I haven’t posted anything in a very long time, since COVID first hit…

At first, it was because life was so nice. I was able to work from home for the first time in my career, while also having an amazing full time au pair quarantined at home with us. I saw my children more than I ever had before – for lunch and short play breaks, while also being able to do my job very successfully. The general public suddenly cared about the vulnerable and became germaphobes like me. And we all enjoyed being homebodies for a while – we weren’t missing anything because nothing was going on. We played outside on the weekends and went for dog walks and nature walks. It was a really special time.

And then… I wasn’t posting because things were so terrible and overwhelming I couldn’t expend the effort to post.  In March 2021, Sienna fell in the grass and broke her femur. Just playing in the grass, not even doing anything wild, not even jumping. One twist, and her right femur broke right in two….

She required surgery, which was a whole ordeal, but it went ok. The break site healed beautifully – kids with FOP are really good at growing bone – and we were so hopeful. However, several weeks in when she got permission to put weight on it, we eventually discovered that her right leg ended up fusing at the hip in a sitting position, and she also lost most mobility in her right knee. We spent a while in disbelief. Maybe she’s just afraid to move it? Maybe it will loosen up? Maybe with a little aquatherapy/ PT/ OT etc etc etc? Maybe we can access one of the experimental treatments on a compassionate use or emergency IND use basis? Nope nope and nope. 

By July we had to accept that our new life is with Sienna in a wheelchair (until a cure is found – we still retain some hope for someday…). And we took a look at everything that wasn’t working for her, and what she needed to regain some independence and access regular life again. I wish I could say we had a master plan we were following, but it was mainly watching her, brainstorming with her, and solving her/our biggest pain point at each point in time. Once we solved one, a new one would become my focus.

I hope that none of you ever end up in this position of having to accommodate a loved one needing a wheelchair overnight. But if you do, here’s a guide to what we did, how we did it, and roughly how long each thing took:

Medical equipment:

– Bed. Sienna was really struggling to get in and out of bed and to rest comfortably with one leg locked in a sitting position. And without comfortable sleep little else is possible. So we identified that she needed a semi-electric adjustable bed. People typically go through an equipment clinic for an adjustable bed, but I called for an appointment and the equipment clinics have long, long waits. And those waits were not feasible when we needed an adjustable bed immediately. Also beds don’t require customization or measurements, so we worked with a doctor we’d already seen to write a prescription. I called the bed supplier and insurance 8 billion times myself. Through sheer perseverance, I got this one done in about 2 weeks and it was covered 100% by insurance. Hurrah! Sweet, sweet dreams.

– Wheels. In addition to comfy sleep, Sienna needs to be comfortable while waking! And manual wheelchairs are not the comfiest, or the safest – as she doesn’t have the strength to navigate even a small incline on her own, and if you get stuck halfway, the chair rolls away on its own. So we started the process to get her a custom power chair. This is a LONG process consisting of meeting the gatekeeper to the equipment clinic to get a referral. This appointment took 1 month to book. Once we got past the gatekeeper we had to make an appointment with the actual equipment clinic team/ wheelchair supplier to choose the wheelchair. This appointment took another month to book. I couldn’t beat the system here because they needed to measure her and let her test different models. Once we picked her chair… they had to schedule a home visit, which took another month to book. Notice a theme yet? Then insurance approval which took TWO MORE MONTHs, and I still had to pay several hundred dollars out of pocket. Then it was finally ordered, but took a full additional 15 weeks for delivery due to supply chain delays. 12 weeks in I called the supplier and said time to order a different one if this one will never arrive, and all of a sudden we got the call to schedule the appointment. There really is something to calling and pestering people to move these projects along. She finally received it on February 14th. A joyous day! Until I realized despite getting the lighter-weight “e-Fix” power option vs. the 300 pound power chair, it still weighs a zillion pounds and I almost lost a finger getting it up into the house. Not really, but there was lots of blood. More on getting power chairs in and out of the house later. But another hooray! Given she is currently doing school remotely, we got her comfortable in the house where she spends the majority of her time!

– Our home. This is a long list which has shaken out in phases. 

And those of you who live in less populated parts of the country will probably say “gosh, why didn’t you move to a nice ADA accessible ranch house?” Trust me, I have zillow and my awesome neighbor who is a top realtor on high alert, but there are just no accessible options in our town. In the full year since I’ve been scouring the market, only three options could have possibly presented a first floor bed/bath option and they were flood damaged/ in the flood zone, still required work to make the bathroom accessible and/or definitely complete tear-downs, sooo much worse than our current house. So we decided to stay and make our house work for us. We are also not prepared to switch school districts with two kids settled in their routines and our house conveniently located to both our jobs, and did I mention we have the absolute BEST neighbors on all sides? Truly amazing people. That is rare and we are not willing to give that up! 

