Tuesday, December 10, 2013

Undiagnosed Rollercoaster Ride

These last few months have been an emotional roller-coaster with Bug. With Bug having an unknown genetic diagnoses these last few years have been interesting. We know she has a genetic deletion but, that's about it as no one else has been documented with it that we know of. The last few months have been very emotional for our family.

We are getting ready to go back to the geneticist at the beginning of the year. Her pediatrician feels that we know so much as she has been diagnosed with several things since we first went to the geneticist.
Bug has always been on the failure to thrive with her weight. She has lots of stomach issues and is extremely picky eater. She lost an extremely large amount of weight awhile back which sent her Dr.'s in a frenzy trying to figure out what to do and lots of invasive testing.

Her GI Dr. felt that she needed to be on a feeding tube and felt that her body was starting to take nutrients from bones, teeth, and hair. She wanted to test her for varies diseases like cancer, ulcers, croons, celiac, and other things. 

Insurance was extremely slow getting her approved for the necessary testing and by the time we got all the approvals and testing done her weight was borderline on the growth chart. Bug only weights 50 pounds and is 11 years old. An idea weight for her is 75+. You can imagine having lost so much weight looked like with already being in the 50# range. The GI Dr. then felt we should just watch her and her weight. She started food therapy a few weeks ago which takes us to an astounding 6 set appointments a week. That doesn't include any other Dr. appointments and homeschool activities.

I almost felt like it was an insurance issue with her not getting a feeding tube as this Dr. scared me and was pretty insisted at the beginning of her getting a feeding tube. Weight variation has always been one of Bug's issue. Needless to say I was surprised as this isn't the first time we have had a drastic weight change. I don't want to put her through all the testing again when she gets that bad again.

We will see what the Geneticist say. I really don't expect much but, maybe I will be surprised. Last time she seen the Dr. she didn't have Rheumatoid arthritis, Raynaud's Syndrome, Seizures, ADD, and has been diagnosed with Autism. That is just a few things we have added. 

Life is never dull around our home. I wouldn't change it for the world. It keeps me on my knees praying to my Savior. Also I have met some truly amazing people that I would have never known if it wasn't for Bug's special needs. Sometimes I just get tired and need a week without appointments. Just a little R&R from every thing once in awhile and lots of prayers!

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