Sunday, November 11, 2007

Howdy!

YAAAAWWWNNNNN... oh!... here I am!

That was a nice week nap of blogging I took! When you do the 100-mile dash of everyday posting for 31 days, sometimes you just need a little snooze alarm. Not that there was anything y'all were missing... it's been pretty quiet over on this front. We did Brady's two-year-old pictures, which came out adorable. I did notice that there was NO difference in his one-year-old and two-year-old pictures -- except his hair was longer. The rest of his face looked exactly the same, chubby cheeks and all.

Last Thursday we got a call from Children's Hospital asking us if we would like to move up our January appointment in Neurology to Friday. This was a first time visit recommended to us by Brady's geneticist. She felt because of his delays he should see someone there to rule out anything other than Williams. Plus, both the geneticist and Dr. Mervis in Kentucky felt he was still exhibiting some baby behavior that he should have outgrown by now, not typical of WS.

So, we trekked in, was seen 20 minutes late by a resident who examined Brady then reported his findings to his "supervisor". The resident was clueless about WS, admittedly so, which immediately made me feel concerned. I do appreciate his willingness to admit he knew nothing about WS, but how can he properly examine this child when he doesn't realize what is "typical" for WS and what isn't? He did spend a lot of time with him, and a lot of time discussing with his boss, then they both came in and clarified a few more things. I felt a bit better at that point.

They determined that his delays seemed typical of WS. One thing that he still has not outgrown from his baby stage is his flapping of the arms when he gets excited. He used to do it a lot more, for a lot of reasons, but it has definitely decreased. The doctor felt that since he is only two, his behavior has not regressed, and he seems to be "growing out" of the stage, they are not concerned. If he was four and doing that, it would be a different story. They did order a blood test to check his thyroid, since it hasn't been checked before, and an MRI to check for anything they are missing. Basically, all good news; not jumping for joy over the docs, but I know it could be worse :)

On another good note, I ran out of Enfamil last week, so I've been giving Brady half Calicilo, half whole milk for his bottle, on top of yogurt and ice cream. We had his calcium level checked and it has not gone up! He is at 10.3, normal is 8.5 to 10.5. Yeah! I am going to keep his bottle like this until we see the nutritionist in the beginning of December, then I will probably stop the Calicilo. It is covered under insurance, so it doesn't really matter. I am really trying to get him moving on the food ~ taking it, chewing it - ANYTHING! Michael gets nervous when he sees Brady gagging when there is food in the middle of his tongue - -we're all yelling, "Just move it, Brady! You can do it!" His little cheerleader section :)

12 comments:

Laura said...

Hi Kerry,
It was great to see you yesterday! We'll have to get together again soon, next time with families.
Sounds like Brady is doing great. As for the flapping....that Dr. gave you a bunch of c**p. Michaela still flaps when she's extremely excited, I had started to get worried about it until I went to bowling club with the group of 3rd-5th graders (all typical kids) and saw at least 10 of them flapping or doing something similar. I've been told over and over, "before you freak about something she does, stop....take a look at the kids around her, is she doing anything so different than the group...if no, don't worry" It's been great advice.

Heather said...

Ya know reading your posts bring a lot of supressed memories. I wish I would have had a journal like this when Caleb was little.
flapping when excited! Yeah Caleb does that here and there too. More when he was younger, but still here and there. hey when our WS kids get excited, they REALLY get excited with their whole body.
Glad the neurologist appt. went okay. I know what you mean about the doc's though. I get the ones who don't know anything about WS, but pretend like they do. LOL! :(

camille said...

Hi Kerry,
Connor still flaps when he gets excited too. And he's around Brady's age. I don't know if Brady would be a fan of this or not, but one of the first foods I was able to get Connor to eat was graham sticks. i would break them into tiny pieces and even if he didn't complete chew them, he had enough saliva (finally the drool actually helps) to dissolve them. Do you think he might go for that?

Julie said...

Noah still flaps his arms at times. We have the exact food issues. He works it out or spits it out, but rarely gags anymore. He does make quite a mess though. :) Noah drinks pedia sure. I have really been considering weening him off it onto milk because if doesnt drink as much he actually eats better. I cut out 8 oz. the last 2 days and actually ate breakfast. What do you think? He still drinks 16 oz. Also, if our childs calcium is normal is it okay for them to drink regular milk?

Amy said...

Hey sister! Great news on the neuro exam. I HATE residents, lol, totally worthless. Jacka***es! Avery has never been a big "flapper." Anyway, have you tried a ZVibe? Get one!!ttp://www.equipmentshop.com/ProductDetail.asp?ProductID=165
It has been great for Avery.
XOXO
Amy

Kerry said...

Thanks all for your insight~ I am always learning here!

Camille- I am trying everything! I will do that tomorrow with the ST. Some days are better than others, sigh!

Julie - It's always better for them to eat more food than just drink it all the time. We always watch Brady's weight and before he always gained better drinking, but it's not going to help him in the long run. Just keep an eye on his weight if it's a concern.

Amy - my feeding guru :) - how do you find these things?? This looks cool~

Every minute counts.... said...

Glad neurology went well. I hope that the MRI shows nothing new!
Keep up the good work on the eating solid food..it will come.

Noel

Tara said...

Glad things went well with the neurologist. I'm like Heather - when these kids get excited or happy they do it with their entire body. We get so tickled at Payton because it's like she doesn't know what to do when she's so happy...it's great! I remember one of Payton's first foods was cheetos (the puffed kind)...she would kinda suck on them and they would dissolve. Good for you on cheering him on - man, it is nervewracking when they gag....I still get nervous when payton does that!!

Michelle said...

I took a little blogging break too; it's hard to come up with things to post about every day! :)

Sounds like overall it was an ok appt despite them not really having any experience with WS!

Ava Jewel Leilana said...

Everyday, girls I just don't know how you do it, I still am tring to update our visit last Friday with the William Syndrome clinic that led us to the ER!

I have to agree with Amy the Zvibe is great, I'm not sure what the link was that she gave you but I got mine from talk tools.

Glad things went well at the doctors and I must say I love the picture in the previous post! To cute.

Katie said...

Jaiden flaps when he is excited... or really nervous for that matter!
Glad the Neuro went well :)
xxoo

Penny said...

Hi Kerry,

Keith flaps a lot still and he is four. It has defintely decresed as he has gotten older, but he still does it when he's excited.