Want to know a fun but frustrating fact? The first house we bought in Texas just as we were getting married 15 years ago would have been absolutely perfect for our needs today – it was a cute little ranch house, fully accessible. And at about a third the cost. Sigh… Our current house is a raised ranch with all the main rooms on the upper level – convenient once you can get up into it, but it is up about 9 steps (3 exterior, 6 interior) from ground level.

Phase 1: Minor projects/ major differences: 

– Back in July, we started with what was critical for Sienna to have some independence in the house. We hired a carpenter to help her more easily move about on our main level which includes bedrooms, bathrooms, kitchen, TV room and playroom. HIs projects included:

– Speedbump removal: She was getting stuck in our hallway on these little wood doorway saddles – basically speedbumps. Some of them serve no purpose, some of them help separate different types of flooring that varied in height by ~1 inch. He removed the former, and made custom oak mini-ramps for the latter, and made an additional oak ramp to get her onto our deck. This took about half a day and got her freely rolling in the halls! 

– Door frames  & hallway: our door frames were not wide enough for her to comfortably maneuver. Imagine if you had to make a 10 point turn each time you wanted to go to your room or bathroom. So we widened her door frame to 36 inches, and her bathroom to 32 inches (the widest it could go before hitting the vanity). She had been regularly getting stuck in the bathroom unable to back out when the door bounced shut behind her. He also removed a towel rack from behind the door and helped the door open a little flatter to the wall. Additionally, she couldn’t turn around at the end of the hall where she needed to turn to get into the bathroom, so the carpenter cut about a foot out of the hall to enable a full turning radius. Alex had to give up about a foot from his closet but was happy with his new “mouse corners”. This project took about a week of active work once the new doors arrived, and was more involved, cutting into walls, moving power outlets, putting up new walls.

Then we breathed a sigh of relief that she could get herself around the house and use the bathroom reasonably ok… 

We also addressed some smaller stuff like her bedroom set up and reaching/grabbing tools. She had a very thick bedroom rug which was great when we wanted a soft landing in case of any falls. But now the thick rug was just another barrier given the height difference from the wood floor. We traded for a thin rug, and rearranged her furniture to have as little as possible, low shelves around the perimeter. We also stuck on command broom holders to hold her crutches and reaching tools.

Phase 2: Getting in and out of the house

We had to leave the house occasionally for doctor appointments, and were still carrying her and her wheelchair (separately) down the stairs to get out. Amazingly, a friend and Sienna’s former aide from kindergarten, was just pulling a stair chair out of her grandfather’s house and offered it to us for free! We just had to pay for installation and a quickie ramp to the front door. So that got Sienna up and down the stairs. But we still had to carry a wheelchair up and down. So we bought a second cheap wheelchair to keep by the front door. Pain point solved… temporarily, until we got her into the power chair! 

Phase 3: bathing

While Sienna could use the toilet and wash her hands on her own, bathing was a huge issue. I was having to lift her into and out of a chair in the bathtub, which was unsafe and very hard on my back. Just when it was getting intolerable, and I didn’t know what to do because everyone I had reached out to locally wasn’t taking on new projects, a dear friend happened to post a reco on my local moms group for someone who just renovated her bathroom! I called him, he came to brainstorm the next day, then that week I was ordering materials (picked in-stock options only) and making decisions. Two weeks later he started demolition, and two weeks after that we were done! Now Sienna can do a full turn, we have a barrier-free roll in shower, and also upgraded the room in general. She uses a rolling office chair to shower.

And now the big stuff!

This stuff is still in process and is going to take a while… But here’s what the next year has in store for us;
– Elevator – now that she has a power chair, it’s just not practical to get it up and down the stairs. I cannot physically lift it. We are underway on the elevator project with an expected completion in late June!

– Van – once we get the power chair out of the house, we need to get it places. We have started to look at wheelchair vans and/or buying a minivan and doing the conversion.

– Kitchen – I’ve always wanted to update our kitchen, so we are beginning the process to pull out some walls that are slowing Sienna down, and give it an overall update to become my dream house!

More on the big stuff to come, and I hope to share final updates… many months down the road!