This blog is to share with others our family's journey with hydrocephalus and hearing loss. We hope this blog gives hope and inspiration to families who may be facing the same diagnosis.
"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
Yesterday, I had my bilateral cochlear implant surgery. This will enable me to finally her Mommy & Daddy say I Love You. And eventually I will be able to say it back. What a wonderful world we live that technology has increased so that these surgeries are possible!
The Subsidium's annual fundraiser for my school is December 3,4, & 5! As you can see, I made the picture! Look for me on billboards on Germantown Parkway and Poplar Avenue!
"A Weekend of Shopping Gives a Lifetime of Sound!"
Team Nola Gracyn raised over $3100!! We are so grateful to all those who participated in any way! Thank you to all of you who donated, ran, or bought a t-shirt! Our team tripled from last year! And we cannot wait until Pumpkin Run 2010!
This is an exciting weekend for me! I am turning 2 tomorrow! I am having a birthday party at MOSD with all my friend there. Then we are attending the Pumpkin Run in the morning and after that, we have my birthday party with all of my family!! I am so excited! This has been a great week not only for me, but also for our quest to get the word out about the great things done at LeBonheur and MOSD!!
My Mommy was reminiscing about all that we have gone through over the last 2 years. This bible verse is perfect. Nola is fearfully and wonderfully made- she was given to us by God and our duty is to show her how beautifully and wonderfully made she is.
I will praise You,for I am fearfully and wonderfully made;Marvelous are Your works- Psalms139:14
This week is going to be busy! My birthday is Friday! I will be 2!! I get to have a party at my school with all my friends. Saturday is the LeBonheur Pumpkin Run; and boy do we have a large team this year! Hopefully it will continue to grow each year. LeBonheur is such a special place to me and my family. Then Saturday afternoon will be my family birthday party! Yay for me- I am turning 2!!
There are so many exciting things coming up in the next few weeks!! I will turn 2 years old on October 9! Before you know it I will be ready to drive! I will have a birthday party at MOSD on the day of my birthday with all my school friends. On October 10 is the LeBonheur Pumpkin Run! Mommy and Daddy are so excited about our team this year! We have 55 shirts ordered! And about 25 people signed up to participate in the run! We have had gracious people who have donated towards this great event! We still lack around $2000 in meeting our goal! GO TEAM NOLA GRACYN!
LeBonheur's Pumpkin Run is coming close! You can help support the WONDERFUL hospital that took such great care of me during all my surgeries and tests! www.pumpkinrun.org Click on Support our participants and find my Mommy or Daddy's name. Click Donate!
It's time once again for the LeBonheur Pumpkin Run! It will will be Saturday, October 10. Wewill once again have aTeam Nola Gracynand will be ordering shirts! Please check back for more information soon!
I started my first day of MOSD on Thursday. I didn't cry- My Mommy & Daddy did though. Thank goodness they held it together until they got into the car! I did all kinds of great things my first 2 days of school. My teacher's name is Ms. Sue and she is a happy and loving lady! Ms. Schwartz is the director and she is beyond helpful. . In fact, Mommy & Daddy said they have not met someone who is not helpful and kind at my school. My speech therapist's name is Ms. Courtney and my listening therapist's (aural habilitation) name is Ms. Nathalie. I will be learning to listen and talk. I should get my hearing aids in the next week or so. Mommy & Daddy say I am doing such a great job already!
Nola will be attending the Memphis Oral School for the Deaf starting August 13. She has been fitted for her hearing aids and the ear molds even have glitter in them! Visit their website www.mosdkids.org to learn more about this AMAZING school where deaf children are talking.
AT 3:38pm, H. RES 373 Passed by a voice vote! September is officially NATIONAL HYDROCEPHALUS AWARENESS MONTH! Thank you PHF, Inc, Congresswoman Bachmann, Congressman Lance, the 88 other Co-sponsors, the rest of the U.S. House of Representatives and everyone who made this a reality! WE DID IT!!!! :)
I went to Billy's first birthday party and I had fun- especially eating my cupcake! I even gave the birthday boy a kiss! And look at those curls I have! Mommy loves them!!!
We had more testing and I do have hearing loss. What degree or the type is not diagnosed yet. Me, Mommy, & Daddy will go to an ENT doctor on the 21st and then we will go back to LeBonhuer for another test. Whew! All this testing.
We went to LeBonheur to have my hearing checked because Mommy & Daddy were concerned about it. The tests were not very encouraging, but we are going back on Monday for a test called ABR. Mommy has to get me to go to sleep before they can start the test- so here's hoping I am sleepy on Monday morning!
Mommy and I went to the Memphis Zoo with Aunt Amber and cousins Tristan & Addison. I had a blast! The older I get the more I enjoy things like the zoo. I especially liked the polar bear; he was swimming around and would come right up to the glass!!
I was playing with the surgery hat Ms. Diana gave me. I had to somehow pass the time before my surgery! I walked through the halls of same day surgery and greeted everyone I saw.
My Mommy says I am the most preciou thing she's ever seen!
Nola Gracyn's journal is to help others keep up with our little miracle. She was born with congenital hydrocephalus and has had 3 surgeries as a result- shunt placement & 2 revisions. Nola was diagnosed with profound hearing loss in the Summer 2009, and had bi-lateral cochlear implant surgery on December 14. Nola was "turned on" January 6, 2010. Nothing will stop this spunky little thing! She amazes her Mommy & Daddy everyday and charms everyone she meets. We cannot imagine life without her!