research side of things and I think he may be able to shed more light on this for us.

But in the meantime, this means we are done with Dr. V. One less hospital that we have to visit I suppose.

As for Joey, he is doing very well. His mobility has increased dramatically in the past few weeks, he is a VERY quick little "scooter". He can move at warp speed by scooting around on his bottom using his arms. So quick in fact that he fell down the stairs yesterday! I promise, we are not neglectful parents, and Joey is fine, but needless to say our home has become a "gated community". We've purchased and installed 3 gates in the house so this never happens again. Miraculously Joey is fine, not even one bump or bruise. I think this is one case where his low muscle tone comes in handy...he doesn't tense up like we would during a fall.

Pictures will be coming soon!

P, J & J

Need a New Name

2008-06-02T06:42:00.006-04:00

I guess the name of the blog is now defunct, so it's time to come up with something new. I started this blog while Joey was still going through lots of tests, and named it The Hypotonia Chronicles, since that was his main symptom. Then we got the Angelman diagnosis, so I changed the name, and now that it's confirmed that he does NOT have Angelman I guess it's time for a new name. I'd like to come up with something that I'll never have to change again, because every time I change the name it changes the web address too, which is a pain for people to try and find it. Let me know if you have any good suggestions! If I go with my Grandmother's nickname for Joey it might be a little religiously offensive, since she refers to him as "The Second Coming" LOL :)
So far we have yet to hear from Dr. V, despite the fact that she has no idea we got the results directly from the lab. I'm a bit disappointed, but am trying to give her the benefit of the doubt. I emailed her again on Friday asking if she'd received the written report, but no response as of yet. Now I have this niggling little feeling that perhaps the results weren't clear-cut and she's doing some more behind-the-scenes investigation. Ah, how my mind wanders! She's likely just really busy and hasn't had time to get back to me.
Joey is doing really well these days. He now bounces himself up to a kneeling position, which is great. He has also gotten extremely FAST when scooting around on his backside, he's like a rocket! It's definitely time for some baby gates as he's made it to the top of the stairs many times now, but we're never far behind. All of our stairs are hardwood though, one set ending on ceramic tile, so I'd rather not wait for that one time I can't get to him fast enough and over he would go.
Still no words as of yet, just lots of baby-like noises. We now have a one-on-one worker, Nicole, that takes Joey every Thursday afternoon to work on speech, she's wonderful and Joey loves her! I do feel that he is understanding more, and most recently he learned the word "hug"...when he is on my lap or sitting beside me I can just say "hug" and he lays his head on my chest while looking up at me with his big brown doe-eyes and a smile. It melts me!
Yesterday was the first of the month, which means we marked another month of Joey's life with a picture of him with his bear to show how much he's grown. A whole 26 months old, unbelievable. So here he is, with a shot from when he was 13 weeks old, just for comparison. He's such a little boy now!

This kid now refuses to just sit still and pose with the bear, as soon as we put him down he was off, trying to get to the camera as quickly as possible. My camera is quick but still only managed to capture him while on his way across the floor to me.

So today we're off to OT. Our appointment is at 10am, which I think will yield better results than the 11:30am appointments we've been having in the past. The poor kid is ready for a nap by noon, so he's usually pretty tired and we don't get much accomplished.

P, J & J

Big Sigh of Relief and a Return of Hope

2008-05-23T15:38:00.003-04:00

So today I was sitting at my desk at work, head in the clouds, getting increasingly frustrated that we still haven't gotten the genetic results yet. I emailed Dr. V. again yesterday and she said she still hadn't received anything and would call the lab, but I hadn't heard from her yet today. So I emailed Jason at work, telling him how frustrated I am and how I wish I had the lab report in front of me so I could call them myself. Then it hit me...I may not have the lab report but I do have internet! So I googled Gene Dx Lab in Maryland and sure enough, their website popped up with their phone number.

I called and spoke to a receptionist, who looked in the computer and said that the results were still with the "report writing" department and to have my geneticist call Dr. R. for further information. Not satisfied with that answer I asked to be transferred to Dr. R. right away. The receptionist said "sure, but I doubt he could tell you anything you'd actually understand". I let that comment slide :)

Dr. R. answered the phone right away and I explained who I was and why I was calling. Within minutes he had the results for me. Are you ready????

MY MOTHER CARRIES THE SAME DELETION AS JOEY AND ME!!!!!!!

This is the best possible news we could have received, and we didn't expect it at all. The reason it is such great news is that it tells us that this deletion has already been passed down from a mother to a child (my Mom to me) with no ill-effects. Therefore, Joey DOES NOT have Angelman Syndrome! The deletion means absolutely nothing, it's just an incidental finding in our bloodline not related at all to Joey's issues. So this means Jason and I can have more children!

