It Shouldn't Have to End Like This........for Anyone

In April of 2021 Elise almost died. There, I said it. It is not something I have really spoken about with anyone outside of a very small circle of people. This was not a first, and not likely to be a last close call occurrence, but it was different for sure. It has been a number of years since I stood on the outside wondering if this was the end of the line. Just like the other times, it was kind of a surreal experience. 

Elise was admitted to the hospital the day before. As she has experienced many times, we were not able to get a handle on her seizures and we could not get them to stop. 36 hours of trying various things ultimately resulted in her stopping breathing. At about 2:30 a.m. I was standing beside her bed and she was getting sick and having strange seizure like activity. She settled, closed her eyes and I tried for the 10th time to go back to bed. A couple minutes later some of her monitors started alarming. This also is not uncommon. There is a lot of false "alarming" when you are staying in a hospital. A couple of nurses came in, did a few things with her to try and change some positioning, but that didn't work. They called for respiratory who was in the room in about 30 seconds. She also tried a few things but that wasn't appearing to improve the situation either. 

At this point I don't think I was grasping how dire the situation was becoming. Not five minutes before I was standing next to her bed and talking with her. A moment later the decision was made that intervention was going to be necessary. They called a "Code Blue" and the room and hallway were filled with people almost immediately. A team of people arrived and immediately jumped into action trying to save her life. The hallway is filled with backup and people that are around to run for supplies when needed at a moments notice. They also send social work, a chaplain and security. The social worker and chaplain were my new babysitters and there to tend to whatever I needed. This was not the first time that I (or we) have been chatting with social work and a chaplain in the middle of the night. It does not get easier, but it is not as scary when you know what to expect. Several times they said something to me like, "You seem awful calm. Do you understand what is going on? Is there anything we can get you?" After talking with me a bit, it seemed they were able to figure out that this just wasn't my first rodeo. I understood full well what was going on and what most of the likely scenarios were that were playing out in front of me.

After they were able to determine that she was stable enough to be moved, they transferred her downstairs to the Pediatric ICU (PICU). Something occurred there that I was not prepared for. During these times of the COVID pandemic, they had established a new protocol that ALL new patients coming in to the PICU needed to be tested for COVID. While they were awaiting those results, only a small number of people were allowed in the room and no parents. All hospital staff was dressed like those that you see in the picture. This is a stock image that I pulled off the internet. But, it is indicative of what I could see in Elise's room.I wasn't really caught off guard that they would be testing for COVID, but I was more caught off guard by the fact that we had been in the hospital more than 24 hours already. No testing was needed before and nobody was wearing the "space suit" as I liked to call it. But, they were all wearing them in her room. Those were complete with their own respiratory units that ensured they were only breathing in filtered air of their own and nothing from the room they were standing in. I'll skip the rest of the hospital stay as it is less important to the overall story. Obviously, Elise was eventually discharged from the hospital and has been doing pretty well since then (knock on wood!). 

I have thought a lot about why that hospital stay was "different" in my mind. What about it has been eating at me? In the end I think that it comes down to the COVID protocol. I get why they do it and have no issue with how things were handled, don't misinterpret what I am saying. What hit me as I was sitting outside her room watching all of this transpire was how lonely this entire experience was for her. Was she awake and aware enough to know what was going on? If so, was the only thing she could see is a bunch of people in space suits zooming around the room? Was she going to die on that table without anyone from her family by her side? I was 10 feet away!

We have spent the past couple of weeks talking with various doctors about the COVID vaccine and whether it is appropriate for Elise. Like most parents, I worry about the long term effects of my kid getting the vaccine. But, I worry about the long term effects of them not getting it as well. We still have at least one more doctor to talk with, but it appears that the recommendation for her is to get the vaccine. As I wrestle with the consequences of her getting the vaccine or not, my mind instantly goes back to those images of me sitting in the PICU watching them work on her through the window while she was completely alone.

To vaccine or not to vaccine is not a political decision in my house. It is a purely medical decision that needs to be made with considerable thoughtfulness and conversation. The prognosis of medically fragile kids is so unpredictable. One thing I do know is that I do NOT want her to die on a table without her family around her if it can be avoided. Life should not have to end like that for Elise. Really, life shouldn't have to end like that for anyone.

