Keep in mind I was epelptic as a child. So this is what has been running in the back of my head since he was an infant. And as you read you will understand why I am so upset, angered and frankly fucking bitter that it took so long for someone to take me serious.
One of the issues we have been struggling with Gabe his night time sleeping habbits. Gabe has always needed 12 to 14hrs of sleep a night. If you wake him up, you have pure hell on wheels. If he wakes up on his own, it’s rough but about 3hrs after waking up life returns to normal In the Nusbaum home. And when I mean rough, I mean biting, kicking, punching, head butting and it has been this way for him since he was about 6mos old. Gabe has always kicked at night. Infact most nights, he kicks, about 50% of the time Gabes ends up on the floor under his bed. When he was an infant I can’t tell you how many black eyes or bloodied-lips he gave me during the night. Nevermind the wetting the bed.
When he was 4 he was put on resperdol and a lot of the kicking stopped. It reduced by about half. Well over the years we’ve reduced his medication and the kicking started back up again. Back in July we had a huge scare with Gabe. Gabe speaks super fast in general and when he’s excited he stutters. It’s not that often, but he does. One day we were driving and Gabe was talking fast. I asked him to slow down and then the was stutters. Again, I said. “Baby mommy can’t understand you.” Then he was talking but he started slurring like he was drunk, I looked at him and he was kinda drooling and talking but it was complete nonsense. I called his pdeitrician they ordered a CT and that was negative. This lasted off and on for three days. When it was all said and done Gabe said his head really really hurt him. So since Gabe has always complained about his head they gave him the diagnoses of complex migraines. So up until recently anytime Gabe started slurring he usually always said his head was hurting a few minutes later, so we were giving him ibprofen. I still was pretty upset.
In Aug, I was teling his physiatrist and his pediatrician about this and Gabe’s sleep patterns and how much of a concern it was to me. I had several theories Because Gabe is thrashing most nights he’s not getting good sleep. A. Is he getting REM sleep? If not, is it taking longer for his medicine to take effect? B. What if he doesn’t need medication if it’s a sleep disorder? That’s not to say he doesn’t have problems. But we are tackling the wrong problem. C. Worse case scenario Is Gabe having seizures?
So off to the Sleep Study Specialist we go. He thought that Gabe may have had restless leg syndrome that could have been caused by an iron diffency. We got through the sleep study test and I didn’t sleep because I wasnervous watching Gabe the whole night. And of course Gabe sleeps like a rock and does move a muscle all night. I’m thinking maybe I’m over worrying.
A few days later, I get the call from the Sleep Study Specialist. He appglogized for calling so late in the evening. But he says he had bad news. He was expecting to see restless legg syndrome with Gabe. Turns our it looks like he was having siezures. He said there was irrular activity and he now wants more testing done and he wants him to see a neurologist. The doctor said it’s pretty rare to see activity at night, so it concerned him quite a bit. Here I was thinking we were safe.
I wasn’t shocked by the news. Mostly I was angry. Not at the doctor who called. At all those doctors in the past 9yrs who told me it was nothing, or babies don’t kick in their sleep, etc etc etc. I was angry letting them convince me otherwise. For all those times I yelled at Gabe for to stop kicking the walls when he could have been having a seizure. And I’m angry for all those times I sent him back to bed when he said his head hurt. Everything we have gone through with Gabe, I’ve always been able to keep myself calm and collected because I could say. Well at least he doesn’t need surgery, or he doesn’t have seizures, etc. He’s sensitive and we can deal. And I know that this will be taken care of. But I am kicking myself in the ass for not fighting harder.
How does Gabe feel? He’s my happy lil monkey and that’s exactly how he should be. Am I as upset as I was last week. No. I know Gabe is in good hands.
My best friends response was. “Put your big girl panties on”
My sisters response was”Is anyone dead? Is Gabe going to die? No? Then your good”
And it was exactly what I needed. I’ve been through worse. I’ve seen worse. I got this. Sometimes you need a kick in the ass to remind you that everything will be alright in the world.