Dear Aunt Kathleen

Dear Aunt Kathleen,

Thank you very much for watching me on Wednesday. I had a lot of fun staring at Luke and Trey and watching "Ellen".

My mom said I had to apologize for sticking my tongue out at you, giving you raspberries and pulling your hair. She said I also had to apologize for yelling for three hours and not taking my nap. She did say she was proud of me that I let you eat your lunch and only started yelling again when you took the last bit of your sandwich.

I guess I am also sorry that since you had to carry me around so much that you did nothing but sit on the couch after I left at 3 o'clock until your bedtime, since you are pregnant with my cousin. I guess since you couldn't make dinner and had to order out, it should come out of my allowance. So, in 2012 I will give you $30.

I hope you remember how cute I am and this won't reflect on any future presents.

Love, Brady

A good read

I just finished an amazing book my girlfriend recommended - The Memory Keeper's Daughter by Kim Edwards. It is about a doctor who delivers his twins during a blizzard in 1964. His son is born healthy, his daughter has Down's syndrome. He tells his nurse to take away the daughter and leave her at an institution, and then tells his wife the baby was born stillborn. After seeing the harshness of the institution, the nurse keeps the baby and raises her as her own. The book is about the parallel lives of these two children and their families.

I have to say, I was a bit nervous about reading the story and put it off for a little while. I thought it would be too sad, something I never really catered to before, but since having Brady I have been more sensitive. I needn't have worried; the book is more supportive and powerful than I expected. I highly recommend it to everyone, regardless if they have a special needs child or not.

It's amazing the changes in the world in regards to special needs children. I have to say, we are lucky Brady was born when he was. First, to actually GET a diagnosis of William's syndrome, and secondly, the services that are out there at his disposal. Speech, PT, OT... they all help to mold his abilities. And then to have plans in place at schools and work environments. It's not perfect yet, but it is a far cry from 1964, where a father is almost excused for his dismissal of his daughter. And that was only 43 years ago - imagine what life will be like in another 43 years.

A man of many hats

While cleaning out Brady's clothes we came upon an exorbitant amount of hats, some we've never worn, so we needed to see if they still fit. So here, for your enjoyment, is the latest hat craze in New England!

That Magical Age

Awhile ago and on more than one occasion, I've been told about the "magical" age. That magical age - 17 months - where the child starts to do more, act more, become more of a toddler than a drooly baby. Yesterday was Brady's 17-month birthday. Do I think there has been magic in the making? Even though I may jinx it all -I will say yes.


For awhile now Brady has been progressing with the little things - reaching out and grabbing more, mimicking, muscle strength increasing, eating food more, gaining weight... and little things that normally you may not notice on a typical child. Things like little looks he gives you that seems he understands, more and more half smiles at the appropriate times, sitting unassisted for a length of time while playing... heck, just playing. He won't be walking next week, not even crawling, but he seems to be on the cusp of great things happening. For so long Brady has been a baby. He actually needs a haircut but we haven't done that yet because... he was a baby.


So as he grows, he can start to do big-boy things... like go to school! Brdy and I went to the Early Intervention playgroup yesterday. It was held in their center and the group we joined was for 9-to-12-month old babies. His PT felt this was a good age group for him to be in since he was delayed by that much and I agreed. No need for him to be laying around while other 17-month olds ran by him. The children in this playgroup all receive services from EI for one reason or another. I did mention at the group that Brady had WS to explain why he was in a younger playgroup, but I don't know what challenges the other children face. One little girl is a year old and just starting to crawl, but that was all I saw. There were five of us there, with one child transitioning out next week. The two women who ran the group (a PT and a ST) said there are 10 enrolled but usually only 5 come each week.


The center was very clean; the toys get put in the dishwasher or spray cleaned after each use. The multitude of "educational" toys were plentiful, and an adorable table sitting no higher than a foot off the floor served as the spot for snacktime with little seats with no-slip padding for the children to sit in. Everyone was very nice, the leaders were very entertaining and integrated with the kids all the time. It was a very friendly room.


So you are now saying, "So... what's the problem?" Well, Brady did not seem as pleased as I was to be there. Very much out of character, he cried a lot, flung his back out and went all stiff so I couldn't bend his legs. He would look around at the kids a lot --seemed to watch a little girl named Lauren the most, who kept trying to take his glasses off -- but would then go into a freak-out mode, then settle, on and on. The PT wondered if he was overstimulated, but while it is possible, it doesn't seem likely. It was no more louder in there than in my own house, or my sister's (she has four boys), or the mall, or the school I am at all the time. I definitely think there was one toy that had a high pitch that bugged him, but that wasn't going constantly. Case in point, we went to the elementary school tonight for an educational fair and, like always, he was fine.


So we'll try again next Tuesday! He sat at the table like the others and had some bottle, even chewed on a few Puffs. He looked around to everyone constantly as they ate their snacks. Maybe next week it won't be "new" so he'll deal better.


