Wednesday, November 13, 2013

Henoch-Schonlein purpura

You will note there are no posts about Halloween yet. This is because Marly has been sick since Halloween. I haven't mentioned it much to anyone, until yesterday...

Let's Rewind to Halloween -

I picked the kids up at the bus stop after school. We needed to quickly change into costumes for "Trunk or Treat" at church. Marly complained right away her stomach hurt, and asked to stay home. I convinced her to go. We picked up neighbor Lily, and had a good time.

We got home from church to trick or treat on the Riverview. Marly complained again her stomach hurt, and stayed home with Dad. Dean took both bags up and down the street, collecting candy for Marly too. He politely explaining to the neighbors his sister was home sick.

I will fast forward through the Dr visits, an ER visit, multiple calls with her doctor about her abdominal pain, and a week of missed school. Finally we saw a smile on Sunday night, when I snapped this photo of her playing 'Go Fish' with Dean. We thought she was better.
Unfortunately, it was just a rare "good hour".

We were to the Dr. again on Monday of this week (tests turned up nothing serious). There were several more physician phone calls. Back at the clinic on Wednesday we finally received a diagnosis of Henoch-Schonlein purpura.

According to the Mayo website, this "is a disorder that causes inflammation and bleeding in the small blood vessels in your skin, joints, intestines and kidneys." It is pretty rare. Other sessioned pediatricians were called in to look at her (and examine the rash), and specialists were called.

What the web site doesn't clearly explain is the PAIN Marly faces. She has severe abdominal pain. Sometimes her legs or joints hurt, etc. She is very tired. She eats little. She also has a strange rash, but honestly, that is no big deal.

Mark and I are extremely thankful and grateful and blessed we believe she will RECOVER fully in a handful of weeks. We are grateful and thankful we have a diagnosis that has a POSITIVE outcome in due time....

...we also understand we could have a tough month  ahead. Marly is only able to handle school for a few hours now. We will be doctoring weekly for at least 6 weeks. There can be serious (but rare) complications to her illness. When her pain strikes, it is terrible. She is very tired. Sometimes she cannot walk well. Today she tried school, with a plan to pick her up at 2:20 pm (school lasts until 4 pm). She made it until 1:20 when I got the call from the nurse. The pain hit her. I was in my car between appointments, and cruised to retrieve her.

Mark and I are grateful for our pediatrician, the medical concern, and care we are getting. We are grateful for our concerned family and friends. We are grateful for Dr. Nana Chris. We are grateful for the HELP our family and friends have offered. We are grateful for the prayers and ask for more. We are VERY grateful for our caring co-workers and employers who let us put our child first. We are grateful for our neighbors willing to help (including catching a CUB run for Pediasure, more ibuprofen, and Vita-water just last night). We are grateful for the calls, texts and more.

We are grateful... but we are feeling stressed, worn, tired, worried, scared, anxious, and all those things that come along with illness. We are pained watching our little girl in pain.

Marly is tough... but right now, there are too many minutes every day when the pain is tougher then her.

....that's all I guess.....

Right now, I am waiting for our pediatrician to call back about the ultra-sound taken this morning to check Marly's organs... and to ask all those questions Mark and I needed time to comprehend.

**UPDATE - Ultra sound looks good. Prescriptions have been called in to help manage the pain.**

Thank You

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