A quick post to share a story and ask you to give $1 to support this. Every little bit may help someone else not experience what we have.
Thank you!
Frazer and Dana
Tuesday, June 9, 2015
Sunday, June 7, 2015
Some Changes
Hey y’all - so we’ve had a few changes happen over the last week or so since Frazer’s update that I felt was important to let you know about.
MIlla is continuing to get weaker with her swallowing and breathing and she probably has more than 100 little seizures per hour (sometimes many more). The amazing thing is that she has been super strong in other areas…she has had times of wanting to bear weight in her legs and even taking some steps (assisted, of course, but this is something we haven’t seen in a very long time). And she has been more alert and responsive. She is quick to smile and laugh and still takes such joy in making others laugh as well. We are so thankful her mind is still ‘with us’ most of the time. Her disease causes dementia along with everything else, so everyday we have with her where she knows us and knows our love for her, is a blessing. Please continue to pray for this specifically…and praise Him for His provision in this way!
Some of the most dramatic changes, however, have been in Elle. She is seizing more and she is walking around like she is in slow-motion. It is like the wind has been sucked out of her. She even talks in slow-motion. We have seen changes in her balance and coordination as well and 1 eyelid is occasionally drooping a bit (as we see with Milla). We aren’t sure at this time what is due to seizures/meds and what is due to the degeneration in her brain. Today, actually, has been the first day in a week that I’ve seen some kind of plateau in her condition.
Ann Carlyle is doing okay but she is definitely seeing all these changes in her sisters - we are having little conversations about hard things frequently. We’ve seen a few behavioral things here and there - clinging, not feeling good, emotional. She threw a fit yesterday about not being able to sit beside Milla in the car. Please pray for her little heart and mind and pray for us as we strive to protect her when she needs it, to gently show her the reality of what is happening, to have patience with her when it’s hard to have patience.
On a positive note, everyone has slept through the night the past two nights!!! Praise God and please pray that this continues!
Please continue to pray for the help provided by insurance. We are still in this waiting place to see what they will pay for and what we need…and then a bunch of other steps have to be taken before we physically get that help in our home.
Please continue to pray for mercy for all of us. God is love and He is merciful. His character never changes. As you can imagine, this has left us reeling and we aren’t even really able to process it all. I think we both feel a bit like we are just getting through the days, doing what needs to get done, and the processing will get processed later. In other words, survive.
And so we press on with the hope of Christ in our hearts.
Thank you all for standing with us - and for us when we can’t. Much love-
Dana
Wednesday, May 27, 2015
Long Overdue Update...
It’s been a while and in some ways our world is the same, but in many ways it is ever changing, so an update seemed appropriate.
Elle – her seizures are under control. We see small ones, typically at night and a longer one will pop up from time to time (it’s been over a week since the last bigger one). As it stands today, the med combo she is on seems to be pretty effective, but that can change tomorrow as the disease progresses. As for the rest of Elle, she seems to be doing well, playing and doing typical 3 year old stuff. We see very small development things with her, but Elle is very smart and overall doing well right now. Elle eats less than a bird and she is still light as a feather, but she seems pretty healthy. But, her sleep is not good. Typically she is up 3-4 times during the night and while she generally goes back to sleep with relative ease, she is starting to get up earlier in the day.
Milla – not much good to report with “Milla Willa.” Since we last updated, she took a significant downturn at the end of April around the time she had the cough that was in our last update. At that time, she had generally weakened, could not chew the same foods and her chest cold/cough all caught us off guard. Most recently, the past weekend was another significant downturn for Milla. A noticeable weakening and unresponsiveness, increasing seizure activity and excessive drooling. After visiting with the doctor yesterday, the seizures seem to be less concerning, if they are even seizures. It’s hard to distinguish a seizure from her just “checking out” briefly (due to disease progression). Thankfully, they are not violent convulsive seizures. She is weak to the point that she cannot sit up on her own, the majority of the past few days, she struggles to get even a word out and she can barely lift cereal to her mouth. In the midst of this, she is still with us and playing hide and seek under the blanket, showing everyone her newly painted fingernails and toenails and asking to go outside to see the bubbles every chance she can.
In February, we were not thinking in terms of time frames for Milla’s life. But by early April, we were talking with a doctor on our team and, while no one will give dates or predictions, we were thinking at the time, “I don’t know if Milla will live past the end of the 2015 or maybe early 2016.” By late April and after the downturn I mentioned above, we were shockingly asking if Milla would even live to the end of summer/late September. The doctors agreed that that was not an unreasonable conclusion based on her state. And this week, we are facing the reality that Milla is dying now. I mean, we know it’s a terminal illness, but the term is short. Technically, Elle is dying too, but her term doesn’t seem short right now. The largest concern now is the Milla's drooling, which indicates the likelihood that fluid is or very soon will be getting into her lungs, leading to pneumonia. Recovery from pneumonia is not likely for her. All this to say, we are on the home stretch with Milla and the home stretch gets shorter and shorter than we expect. It is obvious but, at the same time, surprising that she has an aggressive case of Batten’s.
