I just wanted to send out a quick (hopefully) email while I have a second. I mentioned some of this on instagram and facebook the other day but I know not all of you see those posts.
We are on spring break this week - which is in no way a 'break' for us. It's hard to not have school for the girls, especially Elle. She needs that routine and stimulation and socialization she gets from the classroom. Anytime there is a break/holiday in the schedule, it is really, really hard. We will get through it and it will be fine but it's going to be a long week. I do have some sweet friends helping a bit here and there this week for which I am ridiculously grateful. :)
Another reason for the oh-my-soul-how-are-we-going-to-get-through-the-week is because we are without a night nurse again for 3-4 nights/week. So Wednesday through Sunday, Frazer and I will be getting about a couple of hours of sleep at night. And having no relief during the day just compounds all of it. The mental exhaustion. The physical exhaustion. The emotional exhaustion. I am constantly on guard with Elle - for her physical safety - but also as I watch her seize so much and watch her have nerve pain/discomfort and as I fear the disease that is killing her brain cells, I can feel the effects that this constant stress is having on my body. I mean, this stress has been a constant for the last 4+ years but there are times that it has been on overdrive and I feel that the last couple of months, that overdrive has been my almost constant companion.
So Elle's seizures are still uncontrolled - we have been working on that but I will say this past week, for whatever reason, there has been a speed bump with those seizures. We saw a slight decrease in the number of them but we are still not where we want her to be - which is in a (relatively) controlled state of seizures. And today, the seizures have been really bad again. Hundreds every day and even some while she sleeps.
The other thing we are having a hard, hard time with is her getting to sleep and staying asleep. This has always been a problem, as most of you know, but it's been an extra-bad problem since the beginning of the year. She writhes and twists and thrashes and tosses and turns and moans and cries when she is trying to get to sleep. It's awful. She is exhausted and has her eyes closed during all this movement and wants so much to go to sleep and her body just won't let her. Sometimes, it seems as though she is just uncomfortable but other times, she is in pain. We started a new med for her to take before naps and before bedtime to hopefully help with this. It was prescribed almost 2 weeks ago, but between insurance pre-certification and trying to find a drug store that had it in stock, we just got it Saturday evening. The first night, we saw no improvement at all. Last night, we saw a little improvement. The jury is still out, but we are hopeful. And with better sleep, maybe we will see improvement with her seizures as well.
Elle is still doing really well cognitively and is strong. She is still pulling up to a standing position, bearing weight and scooting around on her hands and knees to get around. She loses her balance or seizes and falls a good bit too, but we are thankful for the mobility that she has.
Her vision is not great and her speech is not great. She's having a harder time communicating what she needs or wants and that gets super frustrating for her and makes me super sad to not be able to understand her. But how about this for crazy...she can still say 'rain, rain, go away'! It doesn't sound perfect but for her to be able to string any number of words together is amazing. (She's had a lot of practice lately with our weather.) It's always fascinating to me the random things that hang on. Milla had things like that too. An ability will be pretty much all gone but then something within that ability that is relatively complex will still be hanging on that they are able to accomplish. The brain is so crazy complex and amazing.
We are truly fearfully and wonderfully made.
Ann Carlyle is doing well. She sees Elle's disease progression and she worries but she is talking about it and asking questions and processing it with us and that's what we want. She is turning 9 in a few weeks on April 6th and she, of course, is ecstatic about that! She's amazing and strong and beautiful and full of joy and quick to forgive and quick to laugh and has amazing empathy for others (including her parents!). We are so, so proud of her!
As for me and Frazer, we are grieving and stressed and tired and anxious...in various stages and places but nonetheless, this season has been a hard one. We cling to truths we know in our hearts, even when we don't feel them. We are leaning into each other even when we don't feel like it. We put one foot in front of the other even though it seems impossible to just do that simple thing sometimes. We miss Milla so very much. We grieve not only the brokenness we have in our little family but also the brokenness we see in our friends lives and in the world. How do we do this without breaking ourselves? Jesus. That's it. I have been paralyzed many times at the prospect of going through yet another day and having to deal with everything - the grief, the physical exhaustion, etc. Except. Except for my hope and absolute belief that Jesus is alive and that He is making all things new. Except for my hope and absolute belief that all of this suffering is for a more wonderful purpose than I can possibly imagine.
I hate to send out updates that are so down-in-the-dumps but that is honestly where we are. Please continue to pray for us and thank you for already doing that so much and for so long. Thank you for encouraging hugs and words and hand-squeezes. Thank you for helping out wherever is needed, no matter how small. Thank you for just being willing to help out. You are Jesus' hands and feet, serving Him by serving us, loving Him by loving us.
Our love and sincerest thank you,
Dana
Oh and PS - Save the date! The 2nd Annual Miles for Milla's House Bike Race is May 19th!
Oh and PS - Save the date! The 2nd Annual Miles for Milla's House Bike Race is May 19th!