Well today has been interesting…to say the least.
Logan has been on a new sleep pattern. I love my son but mommy and daddy need some sleep. He will sleep for 4 hours (7:30-12:30) and maybe wake up once because he wants to turn over. Then, after he eats at 12:30, he will wake up almost every hour. The first time, he wants to turn over. The second, he wants to eat. This goes on until 6 am when I finally just get him up. I’m not sure what to do or how to fix this But I am thankful for every minute I get.
So then we fell asleep to Mickey Mouse and slept for almost 2 hours. It was nice 🙂 But I do feel bad that Brett was at work and didn’t have that luxury as well.
Two big news breaks of the day!
1. I spoke with Dr. Connolly at STL!!!! She called me!!!! I was floored! She was disappointed that the nurses did not do as she asked them and scheduled us sooner in December. She said she wanted us soon, not 6-8 weeks from then. She wanted to see us this Thursday but has a cold. So they are going to try and schedule everything for the first week in January (including pulmonary). I am hoping to hear back tomorrow about that . She was very pleasant and I feel we made a good decision choosing her to help guide us on the neuromuscular level. She was very excited that we let Logan try swimming and encouraged us to do that weekly. I’m so glad we are on the right page with everything it seems. She is encouraged that he is 5.5 months and is still strong (he has only lost a little bit more head control and cannot breastfeed).
2. The Cough Assist and Suction Machine was delivered today. And we used them both this evening. It was easier than I had expected but Logan did not react well to it. I am very thankful Brett was here to hold him while I did everything. I do wish it could have been reversed but I was the one trained and it went very well considering.
I broke down last night about the machines being delivered. That our baby boy has to use this everyday now. Tonight, I haven’t cried. I don’t know why. Not sure if I’m still on a high from working the machine two hours ago. Not sure if I’m just trying to forget that happened tonight. I just don’t know.
I wanted to quickly touch on Friday’s devastating news in CT. I cannot imagine the despair the parents are feeling. It hurts to know our son may not be with us 2013 Christmas. However, we know the inevitable will happen and we can make cherish every moment. My thoughts and prayers are with the parents and siblings who did not have that luxury. (((hugs to all)))