The Gieselmann5: November 2015

Just a (hopefully) quick word on how we are doing these days. :)

Milla is doing GREAT. I mean, really, really, really great! We have been slowly weaning her down on some of her seizure meds. (The reason isn't so great - it's because her brain has degenerated to the point that it can't generate seizures like it used to be able to.) BUT, the amazing thing is that she is tons more alert and her strength has increased exponentially. She is holding her head up more and doing sit-ups and pulling herself up to a standing position. She can also hug me tight enough to hold herself up without me doing a thing. She is swallowing better and breathing better. We've also seen more of her personality coming back. She is silly and giggles and belly-laughs and also fusses and cries some (which I like seeing as well because it's a normal thing to have all those emotions). She still has some seizures but they are definitely mild and manageable and not worth medicating. She is loving school and is so proud of herself with her new-found strength. These changes have made life more exhausting and we have to keep a pretty close eye on her (because she is sometimes over-confident in her abilities) but we are super thankful for this time.

Milla turned 5 on November 2nd and had an amazing birthday on the afternoon of the 31st. Some sweet people offered their barn and land for us to have her birthday extravaganza...and with the help of many, many people, we were able to celebrate our sweet girl's life. It was a super rainy day, but God stopped the rain literally during the hours of the party, 2:30-5:00. I know many people were praying that it would clear up that day, and all praise be to God, it did!! The party was more special than Frazer and I had imagined it to be and Milla had a blast! We will never forget it.

Elle is a bit of a different story. For much of this year, we were able to stay ahead of her seizures because we knew what meds worked for Milla and we didn't have to go through so much trial and error as we did with Milla. But we are now in the uncontrolled stage with Elle's seizures. We have been increasing doses on 2 seizure meds and are considering a 3rd one...although I think we will be able to hold off on that one for a bit longer. A little over a week ago, we spent 3 days in the EMU at LeBonheur to have EEG and video monitoring around the clock. We were able to figure out a few things...whether or not she is having a new type of seizure called 'atonic' or 'drop' seizures. We are thankful she is not having those yet. However, we are concerned that a longer seizure she had while there was not a seizure except for the first few seconds (the episode lasted 5-6 minutes - she was limp and unresponsive and her eyes were fixed - very typical of a seizure). We were told that it is just the disease progressing but we don't have any more details than that. This was not the case with Milla so we are very confused and scared about what this means for Elle. Please pray that we will get a little more of an answer with this as she has had 2 more of these episodes in the last week.

Also, we are still having a hard time with Elle's behavior - although she has calmed down a good bit from a few weeks ago. She has screaming fits but also has aggressive/violent outbursts as well. Thankfully she is no longer having these outbursts unprovoked but still has them 'provoked' (meaning she isn't getting her way, etc). She is 3 years old and I've been through the terrible 3's twice before with my other 2...but there is a different level of neurotic behavior when you throw in Batten Disease. And it's hard. Because you know it's not your child but this awful disease doing things unseen in your child's brain. Milla went through this as well but she never had the aggression that Elle displays. Elle grabs her head and covers her eyes a lot when she is seizing and she does this during these aggressive outbursts as well...so I think clusters of seizures are happening much of the time before, during and/or after these outbursts.

To make matters worse, Elle is not wanting to eat much these days. Every meal is a battle to get anything in her tummy. (And low blood sugar is just what we need.)

So throw all of the above and mix it around and it's just a hard and utterly exhausting time in the Gieselmann household right now.

On the upside, Ann Carlyle seems to be doing well...she is still loving school and having a great time with friends. There have been a few things that are probably some acting-out because of what is going on with her sisters, but in general, she is taking it all in stride.

Frazer and I just celebrated our 13th anniversary last week and got to spend a night out at the Peabody Hotel Friday night. It was wonderful and we had a truly good time with each other, laughing a lot and getting some quiet R&R. The hotel staff made our stay special with little kindnesses throughout our stay. And we had my mom here helping with the girls and a whole team of friends and family to help her while we were gone! So thank you to each and every one of you!!!

Our days are always changing and yet, in some ways, the days are all the same, with the same hurts and same grief and the same prayers over and over again. Sometimes I feel like there will never be a break and that I have absolutely nothing left to give. Sometimes it feels like my heart is broken in so many pieces and is beyond repair. Sometimes it feels like the darkness will truly overtake me. But the morning always comes and somehow I am able to make it through the day and somehow I have moments of joy and laughter and I have true thankfulness for however this life looks. I have more love for Jesus than I ever have before. He is the.only.reason that I can physically and spiritually stand. If you don't know Jesus, oh how I pray for you to know Him.

Thank you always and always for your prayers and words of encouragement (written and spoken) - thank you for hugs and help and all of it. We just had our 1 year anniversary of moving into this house and finding out the diagnosis for both Milla (in October) and Elle (November 1st...the day we moved). My memories of this time last year are foggy at best. I remember that there was always a slew of people in my house unpacking boxes and hanging blinds and helping take care of the girls (and me). I remember sadness, bewilderment, shock and thankfulness all at the same time. At times, I cringe at the way we have been so needy with meals and help with the day-to-day of our life (it's been a year and a half now with 3-4 meals a week provided for us and over a year of childcare/household help - all volunteers). It's so hard to accept help...why is that?? Pride? Independence (false, of course)? A gnawing sense of not ever, ever, ever, ever being able to repay all of you who have prayed and helped and generously given in such self-sacrificing ways? All of the above?

Well praise Jesus, it's okay. All of it's okay. And all of that sacrificing is done because of Him and by Him and through Him to sustain us in this (too-long) season of life. Whether you know it or not, you are His servant - serving a great and mighty King, Who has never left me nor forsaken me. Who has engraved my name on the palm of His hand.

Side note: I took a break writing this update this morning to feed Milla. And I was asking her, "Who loves Milla-willa?!" It's a game we play (based on a book we read forever ago) where I raise my hand and proclaim, "Me! I do!" It always brings big smiles and now everyone in the family does it. But today when I was saying, "Me! I do!" Milla smiled big and then gasped and clamped her hands together (which means she wants to pray - she does this a lot). It was like she was saying "Jesus does!! And let's pray and tell Him we love Him too!" I know I'm putting words in her mouth, but I know one thing for sure, she knows Jesus loves her.

He will wash away my sins, let the little child come in. Yes, Jesus loves me.

Well, this is getting long as it always does! But real quick, I have to say that I've been meditating of late on how chronic and long this season of life has been and will continue to be for awhile. And how amazed and humbled and so very grateful I am for you who have continued to stand with us and for us even though the road is long. You have persevered with us. We will always remember you and the light you bring into the darkness. And may God bless you richly, for He has truly blessed us.

Much love,

Dana

Oh - and prayer requests - many are the same...our marriage, Ann Carlyle dealing with this not-so-normal life, strength, perseverance, for us never to lose sight of the cross. Specifically, pray for Elle - behavior and seizures. Pray we can get some answers...and if no answer, that we will rest in God, knowing that He knows every nook and cranny of Elle's brain and knows how many hairs are on her head and loves her more than we can imagine. Pray that we will be able to keep weaning Milla's meds and seeing her come out of this fog she has been in.