Meet Nola Gracyn. This 3 year old little ball of personality has been through 5 surgeries: shunt placement, two revisions, cochlear implant surgery, and strabismus surgery.
Nola was born with hydrocephalus which is a build-up of extra fluid in the brain. Hydrocephalus can cause all sorts of related problems such as vision problems, hearing loss, and developmental delays just to name a few. We consider ourselves lucky- Nola's hydrocephalus caused her to lose her hearing, but she was able to get cochlear implants which give her the ability to hear. Her hydrocephalus also caused a muscle in her left eye to be alittle weak, and had to be corrected last July.
This is Nola signing for more cheese after her first shunt revision. The recovery from these shunt revisions are rough on her little body, but she is a fighter for sure. We pray she will not need any more shunt revisions! We are shunt revision free for 2 years!!
This is Nola at her school -Memphis Oral School for the Deaf. This AMAZING school teaches her to listen and talk. Visit the school website: www.mosdkids.org
Nola's medical issues have opened up our eyes to advocating for children like Nola. The picture above is with Senator Montgomery; we met with him while advocating for a bill to require insurance companies to pay towards hearing aids which they did not until this bill was passed! We were also advocating for Nola's school-MOSD and their oral deaf education program.
This is TEAM NOLA GRACYN at the LeBonheur Pumpkin Run. LeBonheur Children's Hospital is another place near and dear to our hearts because of the exceptional care Nola has received during all of her surgeries, ER trips, and recoveries. If you would like to join us at the race this year check back for more information soon!
2 comments:
HI.. stopping by from Kelly's Korner! So amazing how obstacles and adversity can bring everything into perspective! So glad and blessed to read your daughter's story!
Hi :) I saw your link on Kelly's Korner & I had to come visit you & post. I had hydrocephalus as a baby & I have a ventricular shunt. I had my shunt put in at 11 months old & I am VERY lucky to never have had a revision. I just turned 30 & have an (almost) 18 month old son. The last time I had my shunt checked was probably almost 10 years ago & it was still intact. I was nervous about being pregnant with my shunt, but everything turned out just fine. I know I have been so blessed b/c I haven't had any problems with mine. Your little girl is adorable & if you ever have any questions from someone a little older that has a shunt, just let me know! :)
Bonnie
www.thebrownfamilyblog.com
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