Unfortunately, the phrase, ‘no news is good news’ has not really been the case for us the last month or so. But I’ve just been too busy and covered up to sit and write out my thoughts.
I’ll start with the week leading up to my birthday in August…Frazer got pneumonia. The real-deal pneumonia. He was flat on his back for a solid week and then in the middle of that, we realized that all of us girls had lice. (My head still starts itching every time I think of it.) Not the best of times in the Gieselmann household. But the Lord’s graciousness prevailed as our village, once again, showed up and carried us through the darkness that almost consumed me. And thankfully, no one else got really sick…we all had a bit of a cough for awhile, but nothing that put any of us in the bed.
Soon thereafter, Ann Carlyle started first grade! She is at a new school this year. We were completely happy with the school where she attended kindergarten but God gave us an incredible opportunity to put her in a small, Christian school where my sister-in-law actually works as a counselor and where she can be nurtured in ways her old school would not be able to. And she LOVES it there. Really, really loves it. Thank you to all that made this possible and for those that are driving her to school and back home again every day!!! She is happy and being challenged and is thriving and is well-cared for! This has been a ray of light for us in an otherwise pretty dark month.
Elle and Milla also started back at PDO, where Milla’s one-on-one teacher also returned this year to help with her. A HUGE thank you to everyone at PDO that love us and our girls so well and who have made it possible for Milla to go there. I have no doubt that being there has improved Milla’s quality of life…she is happy to go and the socialization she gets to experience is such a gift.
So all in all, it was a good week when the schedule and routine made their ways back into our lives! I actually got to go to the store for the first time in 2+ weeks for more than just 3 or 4 things to get us through the next day. Everyone was relatively healthy and completely lice-free and while there was still plenty to be anxious about, I let out a little sigh of relief that we had made it through sickness and critters and no schedule of any kind. (Only by the grace of God and the people He continually puts in our lives.)
But we were about to be hit again - knocked clear off our feet.
So back in July, we went to the Batten Conference in Chicago primarily to meet with certain doctors and researchers that are involved in a clinical trial of a drug that could possibly save the lives of children with the exact mutation of this disease that our girls have - possibly even stop the progression of the disease. (When the study was open last year, Milla was too far along in her disease process to qualify and Elle was not old enough.) But now Elle is old enough and we learned there was a possibility that the study would reopen sometime this fall and that Elle could be a good candidate.
This would be an amazing and life-changing possibility for Elle and all of us but it would also require us to move to Columbus, OH. And move soon. And the thought of leaving our vital support and life-giving team here in Memphis and leaving our families to move so far away was excruciating and scary and completely overwhelming, especially in light of Milla’s condition. Of course, we were willing to do whatever it takes if it meant saving Elle’s life, but the logistics and details and Frazer’s job situation and on and on have been hard to comprehend and we had to keep telling ourselves that God would provide for us as He always has done.
But I’m going to be honest…there’s been a whole, whole lot of anxiety. And too, I struggled with fear. Did we dare to hope that Elle’s life could be spared?
However, we found out about a week ago that Elle would not be getting into the study. As you can imagine, we were crushed. It felt like we had found out about her diagnosis all over again.
As I have said before, I have no business questioning why God. He is God. I am not. But I know His love. I know He has not abandoned us. I know He loves all 5 of us more than we could ever hope or dream. But sometimes (most of the time) it is hard to not understand…to not be able to see.
And literally, the day after we got the news, Milla started to decline again. Her lungs have filled with fluid that she has not been able to clear completely. She has been struggling to breathe and had a day last week that we had to give her a bit of oxygen through a mask on her face to keep her sat greater than 90%. (‘Sat' is short for the oxygen saturation in her blood. Normally, a person sats around 98-100%. We want the sat to be greater than 92%. If it falls below 92%, we need to give her oxygen.) So we started her on an antibiotic just in case of an infection and also started a drug that should help dry up some of the fluid in her lungs. It seemed to work a bit but then she would get worse again. Her condition seemed to oscillate back and forth for a few days. But yesterday, she had a great day, relatively speaking - her lungs sounded better than they had in a long time and her sat was staying in the upper 90’s most of the day. And today, even a tad better!
We are praying that she stays on this course and keeps improving. We are not sure, however, if she is temporarily responding to these drugs and will continue to do so, or if we are just seeing a couple of good days. But what we ARE sure of is that Milla is a fighter. She is stubborn and determined and absolutely amazing. She still has her silly sense of humor and still tries her best to stand and walk and crawl and talk and be a part of the action. She laughs and bosses Elle around and loves to be with people.
We are not sure yet if we will be able to send her back to PDO or if her needs are simply too great at this time. But please pray that she can return there. It is so good for her to be there and out of the house and to be with people and kids her age. The days that Elle went to school without her, she was so sad. She kept pointing towards the driveway and saying ‘car.’ I don’t want to keep her cooped up…a happy heart strengthens the body.
And please pray for all of us as we watch Milla's disease progress. It is incredibly difficult watching her struggle to breathe and wonder if she will be able to fight through it. Ann Carlyle is seeing it all too and trying to process it. (She is doing okay for now, but pray that she continues to process in a healthy way.)
Elle has had some hard weeks as well. We have had to increase one of her meds 5 times over the course of 6 weeks or so. We are seeing more seizures and more neurologic irritability and physical instability. In other words, she is screaming a lot and bumping into things a lot. It’s been about 4 days since our last increase and I think we are starting to see a little decrease in her screaming fits. But she’s been really hard to deal with lately. We remember Milla going through this as well - the difference is that now we know why Elle is acting this way. Knowledge is a very good thing but it doesn’t make it much easier emotionally, especially when we have a front-row seat to all that Elle has in front of her.
I’m sorry this is so, so long but there is just a lot to explain and update. Thank you for hanging with me through it!!
So we continue to ask for your prayers - please plead to God for His mercy. We feel like we are getting hit with one thing after the other lately and we are weak and tired and constantly fighting the fear of drowning in all this mess.
Pray for perseverance and stamina and unwavering trust in God. Pray that we will not succumb to doubt and fear and sadness. Pray that we would be able to live with joy and thankfulness for the time we have with our girls. Pray that we would have energy to keep up with all of them and parent them and love them.
I pray that the light of Jesus would shine ever bright - in us, by us, through us - that no one would ever doubt His goodness and love and saving grace. I can’t tell you why 2 of our little girls have this disease and will die from it, but I can tell you that Jesus is all we need. I can tell you that saves us from our brokenness. And I can tell you that when our girls die, they will be with Jesus and they will be whole. He created them and loves them beyond measure.
Oh my Strength, I give praise to You.
In joy or pain, I give praise to You.
Night and day, I give praise to You.
Always, much love and thankfulness for you all. I cannot express all my heart feels for you.
Dana
PS - On September 13th, Frazer and I are taking Milla and Elle up to Columbus, OH to meet with the doctors at the Batten Center at Nationwide Children's Hospital. Please pray that Milla will be strong enough to go and that we will be able to travel safely and keep our sanity, as we will be driving. :) We are hoping to learn more about the disease and how to possibly better medicate them for seizures, sleep and other disease symptoms.