Tag Archives: HealerTech FlexrGo!

August 25, 2019

I feel like such an old lady. I missed church this morning because of my back, or more specifically, my right leg. I am in constant pain right now from what we believe is sciatica pain. I am unable to sit in an upright position for long periods of time, so unless Pastor Fred is okay with me sprawling out over several chairs, I missed today’s message. Praise Jesus I have another appointment with Dr. Sharkey tomorrow. Until then, I’m going to be flat on my back with an ice pack and a lot of prayers.

Annadelle in prone position after CPT.

Annadelle stayed home with me because she is fighting off a cold. She came home from school with a runny nose so I have been on high alert. I am constantly checking her O2 levels with a pulse oximeter, checking her temperature, loading her down with vitamin C, rubbing all kinds of oils over here, throwing together a blend in the diffuser (frankincense, lemon, and thieves), running the humidifier 24/7, putting her prone and doing some CPT, and following her around with tissues telling her to blow her nose. I have reached peak paranoid mom.

Annadelle at school (first grade)

Since going back to school, we haven’t been able to schedule her for any therapy in Fairhope. She is scheduled for a quick PT appointment tomorrow so we will know more about a future schedule after that. I sent a message to the special education director for Baldwin County schools this week asking when her PT and OT evals were going to be completed. She said she would forward my email on to someone else and that they would work on scheduling that.

I also asked about plans to make the playground accessible. This was a topic of conversation during all of the IEP meetings we had and I was assured it would be accessible for Annadelle. Her recess is toward the end of the day, so we have pulled up to get in the car rider line and noticed Annadelle away from the other kids under the awning with her wonderful para, Miss Jen (as Annadelle calls her). She has a very small tub with legos to play with. Meanwhile, other kids are on the playground or sitting at benches eating their snacks. I brought this up to Debbie, the director I emailed, because I had specifically asked that Annadelle not be isolated during recess and mentioned the “play box” idea that a few other AFM parents had recommended in the parent group.

I know this may seem petty to some readers, but schools are actually required to ensure a playground is accessible for children with special needs. In this case, it may be as easy as pouring a pad in the playground instead of having mulch, or installing a wheelchair swing, etc. I know Annadelle may be the only child needing this right now, but who is to say other students won’t need it in the future?

School is otherwise going wonderfully for Annadelle. She is understanding the homework pretty well and we are reading every night. I make her read along with me and say the words that she knows. We also practice ABC, number, and sight word flashcards quite a bit. It seems we may have finally gotten into a routine, although having the problems with my back/leg disappear would be fantastic.

I’ve been looking for a job. I’ve applied to approximately 873985738497589374587345897389475893745897348957 jobs and have yet to get a call back from one. I even applied at Target, a job well below my skillset, and got an email saying I didn’t meet their minimum criteria. Obviously, I’ve been feeling like a total failure and am extremely stressed about it.

I did manage to get accepted to Columbia Southern University. I’m trying to finish my bachelor’s, but I switched my major from Nursing to Information Technology & Cybersecurity. After being in the hospital for 5 months with Annadelle, I never want to step foot inside a medical facility again unless I have to. My heart races and I feel sweaty every time I walk into a hospital or doctor’s office, and I think it is safe to say I’m a bit traumatized from the entire experience.

When thinking about what I wanted to swap my major to, I chose IT because I have always had a knack for it and am obviously tech-savvy. Did you know I know HTML and can create databases from code in Microsoft Access? I am self-taught and did all that for fun, which apparently makes me a bit of a weirdo! And to think- my parents told me all that time in the basement on AOL wouldn’t do me a bit of good. 😉

Luckily, all of the classes are online. I have an option to do it at my own pace or enter the term classes. I believe I have 57 credits, but CSU may not accept all of those for an IT major. I’ve been applying for scholarships left and right, some with essays and some not. It’s a full time job just figuring out how to pay for the courses!

Last night I used the HealerTech FlexrGo! on Annadelle’s legs to see if there would be any response. It has been a while since I checked her left leg/foot, and I was unable to get a response on her anterior tibialis or gastrocnemius. I was so bummed because of all the people who had said she had been moving it, but it looks like nothing is there. I did manage to get a small response on her right quad. I am really praying her quad wakes up because she would have much better control in her walker with it. She is able to stand well in the walker (with braces only), but is slow to move around. She is starting to put weight on the left leg just barely. Basically, we have seen great gains from the waist up, but her legs are not making much progress at all.

This is Cami, part of our extended AFM family who was diagnosed in 2016.

I tried to encourage her yesterday by showing her videos of Cami, a little girl whose grandmother we know through the AFM parent page. Cami was diagnosed with AFM in 2016 as complete quadriplegic and has made miraculous progress over the years. She is now walking with a KAFO (no walker). Her story is so inspiring to me and I was hoping it would be for Annadelle, too.

I showed her videos of Cami at Disney World, dancing with her dad and grandmother. Annadelle loved the design on Cami’s KAFO and kept asking if we could fly out to meet her. “We can see Matthew, too!” she said.

