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.

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One Comment

  1. Chris & Shannon Wagner

    Neeli,

    Thank you for sharing. Your transparency is so sweet to read. We love you guys and are praying for continued healing for you all 🙏😇💞🤗

    Love,
    Chris & Shannon

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