Wednesday, October 15, 2014
Wow - so much happening these days!
I'll start with the great news...we got our closing for the new house pushed back a week!!! This is GREAT because the new house will not be ready to move into by next weekend. We've been stressed about it all coming together in time for the move next weekend and now we have a whole extra week!
We've had things go wrong seemingly everyday but then the Lord provides amazing things every single day as well.
We have had such an outpouring of help and support - it is humbling and wonderful and although I am brokenhearted by Milla's diagnosis and so apprehensive about getting results back from the other 2 girls' test, I see His hand moving and providing for us everyday and I truly do not feel abandoned by God.
So we took the Ann Carlyle and Elle to LeBonheur last Thursday to get their blood drawn to send off for the genetic test to see if they have the same disease as Milla. And while 3 of us still had to hold Ann Carlyle down, she did way better than I thought she would (thank you for the prayers)! And Elle was pretty oblivious most of the time (and she's the tiniest little wisp of a thing) so she was a much easier patient. Their tests should take 4-5 weeks to get the results. It's excruciating to wait and wonder and worry. I try to keep it on the back burner and not think about it much, but of course, it's on my mind a lot. Yet another reason I am glad to be so busy with the renovation and moving.
Also last Thursday night, someone broke into the new house and took all the faucets for the kitchen and 2 of the bathrooms, some tile and a huge bag of coats and fleeces, etc that I had taken over there back in August in order to de-clutter before listing our Midtown house. (I thought we would be in the new house well before it turned cold outside - crazy me!) Needless to say, we were pretty discouraged. Fortunately, they didn't take some other things that were there (and un-installed) like the stovetop, toilets, a pedestal sink, etc. So it could've been a whole lot worse! But still super discouraging.
HOWEVER...while all this was happening over the weekend, we also had people providing so many things for us. Wonderful, amazing, everyday things like food and picking up things at the grocery store and childcare (aka lovin' all over the kids like crazy) and of course, prayers (treasured, so treasured)...but also a place to stay should we need it if we have to move before the house is ready...a cleaning service for the new house after all that construction (which it desperately needs)...help with the yard...help with picking up Ann Carlyle from school so Milla can nap longer if she needs to...a packing service to come pack EVERYTHING...moving expenses taken care of...and even a lifestyle photo shoot for our little family! And so, so, so many offers to help wherever it's needed.
I'm leaving out a ton of things, but I'm telling y'all, every step of the way, God keeps saying, "I am here. I am with you. And I love you." He has seen all these little worries and desires in my heart which I haven't even prayed about (just worried about) and provided for them directly. He is using y'all to show me that He is with us and providing for us...over and over again. God is good and He is kind and He is merciful. We so desperately need these reminders in our lives - every day - multiple times a day.
Milla had a couple of good days last week but she isn't doing so great this week. We see her symptoms slowly getting worse, mainly her walking and lack of steadiness, all-over weakness (she has trouble holding herself up at different times in the day) and being zoned out (and of course, her seizures). And this is typically how her disease progresses...things will get worse and then plateau and/or she'll have some good days and then get worse again, etc. It's a brutal disease and we are still trying to wrap our heads around all this. Dr. Wheless changed up her med dosages today, so we will see if that helps anything.
So please continue to pray for our hearts - we are still trying to process all this (but also feel like we don't even know how in the world to process it). We feel numb at times and other times feel every possible emotion. As Frazer says, there is just no context for this. It is a discipline we have to practice to take one day at a time and a discipline to say, God loves us - and our hearts will choose to say, I will trust You, God. Like I've said before, there is nowhere else to run, nowhere else to hide...there is only the cross. There is only the fact that I'm a sinner saved by grace - saved by Jesus' death on the cross and resurrection. He has triumphed over sin and disease and death. He will make us whole. And until that day, He will sustain and provide and give us a haven where we can hide and rest while the storm beats against us.
A friend sent this to me last night -
"One or two realities will always be true...Jesus will either extinguish my fear or hold me in the storm, and in both cases, my chant is clear, my confidence in singular...He has overcome! Peace is not a feeling. It is a reality you come to know when trembling in the arms of the One who is peace. Peace is a person."
We don't feel like everything is 'okay' but we feel Peace.
I have told many of you this - knowing we are not alone is helping us in ways I just cannot express. So again, thank you for emailing, texting, calling us - for helping us and hugging us and telling (and showing!) us you love us. For praying so faithfully and sending us the word of God to encourage us. Thank you for hurting with us and crying with us. My cup runneth over. We are so, so thankful for you.
Much love from the Gieselmann 5 :)
PS - Know that every single word that any of you have sent has been stored away in my heart. I hate that I haven't had the time to respond to every email or phone call but know, please know, that we treasure every word.
And PPS - I am going to make the blog public so now anyone can get to it. It is thegieselmann5.blogspot.com. And if anyone wants to be on the email list, feel free to let me know.
Tuesday, October 7, 2014
Hey y'all - we amazingly got a call this afternoon that Milla's genetic test results were back and Dr. Wheless wanted us to come in to meet with him.
We found out that Milla has Batten Disease. This diagnosis basically confirms what we already had learned from Dr. Wheless last week - Milla will continue to lose skills and abilities and her health will decline and we will lose her at an early age. We feel our hearts are laid open all over again tonight.
