Jul. 18, 2007
We've returned from Jax
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Okay, I am cheating. This is a copy of the email I sent out. I lost some email addresses so for those of you who didn't get it, it wasn't selective-just disorganizational issues! We're all doing well. SJ is healing from his double ear infection and his tummy troubles are gone. As always, we're open to questions- and a lot of times the ones people ask are ones we never thought to ask and are good questions, so please challenge us!!
Love-
Taryn
Hi! Hope this finds you doing well, as always. I just wanted to send this out and let everyone know how the appointment went on Monday at Nemour's in Jacksonville.
The geneticist, Dr. Arn, said that she was really impressed with how well SJ is doing. They both made a few off the cuff remarks about how big he had gotten, they apparrently weren't expecting to see him get so big. They said that he is doing great as far as strenth and muscle tone goes. He's developmentally on track/ahead, except for the going from on his back to sitting and crawling. Dr. Arn said that she's not completely convinced that hypochondroplasia is the correct diagnosis. She said that she was expecting to see some things that she didn't see; therefore, she will be sending his x-rays and some basic snapshots of him off to a doctor at UCLA for their opinion on things. He's definitely short, he's about the average height of an 6 month old. His height/weight comparison is good. He's carrying himself really well when he's sitting or scooting on his tummy. Fine motor skills were great. She said that there aren't any restrictions for him really except to keep him from any type of seating that allows him to slouch/hunch over and nothing that will jerk his head back and forth (like a hard swing). She said to stay on top of the ear infections just because hearing loss is related to the hypochondroplasia. She didn't go into a lot of detail on hypo, but I think it was because she's not ready to prepare us for it since she's not sure that's what we're dealing with. She said there are some really rare types of skeletal dysplasia, and one even where only the humerus and femur bones are affected, that we could be dealing with. So we are still in the 'ongoning diagnosis' stage and probably will be for a while, unless the UCLA doctors find something concrete. But she thinks that he's going to do fine whatever the diagnosis might be. They didn't even attempt height predictions because there's not a diagnosis to compare with.
We do have to go get a routine MRI done on his head and neck. Mostly precautionary, and I believe they may help with diagnosing certain conditions. Lord-willing we will get this all done before we move.
We'll continue with the updates, they are just going to slow down a little bit since there is no obvious rush to daignose him (if he has anything, we could have just a short baby!!).
Please continue to pray for the wisdom of the doctors and SJ's health. Also for our big move! We might be moving the date back 1-2 weeks for various reasons, mostly because the places we'd like to rent won't be ready untill then. Please be praying for us and wisdom regarding all of these issues.
Love-
Taryn, Stoker, and SJ
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