Speaking of Matthew, he is undergoing nerve transfer surgery this week in St. Louis with Dr. Moore. Please keep our extended family (Frances, Mike, and Matthew) in your prayers!

I have actually been questioning whether or not we made the right decision to skip out on a nerve transfer. I don’t think her arms need it, as she is continually making great progress with both arms, but I think at least one leg needs some help. Chris is absolutely adamant that we do not proceed with a nerve transfer so the topic has been a source of conflict for us. Chris says that the research will say something like, “7 of 10 patients with nerve transfers showed progress”, but it won’t include any information about the other 3 patients or even progress of patients without nerve transfers. There was a series of podcasts from the TMA about nerve transfers that featured Dr. Amy Moore, the physician we consulted with about nerve transfers, but I did not listen to them. I felt like it would be a biased conversation and our experience with Dr. Moore’s office left a bad taste in my mouth. I felt like we were just a number, and our decision not to do the surgery wasn’t even a second thought from their office. I guess had we at least received a call from Dr. Moore, we may have reconsidered, but overall we just did not feel comfortable with it at the time.

I have been reading on nerve decompression lately, but don’t know enough to really talk about it. It might be an option in the future. I would have to do more research to give more information.

Anyway, I say all that because I’m obviously struggling. Emotionally. Financially. Spiritually. I’m on the struggle bus. I could really use some prayers.

I’d also like to ask that you pray for Annadelle, for complete healing for her and for us to see progress in her legs.

March 7, 2019 Answered Prayers

Have I ever told you I’m not a morning person? Well, I’m not. I’ve never been one to get up at the crack of dawn and pour myself a cup of joe with a smile on my face. Quite the contrary, actually. I hobble out of bed and to the coffee maker, my hair looking like I just stuck my finger in a light socket and my face looking like Maxine from the column in the Sunday morning papers.

Even though Annadelle’s therapy doesn’t start until 9:30am, we still have an early start. Getting her dressed is a task in itself so we have been practicing letting her put on her own shirt, socks, and shoes. She does pretty well as long as we place the peanut ball in front of her to rest her arms on. Her legs are a different story- getting pants on this child is about like trying to put a cat in water. After she’s dressed, we do her morning supplement routine, brush her hair, brush her teeth, transfer her to the chair, gather all her stuff for therapy, feed her, and then get dressed ourselves. It’s rough, y’all.

Getting used to our new routine has me a bit anxious. I find myself clenching my teeth on the ride over to Fairhope; I have to remind myself to relax as I imagine all the possibilities of how this day could go.

I calm down a bit once we get to therapy and meet Pam, one of our new therapists. Apparently we will be rotating between 4 therapists which is no problem for Annadelle. She adapts well no matter who the therapist is, although she performs better with one that doesn’t cut her any slack. If you give her an inch in therapy, she takes a mile. It means we have to stay on her to push through. She normally does so with minimal complaints.

Pam and another therapist whose name I didn’t get decided to put Annadelle in a Lite Gait trainer and let her walk a bit. This is very similar to what we did at KKI, but they don’t put her on a treadmill here. They just let her walk around the room. Chris and I have decided to build a similar contraption (much cheaper, obviously) and place it over a treadmill for her to practice at home. We believe this repetitive walking is what helped her the most at KKI and we hope it does at home, as well.

As she was walking, we noticed she was taking large steps with her right leg and pushing down on her left leg. If you recall a post of mine from just a few days ago, she wasn’t doing that at all! Chris and I looked at each other, then back at her, and at each other again. Over and over we did this until we realized we weren’t imagining it. She was taking steps with her right leg. They aren’t as large of steps as she can do with her left, but it is an obvious improvement from even a few days ago. The pushing down on her left leg was an improvement, as well. It was a small one, but an improvement nonetheless. It really is answered prayers.

Because we know the power of prayer works, we are asking our friends far and wide to continue to pray fervently for improvement in her legs. Jeremiah 29:12 says, “Then you will call upon me and come and pray to me, and I will hear you.” I am calling to Him and ask that you do, too, so that our sweet girl may walk again. The God I know can do anything without limitations and that is exactly what I am trusting in Him to do- to completely heal our baby girl and bring her the quality of life she once enjoyed.

Today we received the Healertech FlexrGo! biofeedback device we ordered a few days ago. I opened the boxes and charged each sensor which took quite a while. I wasn’t able to experiment it much due to waiting for them to charge.

Once we got home from my mom’s tonight, I saw the sensors had charged so I put them on Annadelle to test it out. Here are two screenshots from the measurements taken on her biceps.

Although I wasn’t able to explore the device more tonight, I am pretty impressed with all the data available. I am going to play with it some more over the next few days to do a full review of what the device can do and how it should help us in our decision to complete a nerve transfer.

Other than therapy this morning and playing with the FlexrGo! tonight, we haven’t done much today. I’m hoping we get more into the groove of things soon so that we can be a bit more productive during the day. We’re still unpacking and downsizing our things which is taking much longer than we anticipated, but hopefully the end result will be worth it.

Thank you so much for the continued support and love. We do ask that you send up a prayer for Annadelle, specifically that her leg strength continue to improve so that she can walk again!