So it's been awhile. The last time I was on here I mentioned a reccomendation to see a developemental specialist. We began seeing him and love the way he works. We are so blessed to have a doctor with actual faith in my son to tell me he has possibilities of doing many things I was told he would never do. With this doctor, we found out that Luke has a chromosome issue, it is a partial absence of chromosome 6. With this issue it causes the hearing problems, hypotonia, eye issues, and developemental issues. I was told that some of the kids born with this condition have a hard time in life and difficulties learning, other have no problems it just takes time. The doctor seems to hves confidence in Luke because of all the progress he has made so far, with time and therapy he should be able to do many things. BIG SIGH OF RELEIF AND FAITH WERE REVIELED RIGHT THERE! Currently in therapy he has improved dramatically in sitting time he started at 15 seconds in sitting within one week progressed to 3 minutes. He has the ability to hold himself up when he is on knees with mininal support, and the ability to roll over from stomach to back. I have been told to not be suprised if one day he lifts himself up to sit or just starts army crawling because he has the ability to do it but just needs to want it enough. So I am very happy with his improvement so far and cant wait for whats next every day is exciting to see him learn something new.
Back in January Luke was not himself. He was fussy all day, didn't want to work in therapy, he was very sleeping, and I couldn't find out what was going on. I decided to bathe him and while I was washing his hair found that his shunt on his head felt a bit soft, kind of like a pack of gel. It was wierd and very alarming. I took him straight to the emergency room where they found that he was have a shunt malfunction. Surgery was done the next day and the valve was replaced. After that everything was back to normal.
February hits and he was already fully recovered but one day he did not want to wake up. I was moving him, talking to him, lifting him up, and even wet his face but still no response. He was sound asleep breathing was fine but just didn't want to budge. So there I go again to the hospital to find out that it was another malfunction. The neurologist decided to move the tubing and start right from the top of the skull. Since then we have been malfunction free.
In March I took Luke to a swallow study and guess what??? Yes another obsticle in our way. Luke has been aspirating while drinking his bottle. He would begin to choke while drinking any liquids and began to lose weight. We began with speech therapy and I was directed to puree all foods he was no longer able to have baby food because he was in need of the calories. All his liquids needed to be introduced to thick it to thicken them up so he wouldn't choke. He is also currently being treated with vital stem on his throat and cheeks with the therapist. I really must say he is doing great on eating and drinking now. We are now working on weening him off the thick it. He is now in the brackets of his weight but off the chart for his height (lol) he is going to be super tall.
Well just wanted to update everyone on his progress and I will do my best to keep it up. If you are a parent and have questions or need advice about any thing related dont hesitate to ask if I have no problems sharing my experience with anyone. Other mothers sharing their experiense made me feel comfort with everything what was going on and I am very greatful for that.