Will She Outgrow These Seizures?

As I mentioned in my last blog post, Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure.

Seizure disorders can be so varied among people and their treatment can range from simple to extremely complex. Over the years I can't tell you the number of people that have said something like, "my sister had a seizure once when she was 8 years old. It scared my parents to death. But she outgrew them and never had them again." That is a common story and the way many seizure journey's end. But, that is not the case for Elise.

A Typical EEG

The image on the left is what a typical EEG (electroencephalogram) reading looks like for the majority of people in the world. EEG's are done by putting electrodes onto various locations of a person's scalp. I won't get into how to read it too much. But, most importantly, you can see how the brain waves are very similar to each other across each wave pattern. Doctors read EEG's to determine if there is seizure (or abnormal brain) activity, what is occurring before and when something abnormal happens, and where in the brain this abnormal activity is happening. A lot can be determined in a relatively short reading.

A Textbook LGS EEG

During Elise's last hospital stay, the neurologist told us, "Elise's EEG is a textbook example of a Lennox-Gastaut patient." That has never happened to us before. Elise's struggles rarely ever fall within the realm of what doctors see in textbooks. Unfortunately, I don't have a screen shot of Elise's last EEG. But, I did find a "textbook example" on Google. You can see it on the right. Really, need I say more? Isn't it fairly self explanatory?

This image on the right is Elise's brain 24 hours per day 365 days per year. She is in a constant state of over activity in every area of her brain. "Most" seizures are localized to a specific area of a patient's brain. Elise's seizures are in all quadrants of her brain and are crossing over quadrants constantly. In periods of rest her brain activity looks like the EEG directly above this picture.

Seizure activity of an LGS patient

During an actual seizure, which happens several times per day, her EEG reading looks a bit more like the reading on the left. She can go through several minute periods where that increased activity in the middle of the image is most predominant. Then, after a moment of recovery (usually), her brain activity will resume back to the "textbook LGS patient" reading.

When Elise's seizure journey started about 11 years ago, we were told to expose her to as much as possible and treat her as we would any typical child. When a child develops seizures, there is always the possibility that the brain will "re-wire" itself and make new pathways to deal with any injury or insufficient activity. As a child gets older, the likelihood of that rewiring taking place gets less and less. The female brain is believed to not be fully developed until age 21 (it is older for males). However, when there is significant damage done to the brain, cognitive function certainly does not continue to improve to age 21 and beyond.

After so many years of trying SO many things, I am trying to come to terms with what the future holds for her. It has been made very clear in this past year that we will likely see more regression of skills and progression of the seizure disorder. Each hospitalization is a set back and an establishment of a "new normal" in her life and ours. There has always been a cause and effect relationship to her seizure activity. But, this past year has taught us that this will not always be the case in the future. Sometimes she will just struggle because she has LGS and the seizures dictate so much of her life.

Summer time generally brings a bit of better health for Elise. We are never quite sure what to attribute that to, but we'll take it. Like most of us, she doesn't really enjoy the Kansas heat in the summer. But, she enjoys floating in the pool on hot summer days and long naps when inside. In the grand scheme of things, those are not all bad attributes to have.

A Visit from the Notification Officer?

I grew up in a military town. I like to say I was an Army brat by default. My dad retired less than a year after I was born. My siblings moved all over as part of his Army career, but I did not. I was born on Fort Riley, KS and never left the area until after I was 18. Interestingly, I live less than 15 miles from where I was born again today.

My childhood was filled with many of the normal military things. I had lots of friends over the years that moved in when their parent was stationed at Fort Riley and then moved away within a couple of years to move to their next duty station. While my dad no longer reported to work on post, I understood many of the aspects of military life. I can recall my dad telling me at some point that you never wanted to have someone in a dress uniform show up unannounced when the soldier was deployed. That was never a good thing. That is exactly what happened in my house in 1991, but it was not at all what I thought.

