"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

6.28.2011

Itty Bitty Teeny Weeny.......

Pink and Yellow Striped Bikini!


Sweet Picture of a Daddy & his girl



I have feathers in my hair and Nola has asked for those, but when we saw the hair wraps at one of the souvenir shops, we knew this was perfect for Nola! It was Daddy's idea and Nola sat so still while the nice lady did her hair. It took about 30 minutes!

She's fearless!



Nola warmed up to the "Big Water!!"

Crabs and baseball

This is Jonathan's plate after eating crab legs and peel'em shrimp!

The devouring of crab legs and such in progress....


Nola and her Honey


A pick up game of baseball:

Nola: pitcher

JB: hitter

Honey: Outfield

Honey's turn to hit

Gulf Shores: Sand Playing Queen

The two loves of my life!


Nola was a sand playing queen! She had sand in EVERY crevice! But she had so much fun with it!

Love this picture!!

Nola would pick up the seaweed or other plants that washed up on shore and throw it back into the ocean! She would have piles of it in her hands and run and throw it back!


Sassy Pants




More Sand Playing


Alligators at the Beach!

Well...close to the beach! While in Gulf Shores, we went to the Alabama Gulf Coast Zoo. This little zoo was featured on the Animal Planet series "The Little Zoo that Could." This is probably the biggest alligator I have ever seen! During the hurricane in 2006, he was missing for several days!! He is fat and happy now.



Jonathan bought this white monkey for Nola at one of the souvenir shops. She loved it! She wore it the whole time we were at the zoo. When you press his belly, he makes a crazy monkey sound. Nola is holding her cup of food for the animals. The zoo had different feeding stations where you could feed the animals.



Nola feeding the goats. These goats would have eaten the entire cup of food if she had stood there long enough.



I think Jonathan had the most fun feeding the goats. This goat would stand up on the fence and stick his tongue out!





Our sweet girl!!




6.22.2011

Gulf Shores: Sandy Feet

Nola's sweet little feet


Mommy's Feet


More of Nola's sweet sandy feet.



Jonathan wouldn't let me take a picture of his sandy feet! Oh well, maybe next time! :)

Gulf Shores: Swimming Pool Fun

We got to Gulf Shores late Saturday afternoon. After taking Nola down to the beach and going to the grocery store, the only thing Nola was interested in was swimming!




Nola loves to swim,
smile for the camera,


play with Daddy,



and jump off the side of the pool!









Gulf Shores

We went to Gulf Shores with Honey, PopPop, and NayNay. This was Nola's first time at the beach. The video shows the first time she saw the ocean. She wasn't too sure about it at first!


video

6.16.2011

A Mother's Thoughts

**Warning- this is long, but so worth the time to read. You may need a tissue.**
I am part of a group of Moms of children with hydrocephalus like Nola. Because hydrocephalus and its effects are so vast, the needs of each child is different. There are children like Nola with hearing loss, children who will never walk or feed themselves- but each of these children are loved to pieces by the Moms and Dads who care for and advocate for their special gifts everyday.

THOUGHTS OF A MOM
by: Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.
Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our child's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose child's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable.
We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Just What I Needed to Hear


This Song is Wonderful.

6.13.2011

Show Us Your Life @ Kelly's Korner

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!