This has been a tough week for our Jenelle. At 6:30 a.m. on Monday, I woke and heard Jenelle having a seizure (grand mal). Brett and I were at her bedside right away, but we weren't sure on how long she had been seizing. After two minutes, I gave her Diastat and the seizure eventually stopped. Jenelle was pretty wiped out for the rest of the day. We aren't really sure what brought on this seizure. And of course, I've been sleeping a little lighter since this happened, as I keep my ear open to listen to her sleep.
Later the same day, Jenelle had a small accident in which she burned her finger. Brett had just placed a plate of lasagna on the table straight from the microwave, and Jenelle reached for it with her hand (she was hungry). It appears to have been a second degree burn with a blister on her middle finger. The problem has been keeping it clean and dry so it can heal. I've kept it taped and wrapped to her other finger, but she likes to put it in her mouth.
This afternoon we are taking her to the doctor to have it checked because it seemed really red last night. We want to avoid infection at all costs because it can easily get into her system and quickly become a staph or blood infection. We hope we can get on anti-biotics today as a precaution, because having Jenelle ill is the last thing we need before I return to the hospital next week.
As for me, I am still fighting a cold. UCLA finally put me on a 5 day Z-pak Tuesday, and while my sinuses are clearer, I have a horrible cough. I still have a few more days to get well before next week, and I'm keeping my fingers crossed that we won't need to delay my next round of chemo.
Brett and I have been frantically trying to prepare for my departure next week. At least this time we have some warning, and know what to expect. Oh, and my hair has started to grow back. Unfortunately, it will be gone after next round, but it is nice to see that it knows what to do! The down side of my hair growing back is that the stubble itches ... a lot! As I stick around the house, I've been going without a scarf or hat. The look was useful to help scare off a solicitor the other day when I opened the door forgetting to cover my bald head.
Anyway, I am anxiously awaiting next week, and hope that all goes according to schedule. Please keep those positive thoughts and prayers coming that this cold will go away so I can rest up for next week. And please say some prayers that Jenelle can stay seizure free while I'm gone!
Thanks again, and we are still KCA!
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7 comments:
Bless your heart. Seems like it is always something or another, doesn't it? Jenelle will be added to the prayers. She is so lucky to have you for a mommy! Hang in there.
As always, you guys are in our prayers. I also wish I had some advice to help keep Jenelle's hand cleaner. Ben would do the same thing with his finger sucking.
Also the part about scaring away the salesman cracked me up!
With your bald head we just got to get you some tattoo's. Then you can really play the tough-girl act and scare them away.
I hope your sinus problem goes away. I want you to get this stuff wiped out for good!
Poor J. I hope she stays well while you're gone.
((((HUGS))))
Still thinking of you all!
Yea, I bet the docs at UCLA will really endorse a tattoo on your scalp. Ahem. Meantime, not liking solicitors much, you seem to have found a silver lining for the regrowth.
Prayers are ongoing (online to the A-Kicking Boss).
Only you can do this, but if you restrict Jenelle's elbow to stay straight, she cannot put her fingers in her mouth. This suggestion may be too late for this occurance, but in an effort to prevent infection of her hand and insanity in her parents, this option might work. (And, is a heck of a lot less painful than needles to the scalp.)
Barbara
Hello,
I have been following Jenelle's story for a while now and am struck with how similiar she is to other children who have a CDKL5 diagnosis. Has Jenelle been tested for CDKL5?
When I saw this latest post talking about raspberries and hand mouthing I just had to make a comment.
Please have a look at http://www.cdkl5.com
Leita
CDKL5 mum
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