Saturday, January 30, 2010

Update and pictures 01-20-10

First picture - Micah is hanging out with Uncle Greg.
Second picture - Playing with Grandma
Third picture - Rough life being fed while you sleep :)
They will take Micah to Cincy on March 1 for an MRI, March 2nd they will meet with the
Doctors from the Vascular Team to decide how the cystic will be removed. On the 4th, he will have the malformation in his throat lasered off. They hope to schedule his swallow test during that week. They will also, redo the Upper GI. Lutheran Hospital didn't do it right.
He has been having trouble with spitting up and they need to figure out what is causing it. They are thinking it's just reflux.
He has been busy with OT, and PT. He has each once a week for an hour. They hope to add Speech also.
I'll try and update more often. Brittany doesn't have Internet at home so she has a hard time getting it updated. Thanks for all your prayers.

Monday, January 4, 2010

Happy New Year!

Wow, it's 2010. Micah turned 4 months old on New Years Eve, and he's more active (and ornery) than ever! He's figured out how to pull hair, pull off my glasses and all sorts of silly things. He's getting stronger by the day and is able to hold his head up pretty steadily when he wants to.
All that said, we don't know what this year will bring... but do we ever really? We go back to Cincy Jan 19th for a meeting with the Hemangioma/Vascular Malformation team as well as an appt with his old (favorite) speech therapist. The team meeting will help us plan the next steps for removing Micah's mass. We are HOPING that they will take a more conservative approach in the next step of this process, but it all depends on the structure of his mass (which we will have to figure out by MRI eventually). We are praying that its macrocystic as opposed to microcystic. If it is macrocystic they may try injecting it with a scarring agent to try to close the pockets down. If it isn't, they'll have to surgically remove it. We're most concerned about the area on his face since every major nerve for the right side of his face runs through that area. They've currently only damaged one facial nerve and we'd like to keep it that way.

Our meeting with the speech therapist will help us decide whether to do another FEES (swallowing/aspirating check). His last one was at 3 weeks old, and we hope that it's time to do another one, and that he passes it this time. That would put us on the road to oral feedings, potentially! That would also be step 1 of 2 for getting his trach OUT!

It's going to be a busy year, I'm sure!