Milestones for my little man : Austin can sit up on his own and get down on his own from a sitting position. He can roll and scoots everywhere. He flaps his arms and legs when he is happy and gets really excited. He can pull himself up to a tall kneel all by himself. He can stand with you holding him under his arms. He is always happy and my joy. He had to have a g-tube put in at 5wks old that he was fed through and because he learned to eat enough on his own, it was removed in 2007. He can drink thickened liquids with a sippy cup and he can eat most table food. The foods he can have are mostly spoon fed to him. We are so excited that this winter he has stayed pretty healthy. All of his AWESOME accomplishments have happened with the grace of God and amazing therapist to help him along the way. It is teamwork. He is in the 1st grade and has a one on one nurse that goes to school with him everyday. He receives PT, OT, Speech and Aug. Comm. services, which are such a blessing for us to have.
Austin was diagnosed with Mecp2 duplication syndrome along with Cri Du Chat syndrome in Feb. 2008. He had a lot of test done to try and figure out what all he had going on before actually being diagnosed. His diagnosis is so rare and complex that he is the only one in the world documented with the combination of these two chromosomes. The Dr. that ended up running the test that would diagnose him was a neurogenetics dr. Some of the more difficult challenges we went through with him accrued when he was 4 mths old. At 4 mths. old he had such difficulty breathing that he would have episodes where he would completely stop breathing. Because of this he ended up requiring a tracheotomy and placed on a ventilator for support. He was able to be weaned off the vent about 2yrs old but still needed the trach to help him breath because he had paralysis in his vocal cords. He continues to have hospital stays due to respiratory issues. He also has a port-a-cath that was placed to help make his frequent hospital stays more manageable with antibiotics. This is to take the place of getting IV's all the time. He was briefly with out his trach in July of 07 but due to his frequent reoccurring respiratory infections he was recanulized with the trach in Jan of 08. He continues to use the trach, humidity collar and is on an 02 machine while sleeping. Also, because of having a trach he requires frequent suctioning to help keep his airway clear. He was recently put on a seizure medicine in Nov.09 in hopes of preventing the seizures when he gets very sick.
I continue to praise God for the life he has given to Austin and I pray as his mom, I can help him make the most of it every minute of his life
Last week, Austin had a double ear infection and a fever of 102. He fell asleep on the floor like this probably three different times. Well, if you know Austin, he has constant energy and for him to fall asleep on the floor, it is not normal. I felt for him last week, but he is much better now! Then on Friday night Abby got sick with the stomach flu and threw up all night long. Saturday during the day she was doing better. Saturday night she was not feeling well with a fever and threw up again. Today, she is feeling better, but she is still not eating anything. Then, Saturday night after I got home from shopping, I started to feel like I had the regular flu. Today, I have had body aches. I hope all this sick stuff goes away so we are all feeling better and ready for our spring break vacation!
