Hi everyone! As you know as I navigate this disease, I am trying to stay at home as long as possible with my kids.

For caregivers to be able to move me around easily, I need glue-down plank flooring in my living room, hall, and bedroom, and a larger shower to allow caretakers to bathe me. Insurance will cover part of this cost but not all of it. I will also need to be out of the house for two days while they do the work. If there is money left after that, it will strictly go towards equipment, like a reclining shower chair, and supplements that truly do help with my energy.

Many People also asked for me to start a Go Fund me because they are already on that platform. I am not trying to double dip just trying to make things easier for sharing and donating. Please share and help me meet this new need.

I appreciate all your love and support!

 Friends, today is day 44 of me being in a care facility because I need help at home to care for me. I went in on June 4th with the impression that Medicaid would take two weeks max to get my disability and LTC application approved for care at home. While it is in the final stages I am still looking at 2-3 weeks. 

I have to be out of Encompass rehab on Friday and have two options, self pay for care, or go to an assisted living facility.

For me to go home I need the following:

1) Someone to be at my house at 7am to help me het out of bed and can hang for an hour or two to help me get through my morning routine and possibly a shower or other treatment methods I use.

2) Someone to be at my house at 7pm to help me start my bedtime routine which could also be 1-2 hours.

*** both time periods will require the use of a hoyer lift on carpet and electric sit to stand on both hard floor and carpet.

Since I need this 7 days a week it could be broken up among different people. 

If you or someone you know is interested please have them PM me their rates and experience.

Hi Everyone!

On Thursday May 30 I asked my neurologist what could be done to get in home help faster. She told me to go to the ER and tell them I couldn’t be home alone anymore. That seemed drastic at the time. Then on Monday I fell again and had a minor injury. Due to recent decline I now needed help with every transfer. And while I often had friends to help they can’t be there all the time. 

Monday we were heading to the Rockies game when I fell. The FD got me picked up and we still went to the game and I set up daycare for Isaiah and Chunk.

Tuesday I checked into the ER and they admitted me. I’m still here as they try and work with insurance and figure out if I can get enough hours of in home care to help or if it’s not possible and I have to go to a nursing home. It seems stupid to me. I can do everything but get myself in and out of bed, on and off the toilet, and in and out of the shower. I just want to be able to be with my kids and still function at the level that I can. 

It’s tough and it sucks! But I’m counting my blessings and hoping for the best!

"We cannot direct the wind, but we can adjust the sails" - Dolly Parton

“Your life does not get better by chance, it gets better by change.” – Jim Rohn

We typically start our summer out with ice cream and a bike ride. Well, DQ is 1.7 miles from our house. So today I rolled and the kids rode! My power wheel chair does 6.3 mph which keeps up with a slow bike ride. 

On another good note the hand controls are installed in the Van and as soon as I can get it picked up I’ll be able to drive 🙌🏻

The Rockies are hosting Lou Gehrigs Day on June 3 at Coors Field and I am honored to get to be the ALS Ambassador for Rocky Mountain ALS Association.

I will be sitting in section 333 and would love to see you there! 

I think I forgot to publish an update because I’m pretty sure I wrote one but it’s not on here. It’s kind of the story of my life. Couple ADHD with constant distractions and life activities taking so much longer and I often get 1/2 way through stuff and forget to finish. Anyway here’s a long overdue update.

On April 8th I got GG(Grapevine Glory) a Ram Promaster that was named after her color (Silver and Purple) and my favorite verse John 15:5. A few week Ms later I had a transfer seat installed, and hopefully soon I’ll have hand controls installed. I still haven’t driven her yet but it has been a blessing to have her to be transported in. You all helped me raise a good portion of money towards her and my dad gave me the rest which will be paid back when I’m gone and it’s sold. 

Over Spring break the kids and I went to Universal FL and Sea World. My sister Erin and friend Kim with her two boys joined us. This was a trip that was made possible by financial support from my dad, Erin, and air miles. We had a great time and made many memories which was my hope!!

It was a lot on my body though and my muscles were tired when we got back. I knew and was trying to be careful but had a fall March 31 and ended up with a partial ACL tear and quad muscle injury in my right leg. Between the two I couldn’t weight bear with a ton of pain and it made life quite difficult. This took the ability to walk with my walker and made me fully wheelchair bound 😓

On April 4th I had gone to the bathroom and was unlocking my brace from being locked out so that I could sit in my wheelchair when I got one side unlocked and was trying to get the other side when my knee gave out and I got pinned between the wheelchair and toilet. Thankfully Neema, Calli’s fiancée, was over and able to help me. 

