Thursday, April 16, 2015
We are home!
No breaking news for Elle - she didn't have any seizures while at LeBonheur and we are hopeful that is because her medicine is at the right levels.
Milla's congestion is a bit better and she was much perkier today.
Thank you all so much for your prayers, for your encouraging words, for sending God's Word to speak peace into my soul.
We are pretty exhausted tonight but thankful to be home with our girls and anxious to get back into our 'routine.'
Please continue to pray that Milla's congestion clears up with no complications.
Here's an attempt to capture Elle's awesome post-EEG hair. :)
Wednesday, April 15, 2015
Day 2 at LeBonheur...
Not much good news to report. :( No seizures, Elle's been pretty agitated and just put herself to bed for a nap. Last night, she woke up once or twice every hour, but fortunately went right back to sleep. Unfortunately, she was waking up because she was caught in her wires and uncomfortable, not due to seizure activity.
I spoke with her doctor a couple of hours ago and he was very vague about going home today or staying. I'm assuming we will be here another night - and really, I want to stay at this point. As much as I want to go home, I don't want this stay at LeBonheur to be all for naught. So, please pray for seizures! And pray this evening and night she will do what she typically does at home...the fits, the little seizures, etc.
Also, please pray for Milla. She has a cold of some sort - right now it's just severe congestion. Believe it or not, this is the first time she has gotten sick in about a year and a half. In other words, she has never been sick along with uncontrolled seizures and/or this far into her disease progression. This is very worrisome because she has an extremely weak cough and is highly susceptible to pneumonia. Also, infections can make seizures worse.
So, I'm worried.
Also, I spoke to our doctor today about how Milla is doing in general (despite her cold) and he told me that she is pretty much maxed out on her current seizure medications. Along with the increase in seizures, there is much happening with her that is her disease and, therefore, not much we can do about it.
I'm fighting a lot of fear and anxiousness right now. Lots of fear. I feel like I'm caught in crashing waves - like I keep getting pushed back down under water, beaten up, gasping for air only to be pushed back down again. Please pray that this crushing fear will be driven out. I know it is not from the Lord. I am only human, so I know fear and sorrow will be ever-present on this road, but I don't want to drown in it - I don't want it to own me.
Thank you, thank you, thank you for your prayers and help this week,
Tuesday, April 14, 2015
Just wanted to send a quick update and ask for prayers for us - Elle and I are at LeBonheur in a room and she is all hooked up to her continuous EEG (also being continuously video monitored).
She was a bucking bull getting her EEG leads placed but about halfway through, she calmed down. She’s been curious about her ‘ponytail’ of wires and her turban but she’s really been generally okay with it all. She does keep saying, “Go,” but she’s hanging in there with her toys and videos so far and right now she is napping. (Yay!!)
Please pray for seizures while we are here!! I know it feels weird to pray for seizures but that’s what we need her to do while we are here.
Also pray that she stays content with all those wires, with being confined, etc. There is a playroom we can visit that is set-up to monitor her, but other than that, we are stuck in this room. We can’t even wander around in the hallway. I remember worrying about this with Milla’s first EMU stay - we were here for 6 days - and she was so busy and boisterous back then. But she really did okay…praying that Elle is okay with all this for a few days.
Thank you, always, for praying!!!
|All ready to go!|
|Never seen her so focused on coloring...|
Sunday, April 12, 2015
|Milla with Poppy (Frazer's Dad)|
|Ann Carlyle and Elle jumped in the pool no less than 5634 times while in Florida|
|Sisters in the surf|
|She is a FISH.|
|Lots and lots of jumping|
|Building sandcastles together|
|More smiles from Milla!|
|Sweet hugs with Ann Carlyle and Milla|
|Let the Easter Egg Hunt begin!|
|Milla Wild-Hair Gieselmann|
|Selfie with Daddy and Elle|
|Selfie with Daddy and Milla|
|Date Night in Miami's South Beach!!!|
|Dinner on the water|
|Sunrise - Me and Elle|
|The Pier - Khaki (Frazer's mom), Elle, Frazer and the Pelican|
|Frazer and Ann Carlyle - can't keep them off the beach!|
|Me and my sister, Dawn|
|Ann Carlyle - big smiles the whole week long|
|Milla-willa being a silly goose|
|Love that smile!!!|
|Look how close they got to the pelicans!|
|Happy Birthday, Ann Carlyle!!!|
Thursday, April 9, 2015
So I know it’s been a while since I’ve sent an update…
Thank you, everyone, for continuing to pray for us and for asking about us and for taking care of us (meals! childcare! etc!) - even during the long radio-silence! We have an ARMY wading through the mud with us - each and every one of you are treasured.