My brother was in the United States Marines and was deployed to Iraq during the beginning stages of the Gulf War. There was 24 hour media coverage of the war, bombing of buildings, and coverage of the killing of many people. He was in the Force Recognizance unit. Generally this meant that we didn't talk much. When he did call home it was usually to talk with one of my parents and it was also relatively short. He was back in the US at his base for a short amount of time and was talking with my mom on the phone. During that call he received some kind of notification that he had to hang up immediately and get moving. Whatever was said didn't set well with my mom. She had sent her own husband off to deployment many times. She was a veteran. But, however this went down just didn't set so well with her. She was uneasy. The non-stop media coverage of the war effort, and my dad's obsession with watching ALL of it, did not help either. It had been several weeks since we had heard from him. Then one day the doorbell rang.

I believe it was a Sunday afternoon. I looked out through the window in the doorway and there were two soldiers in dress uniform and a black car at the end of the driveway. I couldn't even begin to comprehend what was in front of me. All I could think to say was "Dad! There are soldiers in uniform at the door!" He moved quicker than I can recall seeing him move and opened the door himself. I sat down on the couch and began to cry. I heard about this stuff and saw it in movies. But, I never thought it would be something I would have to handle myself. Fortunately, I did not.

Those "soldiers" at the door were actually a couple of kids from the local ROTC program and they were out selling door to door to support their program. I did not know them, but I suspect they were two high school kids and the guy in uniform at the car at the end of the driveway was simply their ride to sell whatever they were selling. My dad didn't really like door to door sales. But I remember him standing there talking with those guys for several minutes. I think he even bought whatever they were selling. But, I do remember him saying when they were finished, "maybe you guys shouldn't wear your dress uniforms when you are going door to door during a time of war." I couldn't agree more! He knew disaster was averted for our family, but there were also no guarantees for the future.

I have thought about that day hundreds of times over the years. As the war has continued on in the middle east, I have thought about the thousands of families that received a visit from the "notification officer". Always while just going on about their lives doing what they can to support their service member from afar. Just like that an entire branch of a family tree has been altered. I have thought many times about those moms and dads and husbands and wives that have received that devastating news. I had one small glimpse at the fear of that visit, but truly cannot comprehend the way my family would have been impacted if we got a visit from someone else.

Fortunately, in my family, we have several veterans that we honor on Veteran's Day. Also, just as fortunately, we do not have anyone in my immediate family that never made it home from a deployment.

"I am an American fighting in the forces which guard my country and our way of life. I am prepared to give my life in their defense." -- Article One of the Code of Conduct for members of the armed forces of the United States.

It is one thing to say the statement above. It is entirely different to have lived it and have paid the ultimate sacrifice. My prayers are with those families, and brothers and sisters in arms, that have been impacted by the the death of a service member. Peace to you all this Memorial Day.

Our Journey with CBD

Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure. As I always say, "it is what it is."

Five or six years ago Elise was having a really rough spell with seizures. Honestly, there have been so many rough spells I couldn't really tell you how long ago it was. But I do know that I called my brother one afternoon and said, "What are you doing this weekend? You want to go with me to Colorado?" Prior to the CBD craze, there was a company in Colorado that was one of the first to make CBD oil started by the Stanley brothers. They were approached by a desperate mom who thought that marijuana could have a positive impact on her daughter's quality of life. The little girl's name was Charlotte Figi and she and her family are thought to be the catalyst that started the movement for CBD treatment of seizures. Their family experienced good success with the CBD oil made by the Stanley brothers which they eventually named "Charlotte's Web". You can still buy this today. Sadly, Charlotte died in April of 2020 from what was suspected to be COVID-19.

When I made that call to my brother 5-6 years ago he was instantly skeptical. In his line of work there were A LOT of people being arrested in Kansas for bringing marijuana back to Kansas. But I didn't want marijuana, I wanted Charlotte's Web! At that time, and still a great deal today, there is quite a bit of gray area in the law about CBD. At that time, you could be arrested for bringing it across state lines, and CBD was not available in many stores like it is now. In the end we decided it was too risky for our family. I was not willing to risk being arrested and them taking Elise away from our family. You can look it up. There are a lot of instances of that sort of thing in the last 10 years. I am thankful that much of this has changed.