They decided to move in that night to be able to help me more. The next month was tough as we attempted to make room for them in the house, keep the routines we had for the kids, and adjust to living together. Ultimately it was stressful for everyone and as my injury healed and I became more self sufficient again they move out May 4th. This wasn’t the plan but was best for everyone’s mental health. I do need to get caregiver support in though so I’m working on that. 

I also got a hospital bed as a loaner from the ALS Association. It’s an ugly brown metal thing that I’m pretty sure came from Fitzgerald Medical Hospital when they closed down but I’m not going to complain one bit because it has maxes getting in and out of bed so much easier!! 

I’m learning to love TV 🤣 I have never been a big TV watcher but am enjoying catching up with what a lot of the world does. I’ve taken Chunk for a few walks with the wheelchair. He is learning how to heel and stop at roads to cross without command. This is so that when I don’t have a voice we can still go for walks!

Lydia and Isaiah finish up 8th and 5th grades next week. People have been helping with rides for them which I am grateful for!!

As far as progression my right leg hasn’t had much change. I was afraid my thigh muscle wouldn’t heal at all and it did! My left leg is getting weaker and standing up from low chairs is no longer possible. My arms are getting quite the workout which unfortunately makes them progress faster. It used to be that they would feel tired and heavy at night and feel better in the morning but not so much anymore. My fingers will cramp and contort occasionally and I just take a deep breath and try to relax so the will. I wear braces on both feet at night that seem to help with keeping my toes from curling. I need to look for hand braces that will help with the same. My breathing is doing ok. Having the bi-pap at night is a blessing and I definitely notice a difference. Talking is harder on some days than others and my tongue muscles are definitely affected but still hanging in there. 

Overall I am so grateful for all the support I have had with everything from finances to showering. And especially to those that have been loving on my kids so much in so many ways!!

If you’re interested in helping with house cleaning or laundry at all until I get a caregiver in I have a Lotsa Helping Hands Account. If you register with them and then search for “Corrie’s ALS Journey” you can request to be added. 

I’ll end with saying that this is all not only me but everyone who is watching me decline. There are so many blessings among all the hard. I talk with God daily with both questions of why and asking for strength but also with praise and thanks!

I pray you all can count your blessings on a daily basis as well!

With not having to take the kids to school I spent this Valentines morning getting some extra sleep and crunching numbers. Both make my heart very happy 🥰 With the cost of the van, the cost of a swivel drivers seat, the hand control prescription, and the hand controls themselves I am looking at a little over $60,000.  

In the last week I have raised almost $3000 from friends sharing my campaign. There are so many people, just like you, with generous hearts. Please share where you may feel led, you never know who in your circle has been touched by ALS.

Yesterday the Doc successfully got 30 units of Cerebral Spinal Fluid from my lumbar puncture that was divided between two different studies for ALS and FTD which are both caused by the C9orf72 gene mutation that I have. It was not comfortable and pretty painful. But it was given out of love for the science community in hopes of helping millions of others in the future. 🥰

Happy Valentine’s Day to each and every one of you! My love to you for your prayers, thoughts, shares, and gifts!! 💞💞💞

Tomorrow I have a clinical trail day. I will start with an ultrasound guided lumbar puncture by a Dr. that does lumbar punctures all day long. We are going this route because last time they couldn’t get into the spinal fluid space due to the shape and configuration of my vertebrae being close together. Thank you volleyball and police gear for all the years of love you gave me, my knees, and my back 😍 Seriously, I am so glad I got to live a lot of life before this disease crept in. After all if it wasn’t for playing volleyball I may not have been able to recognize and articulate symptoms as early as I did. 

Anyway, hopefully this spinal tap will go better. If they get in then they will collect fluid for both my current study (Healy Playform Regimin F) and my next study (ALLFTD). I’m also doing an activity monitoring study with ALSTDI. I’m contributing to the science of this disease as much as I can!

After the spinal tap I will get a lunch break and then go into muscle testing, lung function testing for the study specifically, and some other random tests. It will end with me getting the active trial drug. I suspect I have been on the placebo… or it’s not working for me. 

