an update on our annabelle

Hi, friends! Gosh, it feels like it’s been such a long time since I’ve sat down to write a blog post. If I’m being honest it feels good but also a little nerve racking. As much as I’ve grown to love this blog there are still a few things that will always come first, family being at the very top of that list. If you follow me on Instagram you know things have been quiet around here because we’ve been putting all of our time and energy where it’s needed most, into getting our sweet girl well again. Before jumping back into regular blog content I wanted to share an update on where we’ve been and what lies ahead.

The beginning

Just before Labor Day weekend Annabelle spiked a fever for a few days which we assumed was just a virus. Being in school full time she is certainly around her fair share of sickness and we had actually been on a healthy streak for quite some time so when she got sick I wasn’t entirely surprised. We laid low for a couple days and then were feeling well enough by the weekend to hit the festival circuit and fully enjoy the last weekend of summer.

The Tuesday after Labor Day when Annabelle came home from school she had a noticeable rash all over a good portion of her body. I immediately called the pediatrician and they were able to get us in that evening. Luckily, she was still fever free but I wanted to get her looked at as soon as possible because this was something we had never dealt with before. The doctor diagnosed her with Hand Foot & Mouth {which had been going around her school} and told us that there wasn’t much we could do and the virus would run its course. Since she didn’t have a fever she was fine to go back to school, so she did.

The next morning her rash seemed to almost completely disappear but quickly returned when she got home from school that afternoon. The next day was the same except her fever came back towards the end of the school day so we picked her up early and snuggled for the rest of the night.

That weekend we were still letting what we thought was Hand Foot & Mouth play out. She was lethargic and irritable, very opposite from her normal self. On Sunday when she woke up she was very stiff, sore, and reluctant to get out of bed. Once we finally got her standing up she refused to walk, claiming her legs hurt. We figured maybe she was sore from spending so much time in bed and on the couch for the past couple days so we let her stay laying down where she was most comfortable and watched her closely throughout the day.

On Monday morning she was still refusing to walk so we took her back to the pediatrician and he diagnosed her with transient synovitis. Apparently, after a virus it’s not uncommon for children to have pain in their hips or knees as a response to the virus itself. He told us that we should watch her throughout the week and if she wasn’t walking better by Friday, or if her fever came back, we should take her to the ER. A few hours after we got home Annabelle woke up from her nap and felt warm to the touch. Her fever had returned so we called her pediatrician and he encouraged us to take her to the ER {they were worried about the pain in her hips being a bone infection}. We had already given her Motrin by that point and she was actually starting to turn around a bit, she was walking {with hesitation and stiff legs}, eating, and chatting us up. Since she didn’t really seem sick we agreed to monitor her temperature closely and take her to the ER if the fever returned.

Over the next two days we took her temperature nearly every hour. At one point I remember telling Ken that I felt like I was holding my breath, just waiting for her fever to come back. On Wednesday my parents took her for the day so that Ken and I could both go back to work. By the time she woke up from her nap her fever had returned and I asked my parents to meet us at the ER ASAP. I ran out of the meeting I was in, quickly picked Ken up, called our pediatrician to let him know what had happened, and drove to the hospital.

The ER moved quickly at first but then began to crawl. Annabelle was luckily in a good mood, especially after they gave her a double dose of Motrin. They did blood work, took x-ray’s, did an ultrasound of her hips {and then another one}, and finally decided to admit us for the night. Luckily we have a great children’s hospital nearby but it was still a super scary experience {for everyone}. The next morning we met with too many specialists to remember. Orthopedics, hematology, infectious disease, and probably a few more that I’m forgetting. There was no diagnosis that was immediately jumping out but there were a couple inflammation markers in her blood that were extremely high so they ordered more tests. We stayed another night and then another and on Saturday we convinced the lead physician to send us home. At that point they were only controlling Annabelle’s fever with Motrin and Tylenol which we knew we could do at home and she was so uncomfortable being hooked up to machine’s and having doctors and nurses come into her room every hour or more. So Saturday night we packed up with a plan to follow up with the doctors on Monday, after a night of rest at home. Unfortunately, her fever and rash persisted throughout everything and we were left feeling exhausted and not just because we hadn’t slept in weeks.

The diagnosis

Monday morning {one week ago now} we had appointments with our pediatrician and the infectious disease doctor. Since we had been going on nearly two weeks of a fever, along with the persistent rash and hip pain, they were both confident that her symptoms were pointing to an autoimmune condition. Specifically, her doctors thought she fit the description for JIA or juvenile idiopathic arthritis. Luckily by the end of last week we were able to get an appointment with the pediatric rheumatology department at a local university hospital. While it’s technically too early to make an official diagnosis {typically symptoms have to be present for at least six weeks} they’re fairly confident that our sweet girl does in fact have JIA. We’re very early in the treatment and have so much to learn but are feeling the tiniest bit relieved to at least have an explanation of what’s been going on for the past few weeks.

What’s next?

We started the recommended medication just a couple days ago and are already seeing an improvement in Annabelle’s symptoms. Our number one focus will continue to be our sweet girl but since we’re a bit more knowledgeable on what we’re dealing with we should be able to slowly get back into our regular routine. I’ll continue to share details on our girl when I think it might be helpful and if you have any questions or know someone who might be dealing with something similar, I’d love to connect. Thank you to anyone who has left a comment, sent a message, or reached out to our family in another way. We are more grateful than you will ever know and are thanking God for continuing to bless our family.

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4 thoughts on “an update on our annabelle

  1. Holley Grainger

    Thank you for sharing your story! I’ve followed you and sweet Annabelle for forever so I’ll definitely be continuing to pray for you through this next journey. Please let us know if there is anything we can do for you. While I don’t know of anyone with JIA, my friend is an RA specialist with thousands of patients seeking her care each year. I’ll reach out to see if she has any suggestions but it sounds like you guys are in good hands.

    Reply
    1. liz braga Post author

      Thank you so much, Holley! That would be just wonderful! We’re seeing the pediatric rheumatologists at the University of Michigan and have heard any good things. However, if she has any suggestions on other resources {books, groups, etc.} I would love to hear! You are the sweetest!

      Reply
  2. Valery

    Awe Liz! So happy you have found the problem. I know how scary it is to have a sick child. I’m glad she is starting to feel better. ❤️ You all take care!
    Val

    Reply
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