8.27.13 Prayer Request
Prayers appreciated. Aimee seems to have picked up a bug this last weekend. This will be my first time on my own with a sick Aimee and my two boys. I'm nervous. Much grace needed for me and patience for them. Also, she is scheduled for a sedated hearing exam next Friday. Praying that what she has picked runs a mild and quick course so that she will recover in time for her exam.
8.25.13 Evening View
Ed set up a video feed of Aimee's room this evening. We can now have a more restful night on the peaceful nights, keeping our eye on her without wandering across the house throughout the night. The quality is high enough that I can see her eyes blinking, can tell if she is choking, and, of course, know if she is asleep or having a seizure.
So, here I am watching this cute little girl while she plays in bed. This just so happens to be one of her happy nights (thank you to today's chiropractic adjustment!). Amazed and blessed by technology. Now, go to sleep Aimee! :)
8.19.13 Sobs and Seizures
Tonight is a night of many sobs and a few seizures. A night of distress. A night of frustration as I have no idea how to help Aimee. I am holding her wrapped in a soft blanket rocking back and forth in Ed's recliner. A few days ago I tried laying with her in her bed to stop the sobs. I have brought her into my bed nights before that. Too many sad nights for my pretty girl.
Tonight, I wonder as we rock what makes her so sad. Is she scared because of the seizures? Is she having stomach cramps and acid reflux because I gave her formula for breakfast and lunch instead of blended food? Is she in pain? Is she feeling alone? Is she just overly tired from lack of sleep?
I don't know. I'll just keep rocking and rocking her until she wears herself out. Selfishly wishing I could take my much needed shower I had planned for tonight. Knowing at this point, I'll have to put off cleanliness again to tomorrow evening's list. Most of all praying for peace and wholeness for my honey bird in night's dark hours.
Tonight, I wonder as we rock what makes her so sad. Is she scared because of the seizures? Is she having stomach cramps and acid reflux because I gave her formula for breakfast and lunch instead of blended food? Is she in pain? Is she feeling alone? Is she just overly tired from lack of sleep?
I don't know. I'll just keep rocking and rocking her until she wears herself out. Selfishly wishing I could take my much needed shower I had planned for tonight. Knowing at this point, I'll have to put off cleanliness again to tomorrow evening's list. Most of all praying for peace and wholeness for my honey bird in night's dark hours.
8.17.13 Love
The language of love speaks so clear that even the deaf can hear its song.
The sight of love is so bright that even the blind can see its outline.
The movement of love is so graceful that even the lame can dance to its beat.
The wealth of love is so extensive that even the penniless can draw funds.
The presence of love is so real it brings hope to every anxious heart.
This girl knows love.
There is no language I would rather she speak.
No sound I would rather her hear or sight her see.
There is nothing else better for her to know than the heart of love.
And so it is with you and me.
8.13.13 Sleep Study Results
I spoke with our Pulmonary doctor over the phone this morning following up on Aimee's recent sleep study. She reported as expected that Aimee still has sleep apnea due to her low tone and other conditions. It really wasn't reduced by her recent surgery. Aimee again never even reached the dream/REM sleep cycle as she is continually awakened by the apnea. Add to that how long it takes her to go to sleep typically both at the beginning of the night and between awakenings. Even the doctor commented that Aimee sleeps very poorly. So much so that they were not able to even perform the second part of the study.
Interestingly enough, from a little google search, REM sleep is currently associated with learning, particularly learning physical skills. In fact, infants and toddlers experience much more REM sleep than adults. Never having any REM cycle sleep certainly is not doing her any favors!
At this point we will continue with her BiPap machine on the same pressure levels.
In other news, due to a scary mixup on the morning following her sleep study that caused us to give Aimee double doses of her seizure meds, we have decided to track all of her cares throughout the day. I was excited to find an app that allows me to track everything (temp, fluids, sleep, seizures, moods, symptoms, meds, ect). Aside from avoiding another error like the one we just had, it will also be really helpful to me in prepping for doctors appointments. For example, I want to talk to her neurodevelopmental doctor about her fluctuating temperature. It will be so helpful to have documentation showing the low temps and other factors that might influence them.
Aimee got a wonderful stand alone hammock this week from her ABM therapist. Since she has outgrown her hand-me-down tumbleform chair, it is wonderful to have another indoor place for her to sit alone besides her wheelchair. Especially on days like this when her chair really must be washed!
Doesn't she look like she is enjoying herself. Even loving to share with her baby brother.
Interestingly enough, from a little google search, REM sleep is currently associated with learning, particularly learning physical skills. In fact, infants and toddlers experience much more REM sleep than adults. Never having any REM cycle sleep certainly is not doing her any favors!
At this point we will continue with her BiPap machine on the same pressure levels.
In other news, due to a scary mixup on the morning following her sleep study that caused us to give Aimee double doses of her seizure meds, we have decided to track all of her cares throughout the day. I was excited to find an app that allows me to track everything (temp, fluids, sleep, seizures, moods, symptoms, meds, ect). Aside from avoiding another error like the one we just had, it will also be really helpful to me in prepping for doctors appointments. For example, I want to talk to her neurodevelopmental doctor about her fluctuating temperature. It will be so helpful to have documentation showing the low temps and other factors that might influence them.
Aimee got a wonderful stand alone hammock this week from her ABM therapist. Since she has outgrown her hand-me-down tumbleform chair, it is wonderful to have another indoor place for her to sit alone besides her wheelchair. Especially on days like this when her chair really must be washed!
Doesn't she look like she is enjoying herself. Even loving to share with her baby brother.
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