So please pray that the lumbar puncture goes well and that the actual drug will slow progression for me!! 🙏🏻

Picture of me rolling into work with my ankle monitors for my activity trial 😂

I have been struggling. So much so that I planned to ask my doc to up my antidepressant dosage. I know part of it is that I am not getting good sleep with still trying to get used to my bi-pap. But I’ve been in a funk and need more support at this point. I know I am not the only one struggling in this life. I pray for so many of my friends on a daily basis!

I chose not to sleep with the bi-pap Tuesday night and got 8.5 hours of glorious sleep! I woke up Wednesday feeling better than I have in weeks. I laid in my sauna blanket and watched the TV series I’ve been watching in which a main character died. I ugly cried a cry I haven’t been able to get out in awhile. I then showered and ate lunch and just had a wonderful laid back morning!

Wednesday night we went to HS orientation for Lydia. How on earth is she growing up so fast? I couldn’t get out of the auditorium chair afterwards and was thankful for Robin and Eric that helped me. I really need to just not sit in chairs that are even remotely low at this point. 

Lydia was pretty overwhelmed after the orientation and we talked quite a bit as I tried to assure her everything is going to be ok. She jumped in the shower and I went to get my bi-pap set up for the night. And I cried. With the progression worsening reality is setting in and I probably won’t get to watch this smart kid walk at graduation. And I may not get to help her choose her college. And I, as her mother, understand her more than anyone else and I am her biggest supporter. It hurts to the depths of my soul.

I went to the kitchen to wash my bi-pap parts, attempting to dry my tears before Lydia got out of the shower. I washed them and was headed back to my bedroom when I cut the corner coming out of the kitchen wrong and caught the stove with a piece of my wheelchair just right. It shattered the whole glass front 😭 

Since I was already crying I just let it go. Lydia got out of the shower and helped me clean up the glass and Saran Wrap the rest of the oven door so it didn’t keep crumbling to the floor. And so here I sit wondering why life can be so stinking hard at times?!?

I am grateful for the sleep I got the night before and laid back morning I had! I am counting that and my talk with Lydia as my blessings. And the hard… well that will work itself out. I ordered a new door for the oven and a friend and my dad have both offered to switch it out for me 😖

Also, when I was watching my little drama show yesterday the mom in the show watches Beaches every time her boyfriend breaks up with her. I thought of the song “Wind Beneath my Wings” which then led me to Psalm 91. ADHD thinking at its best 😂

Thursday I saw my DO that does my Botox injections. We talked through my new symptoms which include psoas and glut weakness which is making it much harder for me to stand. Left Tib anterior weakness which is making it harder to lift my left foot. Right shoulder weakness. Diaphragm weakness, difficulty swallowing, difficulty with speaking some words, and TMJ muscle tightness. 

We are going to hold off on any more Botox injection to see if some of my symptoms get better as Botox can cause weakness. She thinks it’s the disease and not the Botox but we want to make sure. She prescribed an anxiety med that is also used to target TMJ tightness issues. I’m going to see how that goes for a couple weeks and will still ask to up my antidepressant if necessary. #mentalhealthacceptance

She is going to get with the lead PM&R at UC Health and see what resources might be available to help with paying for the $1500 prescription for hand controls on a wheelchair van and if there are other resources to help pay for the van. 

She is an awesome Doc that listens, processes with me and is so willing to help!!

A few other updates: I applied for an adventure grant with Team Gleason for spring break and they did not select us. That asked me to apply again for April. Due to school I wouldn’t be able to apply again until summer. But I don’t know where I’ll be in the summer. I suspect I’ll be completely wheelchair bound. I wanted to do this vacation with the kids while I am still able to be a bit mobile. So with my sister Erin staying with us in the hotel and helping with the room cost, me having enough rewards points to cover 1 of 3 tickets, and my friend Kim and her boys joining us on the adventure I felt this warranted a credit card purchase. So with great excitement and a bit of anxiety we will be headed to Universal and Sea World Orlando for Spring Break 😍

I also applied for a grant with a company that helps first responders back in December. They wrote me back in Jan and said they are set to review my application in Sept 24. Ugh!

