Leaps and bounds

Wow what a difference in the past three weeks. We started PT with Ms. Pat, she pointed out the low muscle tone and weakness that Dacotah has. He prefers his left side so we are working on "wheelbarrow" and dragging him across the floor in a seated position so he starts using his abdominal muscles more. This will help him be more comfortable sitting instead of leaning/laying down all the time. This is normal in kids with KS, so the good thing is we caught it early enough that there is still hope everything will get corrected.

He's talking!!! Not a lot but he's talking some more and repeating when we tell him he has to say something in order to get it. We had a day where he wanted cookies and the following "conversation took place"

D *points to the cookies on the shelf* Cookies?
M: How many do you want 1 or 2?
D: 2!
M: Say please
D: peas
M: *hands him 2, and he turns towards sissy and gives her one*
D: Sissy
M:Say thank you
D: tanks

Ms. Katie the speech therapist is happy with his progress, and while no it's not full on sentences they would expect it's progress. Somehow it wasn't communicated that he has KS, so when I brought it up last week, she was shocked but said it wasn't anything to worry about yet. Some kids with KS don't talk at all, or have a very hard time with socialization, we are working diligently each day to get him use to not only talking, but playing with his sister, and with us. He has show some great improvement.

Ms. Mel is coming tomorrow for OT, the past few times she has pulled him away into the den and worked one on one with him. She's able to maintain his attention for a longer time span. She thinks he is making more progress more rapidly to which we all contribute it to him sleeping.... Oh yes let me tell you the fantastic update

Dacotah sleeps..... without any medication to help him sleep!!!!!!!! I believe in short term medication use and after about four weeks of the visteril on a nightly basis, he started going to sleep with nursing, and then wasn't waking up again until around 6am to nurse again before the sun came up. Well..... I decided to do a trial of not going him the medicine to see how he does. We are at a week, not only is he sleeping okay *knock on the wood* we have cut out all nursing except the night time one for bedtime. He is taking naps during the day (I won't say he doesn't whine to nurse but I just tell him they are night night until bedtime). STEPS and BIG STEPS.... I am hopeful that it will continue.

We got news from the orthotics that his ankle braces are in. Mamaw bought him new shoes in two sizes (we are hopeful the braces will fit into the shoes). Honestly I dread Thursday, but he may surprise us and be very much okay with them. I talked to PT about them on Tuesday last week and she said if he wears them, it will fix his ligament issues, and maybe in a few years he can graduate to just having inserts inside his shoes with no braces. (long term goal) Also attributed to the KS.

We have him scheduled with an endocrinologist in November in JC, I've been doing research and when parents find out their baby is going to be born with KS, they schedule Testerone shots to be given three times during their first year. I'm going to see what our options are given he's past that age, the nurse at the office said there is a possibility they will still agree to give it a try based on his T levels etc. I'll know more after that visit.

He has done fantastic in preschool. I'm hoping soon he will be able to go 4-5 half days instead of the 3, I was super hesitant to commit to more days because I wasn't sure how well he would adapt, but again other than the lack of talking he's right with his sister enjoying music time, and playing with his friends.