Tuesday, January 30, 2007

Today Brady started on Prevacid for silent reflux... still hasn't eaten a whole lot and if it continues I will have to go back to the pedi office. Sleeping a lot. Not cranky. Even babbling more. Strange child.

We also had Speech and PT. Our PT Lisa and I chatted about Brady's new condition, radioulnar synostosis. She and I practiced saying it over and over - I could spell it, but not say that second word. Anywho, to refresh your memories we found out about this condition in his arms through x-rays both she (the PT) and our OT agreed he needed. Lisa has been saying for months that no matter how much she works his arms, she couldn't get his arms past neutral... meaning she would stretch him out all over, but his arms would never go "palms up" (like receiving a High 5, getting communion, catching a ball, etc). After a duo consult with OT, she recommended Brady get x-rays of his arms from shoulder to wrist and also x-rays of his hips which were also tight.

Thankfully, his hips are fine, they will just continue to be stretched and worked. However, the x-rays did show he has his radius and ulna bones fused together in his forearms. Depending on severity, most people learn to adapt to not turning the arm -- and actually there are only 1 in 200,000 cases because there are so many undiagnosed because of the body's way of acclimating. Brady will probably just use his arm more to feed himself, write, etc. instead of turning his arm like we do. If it is something of a bigger problem later on then he would have surgery. There really is no PT work for this, other than help him do regular tasks not the way we do them. He picks up toys, grabs things, puts spoon to mouth already... so I don't really have too many fears about this.

I am thankful that I have such an amazing PT who caught something that is usually not diagnosed until a child is three. Brady has been blessed with such great therapists who have all gone above and beyond their duties to help him and me. I always sit and gab with them and I feel like they are all people I will be able to count on when I ever lose it. I know they are all dedicated because Brady is such a cute little bugger, but I hope they know how grateful I am for their brilliance and abilities. So, to Lisa, Tara and Vikki... thank you very much!

Tomorrow I will post pictures (if I get a new camera battery) of Brady trying on glasses. :) Stay tuned!

Monday, January 29, 2007

And your next diagnosis is....

Brady is not content to stand by and let us enjoy William's Syndrome for awhile. No, he has to add the heart problems and the hernia surgery when he was two months old. Then he had to add the feeding issues and the Calcilio formula. Oh, wait! There's more! We need to add in the strabismus and glasses we will be picking up this week. What have I forgotten? I need to mention PT, OT, ST, weight checks, synergis shots, blood work... and (drumroll, please) we now have a new line on our resume of diagnoses ...Radioulnar Synostosis (see http://www.childrenshospital.org/az/Site1067/mainpageS1067P0.html).

Not that I am trying to be funny, but it is almost comical that Brady seems to get a new problem to face every other month. I feel bad for my pediatrician, who has such a "can-you-believe-this-is-happening" tone in her voice whenever she tells me new updates. I was concerned when I first heard the news over the phone, but when I read the information at the website above I felt a little relieved. Maybe surgery one day, maybe not, but mostly kids are diagnosed at the age of three, which leads me to believe it must be drawn out in some developmental milestone they are not getting. Brady is fine on picking things up, grabbing, holding the spoon and bringing it to his mouth. Tomorrow we have PT so I will get more info from her and post it.

At first there wasn't any link of Radioulnar Synostosis to WS, but then my sister stumbled across an article mentioning both. It said: "Abstract Limitation of supination and pronation of the forearm has been occasionally described in individuals with Williams syndrome. It was found in 26% of 23 subjects examined, and was associated with a spectrum of severity of radio-ulnar synostosis on radiography. The occurrence of this functional motor impairment in a substantial subset of persons with Williams syndrome is relevant, because its evaluation is important in habilitation planning."

So, this also means we are getting another doctor! Hooray! We are going to go see Orthopedics at Children's Hospital really just to get him in there - his pediatrician doesn't think they will do too much to him when he is so young.

What do I think? Well, to be honest - it's annoying and frustrating and troublesome. I think he'll be fine. I think I'LL have a nervous breakdown adding another "condition" to Brady's existence. But it's certainly not his biggest problem or his worst. He certainly likes to keep us on our toes!

