My Personal Fundraising Page
Avery was born with myelomengincole and hydrocephalus. She had her back closure surgery the day before Christmas Eve and her shunt placed on New Year's Day. After a 3 week stint in the NICU we got to go home, a terrifying prospect where there were no nurses or monitors. Avery was a sweet and calm natured baby. She rarely cried. Her older sister Olivia, was 3 when Avery was born and she was NOT sure about being a big sister. Olivia picked out storage buildings and dog cages that she thought were better suited for Avery than the crib across from her toddler bed. She even asked us to return her to the hospital. Unfortunately we did. Many times.
Avery's first shunt failure on September 11th had no symptoms but my internal alarm system had been sending out warning signals. I called neurosurgery multiple times and asked fellow parents and got similar feedback, "That's not a typical sign or symptom, but if you feel like something is off, you should get it checked." We eventually had neurosurgery move up her regularly scheduled scan but it would be weeks until she saw the doctor for a follow-up. We went to the hospital for the routine MRIs and X-rays and were sent on our way. On the drive home I called and asked about the results. Avery's doctor wasn't working that day and I was told another doctor would review the scan and get back with us. Less than an hour later I got that return call. We were told to get to the ER as soon as possible, Avery needed emergency surgery. Our next malfunction occurred the day of her scheduled scan 7 months later. She was fasting in preparation for possible sedation and in the wee hours of the morning I went to wake her for a bottle and she had vomited (a shunt malfunction sign) she was listless and continued to dry heave as I cleaned her up. She had surgery that day about an hour before her test was scheduled. Aside from her two shunt malfunctions we are frequent fliers at the Emergency room for UTIs and Kidney infections. Avery has severe renal reflux is cathed regularly.
Avery is a lively 2 year old and a force to be reckoned with. Spina Bifida is just a small detail about her life. She is so much more than a kid with SB. She loves music and dancing. Singing too. She has super hero senses and can sniff out cookies or hear a candy bar being unwrapped from a mile away. She loves her baby sister, Emery with unequaled ferocity and gives the best kisses hugs. When I’m sad, she sits in my lap and puts her hand against my cheek or hugs me and pats my back. There is so much love and silliness and strength and sass in this little girl. I cannot imagine a world without her spirit. It means the world to us to have everyday Angels supporting Avery on her journey through life. Join our Angels for Avery team and help us raise money for the Spina Bifida Association of Kentucky.