Wednesday, December 9, 2009

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


















Monday, November 30, 2009

Benign

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

Wednesday, November 25, 2009

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

Tuesday, November 24, 2009

More Unanswered Questions

Rather than re-hashing what happened at our appointment yesterday, which will only make me more angry, I will simply cut and paste the letter I sent to the Associate Pediatrican-in-Chief, Neurology. She is the doctor that called me last week.

Dear Dr. M,

I would like to thank you for taking the time out of what I am sure is a very busy schedule to call me personally regarding Joey's MRI results last week. I appreciate the quick action you took in arranging an appointment for us to meet with Dr. L, and I also appreciate being called again when a cancellation arose for yesterday, allowing us to be seen a week earlier.

However, upon meeting with Dr. L yesterday I was immediately reminded why I had requested for Joey to be transferred to another neurologist. Either Dr. L is constantly plagued with "computer problems" or it has been an unlucky coincidence that each of the three times we've met with him he has been unable to access the files he needed. He began our appointment by apologizing that we waited so long but he had to try 3 different computers to view the CD that contained the images from Joey's first MRI in 2006, though he did give the impression that he was able to view them. He quickly explained what was found and then told us that he is "assuming" what Joey has is an arachnoid cyst but he wasn't sure. I then told him that the MRI report said that Joey does in fact have an arachnoid cyst so I was confused as to why he wasn't sure that was what Joey has, he then concurred and said that yes, Joey has an arachnoid cyst. He told us that is unlikely that surgical intervention was necessary, given that there was no indication the cyst was causing pressure to the brain and given that Joey was not exhibiting any symptoms. When I explained a few things that I suspected could be attributed to this cyst, such as his poor appetite and frequent emotional outbursts that had no rhyme or reason to them, he told us that the cyst could not be causing these symptoms. I felt that perhaps the emotional outbursts were an indication that Joey was suffering from a headaches and Dr. L said he "doubted that very much", despite the fact the Joey is completely non-verbal and intellectually he functions at approximately the level of a nine-month-old. I asked what we should be looking for, he advised us that "waking in the middle of the night screaming in pain and vomiting" was a good indicator of a headache, and also explained what seizures can look like. It was apparent that these were the only two symptoms that Dr. L would accept as being a result of the cyst.

I came prepared with a list of questions, but each time I attempted to ask one I was cut off. At one point I asked what the part of the brain where Joey's cyst is located is responsible for, and he said it really only dealt with emotions. When I asked why it would then not be reasonable to suggest that it could be related to Joey's emotional outbursts he was unable to answer me.

After several attempts Dr. L was able to pull up an image of Joey's most recent MRI to show me the cyst. To me, it appeared to be occupying quite a large space in the brain so I asked how it was that he could be sure that it was not causing pressure, again, he was unable to answer this question for me but rather suggested an eye exam would be useful to make sure there was no pressure on the brain. I asked if it was possible for this cyst to rupture, Dr. L said it was not. When I said that I had done some reading that said it was possible for an arachnoid cyst to rupture causing further problems like hemorrhage, he changed his answer to say it was possible but that he had never once seen it happen. His attitude towards the fact that I had done some reading, such as him asking me to cite my sources, suggests to me that he does not appreciate people trying to educate themselves before meeting with him.

I asked if this cyst would be considered as growing rapidly or slowly, Dr. L replied that getting to this size over 3 years would be considered slow growth. When I asked how he could be sure it had taken 3 years to grow and not 3 months, since he had already told us it wasn't evident on the first MRI, Dr. L replied that he "may have seen a sliver of it" on the first MRI. At this time I became frustrated with the contradiction in his information and asked him "was it there 3 years ago or wasn't it?" since he had told us not 10 minutes beforehand that it was not on the first MRI. At that point his answer indicated that he had NOT EVEN VIEWED the first MRI images, as he answered me by saying he "could not recall". I still am not clear whether the cyst was there 3 years ago or not, therefore the question of whether this cyst s growing rapidly or slowly is also unanswered.

After a brief physical exam Dr. L told us he would refer us to a neurosurgeon, however I advised him that we already had an appointment booked with Dr. T in January. He then suggested we look into MEDEK therapy with Esther Fink, something he suggested to me over 2 years ago, but doesn't seem to know that Ms. Fink is not even accredited by the doctor who developed the therapy! He also recommended horseback therapy...I am sure he was trying to be helpful but after a frustrating 20 minutes of unanswered questions it was like a slap in the face to be told that "the hypotonic kids" seem to respond to animals. I may not be a neurologist but I am an educated person, and I didn't travel all the way to a world-class hospital to be told by a specialist to get my son involved with horses.

At this point I was so upset that I decided not to ask any further questions and to simply wait until our neurosurgery appointment with Dr. T in January. However since leaving there yesterday I became increasingly upset by our experience yesterday, prompting me to write to you today.

I am sure Dr.L is a skilled and knowledgeable neurologist, but unfortunately his ability to impart that knowledge to the parents of his patients seems greatly impaired. We left our appointment with him extremely frustrated and did not feel that our questions were answered adequately. I don't feel my expectations going into this appointment were unreasonable; I did not expect Dr.L to provide definitive explanations for my son's disabilities, but I did expect a yes or no answer to the question of whether the cyst was there 3 years ago or not an whether this growth would be considered rapid or slow and what the difference would be in regards to how the cyst was treated. Our pediatrician sent this referral marked "urgent" yet Dr. L did not feel there was anything urgent about this, but didn't explain why. I also expected Dr. L to be prepared to meet with us, and I don't feel that he was. We did a lot of preparation in advance to ensure we utilized his time wisely and I don't feel the same consideration has been paid to us. His disorganization and contradictory statements does not inspire the greatest of confidence.

I am not sure how realistic it is to request to be seen by another neurologist at this point. I am hopeful that you may be able to review the images from both of Joey's MRIs and if you are able to agree with Dr. L that there is absolutely nothing urgent about Joey's cyst, that it is growing slowly, is not causing pressure to his brain and is not a factor in Joey's symptoms then I will gladly wait until January to meet with Dr. T.

Respectfully,
Pamela L

Friday, November 20, 2009

Off to See the Neuro Tomorrow

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







Wednesday, November 18, 2009

Mission Accomplished

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

Tuesday, November 17, 2009

Neurosurgeon Appointment is Booked

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

Wednesday, November 11, 2009

Google is my Best Friend

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

Monday, November 9, 2009

The MRI Results

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

Saturday, October 24, 2009

Joey's MRI and Ben's First Smile

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

Monday, October 19, 2009

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

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:

video



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!


video


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






Sunday, October 4, 2009

Joey Runs Away from Home

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!

video


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

Sunday, September 20, 2009

Baby Ben Joins the Family

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






Friday, September 11, 2009

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

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:







video

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

Friday, September 4, 2009

Induction is Booked, Anxiety Sets In

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

Wednesday, September 2, 2009

Sippy Cup Success!

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:


video

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

Monday, August 31, 2009

Pulling to Stand, Again, Again and Again.

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:



video
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