Connor had another quiet day today, thankfully.
I'm still in that jumpy, paranoid state I get in whenever Connor has a seizure. It takes me a while to quit freaking out every time he looks at me with a half-way funny expression on his face. Really right now it feel like a count-down. How many days will it be between seizures? How soon will we be able to get in to see the neurologist, and how long will it take us to find the right combination of medications to make them stop? Every time I start to get a little complacent and relax he comes up with some new dramatic way to try and die on us. It does keep one on one's toes.
My brother-in-law's visit ends tomorrow, and I'm sad to say that we didn't really show him anything at all of Washington state other than the inside of the hospital, the grocery store, and several local pharmacies. We've been sticking fairly close to home as we don't want to be out of close ambulance range, and we can't really spend any time outside with Connor because it's below freezing and he's having such substantial temperature issues. Oh well. Hopefully my brother-in-law will be back to visit in a few months and we'll get the chance to show him more of the area!
We have an extremely busy week coming up. One of the most notable things happening is that Jeremy will be heading back to the hospital for an appointment where they will hopefully clear him to start doing some weight-bearing activities. We'll just have to see what the doctors say, but we're hopeful that he'll be able to at least start putting a little bit of weight on his right foot. I'll let you know what they say!
~Jess
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5 years ago
4 comments:
I am just catching up on my blog reading. I am SO sorry to hear that Connor is having new and very scary seizures! UGH! I hate seizures! Loathe them!
I am glad that he has had some quiet days, but I can imagine that you are on edge watching every little movement. Hope you are able to get some clear answers from the neurologist.
I will tell you that Emily is on Keppra (has been since birth just about). She has (somewhat)recently started to have some new seizure activity too. We were originally given a second medication (Depakote) and she has not reacted well to it at all. So instead we increased Keppra more and have started to wean her off Depakote. I am thinking we may need to increase Keppra more, but we will find out soon (she goes for a 23 hour EEG on Wednesday - that should be fun!).
I realize every kid is different but wanted to share a bit of our experience. We have liked Keppra since there are very little side effects - so hopefully an increase will keep things in check (for Connor and for Emily).
It's so scary! Whenever Queen Teen's ataxia worsens I follow her around the house, ready to spring if she falls. As long as I'm looking at her, she's fine, but as soon as I look away, down she goes, or so it seems. I feel like I can barely go pee.
Sending you guys good thoughts and a little California warmth (although it's freezing here too).
I really hope you get into the neurologist soon. Sometimes just having a plan of action in place makes things a little less stressful. I'm sending positive thoughts your way, and I'm praying that they come up with a much more effective medication combination to keep those seizures at bay.
I hope Jeremy can start the weight bearing exercises- that will be one more step in the right direction!
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