Thursday, January 25, 2007

Happy January!

Brady on Christmas Eve with the big monkey and baby monkey his brother picked out for him, money graciously donated from his Aunt Doris. :)

Hey there, Crazyville is back. First, a few notes:

~ Brady weighs in now at a whopping 15 pounds, 4 ounces, 26 -1/2 inches long! He has been gaining weight terrificly, although he has gone back to the pickiness of eating food again. :( It was nice while it lasted, I suppose. He has a molar coming in on the right which I think is deterring his eating. His nutritionist was very happy at our appointment last week, only adding 1 teasoon olive oil to his jarred food (it's 100 calories - yikes). He is not gagging on his food and is making great strides babbling a bit more and more. His Speech Therapist has heard a distinct "dd" sound and "st" sound - even though she said we were going to work it so Brady says "momma" first, I don't think it's going to happen.

~ X-rays were a bit fun, on the sarcastic side. His PT wanted x-rays from shoulder to wrist, both arms, and his hips. He SCREAMED while we were holding him down to do them - and instantly shut up as soon as we let go. Little bugger!! So we know he wasn't in pain, just MAD! (that Irish temper of his!) We should find out soon that everything is probably all right, just that he's tight as his PT predicts. She just wanted to make sure there wasn't any other problems. Other than that, he is also making great strides with PT - tolerating a lot more, helping himself more by putting his hands out to catch himself, etc. (Who said that magical age was 17 months? I think it may be true. We'll see what happens March 13th!:) )

~ Brady has also been sleeping a lot, but the pedi isn't too worried about it. It's winter, he's hibernating; my words, not hers.

~ Bigger news: Brady Bunch will be sporting some new glasses! The opthamologist has said she feels his vision is fine, but he does tilt his head to allign his eyes to get in focus. When he is really concentrating, his eyes will cross. We won't be patching - the glasses would help strengthen his eyes and he will most likely wear them throughout childhood. As soon as we get them I PROMISE to post some pics. His godmother suggested Harry Potter-ish type. How CUTE is he going to be??!?! I can't stand it!

(above) Brady has already mastered his Cub Scout salute, just using the wrong hand. His grandfather would be so proud!

In other News...

It has been a very strange January. I haven't posted a lot and I think it's because I've had too MUCH to say, rather than the other way around. But one thing I've noticed is that I hesitate to write some things for fear I will anger others or make them feel bad. However, I will take advice from another blogging friend - it's is my blog and I will write what I want and "if I want to complain, I will!" :) Everyone knows people have their own thresholds for what they can tolerate and what they can't. We're all different. I can handle some things like a trooper and other things I obsess about that someone else may feel is inconsequestial. My opinions mean no disrespect to anyone else and are solely mine. I do not pass judgement on those whose opinions are different; in fact, I think it is refreshing and know that we can all learn from each other.

That sounded like the end of a Jerry Springer show.

So... January has been quite crazy. There's been good news, bad news, annoying people, busy days, caring people, yelling matches with an 8-year-old, unfinished projects, doctor visits, the list could go on and on. You know how things happen in threes? Well, it's been three of everything - three people in the hosptial, three people pregnant, three doctor visits, three major projects I'm trying to finish, three hours of sleep I get, three pieces of bad news from friends, etc. The month hasn't been sad or happy; it's been both. I have friends on top of the world, and some in the depths of despair. I have friends I worry about and some I wish wouldn't worry about me at all. And while life is a little like that all the time, it's seems much more pronounced this month. And then the Patriots had to go and LOSE!! :)

I will write more later - I hear the little one ready for his bottle...

Monday, January 15, 2007

An interesting development that I am almost scared to write in case I jinx it... Brady has not been gagging on his food. Here's the difference: I have been feeding him in the Bumbo in the living room where I know he has been a bit distracted. I put the food on his spoon, put his hand on the spoon and guide it to his mouth, so he is attempting to feed himself (someday!). He has been opening his mouth and taking the food in - not gagging or spitting it all out. He is not eating the whole jar, but about 1/3 of it with sips of milk after every two bites. I tell him "two more bites!" then "all done!" and with a big flourish, take his bib off. He is not yelling at the end or throwing his head around to avoid the food.