Dr. V. has no idea that we already know this information, so we will await her phone call. I'm sure she will likely want to see us one last time to review what these results mean, but it's already been explained to us so many times what each possible result would mean so I am pretty confident that we are now done with genetic testing. Perhaps in another 5 years there will be advancements in genetic science that will allow for even more deatiled testing, but for now we are DONE.

I will post more once we've spoken to Dr. V. but for now I hope everyone has as great a weekend as our family will :)

- P, J & J

The Results are in...Almost.

2008-05-17T09:45:00.003-04:00

We received this email from Dr. V. yesterday:

Hello,
I checked again with the lab in the US and they say they have just finished the testing on Joseph's grandparents. The results are now being checked and the report is being written, so I should have something to report to you by the middle to end of next week. I think Monday is a day off in the States too, so they won't have anything for me on Tuesday. I'll let you know as soon as I get something from the lab.
Regards,
Dr. V.

So it looks like our wait is almost over!

I also managed to get a hold of' Dr. M.'s nurse for the results of Joey's EMG and Evoked Potentials tests, both were normal. Yay!

On a different topic, Joey had a physiotherapy appointment on Thursday and we were given 2 new pieces of equipment for Joey to use for as long as he needs them, a walker and a stander. The walker is pretty intimidating-looking, very clinical indeed. Joey's PT referred to it as the "Green Monster". I'll take a picure of him in it sometime this weekend. I was worried he would protest as soon as he got in it, but he didn't. He just kind of stood there and explored this contraption he was in, but there were no tears. He 's not actually walking in it yet, it'll probably take some time before he gets the hang of it. The same thing happened with his Jolly Jumper..the first time we put him in it he just hung there, not really sure what to do but not entirely unhappy about it. Now he's an old pro and jumps around like crazy. I'm sure in a few weeks he'll be walking all over the place in the Green Monster, but for now it's good that he's putting pressure on his legs and building up some muscle tone in preparation for walking. I hope walking comes sooner rather than later, my back is killing me! But I'm also excited for Joey to have even more independence and be able to get where he wants to go. I think we'll have to buy some baby gates soon!

Enjoy your long weekend :)

P, J & J

Another Day, Another Neuro Consult

2008-05-15T06:35:00.002-04:00

Yesterday was our 4th trip to Sick Kids in Toronto in as many months, this time to meet with our 3rd neurologist, Dr. M. Dr. M is a specialist in Angelman, more specifically the seizures associated with Angelman. He is also heavily involved in genetic research, apparently he spends less than 20% of his time in a clinical setting with patients, the rest of the time he is conducting research studies.

When we first arrived the place was packed and the receptionist asked me"did you not get a call advising this appointment had been cancelled?" I felt like saying "of course we did, we just felt like taking a 1.5 hour drive to downtown Toronto to hang out in your overly crowded waiting room" but I managed to control myself. So despite this appointment being cancelled they squeezed us in with Dr. M., who was immediately confused by our situation. his immediate reaction after looking at the lab report we brought with us was that Joey had a deletion in the UBE3A gene, and therefore has Angelman. We explained what we could about all of the confusion we've experienced in the past few months and he immediately got on the phone and called Dr. V. directly for clarification. After speaking with her he started to get a better idea, but stillwasn't convinced so he went to this amazing website, http://genome.ucsc.edu/ , to look up the UBE3A gene and find exactly where the breakpoint was in the gene. It was quite an amazing thing to watch, and his explanations have been the most clear we've received to date.

Basically, he reiterated what we already know, that it's still unlear what the significance of this deletion is. He wants to wait to get my parents test results back, and if they say anything other than my Mother also has this deletion he would like to meet again. He says that current tests wouldn't be able to further define the significance of the deletion in this case, but that he could hook us up with a research study somewhere that would be interested in looking into it further.

The one thing we forgot to get was the results from Joey's Evoked Potentials and EMG tests 2 weeks ago, so I'll be calling back today for those. I imagine they're normal, or else someone would have contacted us sooner.

Apparently Dr. V. told Dr. M. that she was going to call the lab yesterday and find out where they're at with my parent's tests and she will follow up with us.

So more waiting, as usual. The good thing is that as of right now we do not have any further trips to North York General or Sick Kids scheduled...YAY!

