I hope you enjoy reading about this precious family and their journey.
Tell us about your family. If your child has multiple diagnosis, feel free to share them.
My little family consists of Jonathan (Daddy), myself (Mommy), and Nola (sassy pants) with two dogs and a cat thrown into the mix. Nola is three years old, but will turn four (I can’t believe it!) on October 9. She has hydrocephalus and profound bi-lateral hearing loss.
Tell us about the moment you were told your child had hydrocephalus.
We were so excited to learn the sex of our little baby! We went into the ultrasound room expecting to walk out knowing if our baby was a girl or boy, but walked out instead with thousands of questions. Fear is the word that comes to mind when I think about that day.
How has hydrocephalus affected your daily life? Maybe give one "real life" example.
Jonathan and I are always watching for the “signs.” The one major thing that resulted from hydrocephalus was Nola’s hearing loss. Our morning routine consists of putting her “ears” on. She is completely deaf without her cochlear implants.
Share a moment when you were frustrated or discouraged
Nola had her shunt placement at 4 days old. She had her first revision at 10 months and then another revision at 20 months. You can see the pattern..every 10 months. Those first two years were rough because we felt like as soon as we were back into a routine our little Nola had to go back for brain surgery. With each revision, recovery got harder and harder on her little body.
Share a moment when you found joy or hope
A few months after Nola’s second revision we went in for another CT scan. When Nola was born, she was 25% brain and 75% fluid. At this scan, she was and is 99% brain. Her NS said, you can’t get much better than that! We rejoiced in this news and continue to rejoice!
What do you do to keep your sanity? How do you take a break?
I scrapbook and blog- although, now I am in grad school and both of those seem to have taken a back seat to grad school! Jonathan works on his CJ5 jeep. We also enjoy giving back- no matter what our circumstances; we want to help others who may face this too. I am on the Family Partners Council at LeBonheur Children’s Hospital where Nola has had all five of her surgeries. Jonathan is on the Board of Directors at Memphis Oral School for the Deaf- Nola’s school.
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
Arm yourself with information. After we received Nola’s diagnosis, Jonathan dove head first in finding the best doctors, hospitals, and any other person/organization that could help our sweet Nola. Find a support group- whether it be online or in person. There are people who have been in your shoes.
How do you deal with difficult questions from onlookers?
People do not know Nola has hydrocephalus unless we tell them. The only noticeable effect from the hydro is her cochlear implants. Most people do not even notice those, because they are too busy listening to her ask them 1000 questions. We were “lucky”- Nola has had not developmental delays from her hydrocephalus with the exception of speech- which she is quickly catching up at our amazement.
What is one thing you wish families with typical situations realized about families dealing with special needs?
I am not afraid or offended if you ask questions. I would rather you ask questions as oppose to stare at those “blinking” things on her ears! We want the same exact thing you want for your children- go to school, graduate, college, marriage, success in life, to be loved.
And just for fun:
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
I would love to go to a Sandels resort with my husband!
What is your child's favorite toy/therapy tool?
Nola LOVES play-dough!
And since we're from Seattle:
What is your favorite coffee (or coffee alternative) drink?
Carmel frappacino from Starbucks in the summertime. In the winter, anything made from Keurig!
And just for you:
Nola has Cochlear Implants. Can you share with our readers what cochlear implants are and how they treat her hearing loss?
Cochlear implants are like bionic ears. There are two major parts to her cochlear implants: the behind the ear processor with the magnetic coil and the inside her head part. Her ENT doctor placed a small round piece with flexible wires behind her mastoid bone and into her cochlea. Our cochlea has little hairs that pick up the sound – that’s how we hear. Nola’s cochlea doesn’t work- these flexible wires make up for that. She has a small piece she wears behind her ears that pick up the sound and “transfers” it to the wire things inside her head. As long as the magnetic coil is connect to the inside part she can hear. With these implants, she can hear anything you, as a normal hearing person, can. She can talk on the phone, dance to music, hear us say I Love You and say it back! She cannot wear her implant swimming- other than that she has these on every waking hour!
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