Another HUGE Milestone!

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

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

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

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

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

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

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.

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