Tomorrow we will increase the dose to .5mL (40 units) twice a day. No significant changes in her seizures. Some days are better than others. Some days I think it is working then the next day I question what did I get myself into. Even though it has been easier on Sophie to get the shots, it is still just as heartbreaking but we are all recovering much quicker. Sophie sees "the blanket", starts crying, I hold her down, Brandon gives the shot, one of us takes her outside to play on the swingset, everyone feels better all in the matter of minutes. Oh, and you better make sure you take her directly to the swingset. No trying to distract her with anything else. If you don't take the quickest path to the back door, she will redirect you quickly :)
By the way, we no longer have to swaddle her. She just lays there. We still have her lay on the blanket so she knows what is about to happen. I don't want her to look over her shoulder all day wondering if we are going to sneak up on her and stick her with a needle. Needless to say, we will be having a blanket burning party after this is all done. Hopefully, we can combine that with a seizure-free party.
One last thing...her neuro called today to check up on her. I gave him the update and he also had her lab results. Her blood sugar level was low. This could be for a number of reasons. Since it was taken last Wednesday, I can't remember what she ate for dinner the night before or if she had a bedtime snack. She is having her blood drawn tomorrow morning and we should have the results by tomorrow afternoon. We gave her a bedtime snack tonight so hopefully her labs results will be just fine this time around.
By the way, we no longer have to swaddle her. She just lays there. We still have her lay on the blanket so she knows what is about to happen. I don't want her to look over her shoulder all day wondering if we are going to sneak up on her and stick her with a needle. Needless to say, we will be having a blanket burning party after this is all done. Hopefully, we can combine that with a seizure-free party.
One last thing...her neuro called today to check up on her. I gave him the update and he also had her lab results. Her blood sugar level was low. This could be for a number of reasons. Since it was taken last Wednesday, I can't remember what she ate for dinner the night before or if she had a bedtime snack. She is having her blood drawn tomorrow morning and we should have the results by tomorrow afternoon. We gave her a bedtime snack tonight so hopefully her labs results will be just fine this time around.
3 comments:
Sophie is a trooper. It was so much fun to see her this weekend and to see how far she's come since the last time we saw her. There seemed to be a new sparkle in her eyes... things seem to be coming together for her. Hearing her speak and see how words are finally coming together with objects. What giant steps forward she's making!!
Love,
Barb
I'm so glad she's taking the jabs better! I know it's hard on your heart tho...I still get sappy every time I think about it with Trev.
I think it's a brilliant idea to have a blanket burning after you're done! Roast marshmellows...make 'smores! :O)
Good luck...
...danielle
I hope Sophie is doing OK and that the injections are a bit less stressful for all involved. And hope you can still all enjoy some summer. It's finally arrived in Seattle.
Lori and Nora
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