Chiari Malformation. Words I've come to know too well and honestly....I kinda hate them.
Four months ago I didn't even know the words or that something like this even existed. It's crazy how much life can change in such a short amount of time.
This June will mark two years since the first symptoms appeared in our then 11yo daughter. Felicity is our second baby and was longed for and prayed for *often* for years before the LORD let us hold her. A miracle to us since we were thinking we weren't going to be blessed with any more babies. And now here we are expecting #10 to arrive in a few months. 😀
Two years ago we were on vacation and Felicity figured out how to swim underwater like a pro and pretty much became a mermaid. The last night of vacation she complained of an ear ache and I began treating her for that with the herbs and essential oils that I had with me. It cleared right up! A few weeks later and she complained of the same symptoms so we took her to our chiropractor. He couldn't see anything wrong with her ears, but did what he could. A couple of months went by and her ears started to hurt again, but it was different. We saw our family doctor along with our chiropractor, and we were also referred to an ENT. Nothing was ever found.
Since seeing our chiropractor was helping, our family doctor agreed to just keep doing that, but if anything changed we would need to take some more steps. Our chiropractor was fully on board, so that was the plan. January/February of this year had us realizing her symptoms had changed a bit and were a little worse, so we went back to our family doctor and he first had us do blood work, specifically looking for lymphoma as her lymph nodes were giving her trouble as well (swollen and being sluggish). That came back 100% clear for which we were so thankful!
The next step was to have an MRI done. I was terrified she was going to handle it really badly, but she did way better than I did! And I was in the waiting room!! Since I'm pregnant I wasn't allowed with her, but Dad got to stay right with her. This MRI was just checking on her neck to see if there was anything abnormal going on. And it caught an image that showed she likely has Chiari Malformation.
The amount of research I did after that phone call from our family doctor.....it was a lot.
After that we were referred to a pediatric neurosurgeon who had us go get two more MRI's - one on her brain and one on her spine, both specific to Chiari. This gave us specific information about her condition. There was one image that showed some curving of her spine, possible scoliosis, so we were then sent for X-rays to check that.
When we saw the neurosurgeon the second time her eyes got a little wide over the amount of new symptoms that we were seeing within a months time. Between that, the new imaging/information and the fact she has the beginnings of scoliosis, this all led our surgeon to recommend surgery. As soon as could be arranged.
😢
It's such a weird condition. She can have amazing days and be just like the other kids in play and activity. Another day she can be in a lot of pain and basically spend the day in bed. She will have nights of not sleeping well and some being just fine. Feeling exhausted or sick happens. Back, shoulder, neck pain. Headaches. Stomach aches. Changes in appetite. ........it's a lot for anyone to deal with. And to watch your fun loving, active child who adores breaking into dance, doing crazy gymnastic type moves, running around, riding bikes.......become someone who has to monitor how they are feeling and not do things because it's just too much, or stay home from church because of pain......it's so hard.
I know there are much worse things we could be experiencing. And I'm truly thankful that "it's only Chiari". But in this moment this is crazy hard to go through.
We've spent the day enjoying Daddy's day off and working to be patient. We thought we would hear from our "insurance" (we use a sharing program, Christian Healthcare Ministries) or from the hospital saying that the surgery date was set because the finance side of things got worked out, or that it will be rescheduled once we get the finances finalized. But we haven't heard anything today.
Working hard to just rest in Christ and trust in His perfect plan.
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