Wednesday, October 1, 2014
LeBonheur Day 2 - Moving Right Along!
So last night wasn't so much filled with sleep...I told some friends earlier today, I like to refer to is as rest-time. BUT, the good news is that hopefully tonight will be a bit better (not only because we will be so completely exhausted from lack of sleep) but because Milla her EEG leads taken off around noon!! Yay! Dr. Wheless felt like he got all the EEG data he needed, so he didn't see any reason to keep her wired-up and uncomfortable. Milla and I are both very grateful for this respite! :)
Dr. Wheless also confirmed our suspicions, that Milla is having a new type of seizure...atonic or 'drop' seizures. These seizures make the body's muscles relax so they cause the person to fall. Some falls can be 'graceful' - like a gradual slump - but some can be falling plank-style. The plank-style ones are pretty scary as she falls fast and hard. Fortunately, we've seen few of the plank falls, although during her physical therapy evaluation today, she had 2 in a row. Fortunately, between me and the therapist, we caught Milla both times before her head hit the tile floor. I was not encouraged to see her have those falls basically back-to-back but it might have been due to her exhaustion from a bad-night's-sleep, lots of activity this morning and it was well past her normal nap time. Please pray that these seizures don't become her new normal!
Some of that morning activity I just mentioned was her neuro-psych evaluation. I don't know the results yet, but she participated well without me having to be present. The psychiatrist will come by tomorrow to give me the preliminary results and we will get a full-scale report in about a month.
And, as I mentioned before, she had a physical therapy evaluation to see if she needs this therapy regularly on top of occupational therapy. And the answer is yes. She will have a more extensive evaluation out-patient and then based on that evaluation, they will tell us how often and how long physical therapy is needed for Milla. Unfortunately, it will not be where she has speech and occupational therapy, but I'm praying we will have wisdom on how to fit this into our weekly schedule.
Sidenote: You know, I've been meaning to tell y'all that God really answered our prayers for Milla's therapy schedule back a month or 2 ago when we started it. I had asked for prayers that her therapies would be back-to-back and that God would provide for Elle as well as I knew one of those therapy days would be 1 ½ -2 hours long (and we weren't sure if I would be needed in the therapy for Milla to participate). And it all has worked out so wonderfully! She does her therapy without me in the room. She goes to speech on Tuesdays for just 30 minutes, so it's fine for Elle to come along. And on Thursdays, her therapies are back-to-back and a dear friend (who already has her plate FULL), takes Elle with her (and her 3 littles) to Bible Study...and then graciously feeds her lunch as well and shows back up with her at my house just in time for nap! All that to say, God has completely and utterly provided for that little request of mine and has made it 'easy' for us to do every week...easy in the time of day as well. He is good!
Milla's MRI is scheduled for first-thing in the morning - pray for an easy IV stick and a smooth procedure. Pray that it will shed some light on what is going on with her as Dr. Wheless is still in the dark about what is happening with Milla and is hopeful this will provide him with some direction.
Thank you, thank you, thank you for your prayers, your encouragement, your hugs, your help, your support...just being our extended family through all this. I feel that I am standing on hallowed ground through all this. God is ever-present and we see Him constantly.
I was reading a friend's blog today and she included the lyrics of 'Come, Ye Sinners' - a song I love and have written out in 1 or 2 of these Milla updates myself. But a couple lines stuck out to me this day...
View Him prostrate in the garden;
On the ground your Maker lies;
On the bloody tree behold Him;
Sinner, will this not suffice?
He suffered. He wept. He plead for that cup to be taken from Him. He died for me, for Milla, for you.
He knows our pain, our heartbreak, our cry for mercy. And He also knows how many hairs are on our heads. Amazing. As a sweet friend reminded me the other day, God knew Milla and His plan for her as He was knitting me together in my mother's womb. Just think about that for a minute. Let that sit with you - God, our Creator; God, Who became man; God, Who knows our suffering because He too suffered and wept; God, who gave His life for us.
This is my hope. This is my song as I am feeling anxious about tomorrow and the MRI - praying for answers and for mercy in those answers. Oh the deep, deep love of Jesus...