Home Again

We brought Oliver home last night. They decided not to continue with the ACTH and there weren't any further tests we need to do at this time. Once we have our followup with the neurologist in 3 weeks we'll discuss the following things:

1. genetic testing to see if Tobin is a carrier
2. further testing for Oliver involving a skin biopsy to understand which classification of CDG he has. Right now they think it's a CDG II and probably one of the newer forms, possibly a brand new form, which would mean he is the only person in the world diagnosed with the condition. We always knew our little tater tot was one of a kind!
3. A followup to the ACTH - will we re-test his white blood counts at any point and try the ACTH therapy again or will we just keep him on the vigabatrin and hope for the best?
4. Followup EEG? - The neuro fellow at the hospital doesn't want to do too many EEGs so as not to stress him out more than needed. Since he had such a stressful night Sunday night they think that might be what caused his clusters on Monday morning.

We also have appts with a gastro and a follow-up with Opthamology.

We'll know more soon about possibly going to the mayo clinic to meet with the world's expert on CDG.

Tobin was so happy to have his little brother home, and we are all happy to be under one roof again! This morning at 5:55am, I woke up to the sounds of Oliver cooing and laughing in his bed. He did this for about 20 minutes and it just amazes me how cute and happy my little guy is. The best part I can take away from all of this is that he doesn't know that he's different. As long as he is fed and cuddled he is the happiest little baby in the world. I am bringing the flip camera to bed tonight so if he wakes up cooing again I can get it recorded!