A couple of weeks ago, as I was feeling so overwhelmed and scared, a friend sent me something that Elisabeth Elliot said to her daughter - “just do the next thing.” And this is what we do…the next thing that needs to get done. There are a lot of these things, so even though some hours are excruciatingly long, we get through each day.
I think I took a little hiatus from the updates because I was either a) enjoying time with my little family and/or b) just too exhausted to do anything once I actually had time to write. Oh - and c) waaay too many snow days. (This, of course, could actually fall under category a or b.)
So diving in...
Milla’s tube for her meds is doing great. It is so, so wonderful to not have the screaming and gnashing of teeth that used to occur twice a day, everyday. We are able to simply put all her meds through her tube and it’s done. Decrease in drama = win for the Gieselmann family.
Thank you for praying for our transition into hospice for Milla - they have been utterly amazing and helpful and supportive - truly a blessing for us.
Milla - our crazy-determined little girl - her strength and will to get up and do things is something to behold. She continues to lose strength and fatigues very quickly, but much of the time, she remains happy and social. She loves to be with people, loves to show-off for people, loves to giggle and loves to make people laugh. Our little introvert has become an extrovert! She has good days and bad days - or more accurately, good parts of the day and bad parts of the day. Over the last couple of weeks, her seizures have been on the rise again, so please pray we can keep these at bay as much as possible without her being a medicine-induced zombie.
And on to that pistol, otherwise known as Elle Gieselmann - she is now also having significant seizure activity. Over the last month, she has been having super quick little seizures a handful of times throughout the day that have continued to increase to many per day. And a couple of weeks ago, she had 5 long seizures in 1 week…2 of which we had to stop with rescue medication.
Needless to say, our hearts are being broken all over again. Again and again. This chronic grief can feel like drowning - at times like we can’t get a breath - but then God, in His mercy and love, lifts our heads and sustains us.
On a lighter note and definitely a blessing and renewal for us - we were able to take a trip during spring break! Make-A-Wish flew us all down to Fort Lauderdale for a week to enjoy Milla’s ultimate happy place…the beach! We were able to fly on a beautiful private plane (with the most wonderful pilots) and stay right on the water. Our condo there faced the ocean where we enjoyed 7:15am sunrises that came straight into the living room. We had a pool just steps from our door and a few more steps took us right onto the sand. It was absolutely perfect for our family and the girls had.a.blast. Aaaand, we had my sister and Frazer’s parents there to help us which, of course, we all loved! We are so thankful to everyone who made this all possible for us!! And thankful to God for providing this us with a chance to enjoy each other as we basked in His beautiful creation.
Last weekend we celebrated Ann Carlyle’s 6th birthday - we had friends and family join us at the awesome park just a block from our house - and then later that afternoon we had our own personal Easter egg hunt in our front yard, thanks to some sweet friends that hid eggs for us while the girls napped/rested Saturday. It was a marathon day, to be sure, but a really fun one - thankful for all the bountiful blessings God has given us.
Thank you, again, for faithfully praying for us - I am truly humbled by your love.
Please pray for a couple of pieces of equipment we are waiting on. We’ve had some significant hiccups with a company that we have to go through to get these things for Milla, but our palliative care and hospice teams have come to the rescue (as I said, they are utterly amazing). We should receive Milla’s stroller/wheelchair next week - which is much needed as she has outgrown the one we got in Nashville a couple months ago. And we are waiting to get approval on an eating chair - we are really hopeful we can get a specific brand that is very portable and can be used in things like wagons, grocery carts, etc. Please pray approval will come quickly as well as delivery.
