Sunday, November 30, 2014
So despite my very, very best intentions, I haven’t had enough minutes in a row to sit down and write and update. But as always, thank you for staying so faithful to pray for us and for helping us get through each day.
Honestly, it is very difficult for me to write these updates as it not only takes awhile to do, but it also is so emotionally difficult. I want nothing more than to be able to write, everything is fine now! All is well! And it pains my heart that I can’t write that.
But I also know that it is a very good thing to let you in to our lives to pray for us, help us, love us…entering into our darkness and pointing us towards Light.
Our sweet Milla is not doing well. It seems that daily we see her slip a little more and more into her disease. Her mind is not always clear, her speech is regressing, she isn’t eating well and her motor skills are declining rapidly. She is very weak and most of the time wants to be held or is sedentary. She has times where she wants so much to be active and will try to twirl and dance or jump and run but it is short-lived and usually involves a bruise or two (or three). But most of the time, she can barely walk or even stand up. She walks like she’s in a tilted fun-house or like she was just spun around 100 times, leaning to the side.
Also, her seizures are worse - particularly the last 4 or 5 days. Milla's seizures throw her whole body around at times and other times it is only her head flinging backwards or forwards. It happens so fast that there are instances that even if I am holding her, her head and upper body can fly back and hit a wall or countertop, etc. Worse, her head can fling forward. She is constantly sporting a black eye and/or black and blue chin these days. We are waiting for a specially made helmet and will hopefully receive it by Christmas. It will not prevent all bumps and bruises but should protect her from serious head injury. She is truly tough as nails, but I just feel so sad when I think of how sore her body must feel all the time.
She had an EEG last week which showed a ‘slowing’ in her brain wave activity. This basically shows that her disease is progressing. Also, her doctor felt that she would most likely be bedridden within 6-12 months. And while we know for certain what this disease holds for Milla, and we see the progression in her physically, this was all still so hard to hear.
The good news is that we can still get her to giggle and can still find things that she enjoys doing. And we are doing a lot of snuggling because her body is just so worn out from the seizures (too, she is taking a lot of naps in my arms). Sleep is still an issue but we’ve found a couple of ways to get us through it for now.
Also good news is that Elle seems to be doing just fine. Her speech is a little delayed so we are going to start her in speech therapy and she has seemed a bit more short-tempered (most likely due to her anti-seizure medicine), but other than that, she is great. Full of energy and personality - she is still our little pistol we know and love. :)
As with Milla, we don’t know the exact timeline of Elle’s progression, but it’s hard to think how much like Elle, Milla was, this time last year. While we grieve this brutal disease, we are soaking up all that we can with both of them.
As always, thank you for EVERYTHING - physical, emotional and spiritual needs being met everyday. Thank you for holding us up and carrying us forward. Thank you for praying - and for telling us how you are praying. Thank you for all your words in all the forms they come in and for all the little ‘happies’ for us and the girls. Know you are being used in mighty ways by God and are most certainly treasured by us. I long for the time to thank you all personally but as I cannot, please know our gratitude runs deep. Know that God is using you to teach me how to love people. I am constantly humbled by all I am witnessing. God is here - He is present.
Much love to you -