Monday, February 22, 2016

Chilly Monday Update

Good Monday morning!  It's chilly and gloomy here today so I'm glad to be done with some of the morning's errands and can hole up with Milla until I have to go pick up Elle from her little school.  

Milla has homebound school right now, so I have a minute to send an update.  And speaking of, I just have to say what a blessing her teacher has been.  Homebound school is a program through the city school system to provide education for kids who have special needs and who can't attend a regular school.  Milla's teacher is phenomenal. She comes twice a week for an hour on Mondays and Thursdays.  She is so dedicated to the kids she teaches and she cares for Milla so much.  These sessions help maintain Milla's skills as much as possible - and she absolutely loves it - so it's a happy part of the week for me too.  :)

So it's been a tough week, honestly.  (Although yesterday both Milla and Elle had a great afternoon - probably because Nana and Granddad came to visit!)  We thought that Milla's tremors were getting worse, but it turns out much of that activity was actually seizures.  So we are changing up her meds again...playing with the dosages of her current meds and adding scheduled valium.  I've been pretty worried about the valium but so far she's done okay with it.  We are upping the dose (of valium) and weaning back another med today, so time will tell how her body will handle that.

Her seizures have pretty much been under control for awhile now, so it was a bit of a blow to hear that her meds weren't working as well anymore.  It just chips away a little bit more of my heart.  I know things are always progressing and that Milla's and Elle's brains are broken but some days it is harder to deal with than others.

And Elle continues to fall and trip and lose her balance and we are definitely seeing drop seizures now.  (The rather violent ones that throw her body around.)  The seizures are all of 1 second long and fortunately, she is only having around a handful a day, but that number will continue to go up and it's just ugh.  We feel that she isn't having enough to warrant more medicine yet - we are going to wait it out for now.

Oh but one awesome thing I've been excited to tell y'all about is that Elle has been doing GREAT at taking her meds the past week/week and a half!!!  Thank y'all for praying and praise the Lord!!!  I can't tell you how wonderful this is and how much this affects my day (as she takes meds 3x a day) and my state of mind.  It's sooooo great.  Pray that this continues!

Ann Carlyle is doing well - I've said this before, but I'll say it again - her school (Christ Methodist Day School) is just plain awesome.  Her teacher is amazing.  She had a President's Day Program Friday with a couple speaking parts and she nailed it.  :)  We are so, so thankful for the opportunity to have her there.  And her eating continues to improve so thank you again for the meals!

Elle, Ann Carlyle and I have been dealing with colds this past week but we have all turned a corner and are on the up and up.  Amazingly and thankfully, Milla never got it.  I saw on the news the other day that the flu is apparently alive and well, so please pray for everyone's health, but specifically Milla, as she is the most medically fragile.  (Although, that girl is probably the strongest one of all 5 of us!!)

As always, I am ever grateful for you, our village!

Much love and coziness today!
Dana

We had a super warm weekend and Milla had an incredible burst of energy yesterday - check out this picture from the park with Uncle Kent!

3 comments:

  1. As always you amaze me Dana. I know this super strength comes from the Throne above. I bought Amy's book and will be sharing it with everybody I know. I send a hug, a big one.... And many many prayers...

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  2. Praying for your precious family. Your faith and trust in the Lord is just so amazing and encouraging!

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