Milla's seizures have reached staggering numbers - 500-600+ per day during the hours she is awake. And we are seeing that she is most likely having seizures in her sleep as well. She is waking up early from napping and during the night seizing. We are hopeful that the seizures are what is waking her up and that she isn't just seizing constantly in her sleep.
Also, another problem has developed at night - she is sleepwalking. After finding her downstairs at 3am the other night, we put a gate up at the top of the stairs but there are still issues. She got into a tube of anti-itch benadryl cream and squeezed out every bit all over herself and the bathroom before we realized she was awake. (I'm so thankful she didn't think it was toothpaste and ingest it!) She is spending large amounts of time awake in the middle of the night, getting up, playing in the bathroom, etc., which just exacerbates seizures and her exhaustion. It's scary because we don't always hear her initially and she isn't really awake and 'with it' so I have no idea what she is going to do. She shares a room with Ann Carlyle so we can't lock her in her room due to Ann Carlyle needing to be able to get to the bathroom. She is big enough to climb out of any crib or pack-n-play as she will be turning 4yrs old in November. There are big obstacles to every possible solution we can think of, especially in this house.
Her days are also fraught with danger. She is seizing so frequently and is so unstable and so lethargic/sleepy and out-of-it. Even if I am holding her hand, she is falling frequently and hurting herself. She is tripping over her feet much of the time as well and I assume she isn't seeing well either - possible blurry and/or double vision.
Her screaming fits continue to be very frequent - she gets so frustrated and is miserable so much of the time. She needs me to hold her much of the day because she is so weak from everything (seizures, lack of sleep, meds, not eating much at all). This is also hard on sweet Elle, who is just 2 ½ yrs old. My heart breaks for her as I can't care for her like I long to do because of Milla's constant needs. I truly need more arms and hands.
Another problem is that Milla is way to bold and independent for her own good when she gets a burst of energy. She will run really fast (falling - or nearly falling - headlong into a hard surface) or sprint to the stairs or decide to go to the bathroom on her own. Today, I spent the better part of an hour cleaning up a rather large bowel movement from her entire body and much of the bathroom.
Her doctor has put Milla back on the depakote (the one we had taken her off of a couple weeks ago due to her lethargy). He hadn't wanted to medicate her too much before our upcoming stay at LeBonheur, but we also have to keep Milla safe until then. Too, we are slowly increasing the onfi medication, but we have not seen any decrease in her seizures - only an increase in the lethargy again. Needless to say, she will definitely be admitted to LeBonheur on the 30th, most likely for the whole week.
I cannot express how discouraged we are right now - and we feel such deep, agonizing grief over our precious Milla and her suffering. We have pleaded to God for mercy - please pray with us for His mercy and protection. I've said this before, but I say it even more so tonight, there is no hope but our hope in Him. It is absolutely the only thing we can cling to. Please pray that God renews our faith day by day, moment by moment.
The 'new' house is coming along well and we continue to pray that God brings us a buyer soon for our Midtown house. We would surely welcome the weight of this house off of our shoulders.
Thank you for your love, prayers, meals, cards, flowers, gifts, emails, phone calls, texts, offers to help us - I cannot tell you how much it sustains us to know that we are not alone in all this! You are truly the hands and feet of Jesus to this family.
Much love,
Dana
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