are making for not quite sleepless nights, but almost. Keira's seizures seem to be getting better. We don't see any spontaneous ones lately, they are all brought on by stimuli or stress. For example, I gave her a bath this am and she had four seizures because she was scared of the running water and of getting her hair rinsed out. After a while she was fine, but we want to minimize these for her so we are laying low. If she gets scared she has a seizure, if she is touched a certain way when tired she has a seizure and if she drinks a bottle she has major seizures. Major seizures don't seem to come anymore unless drinking her bottle, which is not optional. She also always has more the more tired she is, but like I said, they are reduced. Anywhere from 50-70% on a given day. This is a GOOD thing. It means the meds are working. We start taking a full dose tonight so we will be watching her like a hawk this pm-am. We try to make sure Keira gets her naps and does not get over tired, which means she does not go places very much, nor do we.(as a family) It is making for a low key summer, but the kids don't seem to mind. Thank God for the person who invented Intex Easy Set Pools.
Saying Momma after her tubby
Naturally curly baby Mohawk
SO tired
Kailyn had REALLY low blood sugars the last two nights in a row. Last night was the worst at a 38. We get scared when she is in the thirties during sleep. Our worst fear would be a diabetic coma. She was really good at waking up during lows, but is not anymore. This means Seth or I will be getting up at one hour and two hour intervals throughout the night until she is completely back on track. I adjusted her carb ratios for night time and hopefully tonight she will be back within her blood glucose range 80-150. Thankfully, Seth can wake up multiple times a night and go to work and still function. I am also thankful for my Mommy Radar. I always seem to feel deep down in my bones that she is low. Of course, Kailyn woke up late this am acting like a bear because she was in the 300's. Over correction. It's quite unbelievable how blood glucose levels can effect ones mood. Can you imagine this pretty face grumpy?
2 comments:
It's nice to read your blog. No matter how difficult it gets, you seem to be able to enjoy your lovely children. It must be tough, though :)
All the best!
It is very tough sometimes and I have had very bad moments. I know people that have it worse off than me,however. People who have lost their child. I try to keep it all in perspective. So many people have children with issues these days. I just happened to be handed three. All the best to you too on your journey.
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