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Rae's Medical Fund
$200 raised
8% of $2.5k goal
2 contributors
0 days left
Ended Mar 7, 2013
In our home, we don't look for developmental milestones. We look for the inches, like the first time our daughter, Rae, held her own bottle at 14 months. Now at the age of 2, Rae looks like a typical toddler on the outside, but she doesn't toddle or ...
In our home, we don't look for developmental milestones. We look for the inches, like the first time our daughter, Rae, held her own bottle at 14 months. Now at the age of 2, Rae looks like a typical toddler on the outside, but she doesn't toddle or even crawl. Her development is delayed. She just started placing small items into a bucket, a skill usually acquired between 8 to 12 months.

Here's our story...

My husband works a full time job as an industrial mechanic and I am a stay at home Mom. Our initial plan was for me to return to the workforce after Rae was born and I had a few really promising leads. Then our medical journey began...

Rae was about five months when we were told she had Hypotonia (a fancy word for low muscle tone). After that our world became a blur of doctor appointments and testing. By August 2011, she was diagnosed with Scoliosis, likely caused by her Hypotonia. In September, Rae had her first MRI with "normal" results and then proceeded with a Nerve Conduction test...also "normal." She was accepted into an intervention program and started receiving physical therapy once a week and we were hopeful, but then the word wheelchair came up and we knew there was no "quick fix." We had to adjust to the fact that Rae was developmentally delayed.

In November 2011, we had lab work completed to determine if Spinal Muscular Atrophy was the culprit of all Rae's medical concerns and the results were again "normal" (thank goodness). Then the "tremors" started concerning us and we ended up back at the hospital for an EEG: Diagnosis...Epilepsy. Now it was time to start the grueling process of figuring out which medication or combo of medications would stop the seizures (which we're still trying to determine). This also meant we were going in for a second MRI (results were once again normal). We then went to Genetics to see if there was something they could find and so far (thankfully) everything is "normal," which can be a bittersweet result.

Between September and November of this year (2012) we learned that she has an allergy to penicillin and that she is aspirating liquids. We now have therapy 4 times a week (physical, occupational, and feeding). On Rae's second birthday (Oct 2012) she received ankle foot orthotics and the results of her mitochondrial test results (they found a single mutation. We were once again stumped and then referred to a specialist in Atlanta, GA. We are once again in a holding pattern. We hope to receive the results of her muscle biopsy/spinal tap in 6 to 8 weeks. We're praying it will offer us an answer..

We are also preparing to rebuild our front porch. We have to build a wheelchair ramp. In four months time the process of ordering a wheel chair will begin...

It has been heartbreaking and the medical expenses just keep piling up (some caused by my own unexpected surgery). Our little Rae of Sunshine is special needs. I don't think anything in life prepares a person for that realization. Every time we think we have the bills and our emotions under control, another rug gets tugged and we're falling to the floor...again.

We need help covering the onslaught of medical expenses that are flooding into our mailbox. Between the multiple specialist co-pays, testing, medications, regular doctor visits, and eventual medical equipment...we are just overwhelmed. We try to do as much as we can to make it work, but sometimes it just isn't enough.

Our official diagnoses as of December 12th are: Hypotonia, Myopathy, Global Developmental Delay, Epilepsy, Scoliosis, Mitochondrial (undetermined) and Nearsightedness (she looks cute in glasses). Fortunately, those little inches keep adding up and now, at the age of 2, Rae can sit independently for about 20 second, has better control of her head, is able to bare some weight on her arms (just a bit), placing items into a bucket, and pulling pegs off of her foam peg board. These are impressive developments in our home and this is just the beginning.

Follow us at: http://hypotonicworld.blogspot.com/
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