Friday, November 25, 2011

sleep study

On October 2nd the boys and I went to Smithville for their annual Arts in the Park event, just like we did the past couple years. The weather was iffy, but held out enough for us to do almost everything before the rain kicked us out. They got to see a performance ("Ernie and Niel"), made quite a few recycled crafts, played croquet, watched some traditional Chinese dances, and did some painting. Ended the day with a yummy treat of fried oreos!











That night was a night I had been dreading, Jason's sleep study. For those that don't know (or remember) Jason's neurologist had referred us for a sleep study months and months ago, as soon as he was diagnosed with Chiari Malformation. Apparently sleep apnea is correlated with Chiari, so it was just protocol to do the sleep study. Well I didn't tell Jason where we were going cause if he had heard any word such as "doctor", "sleep", "study", "test", "appointment" or "hospital" he would have freaked out. We left plenty of time to get there, since I had never been there before and it was quite a trek. Luckily we left that window cause we hit crazy traffic. I had assumed we could kill some time at King of Prussia mall and get some dinner when we got there, but instead we grabbed a quick dinner at WaWa and that was it. At that point I had told Jason that we'd be sleeping overnight somewhere and didn't really give him much more information. He wasn't happy with that, but he was happy with the toys in the waiting room. The staff was really great with him, getting him checked in and back in his room with relatively little issue. He was quite happy to get to have his new Backyardigan's movie (courtesy of Jeanne's kids on his birthday...thank you) right in bed. I have to say, it was entirely heartbreaking to see the staff hook him up with all the sensors and such. His sleep technician was awesome, but no one enjoys that much stuff being attached to him (22 sensors, oxygen monitor, cannula, heartbeat monitor, and microphone. And lots of adhesive and gauze). He wasn't happy about it at all, but he was a trooper. He cried quietly the whole time, but didn't fight any of the stuff. And, he did fall asleep fairly easily, which shocked me. Unfortunately the rest of the night went horribly. He never slept for more than 45 minutes at a time, and each time he woke up he was combative and confused. It was just sad. And since they only had him in a hospital bed with rails, and he normally sleeps in a crib, he almost fell out of bed a few times. Needless to say, I NEVER slept!




We got home and he was definitely miserable. When it was time to go to school I almost kept him home, but he seemed agreeable to going, and they said he had one of this best days yet Go figure.

As you can see, he was quite tired out from his sleep study. He fell asleep on his own on the couch around 5pm. I thought for sure that he'd be up all night after that. He ended up waking up briefly, but basically fell asleep back in his crib and slept all night. He must have been exhausted.

Jason had storytime at Evesham Library and made a cool leaf wreath craft he was very proud of.

That afternoon Tyler had a new classmate over for a playdate. He was quite excited about that.

They played until it was time to take off for karate.

On Wednesday Jason and I enjoyed a nice morning at storytime at the Pinelands Library followed by a quick trip to the playground. We're there long before he announced his was tired and wanted to go home...odd child.


On Thursday Jason had his vaccine in the morning, which he was none too pleased about. Shortly thereafter it was our long-awaited physical therapy evaluation at CHOP Voorhees. It was interesting to watch, and apparently slightly perplexing for the evaluating therapist. She said that he was actually somewhat advanced in some areas (for one, ball skills) and then quite delayed in other areas. She felt that many of his delays could reflect more of his sensory processing problems and not a true delay stemming from a physical problem. However she also agreed that he would benefit from orthotics, so he qualified for weekly hour-long phsyical therapy for 8 weeks (and then will re-evaluate), an orthotist will come out to see him, and she said she'd speak to an occupational therapist to see if he would be better served in OT.

Meanwhile my grandfather collapsed at home, and after initially refusing treatment, did go to a previously scheduled cardiac appointment where they then sent him to and admitted him to the hospital.

That evening I had a H&S meeting. Due to the fact that my mom busy at the hospital with my grandfather, I got to bring the boys with me. Thank goodness for the girl scouts babysitting services, but Jason of course ended up in my lap instead.

On Friday we were stuck after school drop off chatting for a while, so it was a quick bike ride back home to get Jason dressed to get back to school so we could join Tyler and his class for the school kick-off for the new bullying program.


After that we literally rushed home on our bikes, jumped in the car, and showed up a couple minutes late for the JWA tot storytime at Vaughan Hall. It was a really cute storytime with a little craft and even a snack they decorated themselves.

After that our whirlwind morning continued, as we went directly from storytime to school so I could serve school lunch for the first time this year. Jason came with me, and it went waaaayyyy better than the last time I had been forced to bring him with me. He sat on his beach towel and just ate and was pleasant. And then it was a quick rush back home to grab the backpack and get right back to school for Jason's preschool.

While Jason was at preschool I went to Trader Joe's quickly and to then to the hospital to visit my grandfather. It was sad to see him so out-of-it and in pain.

That night, after karate, it was finally time to relax.

On Saturday the boys and I packed up and drove to Great Adventure. We stopped quickly at the outlets and then grabbed McDonald's while we were waiting for our friends to arrive. We went into the park and activated our 2012 season passes (we got a good deal on them...thanks to a christmas present from my parents...and would get a free season pass if they were activated in 2011). We then went to see the animal section and saw a "fright fest" themed animal show with snakes, hedgehog, and other "creepy" animals. Eventually Beth, Erich, Devon, Mackenzie and Olivia joined us. The kids had fun on some rides and such.




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