Thursday, January 12, 2012


I had a wonderful time with Ambrose over my Christmas break from school. Ambrose's grandpa visited. He has been feeling pretty well, but we are still chasing his Potassium levels trying to find just the right dose. His last level was 3.3, low again. He is having some occasional unexplained desats. I suspect it may be his positional airway. He has a custom angled trach and it has been nearly 2 years since the design has been modified. It may be time as he has grown quite a bit. He is now 32.5" tall. He will be seeing his ENT dr, as well as several others at the end of January. The ENT dr will scope his trach and see if it is still fitting well.
Ambrose decided to ring in the new year by tumbling out of his tumbleform chair. (His first fall.) He has scholeosis and leans to the left. I never used a seatbelt in his tumbleform. I didn't think he could get out of it due to its contoured shape and his limited movement. Well, surprise. I had my back turned and heard a thud. There he was lying face down on the carpet. I think he just leaned more and more into his curve as he seemed to have fallen out the side. Fortunately, he did not get hurt. He had a surprised look on his face. I immediately scooped him up and covered him with kisses. He cried about 15 minutes later for a few minutes and that was all. I feel so bad and have been strapping him in ever since.
On January 2nd, he became older than Sweet Angel Sophia, who died 19 days shy of her 4th birthday. Ambrose will be 4 on January 19, 2012. Exciting and scary. I believe Sophia had been the 5th longest surviving child with Taybi-Linder Syndrome, so turning 4 is huge!

1 comment:

  1. oh he looks sooooooooo happy. Happy Birthday early - Little man!!!!!