Ann Carlyle – She is plugging along. She asks questions and understands ultimately what is happening, but I don’t think she grasps timeframes. It is interesting to watch her because she will ask and talk and then in mid-sentence change the subject or walk away. It is her way of saying I have had enough, let’s move on. I am so grateful for the Center for Good Grief and Lauren, her counselor. Lauren and Angela (our counselor) have been awesome at helping her understand her feelings and to talk about how she feels and they have been awesome at helping me and Dana work with Ann Carlyle. It is a process and it takes a lot of work. Please pray for Ann Carlyle, especially as it is likely we will be having some tough conversations with her in the coming days.
- I had been thinking that as we approached the girls’ death and given the slow nature of the disease, I would have plenty of time to process and prepare for their dying. Our parents are still living, but I remember as my grandparents neared the end of their lives, many of us around them had time to prepare for their deaths. I have heard many people speak of death in this way or I have heard this: “at least they are no longer suffering.” These comments are made mostly about the elderly. I have learned and I am learning that this is not even close to the case when thinking about your children. Things don’t work that way when it’s your children, it is very, very different.
Final comments:
- We have been having help overnight two days each week, which has been great! I just found out ten minutes ago that we are now qualified for 12 hours of nursing help five days a week and it looks like it will be covered by insurance! Again, God provides for us in the midst of a storm that does not seem to ease up. God be praised.
- Thank you to those coming to help with the girls, especially the morning servants. They show up at 5:15am and the past two or three weeks, there has been no routine. Some days the girls are up at 4am, some days 6:30am. I appreciate each of you coming whether the girls are up or not, it helps us get rest to make it through the day. God be praised for His provisions.
- Thank you to First Evan for hosting a prayer meeting for us.
- Thank you to all who are praying. This is the single most important thing that you as people can do to help our family through this.
Elle – her seizures are under control. We see small ones, typically at night and a longer one will pop up from time to time (it’s been over a week since the last bigger one). As it stands today, the med combo she is on seems to be pretty effective, but that can change tomorrow as the disease progresses. As for the rest of Elle, she seems to be doing well, playing and doing typical 3 year old stuff. We see very small development things with her, but Elle is very smart and overall doing well right now. Elle eats less than a bird and she is still light as a feather, but she seems pretty healthy. But, her sleep is not good. Typically she is up 3-4 times during the night and while she generally goes back to sleep with relative ease, she is starting to get up earlier in the day.
Milla – not much good to report with “Milla Willa.” Since we last updated, she took a significant downturn at the end of April around the time she had the cough that was in our last update. At that time, she had generally weakened, could not chew the same foods and her chest cold/cough all caught us off guard. Most recently, the past weekend was another significant downturn for Milla. A noticeable weakening and unresponsiveness, increasing seizure activity and excessive drooling. After visiting with the doctor yesterday, the seizures seem to be less concerning, if they are even seizures. It’s hard to distinguish a seizure from her just “checking out” briefly (due to disease progression). Thankfully, they are not violent convulsive seizures. She is weak to the point that she cannot sit up on her own, the majority of the past few days, she struggles to get even a word out and she can barely lift cereal to her mouth. In the midst of this, she is still with us and playing hide and seek under the blanket, showing everyone her newly painted fingernails and toenails and asking to go outside to see the bubbles every chance she can.
In February, we were not thinking in terms of time frames for Milla’s life. But by early April, we were talking with a doctor on our team and, while no one will give dates or predictions, we were thinking at the time, “I don’t know if Milla will live past the end of the 2015 or maybe early 2016.” By late April and after the downturn I mentioned above, we were shockingly asking if Milla would even live to the end of summer/late September. The doctors agreed that that was not an unreasonable conclusion based on her state. And this week, we are facing the reality that Milla is dying now. I mean, we know it’s a terminal illness, but the term is short. Technically, Elle is dying too, but her term doesn’t seem short right now. The largest concern now is the Milla's drooling, which indicates the likelihood that fluid is or very soon will be getting into her lungs, leading to pneumonia. Recovery from pneumonia is not likely for her. All this to say, we are on the home stretch with Milla and the home stretch gets shorter and shorter than we expect. It is obvious but, at the same time, surprising that she has an aggressive case of Batten’s.
Ann Carlyle – She is plugging along. She asks questions and understands ultimately what is happening, but I don’t think she grasps timeframes. It is interesting to watch her because she will ask and talk and then in mid-sentence change the subject or walk away. It is her way of saying I have had enough, let’s move on. I am so grateful for the Center for Good Grief and Lauren, her counselor. Lauren and Angela (our counselor) have been awesome at helping her understand her feelings and to talk about how she feels and they have been awesome at helping me and Dana work with Ann Carlyle. It is a process and it takes a lot of work. Please pray for Ann Carlyle, especially as it is likely we will be having some tough conversations with her in the coming days.