Fast forward to about three years ago and the FDA approved a CBD oil named "Epidiolex". With that FDA approval came regulation of the quality of this product and also insurance assistance! I was on the phone within days of it becoming legal trying to get Elise an appointment. When we met with our neurologist he told us that getting Epidiolex was VERY difficult and getting approved for it was nearly impossible. The only way we were going to get approved was if Elise was deemed to have Lennox-Gastaut syndrome. That was not something we had ever heard of before. "There is no consensus in the medical literature on the exact definition of Lennox-Gastaut syndrome. Generally, three findings are necessary for the diagnosis: multiple generalized seizure types; a slow spike-and-wave pattern (less than 2.5 Hz) on EEG; and cognitive dysfunction." (source raredisease.org)

We knew that Elise had multiple generalized seizure types. She was experiencing those every day. We also knew she had cognitive dysfunction. That was pretty obvious to all that encountered her. A simple EEG scan showed without a doubt that she had a slow spike-and-wave pattern. And like that, we were approved for the FDA approved drug Epidiolex! All of my prayers had been answered and a "cure" was just around the corner. Well, if you have followed our family at all over the last many years you know that was not the case.

Just like with all new anti-epileptic drugs, the CBD was great right away! In only a matter of days we started to see improvement in her seizures. There was some tweaking of the amount we gave her and some adjustments to other medications and she was doing pretty well. The seizures were not gone, but they were far improved. It was more hope than I could recall in the few years prior. Then, everybody's friend puberty came into our lives. Let's just say that puberty and epilepsy don't play nicely with each other. From what I understand of girls, this change in hormones is a doozy for the average female teenager. For someone with epilepsy it is horrible. Maybe I'll write more about that in the future.

I have received more questions in the past month about some of the conversations going on in the state house of Kansas where they have been debating medical marijuana and its approval. Everyone wants to know my opinion. As I have been telling all that have asked me, I really don't know what is going on. Once Elise was able to get on the FDA approved drug, I knew I personally didn't have to fight that fight any longer. However, I do know that it is a fight that deserves to be had. But, I don't have the capacity to do it right now. I'll leave it to those that are most affected. 

Like all anti-epileptic drugs, Epidiolex has been found to be successful at eliminating seizures in about 33% of patients, found to reduce seizures in 33% of patience and have little to no impact on seizures in the remaining 33% of patients. We are in the "found to reduce seizures" group. It has not been a miracle drug, it certainly did not bring a cure with it, but it has brought on some improvement. There are currently more "good" seizure days than there are "bad" seizure days. But, there are rarely ever seizure free days.

In the end, CBD for Elise is one more tool to try and treat a debilitating condition. CBD has little known side effects which makes its use very attractive to many. The one thing I like about this FDA approved version is that it is regulated. All the other CBD products that we can find in the general public are not regulated. It is the wild west in CBD land. Manufactures can claim whatever they would like to claim and do not have to provide evidence. The products that you find could have trace amounts or no true CBD at all. To me that leads to way too much false hope and disappointment. I don't know if CBD is right for everyone, but I do know what it has done for my daughter. I'm always glad to talk about it to anyone that asks.

It's Always the Little Things

 

My mom passed away a little more than 10 years ago. Time flies for sure. I think about her a lot. There aren't many days where something doesn't trigger a memory or a thought about a time from my childhood. I guess that is a blessing of getting older.

During most of my childhood my mom worked for the Kansas Social and Rehabilitation Services (SRS) now known in our state as the Department of Children and Families. She was an 8-5 worker. Often she was leaving the house a little before me in the morning and she got home after I did at the end of the school day. If she had to take me to an afternoon appointment, she might take me back to her office while she worked the final hour or 2 of her day after the appointment. She would generally set me up in an empty cubicle to work on homework, draw/color or keep myself occupied in some way. One of those days she set me up in the break room where I could spend the last hour or so of the day. 