Funny how this post started with the "he's doing better in life" mode and ended with the "he screams at playgroup" mode... yet it still all describes Brady. What a complex child.

Yesterday I attended the New England region Mother's Luncheon at the home of NE chair Laura Spinney. I was excited to go and speak to these women face to face about issues no one but these women understand. I was also especially excited to meet Teresa, Clare's mother, face to face. After conversing online for quite some time now, it was thrilling to be able to sit and chat in the same room! It was like hooking up with an old college friend you hadn't seen in awhile... no awkwardness - just a big hug!

The 12 or so women who attended had children who ranged from 23 years old down to four-months and a new diagnosis. I wish I had a group like this to go to after Brady's diagnosis; I think I would have had some questions answered and some fears alleviated. One of the biggest discussions was about how a lot of problems aren't WS related at all - most of the problems the mothers were having were the same problems that typical kids have. One mother commented that her 15 year old daughter likes to hang out with her boyfriend all the time; another mentioned that her daughter's friends were upset because her daughter ate with the boys at lunch instead of them -- all typical kid stuff.

I fall victim to this all the time. Whenever I have a problem with Brady my first thought is "How is this related to William's?" For example, he has been back to waking up a lot at night. One day he only had a two hour nap - surprise, he went to bed at 6:30 and woke up the next morning. The next day he had the same nap - wow! Slept again all night. Folks, this isn't a William's thing - it's a if-you-sleep-all-day-you-won't-sleep-at-night thing. Doink! [hand slapping forehead in utter amazement.]

It was also interesting to hear the differences in development - one two year old couldn't speak, another could but couldn't crawl, one mother does no extra therapies, another does as many as she can. It was all a respectful conversation with no "right" answers, just different approaches. Pictures were passed around and we all oohed and ahhed over these gorgeous kids. Plus we met our host's daughter, eight-year-old Michaela who was nothing but smiles for all the guests. It was the first time I met a child other than Brady who had William's and in a sense I was surprised at how "normal" she was. I think you have it in your head that this syndrome makes you a special needs child, so there should be something different about them. Nope. She seemed like my son Michael who is the same age. And after listening to her mother talk about her, I think Michaela acts like my Michael as well!

It sounds like there will be more activities planned for our area, which I am very excited about. I not only enjoy this community, but I need it to help my child grow. Talking about our experiences is not only therapeutic but helpful for the next guy. I have climbed a lot of hurdles with advice from these moms online and now in person, and I can only thank GOD the internet was discovered when it was. :)

We've had a busy week doctor-wise. On Monday we went to the new orthopedist and today we had cardiology. It was a long appointment today, but mostly on the waiting around end. They zipped through the EKG and the echocardiogram was done within 45 minutes, with an AWAKE Brady, no less. I had hoped he would fall asleep and he was definitely on that way, but he managed to stay awake and watch the flickering lights on the computer screen that showcased all his heart problems. Every so often he would hold onto the scanner the fellow technician held against his heart, as if he were guiding it himself. It wasn't a completely quiet appointment - he would cry out here and there in utter exhaustion, I believe. If he could talk, he probably would have said, "Can't you guys just let me SLEEP??!?!?"

After the echo was done we headed back to the waiting room until we were called to see the doctor. My mother held Brady and we watched the new train display in the center of the room. If I wasn't so tired my mind would have been abuzz with "Is he still getting better?" to "Are we about to get bad news?" Instead, I stretched my legs out and lazily watched Cars on the new plasma TV on the wall. Sometimes, I have learned, it is better to not think at all. This way you don't have high hopes.

I shouldn't have worried. We were called into a room to talk to the doctor. When Brady's cardiologist, Dr. Marx, walked in, he said, "Aren't you happy with how Brady is doing?" with smiles like I have never seen before. I replied, "I don't know - should I be happy?" although I began to think that the echo went well.

Dr. Marx said he has never seen the gradient reduce in pulmonary stenosis and supravalvular aortic stenosis as it has in Brady these past eight months. His SVAS had been as high as 50 and the PS had been 45. Since last June they have been dropping. Today they were both in the 30-33 area. I had asked if it was possible they were decreasing because he was getting bigger and gaining weight, which he thought may have little to do with it but he didn't think that was the whole reason. He acknowledged that gradients can decrease but he seemed more suprised that either it is going as fast as it is with Brady, or that the jump is significant. I suppose I should try to understand it better, but once you hear the joy in a doctor's voice, you kind of let everything just float around and concentrate on the good news.

This echo was unsedated, to see if that was also a reason why the numbers have been getting better. The good news on that is also not having to withhold formula from him all morning. Plus you always get a little nervous using a drug to induce sleep on a child who has a heart condition. I will probably be nervous when he goes on the merry-go-round as well. :)

We have now officially moved up to the SIX month mark between appointments! Woo Hoo!!! It will be a crazy September seeing cardiology and genetics back-to-back, but I don't have to think about it until AFTER the summer. Heck, it's not even spring yet! Happy Thursday! :)

New doctor in town

Today we went to Children's to visit a new doctor - an orthopedist. Our pediatrician sent us based on the new diagnosis Brady has, radioulnar synostosis. She figured an othopedist probably wouldn't do anything at this time because of his age, but moreso to be seen by a professional and get Brady's name in the office.