I have a few observations.
- When I put each of the girls to bed, I sing a song and pray and each time, I ask for healing for our girls and then ask for God’s mercy and strength to make it through each day. Coming up on the end of May, He has provided us seven months of making it through each day. It is very hard to ignore that God is answering our request and providing mercy for Milla by giving her an aggressive case. I figure that I will not be thankful for this mercy at the moment she is not with us. But He has answered us through all this so far. He has carried us through the storm. He will provide for us in the future.
- God is preparing Milla’s room and it seems as though He just about has everything ready. I try to find peace in knowing that she will be healed and with Him, but it is not very comforting right now.
- All of this only reminds me of Elle’s journey. This does not take me to a good place.
- I recently read a person’s situation of suffering and here is the comment:
“We’re surviving. Because we have no other choice. We aren’t going to 'keep fighting.' Because that implies we have a choice to stop fighting. This is our reality.” Hay Farris 9/8/14
I love this quote and it accurately describe us. We take small bites, rarely more than one day at a time, and most often half or 1/3 day at a time.
- When I put each of the girls to bed, I sing a song and pray and each time, I ask for healing for our girls and then ask for God’s mercy and strength to make it through each day. Coming up on the end of May, He has provided us seven months of making it through each day. It is very hard to ignore that God is answering our request and providing mercy for Milla by giving her an aggressive case. I figure that I will not be thankful for this mercy at the moment she is not with us. But He has answered us through all this so far. He has carried us through the storm. He will provide for us in the future.
- God is preparing Milla’s room and it seems as though He just about has everything ready. I try to find peace in knowing that she will be healed and with Him, but it is not very comforting right now.
- All of this only reminds me of Elle’s journey. This does not take me to a good place.
- I recently read a person’s situation of suffering and here is the comment:
“We’re surviving. Because we have no other choice. We aren’t going to 'keep fighting.' Because that implies we have a choice to stop fighting. This is our reality.” Hay Farris 9/8/14
I love this quote and it accurately describe us. We take small bites, rarely more than one day at a time, and most often half or 1/3 day at a time.
- I had been thinking that as we approached the girls’ death and given the slow nature of the disease, I would have plenty of time to process and prepare for their dying. Our parents are still living, but I remember as my grandparents neared the end of their lives, many of us around them had time to prepare for their deaths. I have heard many people speak of death in this way or I have heard this: “at least they are no longer suffering.” These comments are made mostly about the elderly. I have learned and I am learning that this is not even close to the case when thinking about your children. Things don’t work that way when it’s your children, it is very, very different.
Final comments:
- We have been having help overnight two days each week, which has been great! I just found out ten minutes ago that we are now qualified for 12 hours of nursing help five days a week and it looks like it will be covered by insurance! Again, God provides for us in the midst of a storm that does not seem to ease up. God be praised.
- Thank you to those coming to help with the girls, especially the morning servants. They show up at 5:15am and the past two or three weeks, there has been no routine. Some days the girls are up at 4am, some days 6:30am. I appreciate each of you coming whether the girls are up or not, it helps us get rest to make it through the day. God be praised for His provisions.
- Thank you to First Evan for hosting a prayer meeting for us.
- Thank you to all who are praying. This is the single most important thing that you as people can do to help our family through this.
One step at a time, even if it’s only an inch or two,
Frazer
Frazer
Thursday, April 16, 2015
Home!
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.
Much love!
Dana
Here's an attempt to capture Elle's awesome post-EEG hair. :)
Wednesday, April 15, 2015
Day 2
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,
Dana
Tuesday, April 14, 2015
LeBonheur
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!!!
Dana
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| All ready to go! |
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| Never seen her so focused on coloring... |
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| Selfie! |
Sunday, April 12, 2015
Pictures!
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| Milla with Poppy (Frazer's Dad) |
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| Ann Carlyle and Elle jumped in the pool no less than 5634 times while in Florida |
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| Sisters in the surf |
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| She is a FISH. |
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| Lots and lots of jumping |
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| Building sandcastles together |
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| More smiles from Milla! |
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| Sweet hugs with Ann Carlyle and Milla |
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| Let the Easter Egg Hunt begin! |
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| Milla |
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| Milla Wild-Hair Gieselmann |
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| Selfie with Daddy and Elle |
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| Selfie with Daddy and Milla |
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| Date Night in Miami's South Beach!!! |
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| SunRISE! |
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| Dinner on the water |
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| Sunrise - Me and Elle |
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| The Pier - Khaki (Frazer's mom), Elle, Frazer and the Pelican |
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| Frazer and Ann Carlyle - can't keep them off the beach! |
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| Me and my sister, Dawn |
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| Ann Carlyle - big smiles the whole week long |
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| Milla-willa being a silly goose |
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| Love that smile!!! |
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| Look how close they got to the pelicans! |
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| Happy Birthday, Ann Carlyle!!! |
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| More Milla-smiles |
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