Blake is doing great!

He is eating everything in sight. He has graduated to small pieces of chicken, and we switched him to a regular sippy cup with a hard spout, which he has never been able to drink out of before. He got the hang of it right away, and the fact that he can suck hard enough to get something out means his oral tone has greatly improved.

He has been released from his private feeding therapy because he has made so much progress in that area, but he still gets group therapy through Early On 2 x a week. When group ends for the summer we may bring him back so he is getting something, depending on what his swallow study says in May. Hopefully it will show improvement this time and we will be able to wean him off the thickener we use for liquids.

He will age-out of Early On when he turns 3, so in the fall will be starting a special needs preschool. He is so tiny- I can't imagine him going to "real" school! They like for them to ride the bus so they can get to used to what school is like, but I don't think I will be able to bring myself to put him on a bus just yet. Maybe next year...

As far as the upcoming swallow study, I don't see how he could not show improvement and be eating the way that he is. I'm so worried that we are gonna get our hopes up again and find he is still aspirating, and take one giant step backwards in terms of his feeding.

Gross motor wise he is awesome-a little too awesome. Last night I was in the middle of getting him out of bed while making dinner and trying to keep the other kids somewhat under control. I brought him downstairs and put up the gates-except the gate to the stairs. Then I resumed my post in the kitchen. About 10 minutes later I happened to walk past the stairs and saw a flash up at the top. "Tyler," I called. "What are you doing?" Then I realized it wasn't Tyler. It was my ninja toddler, who, seeing an opportunity to get up the forbidden stairs, had soundlessly crept up there when no one was paying attention. I don't know what he had been doing or for how long, but he seemed to be having a great time.

He is "talking" more and more every day, and the other day picked up Nick's shoes and said "shoe" as he threw them into the kitchen (like he does with mostly anything that is in the living room-towards the end of the day you can't even walk through the doorway). Then yesterday he said shirt! Of course, the first time he says it is usually the clearest, then when I try to prove to someone that he can say it it's not too convincing. But I know he can say it, so that's all that matters. Also, the latest sign I have been working on is thank you. Last night he kept giving me cars, and finally tapped me on the arm and when I looked did the sign for thank you, all by himself! He has never done that before without me doing it first. He was telling me to say thank you for sharing his cars! That was really great. When they sign a word without being prompted, that's when you know they really got it. He is such a smart kid, and every day he does something that makes me proud.

Lastly, (I know-this is what happens when you only have time to update every couple weeks) we had our visit with the pulmonologist on Monday. This is the secon to the last specialist on our list of things to have checked out. Woo hoo! anyway, he said based on the fact that he sleeps so much, the fact that he has low muscle tone, and has had difficulty swallowing, he wants to send us for sleep study to check for apnea or any other sleep disorders. I have always had a gut feeling that this would be the one area where he has something going on, so we will at least know for sure. Treatment would depend on the severity of the disorder-it could be anything from medication to surgery to a cpap machine ( a mask they wear at night to help them breathe--I'd like to see them try to get my mischievous 2 year old wear that.)

Also, sleep disorders are very common among not just PTLS kids, but kids with various other syndromes as well. So we will keep our fingers crossed. It is scheduled for May 14, which is about 2 weeks before I have our new baby. NOT looking forward to spending the night at the hospital 9 months pregnant, up half the night trying to keep busy little hands from pulling hundreds of wires off his body. But we'll see how it goes, and when this is over we will have a much needed break from the battery of tests we have been through.

Anywho, time to get another kid off to school. I will update as new things happen.