Like I said, if this jinxes it I will bang my head against the wall. I hope he does this well tomorrow with his Speech therapist.

I have kept him off Zantac and have noticed no changes with any reflux-type behavior. In fact, while he seems to still have some fluid hanging around inside, it has not been as bad. This has me more convinced he has had a bug or other winter-ailment that caused the fluid and his subsequent gagging while not eating. We'll see...

Saturday, January 13, 2007

It's already Saturday??? Where did the week go?? We had our usual OT, Speech and PT... we go to the Nutritionist this week coming up. Just a couple tidbits for my WS mommies out there, any insight is appreciated...

Some interesting notes from OT and PT. We had a dual session this week, where they worked together with Brady comparing notes. Our OT Tara is always shortchanged because Brady is always sleeping when she comes over. We end up chatting a lot, but it has actually been some of the most help. A lot of what we discuss is sensory related and we are all agreeing that Brady has more sensory issues than first thought. For example, the brushing has helped Brady immensely... even though we have fallen off track a bit with it. For those who do the brushing as well, you may understand how it is easy to get sidetracked off it. I do resolve to do better with it, as it always given us great results.

I have spoken about the possibility of Brady having a type of Reflux that is more internal - meaning he doesn't spit up but he still has the same problems as others who do. I took him off any Reflux-agitating foods (tomato, banana, etc) and we did start Zantac two weeks ago. Well... the Zantac made him constipated. I gave him a full week on it to see if it helped him with eating (if the Zantac helped aid in the Reflux then the chances of Brady eating better were very possible). I didn't see any signs of Brady eating better while on the Zantac, plus it made him constipated, which also could be a readon why he didn't eat great.

Brady does seem to gag while eating food; I have to rub his cheek to remind him to chew even when I present the food to the side of his mouth. He moves the food right to the center of his tongue and gags. He didn't used to do this - he used to eat better last fall. The pediatrician had already thought he might have Reflux, and this gagging would also fall under the same reasoning. I had to try the Zantac to see if it would help since the signs seemed to be pointing in that direction.

All Brady's therapists believe he has major sensory issues with his tongue. That's nothing new. But the gagging could be related to that moreso than Reflux. OT suggested using a tongue depresser on his tongue to help desensitize his tongue. He loves the Nuk and the toothbrush, which our ST said because he loves the harder textures. On the WS forum, one mother stated she gives her 11-month old solid food because they figured out she didn't like the smooth texture of the baby food. It was a like a lightbulb went off for me.

The other new thing was that Brady's PT and OT are requesting xrays from his wrists to shoulder on both arms and his hips. He can't turn his forearms up (bring his palms straight up, like you're getting Communion) and cries whenever he is being stretched there. They want to rule out that there's anything there that's preventing him from turning, like a muscle, so they know they aren't hurting him when stretching him out. They think he's probably fine because he can do the opposite stretch. Same for his hips. When we go to the Nutritionist at Children's Hospital we'll get those done plus his calcium testing to make sure we're on track. Last time we did that his calcium had gone down and I predict the same will happen.

Ooh.. one more new thing! He will play with his toy car while sitting at his high chair! I thought he was just trying to pick it up, but he wasn't - he was moving it back and forth with both hands. Such a small feat, but I smiled a bit to myself because I knew it was a big deal. Unfortunately, I did notice he eats better sitting in his Bumba in the living room. Don't think I'll have to worry about him getting obese in front of the TV....

Saturday, January 06, 2007

Saturday's all right for Chillin'

It was gorgeous here in New England today - I think it hit 65 degrees. It makes me worry that come April 29th we'll be hit with a huge snowstorm and then it will jump right into the 90 degree weather. Argh! Didn't we have four seasons when we were kids??

I know I haven't posted pictures - I am trying to get a new battery for my camera. I priced one today at the mall and it was $99. Yikes! I will hit Circuit City tomorrow and hope it is a little cheaper.

