Cerebral Palsy, Epilepsy, Our Son, Personal, Sleep

always something to say about sleep

Sometimes I wish the thoughts in my head in the middle of the night while I am up with Sebastian could just go directly into my journal or onto my blog. The time to actually get those thoughts down seldom comes these days. While Sebastian has been getting back into a routine after being off of it for a month while we were in Australia means the afternoon naps have been pretty sporadic. It’s a domino effect and so I don’t have that down time for myself which leads to utter exhaustion by the evening after he goes to bed. If the internet if even working (we’ve had some dodgy internet days since our return), I just don’t have the energy to do anything but veg out with my husband. But that’s nice too.

There are so many things to update about! And then what happens to the every day stream of consciousness or things that happened worthy of reporting or remembering? It all gets mixed up and sometimes makes its way to the ‘outside’ world. There is a bank holiday today so Ali has the day off which has given me about an hour and a half for me while he takes Sebastian to physical therapy. Mmmm. Nice.

So, where do I start?

Sleep. Or lack of it. I need more. And so does Sebastian. He was up for the better part of the night last night with a gas bubble after trying so hard to go back to sleep he eventually just gave in and decided to be awake for awhile. Nap time will happen today, even if it means I join him again as I did yesterday. Because the seizures/startles happen when he doesn’t get enough sleep, it is my priority to make sure he gets a good nap every day. If that means napping with him or lying with him and reading a book while he sleeps, that’s what I will do. On days like today when I didn’t get much sleep the night before, I welcome the sleep. Other days I will be happy to read.

When Sebastian is overtired he will startle in his sleep and wake up, if he is alone he cannot go back to sleep. If I am there with him, just holding him or touching him, he closes his eyes and drifts off. His arms go up and his whole body is jolted out of sleep which makes it difficult to settle back in on his own, so I push his arms gently down and settle him. Although he is a heavier sleeper at night, the sounds of the afternoon (cars revving in the parking area just outside our window, folks beeping their horns or shouting up to an apartment above us) also startle him out of sleep too. Before we went to Australia, he was sleeping for about an hour and a half to two hours every afternoon. So we are working on getting that again because those naps were not consistent with all the people and places we needed to go while in Melbourne, not to mention the new environments for sleeping.

I read about other moms of kids with CP and the sleep challenges their children have. I feel blessed that Sebastian really is an ok sleeper. With the type of CP he has, his body relaxes and it’s like the CP is sleeping too so he can sleep comfortably without tight muscles. He also sleeps for about 5-6 hours before waking in the night to nurse a little back to sleep for another 3-4 hours. Some nights he sleeps through for 9-10 hours. Those nights are rare and I don’t know how he does it or what is different, but I’m sure happy when it happens! It doesn’t matter if he doesn’t have a nap and is exhausted, that doesn’t mean he will sleep through the night. As many of you moms out there know, a routine with a good nap during the day can ensure a better sleep at night.

Aside from the startles, air bubbles play a big part in keeping Sebastian up. Because he does not sit up on his own yet or crawl around or walk, getting the air bubbles out is not easy like it is for us because his body is not strong enough in the trunk area. So we keep working on it and I know it will come eventually.

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