Please pray for our little family - we also learned that there is a possibility that the other 2 girls could have this same disease. It is a blood test and we will most likely have them tested sometime in the next few days. We don't think the results will take as long as Milla's took, as they are looking for one specific thing. We are pleading, pleading for God's mercy.
We love you all -
We sang this song at our wedding...we knew life wouldn't be easy (it never is)...but we never could have imagined this kind of sorrow. But I know my Savior loves me, loves Frazer, loves Milla, loves Ann Carlyle, loves Elle. Our circumstances may change but He does not. He loves us with a love that cannot be measured and so I will hide there tonight.
When peace like a river, attendeth my way,
When sorrows like sea billows roll...
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Monday, October 6, 2014
How thankful we are to have you in our lives...to pray for us and to love us. Thank you for helping us through the last few days and for helping in the days ahead.
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.
Friday, October 3, 2014
We came home from the EMU last night with Milla. We met with Dr. Wheless and the MRI showed that Milla's brain is not only not growing, but digressing in growth. There is still no diagnosis as we are waiting for the genetic tests to come back in the next month to shed some more light on her condition. Dr. Wheless is hopeful for a diagnosis through the genetic test but if the test does not show anything, we will most likely need to do a biopsy.
Even with no diagnosis, the digressing brain growth seen in the MRI, the lack of development we see day to day and the seizure activity are not good, long term, for Milla.
We are burdened and our hearts are heavy. Please lift our family up in prayer.
We are burdened and our hearts are heavy. Please lift our family up in prayer.
Wednesday, October 1, 2014
So last night wasn't so much filled with sleep...I told some friends earlier today, I like to refer to is as rest-time. BUT, the good news is that hopefully tonight will be a bit better (not only because we will be so completely exhausted from lack of sleep) but because Milla her EEG leads taken off around noon!! Yay! Dr. Wheless felt like he got all the EEG data he needed, so he didn't see any reason to keep her wired-up and uncomfortable. Milla and I are both very grateful for this respite! :)
Dr. Wheless also confirmed our suspicions, that Milla is having a new type of seizure...atonic or 'drop' seizures. These seizures make the body's muscles relax so they cause the person to fall. Some falls can be 'graceful' - like a gradual slump - but some can be falling plank-style. The plank-style ones are pretty scary as she falls fast and hard. Fortunately, we've seen few of the plank falls, although during her physical therapy evaluation today, she had 2 in a row. Fortunately, between me and the therapist, we caught Milla both times before her head hit the tile floor. I was not encouraged to see her have those falls basically back-to-back but it might have been due to her exhaustion from a bad-night's-sleep, lots of activity this morning and it was well past her normal nap time. Please pray that these seizures don't become her new normal!
Some of that morning activity I just mentioned was her neuro-psych evaluation. I don't know the results yet, but she participated well without me having to be present. The psychiatrist will come by tomorrow to give me the preliminary results and we will get a full-scale report in about a month.
And, as I mentioned before, she had a physical therapy evaluation to see if she needs this therapy regularly on top of occupational therapy. And the answer is yes. She will have a more extensive evaluation out-patient and then based on that evaluation, they will tell us how often and how long physical therapy is needed for Milla. Unfortunately, it will not be where she has speech and occupational therapy, but I'm praying we will have wisdom on how to fit this into our weekly schedule.
Sidenote: You know, I've been meaning to tell y'all that God really answered our prayers for Milla's therapy schedule back a month or 2 ago when we started it. I had asked for prayers that her therapies would be back-to-back and that God would provide for Elle as well as I knew one of those therapy days would be 1 ½ -2 hours long (and we weren't sure if I would be needed in the therapy for Milla to participate). And it all has worked out so wonderfully! She does her therapy without me in the room. She goes to speech on Tuesdays for just 30 minutes, so it's fine for Elle to come along. And on Thursdays, her therapies are back-to-back and a dear friend (who already has her plate FULL), takes Elle with her (and her 3 littles) to Bible Study...and then graciously feeds her lunch as well and shows back up with her at my house just in time for nap! All that to say, God has completely and utterly provided for that little request of mine and has made it 'easy' for us to do every week...easy in the time of day as well. He is good!
Milla's MRI is scheduled for first-thing in the morning - pray for an easy IV stick and a smooth procedure. Pray that it will shed some light on what is going on with her as Dr. Wheless is still in the dark about what is happening with Milla and is hopeful this will provide him with some direction.
Thank you, thank you, thank you for your prayers, your encouragement, your hugs, your help, your support...just being our extended family through all this. I feel that I am standing on hallowed ground through all this. God is ever-present and we see Him constantly.
I was reading a friend's blog today and she included the lyrics of 'Come, Ye Sinners' - a song I love and have written out in 1 or 2 of these Milla updates myself. But a couple lines stuck out to me this day...
View Him prostrate in the garden;
On the ground your Maker lies;
On the bloody tree behold Him;
Sinner, will this not suffice?
He suffered. He wept. He plead for that cup to be taken from Him. He died for me, for Milla, for you.
He knows our pain, our heartbreak, our cry for mercy. And He also knows how many hairs are on our heads. Amazing. As a sweet friend reminded me the other day, God knew Milla and His plan for her as He was knitting me together in my mother's womb. Just think about that for a minute. Let that sit with you - God, our Creator; God, Who became man; God, Who knows our suffering because He too suffered and wept; God, who gave His life for us.
This is my hope. This is my song as I am feeling anxious about tomorrow and the MRI - praying for answers and for mercy in those answers. Oh the deep, deep love of Jesus...