Friday, October 4, 2013

#12 Another Update


Hey sweet friends!

I'm so thrilled to hear about April's sweet baby born last night!  How exciting.  

I have more good news.  

According to the doctors at Mayo, my niece Eden doesn't have Ehler's Danloss Syndrome that she was tentatively diagnosed with in Mississippi.  That is a HUGE blessing because apparently EDS diagnosed as a baby can be pretty scary.  Eden isn't wanting to crawl or walk yet, so the doctors suspected hip dysphasia, but X-rays showed nothing wrong with her hips, which is also great.  She has bizarrely flexible hips and probably will in the future.  They were given helpful physical therapy coaching and a brace that she will wear to keep her legs together until her muscles strengthen for crawling and walking.  My sister was very very well taken care of by the doctors there.

Her small size and eating difficulties are still puzzling to the doctors.  She doesn't like to drink, and was so dehydrated at Mayo that the labs couldn't take her blood work.  They met with an occupational therapist (hopefully someone JUST LIKE Britt Doyle <3) for coaching on how to creatively help Eden drink.  They will connect with Mississippi's Early Intervention program to continue with physical therapy when they get home.  The Mayo doctors will also track Eden's blood work from a long distance to see if she continues to stay small.

What awesome news.  I heard snippets from my mom the past couple of days and then got a full report from my sister in an email this morning.  The email right under Joy's was from my uncle who's fighting cancer--which is so hard.  I think that was a helpful reminder for me that Eden's diagnosis doesn't affect how good the Lord is.  I think the Lord wanted to remind me that whether it would have been good news or bad news, the Lord still would have been just as good.  That's still hard for me to grasp, but I think I can at least type it as true.

Thank you so much for your prayers!  They were so clearly heard.

Thanks for loving me and my family in that way!

Jessey 

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