I was just getting home from a work trip and my husband says to me…
“Now don’t get too alarmed…I am sure it isn’t anything BUT…our daughter seems to be experiencing some sort of strange head jerks that she can’t control.”
Of course I flipped out and then quickly witnessed it for myself. It appeared to be a seizure to the untrained eye and with that, we rushed her to the hospital. They hooked her up to every machine, put an IV in her tiny little vein and the process began. She was just 8 months old and as new parents, we were not ready for this…like AT ALL.
With tears lumped in my throat, I held back my sobs and prayed our little baby girl was going to be ok. My mother’s intuition told me different so suppressing that feeling was mandatory at the time just to get by.
I will NEVER forget that feeling of helplessness and fear. I remember where we were standing, what she was wearing, words that were spoken, etc…It is hard to believe it was 5 years ago.
What we found out from the tests, PET Scan, PH tests, pokes and prods is that Annora had something called Sandifer Syndrome…AKA…a very severe case of GERD. This was a GREAT outcome compared to what they had been screening her for and we were relieved. With some medication, her symptoms would subside and she would be just fine. Through this screening and testing process though, we found out some other interesting news about Annora. She not only suffered from Sandifer Syndrome, but she had something called “hypotonia.” Hypotonia is a technical term for low muscle tone. Hypotonia was something she would not grow out of, it was something she would have for life. Our daughter was “different” from the “normal” child…OUCH! Wrapping your mind around that is tricky and takes time to digest.
That news stung because we knew she had a long road ahead of her and we were NOT prepared to best help her with the tools we currently had. We needed assistance, help and support. We turned to our developmental pediatrician who recommended Help Me Grow http://www.helpmegrow.ohio.gov/aboutus/Finding%20Help%20Me%20Grow/LucasCounty.aspx.
After some research into it, my husband and I decided to investigate further and found that the gobs of support they offer was just what we needed to help Annora be successful. The fear and stress of feeling alone went away immediately and we were able to process what she needed most with the help and support they offered (such as play groups, OT/PT one-on-one assistance, financial help, etc.).
Getting the help we needed for our child was stressful and hard because we didn’t have the necessary tools. I remember the feeling all too well when we found out the news our child wasn’t “normal” even though in a very slight way compared to what other children suffer from. It hurts, stings, and produces a helpless feeling. Knowing the resources available can cure those feelings and get your child on the road to success quickly.
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