Keep On Keepin' On

I am exhausted. I feel like I am on a hamster wheel - running to keep up and never getting anywhere. Everything is just starting to take such a toll. Just when we think things will settle down, something else happens. Fortunately, Dominic did not need to be admitted on Sunday because he didn't have any more seizures. However, we have had a horrible past couple days. He didn't nap at all on Sunday and by 5:00 was just a disaster, crying constantly. He crashed and slept well that night but then didn't nap again at all yesterday and was once again a disaster by 5:00. I was hoping he would sleep well last night since he was so overtired, but no. He was basically up from 1:30 am until I finally just got up at 6:30 am. The only thing that would calm him down was nursing or holding him. The minute I set him down he went into the no scream, breath-holding cry. I had no idea what is going on with him. I took the boys for a long drive this morning and he FINALLY fell asleep at 10:00. I called the neurologist office to see if it's from all the meds and they said probably not but to have him checked out by his pediatrician. Thank God I did! I took him in this afternoon and he has a double ear infection. This explains the seizure activity, as well as the crabbiness and sleeplessness. So, we're on antibiotics and hopefully he'll start feeling like himself again. On a good note, he did try solid food for the first time today and loved my sweet potatoes and peas. I'm excited about this but I'm also remembering what a daunting task making baby food is.

We also had his PT evaluation yesterday and found that besides adding PT once a week to our busy schedule, he will need to wear a helmet and compression suit. The helmet I get, his head is getting flat in the back. It's not horrible, but since he's delayed, he'll be on his back quite a bit longer than most babies his age since he doesn't have the strength yet to roll or sit up. So it could potentially get much worse. So, might as well nip it in the bud now and hopefully he'll only have to wear it for a few months. The compression suit is something he will wear under his clothes. It's supposed to stimulate his muscles and make him more aware of his body, since a lot of his weakness is from a delayed response from his brain to his muscles.  But the poor thing, it sounds to me like having to wear a girdle 24/7. I would hate that. But, we'll do whatever we can to help move his development along.

I have felt like this before, but it just seems like one thing after the other. The poor kid has been on so many different meds and how he has to wear a helmet and suit and potentially glasses. Is there anything that isn't wrong with the poor guy? I just feel so sorry for him. But I have to just keep hoping and praying that this will eventually come to an end and life will return to normal, or some version of it.