I don’t completely understand why some financial assistance has been so hard but I am so thankful for the gifts that have been given! Everything given is still going towards the van. I am looking at inventory daily and hoping to get one soon. I am hoping for a Promaster, sprinter, or similar that has a taller roof. I tried out a Toyota Sienna which is the largest of the minivan style and I have to recline my wheelchair to get it in and out the door due to me being on the taller side. I know that everything will work out in the end!

The picture: I am growing in my faith, and learning more about friendships, love, and kindness. Thank you to all of you who continue to love me exactly where I am!

On Dec 27, after 2 cancelled deliveries, I was blessed with my Wheelchair that will meet my needs once I am wheelchair bound. Insurance covered everything except the cup and phone holders 🙌🏻 

I continue to pray for a wheelchair van. I am searching for something with around 50,000 miles or less and in the $50,000 or less price point. I could use your help reaching this goal of money raising! 

I am trying to raise the full amount so that I will not have a car payment. Currently I have a car payment and my retirement check covers my bills. Freeing up my car payment will truly help with my finances! 

Please share my link and help me meet this financial need 💞

On Oct 29 my relator Brandon and his partner Louis of The Innovative Group, donated their season ticket seats to the kids and I to watch the Broncos vs Chiefs game. It has been on my bucket list for a long time to see a Broncos game in person and this was an awesome, action filled, win for the Broncos!! 

Others have donated medical items, supplements, and time to help with decluttering and cleaning. Every type of donation is so helpful and helping make life easier I need this very difficult season. 

Thank you for being on this Journey with me!

It is with a heavy heart that I tell you the need for a wheelchair van is becoming more and more evident. I cried a lot this week as I accepted that stairs are getting very hard as my left leg weakens and walking becomes more and more difficult as my right leg continues to decline more and more. I wake every more and praise God for still being able to walk! Then I ask for him to stop the progression. To allow the supplements to work to stop the progression! 

If you ask me how I’m doing I will tell you I am taking one day at a time. I say I am hoping for the best and preparing for the worst. 

And that is where this van comes into play, preparing for the worst. My goal for the van is $50,000 💸 Every dollar adds up and I appreciate all the support I have gotten! I ask that you continue to share this campaign to help me get the van!

Hi Everyone, thank you for continuing to be here and supporting me. When I set this up I set the goal at what I believe will be the total need over the next couple years. Yes it’s a lot of money which is why I am asking for help. There are things we will need that are not covered by insurance. The most immediate need is a wheelchair van! Today they are bringing me two chairs to demo and my chair will get ordered after that. As my right leg continues to decline and my left is starting to decline this is a need that I hope to have filled by November. First I need funds and then to find the van that will work. A USED van will run between $30-50,000. Please help me cover this  which will be our most expensive cost due to my dad being able to help with house remodeling. 

This Thursday, Friday, and Sat there is a book sale to help raise funds. I will attach the flyer. 

I will have stickers and t-shirts for sale soon. 

If you have any other fundraising ideas or would like to help with fundraising I would love to hear your ideas!

The ALS Association has an equipment loaner program and today I got a little motorized chair from them!! 

This makes me uncomfortable in how people will look at me and how much it breaks my heart to need it. However, I also recognize that working through these emotions and putting them aside will open up opportunities that will bring some joy back! I can go for “walks” with the kids, take Chunk for walks, Go to stores that don’t have motor carts, AND, this thing is zippy, much faster than Home Depot’s that is slower than my snail like walking pace.

So, watch out world, I got some new wheels 😄

My dear friends,

I write this with a peaceful heart! 

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. ‭‭Matthew‬ ‭6‬:‭34‬ ‭

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians‬ ‭4‬:‭6‬ ‭

After feeling lost and not knowing what the right thing to do was for all of June and most of July I made a decision yesterday and felt great peace once I verbalized it. Dad, the kids and I went and looked at 1 house and three townhouses last Wednesday and visited an open house on Sat. We have met with a contractor and a design specialist about my house. 

We could add 120sqft to my house to give me a small bedroom with an attached accessible bathroom and remodel the kitchen for approximately $100,000. This would make my house 1320 sqft but would also include my awesome garage and craft room!