P, J & J

Lessons from Joey

2008-05-10T22:17:00.005-04:00

This will likely be a 106-part post, with new installments regularly as long as Joey is a part of my life. I keep saying how much he has taught me in two shorts years, and that I am a different (and better,I hope) person for it. So here is installment number one.

"Retard" - A pretty common word, used often as slang to describe others or oneself when they feel that person is acting slow, or not understanding something they should. "Retarded" - A way of describing something that doesn't make sense, that's wrong, silly, backwards. If you have never used those words I congratulate you for being a very sensitive person. As ashamed as I am to admit it, those words used to dominate my slang vocabulary, going all the way back to grade school. It may be a generational thing, like "groovy" was a common word in the sixties. Never once did anyone call me out for the use of those words, no one ever said "hey, I find that hurtful" or "my cousin is developmentally delayed, that's mean". Not once. Not that I consider that an excuse. Not having anyone in my family or circle of friends that experinced and type of disability I was immune to how hateful that word is.

Since having Joey, that word stings. I rarely say anything because I was one of the worst offenders a few years back, and I feel like a hypocrite saying anything now. I can't describe how it makes me feel to hear it used inappropriately, but this amazing 18-year-old high school student can articulate it beautifully for me:

http://www.youtube.com/watch?v=CoqaNG0Ozqc

The most amazing point he makes is this: We don't use racially or religiously derogatory terms, and these are groups of people capable of defending themselves, and therefore have fought long and hard to have eradicated the common and acceptable use of some of the most hateful words in existance. However, the jokes and derogatory comments towards the disabled are not looked upon the same way, they are not as unacceptable, and sadly this is the one group of people that cannot defend themselves.

So we'll just add this to the growing list of things Joey has taught me...the word "retard" as slang no longer exists in my vocabulary. I am trying to become more sensitive to other terms, assumptions and generalizations that other groups of people may find hurtful, because I would never want to purposely make someone feel the way I do whenever I hear the word retard.

So there's my thought for the day :)

On a completely different topic, Joey was weighed on Monday and gained a whole pound plus an ounce! Mealtimes have definitely reverted back to the old days of pudding, yogurt and PediaSure from a bottle, but I'm becoming more and more okay with it. He's shown repeatedly that when he's hungry, he'll eat. He's energentic and growing, so we just need to relax and go with the flow.

That's all for now! To all you mothers out there have a wonderful Mother's Day tomorrow!

P, J & J

Lessons From Joey

Another HUGE Milestone!

Grab the Kleenex

New Neuro, New Meds

Joey's Seizures

Lessons From Ben

Joey's New Tricks

Long Overdue, Lots of News

Ooops! Sorry to leave you hanging.

Benign

More Unanswered Questions

Off to See the Neuro Tomorrow

Mission Accomplished

Neurosurgeon Appointment is Booked

Google is my Best Friend

The MRI Results

Joey's MRI and Ben's First Smile

Another New Walker, Some Cruising and a Healthy Chunky Baby!

Joey Runs Away from Home

Baby Ben Joins the Family

A story about two little boys and a tractor....

Induction is Booked, Anxiety Sets In

Sippy Cup Success!

Pulling to Stand, Again, Again and Again.

Joyful Joey

Big, Big News!

Quick Pregnancy Update

Joey Graduates Preschool and Other Stuff

Ouch!

New Pictures

It's Definitely a BOY!!!!

G-Tube is a No-Go....For Now

Good News, for a Change

This kid is messing with my head

Happy Mother's Day

Gender Confusion, Among Other Things

Let the Complications Begin

G-Tube Update

Happy 3rd Birthday to Joey

We're Still Here

That was Fast!

RSV

Nostalgia

Joey's Cousin is Here!

Happy New Year!

Cheers to 2009!

Caught on Tape!

A Lovely Day for a Walk

Another Down, then a Big Up! (quite literally)

Merry Christmas!

No News = Good News? I'm Not so Sure.

The Ladder

Ups and Downs

Joey's Weigh-In

Joey's New Room

Mystery Overall Fairy

New Videos!

How to Ask for what You Want...And Get it!

The Quest for the Right Clothing

Inspiration

Myotonic Dystrophy Test - Take Two

I am being tested...

Pumpkins and Puke

The Test is Done!

Just when we thought we were done....

Our Latest Lesson

First Day of Preschool!

Mustang Joey

Vintage Joey

The Zoo

Lovely Sudbury

Bayley Results

The R-Word, According to Maria Shriver

Lazy Weekend at the Cottage

Joey Gets "Accepted" to Nursery School!

New Name for the Blog

Lessons from Joey - Part 2

Case Closed

The Final Word, Genetically Speaking

Need a New Name