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Rae's Medical Fund

Rae's Medical Fund

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 21 months, Rae looks like a typical toddler on the outside, but she doesn't toddle or even crawl. She does not "baby talk" and is currently not able to sign, but she does give a pretty good "High-5." 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...When Rae about five months and 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" and we had to adjust to the fact that Rae was developmentally delayed.In November, we had lab work completed to determine if Spinal Muscular Atrophy was the culprit of all Rae's medical concerns (which came with a whopping bill...still unpaid) 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. 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. We are now waiting on some Mitochondrial test results which won't be back until Oct.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 July 9th are: Hypotonia, Myopathy, Global Developmental Delay, Epilepsy, Scoliosis, and Nearsightedness (she looks cute in glasses). Fortunately, those little inches keep adding up and now, at 21 months, Rae can sit independently for over 30 seconds, lift her head while on her tummy, and can finally bare some weight on her arms (just a bit). These are impressive developments in our home and this is just the beginning.Follow us at: http://hypotonicworld.blogspot.com/

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