One word to describe last night. BRUTAL...
I truly felt tested and punished all at the same time. Dominic would NOT go to sleep. We went to bed at 9:00 and he was wound-up to the point of madness. The anti-seizure medicine is making him crazy. One of the zillion side-effects is
insomnia. Great. We tried everything: the bottle, the
chewey, the
blankie, the hand in my shirt, the deep-pressure knee rubbing, the
Backyardigans, nothing worked. He cried and whined and kicked and screamed, completely inconsolable. Completely insane. I put the pillow over my head and he thought I was playing peek-a-boo. Throw in our meowing-in-heat-whore-of-a-cat, Coco, and you have the makings of One Flew Over the
Cookoo’s Nest Part II. 4 1/2 hours later, he was finally asleep.
The Doodle has never been a good sleeper. He has always been somewhat of a cat-napper. Even as an infant, he would always startle himself awake. Now, looking back, I wonder if those levitating startles were some type of seizure…
Those who know me, heard me say a million times over that this time around I was going to do things differently. This time, the Baby was NOT going to sleep with me until he’s 6 years old. This time, the baby was sleeping in his own crib whether he screamed or not. After all, it gets much easier the second time around right?
And so it went, Dominic being the lightest sleeper in the history of babies would not fall asleep on his own. I breast fed, so he would fall asleep on the booby and then wake up the minute I tried to lay him down in the crib. I could sometimes get him to sleep on his own in his swing. So for the first 15 months of his life that is where he would “nap”.
Dominic was always a loud snorer, one of the characteristics he picked up from his father…we used to think it was cute how loud he would snore and then he would stop breathing and it stopped being cute. I noticed throughout the night how he would stop breathing like he was holding his breath for 10 seconds or more. I did my Web MD self-diagnosis and determined that the Doodle had (severe) sleep apnea. As he got older and his tonsils and adenoids grew, the sleep apnea got worse and worse. I would sit and count the seconds he
wasn’t breathing and then shake him awake so that he would breathe. This went on all night long. No one was getting any sleep with this routine. Remember the part where I earlier swore this one would not sleep with me? Well, that went out the window. He has always slept with us and basically, I have not had any good sleep in almost 3 years now.
After the seizures started in January, we thought it was a possibility that the sleep apnea and lack of oxygen could be a potential cause—so we had his tonsils and adenoids removed. In the hospital after his surgery, I had to lean down and put my ear next to his mouth in order to hear him breathe. No more snoring like a tractor from the Doodle. The surgery completely worked! I could now cross Sleep Apnea off of his laundry list of medical issues.
Yay. But, unfortunately, the sleep apnea had nothing to do with the seizures. The seizures kept coming, more and more and continue to come with a vengeance.
I took this picture of
Dommy today sitting still for a minute wearing his “helmet”. He
doesn’t cry and fight me anymore, he’s completely used to it now. I ask him when he wants to get down and play, “OK, what do we have to put on first?” and he points to his head. This bike helmet
didn’t used to be white. It used to have a blue plastic coating all over it until he’s fallen and hit his head so hard, so many times, that the plastic has busted off.
I used to wish the Autism away. Now, in retrospect, I would gladly trade the autism for the seizure condition any day. So if you see me, be gentle. The Doodle and I have matching dark purple circles under our eyes for a reason. They tell a special story.
This is what tired looks like. And sick too.
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