It's been awhile - honestly, I didn't realize how long it had been until I was looking back at the last update.
Part of the radio silence has been due to busy-ness. The whole going-to-Columbus-every-other-week thing along with the holidays and getting back in the swing of things (well, trying to, at least) has been difficult. Also, I haven't felt like I have had anything to say. It's weird. I either feel too much or too little and both feelings make me clam up.
Truly, I don't know of anything else that people can do to make our treks to Columbus easier. But it is still exhausting and hard. Ann Carlyle hates that one of us has to go - doesn't matter which one of us, she's not happy about it. And as of the beginning of December, Elle has been having a reaction to the enzyme infusion. She has started running a pretty significant fever for about 48 hours post-infusion. Also, she had a severe vomiting episode after the January 5th infusion and only a couple of rounds of zofran (anti-nausea med) kept everything down after this past week's infusion.
We have been able to get Elle's infusion out-patient in the research clinic (still on hospital property but not in-patient) since the beginning of December, but after the vomiting reaction, she was admitted to the hospital overnight so they could run (seemingly) every test known to man to make sure she didn't have some kind of infection. Everyone was pretty worried about her because no one in the clinical trial has ever had that reaction. (However, a 24-hour fever is relatively common.) But it seems that this is going to be Elle's norm for awhile as the enzymes are most likely building up in her brain at this point (a good thing) and her body may be having some kind of autoimmune response to it. We don't know if she will always feel rotten and have a fever following an infusion or if her body will eventually get accustomed to it all.
The good news is that we are seeing her have days where her seizures are way down in frequency...but the ones she has are pretty intense drop seizures. We are also seeing an, albeit small, improvement in her speech and strength/balance. I think her tremors are a bit better too at times. None of these things are a constant change, but the little pockets of times where we see improvements are encouraging.
But the fickleness of it can be difficult and discouraging. I can't help but feel tense and exhausted riding this roller coaster of is she better/worse/the same? I don't know if her head hurts or her tummy hurts or if she feels out of control. Sometimes she will be screaming and crying more-so than usual and for no apparent reason. I hate that she can't tell me what is going on and I hate that in those times, I can't fix it.
I think we can confidently say, though, that Elle's disease progression has slowed down. This could be due to the enzymes or it could just be her path. Milla had times of progression and times of plateauing. Regardless, we are very thankful for Elle's slow down, especially after the months-long steep slide she had this past summer.
The physical, mental and emotional stress of her journey threatens to undo me at times. Just getting out of bed can feel like a climbing Mount Everest. Once I am out of bed, the ball starts rolling and fortunately carries me along for the rest of the day. The busy-ness of life is a blessing and a curse. I would love to not have any responsibilities and sleep this all away, but I have 3 people who greatly depend on me and who I love so much, therefore, I have to get out of bed. And in the end, I am thankful to have my people to force me to work through my grief and not just sit in it for the rest of my life.
I still feel in the fog and shock phase much of the time, although more and more, the deep, dark, searing pain of Milla not being here touches my heart and it literally takes my breath away. I can't even begin to express how much I miss her. While I know with all my heart I will see her again, most likely it won't be for a very long time, and so it can feel like that time will never come. My heart feels raw and bruised and broken and I wonder, when will it not feel like this? When will it not be so hard to breathe in and out? When will my chest stop hurting? When will I feel like that person I used to be that doesn't have so much anxiety just being around other people? And I know I will never be the person I used to be. That person changed in October of 2014 when we got Milla's diagnosis. And I have to be okay with that. And I am okay with some of it...still struggling with other parts of it though.
Frazer and I are doing okay - our tanks are empty but together, we are okay. Please pray that we will continue to stay connected and relating well to each other. We both very much know that it takes a lot of work to make it through this together. In the depths of grief, it is hard not to shut down and shut everyone out, even the ones you love the most.
Also, please continue to pray for our hired night help. We are still having issues with the staffing agency that have been going on since July. It is utterly exhausting and has caused so much frustration and stress in our daily lives.
Ann Carlyle is doing better, I think, being back at school. The holidays hit us all pretty hard. Harder than I thought they would. She's still talking about Milla and being open about her grief - in general, she is doing well.
Thank you to everyone, again, for all your help and support with groceries, dinners, carpool, child care, Ohio travel, Ohio house, Ohio help in every way, prayers, encouragement and friendship near and far. You people are amazing. Thank you for helping us get through each day. You are a God-send. Truly. He uses people in mighty, mighty ways - nothing is a big thing or a small thing - all are mighty. Even when it's hard to see or feel anything but pain, He is moving, He is working. He has never left us and He never will.
Milla loved birds - she loved listening for them and hearing them even when she could no longer see them. 'Bird' was one of the last 4 words she could say. She was so proud to be able to say it. She was so excited when she would hear one sing. I always think about the sparrow when I think of Milla. God tells us His eye is on the sparrow and yet how much more valuable are we to Him?
(You will find this in 2 places...Matthew and Luke. So it must be something super important that He wants us to remember...something that, perhaps, we easily and often forget.)
My heart finds comfort and joy in thinking that His eye never left Milla. Not for a moment. And you know what? His eye has never left me either. Not for a moment. Even though great pain and sorrow has come into my life, He stays true. He stays the same. Ever faithful, ever loving, ever present.
Where else can I go? He is the Christ. He is the Light. He loves us so, so much.
God's love and our love to you and yours,
Dana
(I'm planning on loading some pictures onto the blog tomorrow.)
