Christian Living

Medically Fragile Child: When you expect the news but it still stings

The Lilly people see in public; going to school, going to church, and in pictures is the healthy Lilly. Sometimes she is tired, but over all she is at her best. There’s a Lilly that only the ER staff, her paediatrician and specialist know, the medically fragile side of her; the complex and often unexplained side of Lilly.

Medically Fragile Child When You Expect The News But It Still Stings TW

A few months ago, Lilly’s Physical Medicine doctor decided to bring in a new neurologist to look over her file for a second set of eyes. Our appointment with the new neurologist was last week. The interesting thing is, the week before, Lilly had caught a virus that did a major number on her body. We ended up in the ER twice and we also saw the paediatrician twice during that week.

How to treat her in this state left some people puzzled.

The handy thing about the appointment with this new doctor being right after this virus was that the doctor got to see what happens to Lilly’s spasticity (muscle tone) level when she is sick. After going over Lilly’s complete history and answering a million questions the doctor came to the conclusion

What Lilly experiences isn’t typical for her type of brain injury

 

The doctor has ordered several tests. One test caught my attention; an lumbar puncture. I mentioned that Lilly had had one of these before at 4 months old. The team was unaware of this and they started looking back into her file. Sure enough, Lilly had that test at 4 months old and was ordered by this same doctor! The doctor made the commented that “parents are often the best place to get medical information from.”

Going into the meeting, I totally expected to hear that what Lilly experiences is not typical, and I wasn’t surprised to hear that there will be more tests. In the last 5 years there have been a lot of tests trying to figure this out. This wasn’t a surprise, I often leave meetings with more questions than answers.

Medically Fragile Child When You Expect The News But It Still Stings P

For now, I will just focus on the surgery and pray that everything comes together…

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This post is linked up at MommyMoments, Family Job Blog Linky

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5 thoughts on “Medically Fragile Child: When you expect the news but it still stings

  1. Hi there Candace. I found you at Family Joy Blog Link up, and I am so sorry for what you are going through. I also commend you on writing your story, and I am interested to read more of your blog. Thank you for being so brave to share your story! You are one tough mama! xo

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  2. Prayers for your lo and the rest of the family. I can’t imagine the worrying over the unknown, but hopefully it’ll be figured out soon and you can find a way to treat it all. 😉 best wishes.

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  3. This post really hit home for me. We had this same situation with my son who was diagnosed with Autism 2 yrs ago. We knew there was something up, and we were ready to hear what the doctors had to say. It was so hard to keep the tears back when the word Autism was said in the office that day.

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