January 22, 2019 Rolling Along

I have been all up in my feelings the last few days.

I am trying my hardest to remain steadfast in my faith and believe that my baby girl will heal completely, but I’m human. I can’t help but ask questions when I am unsure of the answer. I keep reminding myself that what we ask for in prayer, God will give us.

I wish I could say Annadelle’s lack of movement was my only worry, but I’ve also been stressing about our hospital stay. We have had some problems with miscommunication between the nursing staff which caused me to become very irritated. Pile that on top of the stress of having to find lodging and I’m a big mess. Thursday we will have to leave the Children’s House and find a hotel to stay in so Chris is going to make reservations at the Holiday Inn Express assuming they have a room available. It is one of the few hotels nearby that offers a free shuttle to KKI.

Over the weekend, we joined our roommates for a trip out to the movies and dinner at Bonefish Grill. We took the kids to see Aquaman at a theater a short drive away that offered reclining seats and trays. It was so nice to sit back and relax for a bit and focus on something other than hospital life. Bonefish was nice, too, because we were able to just enjoy a nice dinner with our new AFM family. We are so glad we met Frances, Mike, Matthew, Laura, and Francisco. We are going to make sure and send them some snail mail when we get home to a Orange Beach.

I posted on Annadelle’s Facebook page that she had not done well in therapy over the weekend. She had a great day on Friday and actually took some steps on her own with her left leg after Miss Courtney gave her some AFO’s. I took a video of her walking and have watched it approximately 835873847576847878734755 times since then. But for some reason she seems to have lost motivation after Friday. I am wondering if it is because Chris and I both attend therapy with her. She seems to work better when I am not in the room so I am debating on whether or not to attend sessions with her anymore. This is a hard decision because if I don’t attend the sessions, I won’t be able to know what to do with her when we get home as far as home-based therapy goes. I am praying that we see a quick improvement in her mood so that she can progress with her walking and standing.

Today we also spoke with Dr. Bellzburg, a neurosurgeon from Johns Hopkins Hospital, regarding nerve transfer surgery for Annadelle. We had already contacted Dr. Amy Moore in St. Louis about the surgery, but one of the nurse practitioners at JHH told me about Dr. Bellzburg. She said he had experience with transfers in the lower extremities, but he did not seem very confident about it to me. He suggested we get 2-3 other opinions which made me feel like he was telling us to go elsewhere, that he wasn’t interested in the surgery. We aren’t even sure if nerve transfer is the route we want to take, but we at least wanted to talk about the pros and cons. I think we were both left feeling like we didn’t get much information.

Sometime this week Dr. Pardo is going to come and speak to us about Annadelle’s diagnosis. He is a pediatric neurologist who has seen many AFM cases and works out of Johns Hopkins. He received her imaging from her two MRIs today so I am very interested to see what he says about her lesions.

I don’t have very much else to update about. It seems like every day is the same here, just rolling along. I am really just feeling like I need a shoulder to cry on for some reason. Not really to vent about anything, but maybe just a hug.

Thank you to everyone for sharing our story and especially our GoFundMe account. Being in Baltimore is a lot more expensive than we anticipated. The link to our GFM is below.

https://www.gofundme.com/fund-for-princess-annadelle&rcid=r01-154821625071-55b84b710d414b0b&pc=ot_co_campmgmt_w

Also thank you for all of the prayers and support. Please continue to pray fervently for our sweet girl so that she may walk again. I will update more in a few days.

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One Comment

  1. Chris & Shannon Wagner

    Good Morning My Beautiful Sister 🤗.

    You guys are exactly where GOD wants you at the moment.

    As we face these large trials in life, I’m reminded of my own trial that never seemed to end, but it did and yours will too.

    Best advice that I can give you is what was given to me and that’s why we share the GOOD NEWS with one another because JESUS conquerered it ALL, even death!

    Be STILL and KNOW that HE is GOD 😇🤗💕

    GOD will work all things together for GOOD for those who LOVE HIM 😇🤗💕

    YOU LOVE HIM NEELI 💕

    That my dear friend is your GOD given FAITH upon which YOU stand!

    REST in HIM 😇. HE’s got a PERFECT record and that’s not going to change any time soon!

    You’ve got this girl! Here’s a song that gave me a breakthrough the other day 🎶

    https://youtu.be/hl5GcRrJLyw

    Enjoy 😊

    Love,

    Chris & Shannon

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