My price limit for a new house would be $400,000 max! I will be emptying my retirement account to make this happen because living in the now and making this journey as easy as possible is the more important matter at the moment. In a new house I am looking at two options:

1- a smaller house in D-12 that would be a sacrifice of space to allow the kids to walk to school and us being close to our church. Hopefully Motorized wheelchair close 😉

2- a larger house that would hopefully be in the west meadow area that will be closer to the schools but give room for Calli to possibly move  in. We looked at a house and townhouses with main level living but basements where there is additional living space that the kids could utilize and escape all the equipment that will eventually surround me. I love this idea and it’s ultimately what helped me make the decision to not remodel my house. 

I am trying to go through my uncle Jacks Estate stuff and get rid of it as well as a lot of my stuff! It’s amazing how much STUFF there is!

I’m hoping to make time for crafts soon!

I want to give a special thank you to those of you that have done monthly, or multiple donations! And you wouldn’t believe how much I got from my Amazon registry from Prime days! So many helpful items that will make this journey easier! The number of people that are praying and lifting up thoughts on a daily basis… I am amazed by your love and support and thank YOU for being a part of the body! I thank YOU for being part of the reason I am standing strong in the face of adversity. I am blessed for sure 🥰

We successfully made our annual trip to Rifle CO to celebrate my grandma’s birthday and have a mini family reunion. My sister Erin donated hotel reward points to cover our hotel cost since all family housing has stairs involved. The kids loved hanging out with cousins and all the pool time they got! 

My grandma turned 98 but she is ready to go home with the Good Lord!  It was a blessing to be able to see her and I understand her frustrations with limited mobility and not being able to do the things she used to be able to do all too well. It’s really is hard on the soul. I have learned a lot from her though and pray for a peaceful journey for her that will come quickly as she desires. 

I get to start weight bearing on my foot tomorrow, July 10th, a little at a time, and I can increase it as I can tolerate it. I hope to transition from the knee scooter to a walker quickly! Maneuvering the knee scooter around the house could be compared to having to parallel park a car every five minutes. It’s frustrating enough to deter movement a majority of the day. 

Lydia heads off to church camp tomorrow and I pray that she will see God in a big way while there! 

Then on the 25th Lydia will fly down to Texas and drive back up with Calli and her boyfriend Neema. Calli and Neema will be getting an apartment close to where Calli will be completing her last clinical rotation for her chiropractic degree.  

Right after that, we move into volleyball camp for Lydia, and then the start of school. 

Isaiah, is still a mommy’s boy and gives the best hugs! He is the only one that’s still likes to be around me 🤣 I’m going to enjoy it for now as he will hit the teenager zone soon enough and then he too will be trying to find his independence and balking at mom’s guidance.

I’m still unsure if the best course of action is to remodel my current house or buy another one that is bigger and will be easier to make wheelchair accessible. Please pray for a clear answer in this situation. 

I am also starting to look for a wheelchair van, so please pray for discernment and a good deal in this area.

I thank you all very much for your love and support, God Bless,

Corrie

Hi Everyone!

Today is 4 weeks since I broke my ankle. The help and love I have received has been phenomenal! Everything from meals, to help around the house to donations! It all adds up in a life giving way that has made this journey easier!

On Wednesday I get more x-rays of my foot and am hoping to get to be in a boot. The house is coming along nicely and we are making great progress! Calli being home and working non stop with other people coming in to help as well has made a lot of progress faster. 

We head to Rifle for our annual celebration of Grandma Whitt’s birthday 🥳 and mini family reunion for the 4th and then will be back home making all the hard decisions on moving and accessible living stuff.The break will be nice and is much needed!

Picture of Lydia and Calli. The last time Calli was home at Christmas Lydia was still shorter than Calli. Not anymore 🤣

Well, it looks like I won’t be driving much sooner than planned, or doing much for that matter, darn it!

I tripped and fell on Monday May 29th. It was a beautiful fall since we learned how to fall appropriately back in the police academy. It's been a super helpful skill these past few days 🤣 

We were painting the deck and doing touch ups on the house to prep the house for sale. It’s a low deck about 1 foot off the ground. I was on the ground painting the house next to the deck and there was a chair on the deck next to me where I wanted to paint. My body was tired as this was the third day we were working and I told myself I needed to take things slow and easy so I didn’t end up with an injury. 