Today was lovely - a true Saturday. With the gorgeous weather, I opened the windows and a true comforting breeze aired out the house. Brady slept in quite late so Tom, Michael and I enjoyed our pancakes (from scratch! I ran out of the mix.) and lazily got ready for the day. Tom and Michael were going to Motorcross with friends, staying over in a hotel to swim and relax. Fun for them, and a time for Brady and me to chill out!

After speaking to my sister, we met her at Old Navy then had lunch and went to the mall. At lunchtime I sat Brady in the regular seat in the stroller, not his usual carseat on top. Even though his weight doesn't qualify to turn his carseat around, he is getting taller and I wondered how he'd like seeing the world from a different view. He was checking everything out and sat up pretty well, even though he is still not a great sitter. He will sit for awhile then start to complain as it is hard work. At Panera I held him a few times and people around us were smiling at him and watching him. I grinned, because I know they were all amazed with this cute little tyke with the big hair, mouthful of teeth, and alertness - how amazing for a six month old!! Ha - only he's 15 months next week. :) It doesn't bother me anymore, only makes me mischevious and want to plan some great pranks to fool people. If I could get him to speak English and Spanish when he's four and he looks two... maybe we could end up on Discovery channel... hmmm.

At the mall I wheeled him around back in his carseat on top of the stroller since he was getting tired and would probably fall asleep, which he did. After shopping a bit, Kathleen left us to watch our nephew and I trailed on wandering but buying nothing, which was very responsible of me. :) Even though there were MAJOR sales going on... I couldn't even buy the one gift I was looking for for an upcoming birthday because they were sold out everywhere. I did go to Dunkin Donuts and got a drink off one of my gift cards, a yummy Strawberry Banana Smoothie with only 1,000 calories.

Brady and I left the mall, hit Target with still no sign of the aforementioned gift and headed home. After having some bottle he crashed and I watched some HGTV. I am about to go clean my craft room now and put away some of the clutter lingering around upstairs. I'm hoping for some sappy movie on TV, but it looks like I'll watch Girl, Interrupted for the 1,000th time. I still have the window open upstairs; it is refreshing and makes me yearn for springtime.

In other news, Brady has had a lingering cough that could either be from a cold or his Reflux. If he has Reflux, we're not sure. And he seems to be a little constipated. Which could be from (1) Zantac that he just started taking or (2) his cereal which I switched from Oatmeal to Mixed with barely, wheat and rice, the rice part bothering him or (3) not eating enough food because when he has more formula and little food he gets more constipated, I think. Or he may not be constipated, he might just tightening up his muscles and seem agitated because ___ (fill in the blank). I was hoping not to go back to the pediatrician's until his scheduled appointment for his 15 month checkup and Synergis shot on the 22nd, but I might call next week if he still has the cough. He didn't have any symptoms when he had his ear infection and I hope he didn't get another one. This month we are going to the Nutritionist on the 18th and the Opthamologist on the 22nd also. I am dying to to go to the Opthamologist because I am convinced he can't see very well and I'm wondering if they can tell anything about that. She said last time they may or may not patch depending on how he's doing. He would look really cute in glasses. :)

Okay - I am off to clean. And I promise to post more! I am hoping too post some pictures over the next few days. Happy Weekend!

Monday, January 01, 2007

Scenes from a January house

I look around the office and see discarded Santa wrapping paper in the trash, along with a 2006 desk calendar and after-Christmas bargains stacked on the back shelf.... yep, it's January 1st!

The living room is picked up, the corner where the treee stood is now replaced with a new Exersaucer and soft shake rattles. New DVDs and toys align the shelves that line the perimeter of the room and the rug is vacuumed awaiting for the three therapists who will converge upon the house tomorrow.

The dining room is awash with toys and boxes, cat treat bags and Moon Shoes sit on the table, Christmas books and videos await their final destination, along with stockings and Santa-themed decorations. The Snowman candles openly mock the Santa and Reindeer decorations, as the Snowmen know they are here until the end of January.

The kitchen is awkwardly out of place, with a clean sink and washed-down counters. The cookie jar is still three-quarters full, with snacks taken randomly as people pass by.

Two boys lay sleeping in a blue-lit room, an aquarium rotating a fish background illuminating the room. Carefully, sidestep around the mounds of toys and new clothes to see each one peaceful and at rest.