April 8, 2007
April 8, 2007 | Updates
This week was a crazy one. We had to let a secretary at work go and I had to train the new one. So I spent every afternoon and evening this week out at the office. That meant that I didn’t get to see Samuel much at all. So most of what I tell you about this week will be from reports from my sister each day. First, I STILL have not heard back from his neurologist. I have certainly passed frustrated and now am pretty upset about it. Samuel is still having too many seizures and now they are making him nauseous again. And I have left messages at least 10 times over the last 10 days for that doctor. So, tomorrow, his office will get a call from me indicating that this is entirely unacceptable and if he can’t help me I will find a neurologist that will. I understand that doctors are busy and that things come up. But waiting 10 days for a phone call for a medication to stop seizures is absolutely wrong and if nothing else, this doctor needs to know that. And on top of that, we have worked too hard over the last few months to get Samuel’s weight at an acceptable level to be OK with watching him throw up everyday because his seizures are making him sick. It is also a big burden on everyone to be bathing him over and over again and washing tons and tons of laundry and bed sheets. He even threw up on he and I today during sacrament meeting and he hadn’t been fed more than 60 cc’s in the 2 hours before church. So, I’ve reached my breaking point on this one and will take care of it tomorrow no matter what.
From reports from my sister Kaylee, Samuel was able to spend a lot of time outside this week and seemed to love it. He loves to swing on the swings and smiles and laughs about it. He also enjoys us holding him up while he takes steps across the lawn. And he loved watching the kids fly kites one day this week. I am excited for the warm weather and think it will be a very good thing for all of us!
Samuel has been struggling a bit with his sleep schedule again, but I am pretty sure it is being caused by his seizures also, so that should adjust back to normal when we get the seizures under control. Sometimes I check on him late into the night or in the early morning hours and he is wide awake and when I come back a few hours later, he is still awake. I often put movies in for him in the middle of the night because it must be so frustrating for him to lay there wide awake and alone. But after one of those nights, he always struggles to make it through the next day because he is so tired. So, I’m hoping we’re back on track soon.
He is still SO CLOSE to crawling. He is also getting better at supporting himself in a quadraped position (on all fours). And his head control amazes me compared to what it was just months ago. But my favorite thing is sometimes when I pick him up, he will wrap his arms and legs around me and lay his head on my shoulder and I can carry him just like I did before the accident. It doesn’t happen often, but that feeling of “normal” is always a wonderful thing!
Well, that’s about it. Easter was fun and Samuel got Finding Nemo and Happy Feet. But even with his new movies, he’s up there watching Cars tonight because that’s the one he chose. He’s so funny because he has to watch a movie a bunch of times before it becomes part of his “acceptable library” of things to watch. So I make him watch new ones so he can get used to them in order to keep sanity for the rest of us!
This week promises to be another hectic one. I have a seminar in Salt Lake this week and Samuel has a bunch of therapy and school. We see his rehab doctor next week to discuss options for his tone and his feeding tube. Hopefully some good things will come of that. And, maybe, I’ll get the website up this week. It is nearly done and it looks great!
Thanks for all your prayers!
Love,
The Jewkes
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