We wanted to write and give y'all a little more detail of what is going on with Milla - although we still don't know a lot.
Milla's brain is degenerating and will continue to do so, short of God healing her. We continue to wait on the genetic test results that will give us a specific diagnosis that can help with her treatment plan and can offer a little bit of a clue to what this will look like in the months and years to come. We do know that her treatment plan will consist of treating her symptoms and keeping her as comfortable as possible - there is not a cure that we are aware of. If the genetic test shows nothing, Dr. Wheless will do a biopsy of some skin (from her armpit) and a biopsy of her brain to gain some information to help him diagnose her. We expect to have the genetic test results back by the end of the month. If we have to do the biopsies, she will be in the hospital for a couple of days and those results will take about 10-14 days.
Even though we don't have a specific diagnosis at this point, we know that as her brain continues to degenerate, she will lose abilities that she once had, such as walking and talking. We don't know how quickly this will happen, but at some point, the brain will stop supporting the essential bodily functions. Dr. Wheless said this can happen from childhood to adolescence to early adulthood, so we do not have a handle on what the 'long term' is for Milla.
We are still in a bit of shock trying to process all of this - in a fog of grief and disbelief - but basically, just putting one foot in front of the other right now. We have work and 3 little ones and a house being renovated and a move in 19 days. So our emotions swing back and forth from heartbreak to being on-task and everything in-between.
As far as how Milla is doing right now...the good news is that her screaming 'neuro' fits have dramatically decreased. I'm not exactly sure why but we are thankful.
Her instability, however, has increased a good bit. Her gait is very unstable, any little thing makes her trip so, of course, she is falling a lot. She is unable to walk in a straight line and her movements are very jerky. It hurts our hearts so much to see her struggle with this, as she so desperately wants to run and jump and play.
Her bouts of being out-of-it are also on the rise. I'm not sure if it is due to lethargy from her meds or if it is just her neurologic condition. Dr. Wheless said he really didn't see any absence seizures while we were at LeBonheur, so I'm assuming it isn't seizure activity.
On a positive note and in spite of everything, we (and her sisters) are able to fairly easily draw a smile or giggle out of Milla these days. And both Ann Carlyle and Elle have been showing a tenderness towards Milla that I have not seen before. It is so amazing to see Jesus coming out through them as they have compassion on Milla. It is truly the work of God and brings me such joy.
And so it is - I am finding joy in and am thankful for the abundant blessings that God has given us everyday, most of which we often take for granted. I question why Milla has to suffer this path but I do not question God's goodness or presence because I know it to be true - I have experienced it and seen it time and time again. I have felt a sustaining grace as I move through my day - just when I think grief might completely overtake me, He pulls me out of the mire and sets my feet on a hard place. When I think of the days and years ahead of us, I become almost paralyzed with fear, and I have to remind myself of the mercies He promises that are new every morning. I have to remember His faithfulness, His love, His goodness, His death that brought me life. I don't know how else to walk this road.
I will sing praise to God, He has lifted me up.
He heard my cry for help, and has filled my cup.
His mercy extends for a lifetime; His grace gives me strength each day.
My soul shall sing His praise, forevermore.
Please continue to pray for our hearts - that we will find our strength and sustenance in Him. That we will be given the grace to do this. We find ourselves so wrung-out and wondering when we are we going to get to stop living in 'survival mode.' Please pray for our ability to care for Milla and also for the wisdom to do so as we make medical decisions for her. Please pray for Ann Carlyle and Elle - that God would continue to cultivate tenderness and compassion in them that they will also have for others as they go through life - and that He would draw them close to Himself. Please pray for wisdom for us as we will be talking to Ann Carlyle in the coming days about Milla's condition. And please pray for our sweet Milla-willa...pray for a miraculous healing...but if that is not God's path for her, that He would be merciful to her and that He would draw her heart to Himself. And on a practical note, please continue to pray that the new house will be ready in 19 days, that the closing will happen without incident and that the packing and the move would go smoothly (as smoothly as moving can possibly go!). Just a couple of little prayer requests. ;)
Thank you for suffering with us through this - there are no words to tell you of our thankfulness for you all.
Much love,
Dana
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