Well we got the beds done and in the room. It’s not the ideal floor plan, but this will only be her room until the house remodel. So we will make it work until then. Honestly they have been finished for a while, and she has not slept in her room yet. We wanted to wait until after the sleep study and then with a monitor, and one of us in there if she needs it. So that is nice to check off the list, and we might be able to use the garage to park in again sometime soon.
Well onto the sleep study. We got to Children’s around 7:00 pm and got checked in and read some books and relaxed for about an hour. Then she got her regular nighttime meds, and got all hooked up. There were wires and tubes to check brain waves, oxygen levels, CO2 levels, teeth grinding, snoring, and breathing by way of nose, chest, and stomach. There were also leads down by her feet to see how active she is when she is sleeping. Well, she did not mind getting hooked up. Our technician was great. She was so sweet to Quinn, and so Quinn loved the attention. Jabbering and singing with her. Then we quieted everything down, had her sound machine running and within 20 minutes she was sound asleep. I on the other hand was not. I was listening for everything. Most importantly, I wanted her to have a few of her unusual sounds but nothing out of the norm for her. She does have tone, and sometimes she controls it and is totally quiet, while other times the tone tends to take over due to stress, or something we have yet to discover. So here is hoping and praying they can let us know if there is something we need to do, or keep doing what we are doing. I’ll find out results sometime next week I think. O.K., now that we have the information covered, lets talk about Quinn. I fell asleep around 12:00 and I was told Quinn woke up at 1:00 and gave the technicians and the security guards quite a show. Oh, did I mention they had a camera on her all night, a close up of her face and chest to see how she sleeps and watch her with any noises. Well, as you might know I tend to take lots of pictures of her, and the techs said that for two hours she posed for the camera, tilting her head this way and that, singing, and smiling. Then she got a case of the hic-ups and the techs were laughing still as they told me, she would hic-up and then look around as if, wondering where that came from. The girls said that was the most entertainment they had in a long time. Finally after a few hours Quinn called in reinforcements. I woke up at 3:30 to “mom,mom,mom,mom,mom” So I crawled in with her. She is a smart cookie, and she knew where she was, and also I believe very smart in knowing that blood draws always happen in the morning, so she was doing everything she could think of to keep herself awake. I have not seen her moving herself around so much. Now when I say that, it’s not huge amounts, but it’s getting better and better. She was so funny, as we were now watching her, me next to her and the techs on the camera. Finally at 4:00 the gal from lab came and poked her, and she totally gave me the “I knew it, and that is why I stayed awake look.” Wow, can she get a message across loud and clear now. Well, then we unhooked everything and got ready to go home. Here Quinn did a great job staying awake from 1ish, to 4ish, and then as soon as she was in her car seat going home, she was sound asleep within minutes. Once we got home, she stayed asleep until 9:40, which worked out well because we had therapy at 10:00.
O.K., therapies have been wonderful lately. Our LPS therapist Jen hooked us up with a vest that Quinn can wear for short amounts of time, I guess I would say it’s kind of like a girdle, it will help her hold her core body up easier so she can focus on her head control. We used one like it at Handprints, and she did well there, so we will see how she does with it at home. We also got arm splints to wear when she practices crawling, and wow, they were working great, she was doing great putting pressure on her arms and her legs were going like crazy, half of her was totally crawling. We just need to keep working on those arms now.
Well, she is getting better and better with her arms, because when she was with Staci and Diane, she was moving cards around, and she did three sign language motions. Go, Stop, and More. You can see how hard she works and how hard she wants to do what is asked of her. It makes me so proud of her and so lucky to see her improving. We also talked about how her head control is getting better. We still have a ways to go, but at the same time she has improved so much!
Whew, this has gotten long! We have just been so busy! Wow! I have to admit it’s much more fun writing about her doing well, instead of struggling. I am so thankful for her being healthy because these last few months were trying on many of us.
Blessings!
Susan
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