I picked up the very light chair and carefully turned to walk it over to the deck table that was in the mulch area. I tripped. Time slowed as I quickly evaluated the scenario. I was beside the deck, I tried to just set the chair down and lean on it but it hit the stair and was tipping I could have held onto to it and gone to my knees on the cement. That didn’t seem like a good choice. The mulch was just beside the cement. Best option, so I supermanned it to the mulch area. I received minor scrapes and no big deal at all. 

My dad was nearby and came over to help me up. When getting up from my knees I planted my foot that doesn’t work right and pushed up off of it. I thought to myself, “self, is this a good idea?” I answered myself, “Ya, dad is here helping so it will be ok.”

When I was 1/2 way up my ankle gave out, it’s done this before and this immediately became a bad choice. My body went right and forward, dad had to let go, and my whole body rolled over my foot 😭 since I can’t move that foot there was no way to articulate it out of the way. There were sounds in my ankle that made my teeth grind. It wasn’t good and I knew it. 

I conveniently fell by the table and chairs that were in the mulch while we painted the deck. I threw a small temper tantrum and punched the ground a couple times out of pure frustration. I rolled over on my back and dad helped me pull a chair over to me. I wanted to assess the injury and wasn’t ready to expend the Enger to try and get up yet. I put my foot up on the chair to elevate it right away and had dad get me an ice pack. I put on my sunglasses, grabbed my straw hat to help shield my eyes more from the sun and laid back, still on the ground in the mulch. 

The sky was a bright blue with only a few wispy clouds in the sky. It was beautiful and I was thankful! I love the sunshine and the beauty that shows as the sun rays dance off the tree leaves and clouds. It was peaceful and I calmed myself as I appreciated it. I replayed what happened in my head. I thought about what I felt and what my instant reaction was. It went back and forth in my head; sprain and strain, or break? Or all of the above? Darn it this is not good!

I did some palpitation but all the stuff you would normally do to assess an injury like wiggle your toes and move your foot around, I can’t do. That is part of the ALS damage that has already been done. Dad had gone back to painting. Once he was at a stopping point I asked him if he was willing to clean stuff up and drive me to Urgent Care. He of course said yes. I pulled my lounge chair closer to me and pushed myself backwards up onto it. From there I was about 6 inches off the ground and we moved a step stool to one side of me and dad to the other side of me and I pushed up on my good foot and got to standing 👏🏻👏🏻👏🏻I set my right foot down to see if I needed to go to Urgent Care or maybe I was just overtired and being dramatic… nope not being overly dramatic. I couldn’t weight bear on it all. Dad went and got Lydia’s boot and her crutches from her VB injury a few months ago. We strapped on the boot for stabilization. Dad went and locked up the house and I tried to go down the two steps to my driveway on the crutches. 

I have lost a lot more strength and balance muscles than I realized. I went down the first step and started to lose my balance. I don’t want to fall forward so I just sat down in the mulch again. I laughed. Because what else can I do? I could be angry and throw a fit, sad and cry, but neither of those help me or dad in the moment. I stood up with the crutches and was on the ground I needed to be on. I climbed into Dad’s truck while he ran and got us drinks from the garage, Gatorade and tea, not the other kind of drinks, and we were off. 

I had my first frustrating experience with having ALS and providers that are not familiar with it. While everyone was caring, I had to coach and explain a lot. The x-rays were extremely painful and I had to guide the tech on how to help me. I cried partially from pain and partially from frustration. My Asperger’s shines in times like this and eye contact and communication sucks the breath out of me. I have to take deep breaths and pull up my big girl panties. I presume this will be my new normal and I have to continue to learn how to be the best person I can be and do all the social things I’ve learned. I believe God put me in jobs and places to learn those behaviors and I hope to continue to show His love through this entire process!

Sadly I have what is called a triple malleolus fracture as well as another possible fracture of the navicular bone. I am in a splint and non weight bearing for the time being. 

I would be lying if I didn’t say that I am deeply saddened by this. I was hoping to do a few things with the kids this summer while I am still partially mobile like flat water rafting, camping, and biking with adaptability biking assistance. Well shoot!! I presume I also need to learn to mourn the losses as they come, and yes I’m crying as I type that. 

I also quickly found out that due to my lack of balance and loss of strength in my left leg that crutches are very difficult! Many thanks to Jenny Risk for letting me borrow her knee scooter! Even that is tiring and hard though and I sent a hard message to my ALS team asking about getting a mobility scooter. It will open doors for me! I can walk when I am able to but sit and scoot around when I can’t. 