While sitting in that room, the vending machines caught my eye. We had junk food around our house, but neither of my parents were soda/pop drinkers. We just didn't have it around. I had seen the commercials for all of the usual brand names, but there was one drink in there that I was not familiar with. Always curious, I asked if I could try a bottle of Squirt. To my surprise, I loved it! Who knew that a "grapefruit soda" would actually be great!

When I moved up to junior high school, the school was located only a little over a block away from my mom's office. On days when I didn't have practice (which was rare), I would generally spend the last hour of the day at her office. It was not a daily occurrence, but I got to enjoy Squirt more and more over the years. It has become increasingly hard to find over the years, and I quit drinking soda about seven years ago myself. But, every now and then I have something.

Yesterday I stopped in the convenience store on my way to pick up pizza for dinner. Thinking about my mom throughout the day, I just had a hankering for a Squirt! They only had two left, but I was glad there was one in the cooler. I thought about my mom as I drank it. I thought about her making space for me in the midst of her busy work days. I thought about her parading me around her office each time I came in so she could "introduce" me for the 100th time to her coworkers individually. Each time telling them that I was her "baby". Even as a 20+ year old college kid that was 6+ inches taller than she was. She was always proud.

It is a random childhood memory I know. There is nothing of significance attached to a single event involving Squirt soda. But, each time I see it I think of my mom. Each time I drink it I think of her office and those days of my childhood. Mother's Day is not the same when your mom is no longer with you. There are lots of people that come through to fill in the gaps, but there will always be a space that my momma held. 

Happy Mother's Day to my mom in heaven, and to my many friends that are mothers. Remember it is the little things that your kids will remember 30 years from now.

The Daily Med Routine

The daily med routine.

It takes a ton of medicine to get Elise through her daily life. Sixteen meds per day actually (a couple aren't pictured). And, several of those are twice per day!

I can remember a time that we brought Elise home on one of our breaks during cancer treatment and she was taking 14 meds. Life was completely out of control and we were just trying to keep the wheels from falling off. We were glad to take her home, no matter how many meds we had to give her. That was a crazy time. Fast forward about 10 years and I told one of Elise's helpers, "It's not like it used to be. There was a time she was taking 14 medicines per day!" 

It is amazing how life does something like this to you and you never even realize it. There was a time when she was down to 2-3 medicines per day right after cancer treatment, but that didn't last too long. Gradually we have added more medicine to treat various aspects of her life. Gradually...... until we were back up to 14 (or more). Honestly, we have been in the range of 14 meds for so long I didn't even realize it. As we slowly got acclimated, that out of control feeling went away (or at least diminished) and we began to normalize our life full of so many medications.

It is for this reason that surgical procedures and changes to her daily routine are so difficult for her and scary for us. It takes consistency, a pretty rigid schedule, some luck, and lots of prayers to keep her as healthy as she is. Even a single dose of Tylenol or Ibuprofen messes with that balance. We have to be strategic about how they are used. When Elise recently had hip surgery we ended up with 3 (I think) additional medicines to deal with pain and muscle spasms. The balance was acceptable for a week, but eventually spiraled out of control and landed her in the hospital for more than a month. 

Needless to say, we aren't too eager to jump into conversations about additional surgeries. Several specialists would like to get her on the surgical books to deal with this issue or that issue. But, as we have learned over the years, what the doctors want, and what Elise's system will tolerate, are not often the same thing. She does everything in her own way and in her own time. 

Over the years we've had a love hate relationship with the pharmacy. The Children's Mercy Hospital pharmacy has always been great to us. But, we can't travel 2 hours (one way) to go to the pharmacy. I generally go to the pharmacy 4-6 times per month, as long as everything goes right. When we lived in Kansas City, Kelly developed a great relationship with Jason, our pharmacist at Walgreen's near our house. She talked with him regularly, he always gave sound advice, and he went out of his way to ensure that he could get whatever Elise needed when she needed it. Most people miss friends, family, their old house, etc. whenever they move to a new city. We missed our pharmacy! Don't worry, friends and family were a close second. :-)

It took a number of years for us to finally develop a relationship with the pharmacy here in Manhattan. We have been loyal and have stuck with Walgreen's all these years. Sometimes they make me want to tear my hair out, what little I have left, but overall they have been good to us. Using a national pharmacy has bailed us out more than once over the years when we ran into medicine trouble in another city, and even another state, multiple times. It helps that our trusted pharmacist also lives in our neighborhood too.

