Monday, January 07, 2008

Kentucky Trip Part 2

Our trip down to see Dr. Mervis and Dr. Morris started off with a bang... a nice, soft, white, winter bang called snow. We started out on Tuesday, January 1 and drove right into rotten road conditions in Connecticut.... don't they plow in that state??? Because there was a threat of a huge snowstorm in New York, we ended up re-routing our trip and went through Pennsylvania and West Virginia to get to Kentucky, instead of our original route down through Ohio. We ended up only driving six or seven hours that first day, then did the final eight on Wednesday. ("We" meaning "Tom" as he did all the driving!)
Michael spent most of the time watching movies (Santa brought a portable DVD player... definitely a lifesaver during this trip since the road conditions weren't great... less stress) and Brady loved playing peek-a-boo, which you can see in the pics! Both kids did great, and I breathed a sigh of relief at that, since Tom and I do like to travel via car around the country. (Although I do believe Tom is all set with driving right now!)
On Thursday we headed in to the University and Brady did his assortment of cognitive testing, playing, etc. After we were done for the day, we went to the Louisville Slugger Museum for their factory tour... it was so cool! We saw all the Boston Red Sox official bats (Ahem... you know, the World Series Champs??) and Michael tried to hit a few 50 mile hour pitches. We also took in "Alvin and the Chipmunks" that night.

The next day Brady did two more tests and then we conferenced with Dr. Mervis and Dr. Morris. (It seemed to me that he did more testing back in June, but that may be because of his age.) When we sat with the doctors, there was also a developmental pediatrician there, as well as a geneticist. Dr. Mervis felt that his strongest advancement has been in his PT work, and that he has not made any new strides in OT and Speech since June. In fact, she felt that he did little more last June in fine motor skills than this time. I do see where he has not advanced very much in these two areas, although I do feel he is further along than last summer. It is questionable at this point whether Brady is having issues with his strength, his eyesight, or his understanding (neuro). Dr. Morris felt he was trying to pick up blocks by moving his whole shoulder, as opposed to just his arm or hand, which may indicate more muscle issue. That is all just plain PT work, nothing new. Dr. Morris also felt he was trying to focus in on the items to pick up, which would be issues with his strabismus,
which he is having surgery for on February 5.

In terms of his "understanding", he is having an MRI this Friday and Dr. Morris is interested in seeing the results of that, upon which she will contact me with another report. Dr. Morris feels we may see irregular brain growth patterns, more so that other WS children. She feels that Brady has "Unruly Hair Scalp" ... no I am not kidding! What this basically means, is that his a la natural Mohawk is due to the fact he has more than one "swirl" in his hair growth (we all have one at the top back part of our head). We get these swirls when our brain is forming and growing in utero. Brady having more than one means his brain did not form in the typical fashion everyone else's did. What does this mean? We won't know til after the MRI. It could show nothing, it could show abnormal brain growth consistent with other WS people, or it could be more than usual abnormal brain growth. It may explain why Brady is more delayed than other WS kids his age.

We also received directions on what to work on with Brady, i.e. using objects appropriately (comb, cup, etc.), rolling a ball, books, etc. (I did point out he obviously doesn't know how to use a comb because we never use one on him, LOL!). We also need to have our OT help us help him hold objects to the best of his ability with his radioulnar synostosis. Usually kids just adapt, so we have to help him figure it out for things he hasn't done yet, like the bottle and cup. He does it with a spoon, toothbrush and his pacifier.

We won't be back now to visit Dr. Mervis until next year - although I will move our next trip back a few more months to April-ish so we'll have warmer weather. I was glad we made the trip, although I think I got more information last June. I don't think I was too surprised at what they said, but it will be interesting to hear what they say at Children's Hospital next week when we go to THEIR WS clinic


Laura said...

Glad you made it there safely. I was thinking about you as I watched all that snow coming down!

Sounds like you were given a good direction in which to go to help Brady. I'm anxious to hear what you think of the Children's WS Clinic. We were able to get in only 3 weeks after Michaela's diagnosis. I'd love to compare notes and see if it's worth another trip for her.
You will be in our thoughts and prayers, hoping for good news with the MRI. Michaela is scheduled for a brain MRI in February, also. The Endocrinologist feels there may be an abnormality or a tumor in/on her pituitary. What's up with these kiddos and their wierd issues.....geesh!

Heather said...

Kerry, just to help you feel better for now, Caleb was born with a natural Mohawk too. His hair grows in many wierd patterns and directions. His MRI was fine and hopefully B's will be too!

Julie said...

Glad you guys got there safely. Noah's hair is crazy too. He got the double whammy, crazy growth patterns and my natural curl. I hope your MRI goes well. We have decided not to go to Kentucky. I just don't know if it would really change anything, and it would be such a long trip for Noah. He sees his child developemental pediatrician and so far I feel satisfied with the info we get there. It is interesting to here the info that those of you who to go come back with. By the way love the peek a boo pictures.

Lisa R said...

If anyone has unruley hair it is Tatum...LOL although brady is a close 2nd HAH....they played so well together I think he was just haovng a off day for them....good luck at childrens

Amy said...

Wow, that is a lot to take in Kerry. How are you feeling? Avery has just one swirl but it is pretty vicious at that. Glad your trip was fruitful! We are going to wait just one more year to go when Avery is older has more things to test, and hopefully when it is warmer as well.lisa is a trip, eh?! And isnt' Tatum even more gorgeous in person?! Pictures don't do those eyes justice.

Tara said...

Wow-sounds like you got a ton of information. I will be thinking of you and hoping for good news on the MRI. Hope you are able to rest up from your trip!

Every minute counts.... said...

I too am glad you made it safely there and back. It does sound like you got a lot of information in a short amount of time with even more to come. I too am interested in what the WS Clinic at Children's says compaired to Louisville. Funny you mention the hair swirls...My oldest(the extra smart one) has a double cowlick on the top of his head....very interesting to me! I hope that Brady's MRI shows good news and not bad. I agree with Laura, leave it up to our kids to have the weird issues!!


Michelle said...

it sounds like a productive trip with some good information. That is interesting about the hair scalp though!

Michelle, Tim, Aidan & Ari said...

Hair patterns! Very interesting!
Glad you had a good trip and we will be hoping that the MRI brings only good news. Is this your first trip to Children's Clinic? We went a couple years ago and we will be going back this spring. It's so exhausting mentally and physically. Good luck and let us know how little Brady makes out!

margaret said...

In case you forgot this.. Kerry, you are an amazing person!

Love being a fly on your wall.. have a fun day! Margaret