Knock on wood, we've had a pretty good last few days. Dominic started having seizures again on Friday, one while we were at the pediatrician's office (which we were there for a large "rash" that we thought was from one of his meds but turned out to be Eczema...I know, add it to the list). Got back on the phone with Peds Neurology and they upped his Trileptal. Fortunately he only had three seizures on Friday and hasn't had any since. It seems to be really difficult to find the exact concoction of medications. Once he gains weight, they have to readjust the doses and certain meds have certain side effects. So, pretty much every week or so we have to change things up when he has seizures. But, this week has been better - ear infections have cleared up, eczema has gotten better and no seizures. He's still hanging onto a nasty cough and teething like crazy, so he's back sleeping in his car seat. But he's sleeping, so I'll take it :o)
Yesterday we had physical therapy and she said he seemed stronger since last week. She put him in the compression suit to see how he handled it. He barley noticed and I could already see that he had better support. She also put Kinesio tape on his right arm and hand which also has already made a difference.
The tape gives support and stability to his joints and muscles without affecting circulation and range of motion and causes activation of neurological and circulatory systems. It seems weird to put a big piece of tape on his arm, but it really works. He's opening his right hand and bringing it to his mouth and grabbing for things, which he wasn't before. We should be going in to get fitted for his helmet in the next week or so too. I'm starting to realize that although his health issues are getting much better and what a miracle it is that he's had no more spasms, our life is still going to be pretty crazy for awhile. With therapy three times a week and other various appointments, things don't seem to be settling down any time soon. So, I feel like I struck gold when I stumbled across an article in the GR Family magazine about "Nanny On Demand". It's basically a drop-in day care that you pay for by the hour and don't need an appointment for. Amazing!!! Exactly what I need AND it's down the street from Spectrum. So, I checked it out with Mitchell on Monday and he LOVED it. It has tons of toys and they follow a preschool curriculum (which should be great prep for preschool that he'll be attending in the fall). The directors have their teaching degrees, are certified by the state and are all CPR certified. Best of all, it's $10/hour, which is what I'd pay a babysitter anyway. So, Mitchell went for the first time yesterday while I took Dominic to PT and he had a blast. Seriously, the woman who came up with this idea is brilliant! I'm hoping this will make my life much easier with all of the appointments.
Today we have an EEG at the neurology clinic. I'm interested to see if anything has changed with all of the seizures he's been having. Hopefully not. Then we head back to occupational therapy tomorrow. They say he's doing great and making progress and he's really only a couple months behind where he should be, but I can't help but wonder when he will crawl and walk. With his right arm and leg being so much weaker, I'm not sure how he'll be able to support himself. But, no point in worrying I guess. That's why we're in therapy. I am just so thrilled that he is such a happy baby. He's constantly smiling and is a joy to have. I still have to pinch myself each day and praise God for miracle after miracle I've seen with Dominic. Three months ago he wasn't even smiling and now he can't stop! I was telling my friend the other day that these past four months have felt like years and I would have never in a million years asked for all of this, nor wish it upon anyone else. But I am so grateful for what I learned from all of it. God has brought amazing good out of so much pain and suffering. I've seen how Dominic has affected others and the power of prayer. I've learned what it truly means to rely on God for everything. I've never truly struggled before this, but I now know what it means to lean on Him for strength - strength to get through each day, each hour, each minute, each breath. I've seen how much this has strengthened me, my husband and our marriage. I can't imagine how I would have done any of this, or will continue to do any of this, without Mike. He is such a gift. And most of all I've experienced true joy, especially in the little things like a smile.
