February 28, 2019 Rare Disease Day

After my talk with my sweet friend, Frances, yesterday I woke up feeling a little better than the day before. I suppose it is normal during this readjustment period to have good days and bad days, but I sure hope the bad days are few and far between.

When I woke up, I made breakfast for Chris and Annadelle, although Annadelle didn’t eat much. We are trying to get her into a routine of eating a whole food diet – eliminating processed foods, meat, and dairy – in the hopes of giving her body the right nutrients and minerals to help her body heal. Because there is no medicine that can help her at this point, we have been looking into optimizing her health so that her body can essentially create its own medicine.

Doing this has proven much more difficult than we thought. She is so used to eating a bunch of junk that getting her acclimated to a healthier way of eating results in her not eating much. We are hoping that the more we do this, the hungrier she will get, and she will eventually eat.

Before anyone reading jumps all over me, the food isn’t cardboard or a bunch of lettuce. Today’s breakfast was tofu scramble with sauteed potatoes and avocado. Since Annadelle wouldn’t eat it, she ended up eating a piece of toast and an orange. Although, I shouldn’t have to justify feeding my child a healthy diet, so there’s that…

Annadelle “helping” clean up the yard while Daddy works on fixing the fence

Earlier this week I contacted a hospital closer to us than Mobile about outpatient therapy. Annadelle’s pediatrician as well as some of her therapists in Mobile recommended this new hospital because they have specialized equipment that would aide her better, including hydrotherapy pools. When I called on Monday, the person who does the intakes was sick so I was forced to leave a message. I waited for her to call back, but when she didn’t I called again today.

To be honest, the person who I spoke to was not very friendly. She talked to me like I was inconveniencing her and was very short in her responses when I asked questions. She asked me if I had the physician’s order, which obviously I don’t, and told me she needed it before she could set us up an appointment. I hung up with her and contacted our pediatrician’s office and was informed they had indeed sent the order last week, but they would fax it again. I am going to call back to the hospital tomorrow to see if it’s there. I’m pretty frustrated that it is such a struggle to get her set up, but several people have told me this would be the best place for her to go with her diagnosis. We love our therapists in Mobile so it is a difficult decision to make. We will see how it goes.

After lunch, I put Annadelle in her stander for a bit and attempted to distract her by taking her over to Nana’s. We only live 2 doors apart so it wasn’t a far walk, but moving her over uneven surfaces in the stander tired me out quickly. My mom helped a lot and came up with an idea to attach a dog leash to the front bars so that we could pull her a little bit. It worked really well, especially when we went over to my cousin’s house to see his little girl, Abby. He lives a few units down from us, as well, so we walked over with the stander. We saw Abby for a few minutes until Annadelle started complaining about her foot “tingling” which is normally the first sign that she is getting uncomfortable in the stander. She ended up lasting 31 minutes before crying ensued and we took her out of it.

Our goal is to start doing more and more in the stander each day to build up her tolerance. It is our hope that the more she is able to bear weight on her legs, maybe the sooner she will be able to walk. I pray day in and day out that she will start walking to get her independence back, because I know she struggles with having to wait on us to do everything for her. It is so hard to watch a child want to play with other kids but be unable to because of bulky equipment being in the way. A relative of ours recently ordered us a walker with the bottom strap from our Amazon wish list. We are praying that once we get it it will improve her walking.

We pretty much have the same plan for tomorrow, except that I am creating her a chart to help motivate her to do therapy. It was an idea I got from Frances, like a reward system for positive reinforcement. I will share the chart once I create it on canva.com.

Please continue to pray fervently for our sweet girl, specifically that we will see improvement in her legs (quads and glutes) so that she may walk.

1 Comment

  1. Neeli,

    You and Chris are the BEST! ♥️

    We love reading your blogs 😊

    They are so genuine and raw. Thank you for trusting us all with your heart ❤️

    I won’t jump all over you, but I’d like to bounce around like Tigger (bounce, bounce, bounce) because that’s what Tigger’s like best 😂

    Have a Blessed Weekend 😇. We LOVE you guys 🤗💞

    Chris & Shannon

    Like

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