sleep study

Its been a busy week. my aunt is here from Florida for a few days. My cousin from LA is starting university and my aunt and mum are meeting my other aunt in PA when she drops my cousin off at school. Hard to believe the little newborn I stayed with my first summer in NY is now going off to college, I feel so old!
While mum was away we headed to Hackensack to do Ryan's sleep study .......... 2 words ....... NEVER AGAIN. Ryan fought the whole time they were trying to put all the leads on and just as she had some on he got free and pulled them off again. If it wasn't for JB bringing out the comedy act and entertaining him for an hour we would have had to leave. JB was heartbroken and said many times "I cant believe we are putting him through this" At one point I was also ready to give up and run from the hospital. Thankfully when we got all the leads on Ryan was so worn out that he fell asleep pretty quickly, although he did wake up many times when the nurse came in to fix the leads that were falling off or being rubbed off in his sleep. The rest of the night was uneventful although its a little surreal being on camera while you are sleeping. Just praying all is normal and that's the last time we ever have to go through that test. The next morning was heartbreaking. After the leads were taken off Ryan clung to me and wouldn't let go. The really sad thing though was that I think he thought he was being tortured for something he had done wrong and was trying to say sorry. He just wanted to spend all day either hugging myself or JB. I really felt like I had let him down in some way. This journey is so hard and made so much harder when we have to put our kids through endless tests, drs appointments and procedures. Especially with a child that cant understand why hes being poked and prodded. To Ryan a completely benign and pain free test can seem like someone is sticking hot needles into him, the fear is the same.
This week we heard back from his pulmonologist that Ryan's repeat sweat test came back normal. After the ordeal of the sleep study I figured there was now no need to put him through the additional blood tests for cystic fibrosis that we hadn't got around to drawing for. Unfortunately the dr still wants to carry out the tests. I'm sure she is just crossing i's and dotting t's but it makes me a little nervous as the nurse said the Dr must have clinically had her reasons for wanting the additional tests carried out because if not she would have waited until the repeat sweat test before asking for the blood tests. Ugh.

Ryan was fitted for a new pair of afo's. These new braces will be "articulated" and will move at the heel hopefully giving Ryan an increased sense of normal walking pattern. They should be ready in 4 weeks.

The week wasn't all a wash with "doctor" stuff, we did manage to cram some fun things in. As Ryan is on vacation from school this month he spent some time at the library, unfortunately there was no one there to play with on the days he was there. Ryan didn't seem to mind as he got to play with his favorite toys without interruption. I was thrilled to have dinner with a wonderful woman and her little boy who were in NJ for the week doing some intensive therapy. We had only met previously on the internet but it was really nice to sit and talk with someone who just automatically "gets it". The other exciting thing was that she comes all the way from Alabama to do therapy with the same PT Ryan's physiatrist had recommended so we will definitely be trying that out in the future.

Ryan has made some really great strides with his fine motor. Hes now able to place the pieces in Mr Potato Head by himself. You can see him really looking for the small hole and trying his hardest to get the pieces in. Makes me wonder if the eye patching is helping his eyesight. He has also had a few sessions with his EI ST during his vacation from school. Hes enjoying working with Suzanne again and she is always great for new ideas on how to help his communication.


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