Tuesday, May 12, 2009

Jean Alex (Samuel) is doing great. We just went to the Children's Hospital yesterday for a full day of visiting specialists. He is 23 lbs, but I did not remember his height. He is pretty average in length, but slim. He is going to come back in six months to see them again, but this is what we learned yesterday:

His MRI showed no change, which is good news.

It also showed his chiari. He has type 1, 22mm in size. It is quite significant and can probably cause pain and complications. The neurosurgeon asked if he is fussy or showing signs of pain. I said occasionally he grabs or bangs on his head, but is generally very happy and content. So we will just watch and see how he progresses. He may need surgery in the future to help with pain or other symptoms. Type 1 is also found to be genetic, so it's possible other family members can have it. Some people have it without symptoms and find out they have it when having a scan for something non related.

His EEG showed no signs of seizure activity. This doesn't rule out seizures, but he didn't have any at the time of the testing. I haven't noticed any seizure activity at home.

He will be seen at the neuro-develpmental clinic soon. They will be evaluating him and see if he needs extra help in any areas. He is delayed in several areas, particularly speech/communication.

The plastic surgeon plans on doing surgery when he is a little older, using bone from his ribcage to build his nose and remove the lump of stuff the other doctor used. This substance is not expected to last a long time, and can cause infection or loosen, so they will bump up surgery if something like that happens.

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