Taking this many medications is not a badge of honor. It is certainly not something we enjoy, or that Elise enjoys either I am sure. But, they are a necessity in her life. I could probably go on railing on health insurance, drug costs, over medication, etc., but you can read enough of that elsewhere. The system is confusing, time consuming, exhausting, but necessary in our case. Most days I choose to be thankful for the medications that Elise gets and all that they do to help her be the best version of who she is. Modern medicine is truly amazing.

Another Step in the Mobility Direction

When we bought our house about 3 years ago, one of the aspects I was most looking forward to improving was accessibility in our lives. As Elise grows, her mobility is changing and her needs are more physically challenging for her parents. Lifting and carrying a 30 pound child is much different than moving and lifting a 100 pound teenager. As she gets older and heavier, so do I! I'm not as strong as I used to be and my back has not held up well to years of lifting. I can work on getting stronger, but Elise is not going to get smaller. So, the challenges of both of us aging will always be there. 

Abby showing off

When we moved into our house, we had a stair lift installed immediately. We live in a ranch style house with a walk out basement. We are also fortunate to have an in-ground pool in the backyard. The only way to get to the pool is to go down the stairs. So, to ensure that Elise would have full use of the pool, we installed the lift right away. That lift has been a blessing as we haul her up and down the stairs. Several months later we had our hall bathroom modified to be handicapped accessible with a roll in shower and we also added a ramp to be able to easily get into the front door of our house. For the past couple of years we have been in a bit of a holding pattern as we have tried to determine what is next, and also tried to figure out how to pay for what we know we need.

Getting a lift for our house has been on our list for a little while. Elise is not growing a ton in height, but she has grown some and the leverage that my wife and our helpers used to have when she was smaller has all but gone away. For many months I worked with our insurance companies, our case managers, various therapy providers and several equipment companies to work through the process of buying a lift for our house. Seems like an easy process right? Let me assure you that NOTHING about this entire process was easy.

Laying it out before mounting

Whenever a person is in need of medical equipment, the first step you are required to take is to see what insurance will cover. The way our health system is set up in America, this is our reality in everything related to our health. Even for those that are healthy. We are fortunate to have two health insurances for Elise. We have our primary insurance that we purchase through Kelly's work (how is that cheaper than the insurance through my work that has thousands of employees that are part of the plan?) and Elise has a secondary insurance through Kansas Medicaid. Being totally disabled, she will always qualify for Medicaid. Having those two insurances is a blessing whenever she has a significant medical problem. When we need equipment or supplies however, let's just say it's complicated.

Our primary insurance, Blue Cross Blue Shield of Kansas, does not cover any of the cost of a lift or generally any medical equipment. None of the equipment as seen as a necessity. Kansas Medicaid will pay for equipment, but it is generally the least expensive option. I completely understand that from a purely business standpoint. But, I'm not running a business in my family. We are actually in a "real life" situation. Often times the "least expensive option" is of lesser quality, less able to be modified to work in various situations, etc. As an example of this, when we had a ramp installed in the front of our house, they would not replace the entire decking to match. If we move, we are expected to take the ramp with us to our new house. It is not their problem if the door heights are not the same on the front of the house. They paid for that ramp, we are to take it with us if we leave. Makes sense right? But, I digress.