Please pray for my mind to stay sharp. I've joked about this a lot lately, but it's becoming a real problem. I have about 18 million things in my head at any given time that I am trying to juggle/organize/figure out/process/etc. My memory is failing me quite frequently these days and I’m worried that I will forget important things concerning all 3 girls and life in general. Our lack of sleep around here is probably not helping either…which leads me to our next and ever-present prayer request…
Sleep. We have no idea how we are still functioning at all - we really don’t. It is a supernatural strength and perseverance that is happening here. But we long for sleep. Our teams are working really hard to get our insurance to approve night-time care but it’s uncertain at this time if we will get that coverage. As I understand it, it’s not a qualifying issue, it’s a coverage issue. So, I feel that it’s going to be a real battle to get this care. Please pray that God will provide for us in this way. (And/or that our girls would sleep! Both Milla and Elle are having big problems in this area.)
Please pray for Frazer, as he has to get up and go to work everyday after not getting much sleep and somehow has to push all of this crisis to the back burner in order to do his job.
Please pray for Ann Carlyle - she is doing really well in general but we saw some changes in her during the week that Elle had all her long seizures. It was a pretty hard week for all of us. Pray that she would know Jesus and His love for her.
Please pray for Milla and Elle - that God would keep them safe as their seizures increase and their coordination decreases. Pray that they would remain happy and feel safe. Pray that they would know how deep our love is for them and how deep Jesus’ love is for them.
Please pray for us as we continue to make daily decisions and long-term decisions and medical decisions. Some things are ‘little’, like scheduling swim lessons for Ann Carlyle and Elle, and others are much more complicated and painful. We also are in the process of doing some little projects around the house, one of which is converting our living room into a bedroom for Milla so that Ann Carlyle can have her own room. (Ann Carlyle currently shares a bedroom with Elle.) Pray that all this can be done quickly so that Ann Carlyle can get the rest she needs at night. Oh and another specific (and big) decision to pray for is what childcare will look like this summer and into the fall - during the daytime hours and nighttime hours.
Please pray for our hearts as we grieve things that are happening now and grieve the things to come. Our only hope is that Jesus has risen from the dead and will return one day to make all things new. Pray that we would see only Jesus as we walk this road and that our hope would remain steadfast.
I don’t really have time to follow blogs, much less a blog from someone that I don’t know. But I’ve been following one for a year or so, written by a young mom with cancer - bad cancer that keeps showing back up. She said this recently when they found more cancer in her body…”This is God’s story and I’m blessed enough to be walking it out with Him. This battle is being fought on a cellular level within my body and it’s also being fought in the heavenly realm. I don’t have to tell you in which world my hope lies.”
Much love, as always. My prayer for y’all is that your hope is also in Jesus. That you would know His love - a Love that gave His life for you and rose again - and therefore, know that sin has no power over you.
“When I said my foot is slipping, Your love, O Lord, held me up. When anxiety was great within me, Your consolation brought joy to my soul.” Psalm 94:18-19
PS - I wrote this update a couple of days ago, but of course, didn't get around to actually sending it (another great example of the need for prayers for my not-so-sharp mind!)...
Anyway, a quick update since then...Our neurologist wants us to admit Elle to LeBonheur Tuesday to monitor her for a few days. She will be in the EMU where she will be constantly monitored via EEG and video. Please pray for all of us next week as life will be disrupted yet again to make this happen. And pray for Frazer and me, as we begin this road with Elle - one we have already traveled with Milla. It has been very difficult for us.
Another prayer request that I think I touched on above, but one that has become paramount for me - please pray for our time to be well-spent and multiplied somehow. There are just not enough hours in the day to process things, talk about things, make decisions and then do all the other things we have to do all day everyday like work and take care of the girls and go to appointments, etc.
And one more thing I have to say - THANK YOU to you all that have been helping me make this still new-ish house become a true home for my family. The other day, a sweet friend hung a 2nd tree swing for us so I don't have to constantly switch out the girls (and they love swinging so much), and another sweet friend recently planted gorgeous flowers in my planters outside and this morning, an awesome crew of girls came over to help clean up and organize our attic and upstairs space!!!! I feel 80 pounds lighter having that off my shoulders. It's kind of ridiculous how much better this makes me feel! There have been so many of you that have helped in this way over the past few months and for this, I am truly and forever grateful. :)
Ok, much love again!
(I'll post some pictures soon but I have to run to PT with Milla!)