On Tues June 6 I will have more x-rays and see the orthopedic doctor. I have many questions for him but will hopefully be casted.

Ecclesiastes 3 says there is a time for everything and I believe that. I’m not thrilled with the timeline of these things but I continue to stand strong in my faith and trusting God in all of this. 

I also trust that Calli and my friends will help keep the kids active and do all the rafting, biking, camping, and skiing with them that I can’t. Please consider inviting my kids along with your family this summer!

My mantra the last few months has been, “take one day at a time!” and I will continue to do that and lean on God for my joy and strength!

God Bless you All!

#Stillneedapedicure

#ALSWarrior

#onedayatatime

#Godisgoodallthetime

Hi everyone!

It has been busy here as dad started tearing apart the back hall where the washer and dryer used to be due to a soft spot in the floor. He took out the old MDF that was used as sub floor(not a good choice) and put new bracing in the area that needed it. He cut off the water lines that went to the washer and dryer area and removed the connections from the wall and sealed off the drain pipe. Put in 3/4 plywood as a new subfloor and tomorrow he will put the vinyl planks back in and patch up the drywall where needed.

The littles have 4 days of school left finishing up 4th and 7th grades. The big takes her 4th and final board exam tomorrow for Chiropractic school. She is in one set of clinicals right now and hopes to do her last set of clinicals here in CO. That would put her back in CO in August so please pray for her exam and for all the logistics to work in her favor.

I think the reality of the diagnosis has set in for Isaiah and many tears have been shed the last few days. I held him on my lap last night as he sobbed with tears streaming down my own face asking God why?!? I am secure in my salvation but the thought of leaving my kids reduces this non-cryer to tears every time! Lydia is angry and we are talking a lot about letting sadness be sadness and to not let anger and bitterness take over. She wants to isolate and not let her fears and sorrow be shown and I am trying to teach her to not be like me. I trust God with the kids that He gave to me to raise for whatever time He has given them to me and I only hope that I have served Him well and loved them enough for their lifetimes!

I still believe that God is in me through the Holy Spirit and has the power to heal me! I believe he is showing me natural ways to attack this while science tries to catch up. Please continue to pray for healing! Not my will but His and that if complete healing is not His will then for 10+ years of good life with my kids, family, and friends!

This week is full of appointments; Isaiah sees the allergist, I see two more specialists, and have PT 2x this week. Driving is harder some days than other but overall it’s not pleasant most days. I’ll be researching hand controls this week or next for either my car or a wheelchair van. 

Please pray for discernment, peace in the busyness, and restful sleep at night for all of us.

Thank you for being on this journey with us, may God bless you!

Corrie

Yesterday I got information that was a hard pill to swallow, so be ready as you read on.

I have what’s called a C9-ORF-7 gene mutation. A recent study shows that people with this mutation have a 34% chance of getting Frontal Lobe Dementia, 29% get ALS and 11% get both. If a person has the gene they are 99% likely to have symptoms before the age of 80. Frontal Lobe Dementia is a fast moving dementia where people typically live less than 10 years with it. Unfortunately this gene mutation causing ALS tends to have a faster progression rate and lower life expectancy than other cases of ALS.

There is a 50% chance it is passed down to Children. So from my grandpa Dick Hightower (birth father's side) each of his 5 boys had a 50% chance of getting it, and then if a boy had it their children have a 50% chance of getting it. This means that my birth father has to have the gene and it may explain some of his mental behavior issues. This also means my children all have a 50% chance of having the gene.

I had a bit of a pity party yesterday but I am up and running again, trusting that God's plan is bigger than what science says and doing everything I can to fight it.

Unfortunately this also means I need to be prepared sooner vs later. I appreciate the donations that have been made and the purchases that have been made off of my Amazon registry. I appreciate your prayers and thoughts and ask that you continue them for both the kids and me!

So far donations have helped with:

- lawyer costs for the will and trust which were given to me at a significant discount by a friend.

- Purchased a grounding mat for my bed, yes I know it's kind of woo but it will help with pain and muscle cramping.

- Paid for the voice banking service

- I have a friend compiling a list of all my supplements and I will search the most affordable way to stay on them.

Blessing to you all!

Corrie