I widened two doorways

Regarding the lift, the least expensive option was a stand alone portable lift. This type of lift would be another piece of furniture for our house that would move from room to room with Elise. We were insistent that we did not want this option and that it would not work in our house. To prove our point, we borrowed a lift from an equipment exchange company. We pushed the lift up to Elise's bed and the base of the lift was too tall to fit under Elise's bed. So, we borrowed some risers to put Elise's bed on to get it up to a usable height for the lift. Once that was done, the top of her mattress was about 4 feet 6 inches off of the floor. So, in order for a caregiver to change Elise, dress her, etc. they (including me) would need to stand on something to get them higher up. Yet another piece of equipment that would be needed. We used Abby as our test subject with the lift, she actually likes this part of having a sister with such odd needs. We secured Abby in the lift and moved her to the door to get out of the bedroom. The lift had to be forced through the door and then it was too long to turn and actually go down the hallway. So, it was wedged in the doorway and stuck. We got all of this on video. We shared this with the insurance company as justification for buying a ceiling mounted lift. The request was denied immediately.

Fortunately, the medical supply company that we ended up using knew that Medicaid generally pays X amount of money for a lift. He told me it was generally enough to cover the cost of a portable lift, in the range of $7,500. He got Medicaid to commit to paying their portion and we had to determine how to cover the rest if we wanted a ceiling mounted lift. I spent the next two months applying for funds from various charities that support these type of products and working with various people to provide justification and evidence of our need. It was kind of exhausting actually!

Fortunately Elise was gone a bit

In the end, we were left with footing the bill on our own or scrapping the idea. Prior to Elise having surgery in October, we had plans in place to move forward. Surgery, followed by a lengthy hospital stay for complications put us a little more behind than I would have liked. But, long story short, we finished getting the lift installed the beginning of March! While we never like hospital stays, the timing was perfect. Elise was out of the house for a few days and it made installation go really smoothly for those 3 days.

Prior to installing the lift, I decided to widen a couple of doorways anyway. We did not need this for the lift, but it has sure made thing easier. I widened her room doorway to 36" and widened the hallway bathroom doorway to 30 inches. It is much easier to get her in and out of the needed areas through those wider doorways. I will have replacing the trim on my to do list. I'll get to that soon. It also has me considering replacing a couple of other doors in the hallway as well. That is how projects work right?

Another project

Once the lift was installed, I realized that I would have another project on my hands. I have been a bit perplexed about how best to solve it so I still haven't touched it. As you can see from the picture on the right, the lift track goes through the header in the doorway into our hall bathroom and also into Elise's bedroom. I'm probably not going to do anything about Elise's bedroom. But, the hall bathroom is what all of our guest use when they come to our house. So, for "privacy reasons", I feel like I need to put something in that hole. Obviously it needs to be removable so that the lift can get through there when needed.

The rod is in the way

One more project that came out of this installation was the shower curtain rod. It never occurred to me that it would be a problem. As you see from the picture on the left, the lift is stopped just outside of the show. It can't get past the rod. When I reached out to the company we bought it from they said, "people usually just take them down, push the lift into the shower and then put it back up." Yeah, that is a pretty dumb solution. We're not going to do that every time that Elise needs a shower.

Luckily I found a "swing away rod" that is sold for just this purpose. It is supposed to arrive over the weekend. Hopefully I'll be able to say on Sunday that it worked fantastically!

The road to accessibility is bumpy, hard to navigate and full of challenges. Pushing through those challenges, while very exhausting, can be so worth it. There are two main reasons that I think people give up on trying to make their lives more accessible. The first is money. All total, the price of this lift was equivalent to a mid-sized new car. Depending on the situation that a family is in, it can also be opportunity cost. There are many more families with an older parent that need a lift like this than there are families like mine using it for a child. Is it worth the money for only a year or two of usage? That is a difficult decision to make. The second reason I think people give up is time. Making these projects comes to fruition is MONTHS in the making. Hundreds of emails, phone calls, appointments, etc. It is so time consuming! It is hard to devote the kind of time needed when both parents have careers, medical challenges continue on a daily basis, and just life is happening around you. The amount of time that a family like mine puts into medical stuff is something that we could never fully explain. Only those that are drowning in appointments and commitments seem to truly grasp it. If that is not you, consider it a blessing. I wouldn't wish those challenges on anyone.

Honestly, I didn't think we would really have an immediate need for the lift. I viewed this more as a long term project. In my mind, it would get some use now and be really handy down the road. But, after about 2 uses I am convinced we made the right choice and it is a daily part of our routine now! Seeing this is worth the months long journey to get here.