Well I haven't posted in a few days. On Wed we went to see the GI Dr, Lucas now weighs 17.4lbs. He said that the tethered spine could be the cause of his major constapation but that isn't something that we can know now, we will need to keep an eye on it. He is also going to discuss with the neurosurgeon to see if the ciari malformation has anything to do with why Lucas dosen't swallow. I am really starting to be concerned with the fact that he will be 1 soon and still isn't eating anything other than formula, what will he eat when he is 1, one can't survive on formula alone..... Dylan came with us to the Dr's and then I needed to get the car inspected. He was SUPER good doing both, however, it was to late for me to go anywhere with him as a special treat for being so good, so we went home, and thats when it started. Since the weather was crappy, as usual these days, we didn't go outside and I could tell Dylan was tired, but it was to late for a nap, so everytime I'd so no to something (like playing soccer/football in the house) he would tell me "mommy, your a toy" or his new favorite "your a rapoooochi" (the GI Dr's name is rapucci and Dylan thinks he is getting away with saying a not so nice word when he says his name) so this is what he has been doing for the past 2 days whenever we say/do something he dosen't like. Sofar, I've been a toy, a rapoooochi, a buzz light year, and a giraffe...I figure if with all the bad words out there, being called a toy isn't that bad.
Thursday we went to the ENT Dr for a hearing test. Lucas didn't do so well, we are hoping its because he's only 10mos old and not very good at following directions. They said that his right ear has fluid in it and didn't pass any of the tests, and his left ear didn't pick up any soft sounds. So he is getting retested in 4weeks and then if they results are the same, we are back up to Lebenon to have a sedated test done. Yippee :(
Not much will happen today, the VNA is coming at 9am and thats pretty much it. I'll post later tonight.
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Chin up! I have Chiari Malformation 1. It does effect the ability to swallow. I hope things get better. Please know that you can ask me questions. I just under went the Chiari decompression surgery in Jan. My friend forwarded your post to me.
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