We saw Dr. Bae who was fantastic - we were in and out of the office within 25 minutes, including weight and height check. We could have stayed longer if I had more questions for him, but it was all pretty simple. Basically, there is nothing they will do for Brady in terms of surgery, now or in the future. His arms go all the way to neutral position (like they are ready to clap) and therefore he will be able to adapt to life. He checked Brady's spine (fine!) and told us to check in with him once a year so he can follow along with Brady's progress and check for other things that are common with William's patients.

Brady's yearly assessment

Who is that handsome guy in the mirror??


It's been hard to get on here to write what has been going on in our world. There's the regular life things --my car won't start, working on Cub Scout activities, working, having a cold, caring for sick kids, school vacation, etc. -- and then there's the I'll-update-everyone-on Brady-but-I-don't have-all-the-info-yet, and lastly there's the "where has my head been lately?" question that just looms out there.


So, we'll do the easiest one today: Brady's year assessment from Early Childhood Intervention. Last Saturday, Brady's OT Tara, PT Lisa, and ST Vikki converged on my house for a two-hour year assessment. Brady started PT in February of 2006; ST in June, and OT in August. At this meeting, Brady was tested in areas such as gross motor, speech, fine motor, cognitive, social interaction, self care and communication. We reviewed the old six month goals and made new goals and strategies. His health was documented, a feat Lisa acknowledged took her longer to do than for any other one of her patients since it was a long a lengthly list. She even forgot his latest - radioulnar synostosis - in one part, although she did get his glasses in.


Before the meeting, Lisa asked if I wanted his developmental age written in the report. I guess there are people who may be discouraged or unhappy actually seeing in print the "actual" age the child is performing at. I had no problem with the developmental age; in fact, I was very interested to see where he did lie. Discouraged or unhappy? Nope - I KNOW he's delayed, it's not a secret nor something that I could hide if I had a problem with it. I think knowing what levels he is at will only help me in helping him achieve his goals. Brady's average "age" was about a six-month delay, which everyone seemed to be happy with. His low muscle tone accounted for the lower "age" levels, for example his gross motor was at 5 months (not walking, crawling, or sitting independently, although he is thisclose to mastering that feat) and feeding at six months (he doesn't have the strength to hold a bottle). But his cognitive was at 11 months, social interation and fine motor at nine months and self care at 10 months. The therapists and I agree that in the next few months Brady will be jumping further along... we already see so many differences with him.



We had some happy surprises during the tests. Brady did a few things we didn't realize he could do. He played peek-a-boo with a toy and a blanket, moving the blanket out of the way to see the toy. He also tried to turn pages in a board book. I had started reading with him a while back, but stopped because he didn't seem to be looking at the pages so much. Well, we are all about the books again! (Maybe it's his glasses??)



Another happy surprise came with writing the report. Lisa noted that another reason the report was harder to write for Brady was because they realized there was a lot he seemed to understand but couldn't do, mostly because of his low muscle tone. For example, she pulled a string that was attached to a toy dog on wheels. Brady watched the dog move along. She gave him the string, and he brought his arm back to pull it, watching the dog (this shows he knows the dog was going to move with the string). The string was a bit long and he doesn't really have the strength anyway. But they all acknowledged he was trying to move the dog.


I was actually a little surprised his feeding was at six months because I thought it should be younger, but he had mastered the goals on the 3-6 month age and was only missing one goal in the next age bracket. His feeding has been a lot better, which I am attributing all to not having a cold. When this child has a cold, all bets are off. Just take off for the week because he won't eat food, won't have a bottle (although he ate enough to gain a pound in one week), drip from that nose 24/7. Now that he's not sick, he has been downing the bottles, eating some food, and chatting and attempting his half-smiles more often. He actually seemed to be almost laughing the other day when I kept kissing the back of his head.


We are also still taking the Prevacid. We were taking one tablet every morning but now we are taking 1/2 tablet in the morning and 1/2 tablet in the evening. Both ways last 24 hours. I am not sold that it is working, but since it is not hurting I am going to keep at it another month.

We are all really pleased with Brady's progress and the assessment. His OT is off on maternity leave after tomorrow, but I opted not to get a new OT. She is going to call in and we'll see her once a month. She is fabulous and very knowledgable and I would hate the idea of breaking someone new in. We're going to start going to a playgroup sponsored by Early Intervention so that will replace the hour we had OT. The playgroup is in the 9-to-12 month age range, which is applicable for him. Hopefully we will like it and get to know a few others in the local area in similar situations.


I feel really good about the assessment - I feel like Brady is on a path and we're working it right. His personality is starting to show through a little more and I can't wait to see what a cute little bugger he is going to be.