Tuesday, November 17, 2009

Did someone say SLEEEEP!

Today was a good day ( and a bad day) but mostly good! Tyler was and has been such a good kid. I wondered where this angel had been hiding! I hope it continues but here is the stories!

After Tyler and I being sick it seemed to take forever for him to totally bounce back. Sunday afternoon I wouldn't let him watch a movie on the computer AND the TV so he got mad and laid down to pretend to fall asleep and he was OUT for 2 hours. I really thought we were in trouble for the night since that seems to be the trend with Naps. BUT nope. Other than he NEVER has slept through the night ( minus I think 3 or 4 nights in 4 years) he ended up in our bed but overall he was great.

Monday is our big therapy day. Of course I really thought at his 5:30 am wake up call we were in HUGE trouble. But I was pleasantly and thankfully surprised. Since I had a bad and frustrating weekend with communicating with other people ( not in my house) I was hoping for a Angel day.

I had been reading "The Sensational Child" book all weekend and had found a few "skills" and coping techniques for some on the sensory stuff we have noticed in Tyler. We talked all morning about Therapy, we hyped him up with picking his own clothes, picking a reward if he worked hard, playing incredibly hard with him BEFORE ( see he has some sensory SEEKING behaviors we were trying to fill) we left for therapy and we let him totally TRASH his play room ( and eat whatever he wanted) and then we left.

He fell asleep on the way but woke up happy. And he was ready to go. I let him make all his own choices about how we would get in the building instead of just doing it for him. And made him walk and push the stroller ( another sensory behavior modification for over sensitivity, YES he has both... he has more than 2 actually) and talked about how he was going to go to speech and he would like it and he would participate.

The transition..... ROCKED... that is right Very little crying. He even did as he was suppose to and participated ( more) than what he had before. He was bribed with jumping on their tramp and sliding down the slide and the reward he had decided on at home ( a Thomas sticker) was given. He then spent the next 3o minutes in the big play room there at Shriner's playing with another little boy and he was having a good time.

To help move on to the next activity ( which was lunch and another appointment) I had him push his stroller again and he did well with the transition. ( I am LOVING this new book)

The appointment we had next was the coveted sleep doc. ( if you want her name you will have to email.) She normally is very hard to get into and I was expecting a LONG wait to even see her but it took only a week! We got to fill out the really large packet of papers and while in the waiting room Ty played a number puzzle ( which he got right!) and got out a fire truck and pretend played with it. ( You have NO NO NO idea how big that it for Tyler, or a kid with "issues" and he did it on his own) And then he found a vacuum and did the same thing.

So the doc came in and got us herself. No nurse, just the doc. She was running around crazy in the back ground when we got there. I had no idea it was her. And she started asking questions. She is probably the first doctor I have ever heard say " You poor mom, are you tired? We need to get you a nights sleep." Yes she was concerned about me.

She decided that she didn't agree with his first diagnosis of benign sleep myclonus because the problems occur LATER in the evening. Like 3 am and on. She is pretty sure that he has a genetic condition known as Periodic limb movements or PLM and it is in the same family as restless legs.( did I mention genetic because I am SURE his dad has is it. My bed is even shaking from it RIGHT NOW) And because he has a neurological condition it would make PLM kind of exaggerated.

Because of his chronic lung disease and history of prematurity she wants to rule out Sleep Apnea by doing a sleep study but she is almost certain she is correct on the PLM diagnosis. So on Sunday, Tyler and I are sleeping over. That's right. She wants us in and done with his study before we do his Phenol shots with Dr. Gooch. ( In December )

For the first time in a LONG time I felt we had some kind of answer and someone who isn't and DIDN'T blow off his sleeping as " well sometimes kids don't sleep through the night" She specifically said, your child should be sleeping through the night by age 2. If not you should have them checked out. Plus our child is on a sedative. YES a sedative... and one that is NEVER used but in a hospital setting.. and he is on the HIGH dose. She wishes the doc she practices with for adults took our insurance and she would have done double sleep studies.

I HOPE HOPE HOPE that we have answers that will help our child.

Sleep=developmental strides.

We need those strides right now!

* post to look forward to- communication ( revisited) and what we are finding with his sensory issues....* WAHOO

PS. Dallas has Strep. How the heck does he get strep when he NEVER leaves our house? I mean NEVER leaves the house. I do the shopping, I do the outside of the house work, I do the therapy and doc visits and HE is the one sick... LIKE BAD sick.. like no complaint to go the docs sick, Like not well enough to shower, and in bed ALLLLLLLLLLLL day. He got sedatives tonight to... LOTS of them ;)

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