I am currently at LeBonheur, writing to you from the 7th floor while Milla sleeps. Frazer is currently in Columbus, OH with Elle - they just got discharged about 30 minutes ago from the hospital there after a successful 5th infusion. This is how we celebrated our 14th wedding anniversary Wednesday. :) One for the books for sure. But it's all part of it right?? Sickness and health, good times and bad times. God is good through all the times and we are thankful for our marriage, our friendship, our girls and our life together.
AAAAAAND Milla is 6!!!!!! There has been much to celebrate and much to grieve over the last couple of weeks. We roll with it...1 day at a time...sometimes ½ a day at a time.
I'm excited to say that we have a couple of new people in our lives to help us out in the afternoons, and hopefully we will have a couple of new LPNs to help us out at night starting next week. But the night situation is still iffy and difficult and frustrating, so please, please pray for this. The LPNs are through a staffing agency, so we only have so much control there. It's been a heavvvvvy burden for awhile now - and we are pleading with God to ease this burden. Milla will start getting regular medication every 2 hours, for awhile at least, so we really need to have help, more so than before.
Elle's infusion went fine and she and Frazer will be flying home tomorrow. Yay! She has not been doing good - walking, talking, seizing all going downhill. But Frazer said this morning that she was walking (still with assistance) better than she has in 3 weeks.
Milla and I will be here in the hospital another night. She has a fierce UTI and she will have a kidney ultrasound in a bit to rule out any kidney stones and to see if she has had chronic UTI's. This may or may not be the cause of her downward spiral with spasticity and seizures and just not feeling good. We are also starting her on more frequent doses of some of her current meds (so she gets a higher dose total for the day) and starting her on a new med today to see if that helps. It could make her blood pressure bottom out though, so we are monitoring that closely while here.
Milla has not been doing well since my last update and Frazer ended up going to Columbus last minute with Elle a couple weeks ago for her last infusion because of Milla's condition. The same thing happened this week. I was scheduled to go with Elle and we switched at the last minute so I could stay with Milla. So she's been down for about 3 weeks now. Please pray that we can figure out all this mess out with her little body and figure out how to make her comfortable and happy so that she will be able to do her life pain/discomfort-free. We know her road is only going to get more difficult but we long to make her as comfortable as possible and want her to be able to do-life as much as she can until our sweet Jesus takes her to be with Him.
Please continue to pray for Ann Carlyle as she has to continually deal with changes in her schedule and mom and dad being gone and sisters in and out of hospitals and general life up-heaval. Bless her, it's a lot. I know I always say this, but, truly, she amazes me. She's such a great kid and is strong as an ox. I don't like to throw toys and treats and gifts at her to 'make-up' for the craziness of her life (she has to learn to cope in other ways, of course), but I've got a lego set with her name all over it when we get home (hopefully) tomorrow. :) That kid loves legos and I love that about her. She is AWESOMELY creative. And silly and funny and beautiful inside and out.
Frazer and I are doing okay...as always, it will be good to get everyone under the same roof soon. I think we are running on adrenaline and manna. God is sustaining, as only He can do. Thankful for all the ways He is showing up.
Oh - side note - many people have asked how many times we will be going to Ohio with Elle. She has to get this infusion every other week forever...it is a treatment, not a cure. In a way, it is like a diabetic needing insulin. She doesn't make the enzyme she is supposed to have in her brain cells (like a person with diabetes doesn't make his/her own insulin) so she has to continually get the enzyme as her body uses it up and needs more (like getting insulin). We are praying and hoping that soon, the enzyme will become FDA approved/commercialized so that she can get it infused in Memphis or somewhere close to Memphis. It is, of course, a complicated process. But until then, she will always have to go up to Columbus every other week.
I will try to send another update when we know more about Milla's kidneys.
Thank you for every, every, everything!
Much love,
Dana
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