We need your help! We need to raise $6000 by Monday! After a 12 week program for our daughter we have been informed that she needs another 12 weeks to meet her goals! She has come so far and needs to continue her hard work to reach the top! Here is our daughter's story. We have provided the preface for our current journey so you can see our daughter through our eyes.
Where do I start? I guess at the beginning of Zoe's LONG journey. It's a girl! Zoe was born March 11, 2009 via emergency Cesarean section. I knew that something was wrong as soon as I woke up. Zoe was not moving and a frantic call to the doctor started our morning.
One minute. If we would have waited one minute to get to the doctor's office, but she is a fighter and pulled through! She was resuscitated and ventilated for three days before she was able to breathe on her own. She was born with cerebral edema, or severe brain swelling and was under so much stress that she had apspirated meconium prior to her birth. The consensus is that this caused her to develop laryngomalacia, or floppy vocal cords. This made it sound as if she was gasping for air when she was breathing, but it was her vocal cords vibrating causing striders. After three days, her MRI showed that her brain swelling had lessened. Zoe was fed via an NG tube for 7 days, but was eating both by breast and bottle when we left the NICU 11 days later. It was exhausting to sit and watch monitors and jump at the sound of every alarm, but we were able to bring home a beautiful baby girl without any cords or monitors or tubes!
Let's fast forward 4 days. We went back to the hospital because Zoe would not eat. She screamed...that's all she did. She went from eating an ounce to barely taking 1/4 of an ounce. We had a swallow study performed and yes, the dreaded word, aspiration. Zoe was aspirating all fluids--nectar, honey, pudding--all of it, so we were back to feeding via a nasogastric tube. At four months old she graduated to a g-tube and 6 months later we had a mic-key button. She was recieving feedings by a pump, and due to a few scarey bradycardia moments and trouble with her oxygen saturation, we also left with an apnea monitor and oxygen. We always braced ourselves during EVERY feeding because we knew that as soon as we hit 1/4-1/2 way finished she would throw up. There is NO exaggeration. EVERY feeding.
At the same time that the g-tube was surgically placed we made the decsion (the hard decision because one mistake and a machine would have to breathe for her forever) for Zoe to have a supraglottoplasty. Her surgeon was going to trim her airway with a tiny laser in hopes that her epiglottis would lay flat across her airway. Our fingers were crossed that this would help with the aspiration and that she would eventually be able to eat by mouth.
This went on and on and on, but through it all we had some AMAZING women from First Steps of Indiana helping us each week. From six weeks old to 3 years old, Zoe recieved Occupational Therapy, Physical Therapy, Speech, and Nutrition. Thank goodness for them, too! We learned how to help with her sensory issues (she would look at something and gag), she sat up, crawled then walked at 21 months old, she started talking, and we monitored her growth.
Growth. This WAS a sore subject in our house. We have struggled for 6 years. I believe that the saying, "One step forward then two steps back," was said for Zoe Mckenna Carter. She would gain an ounce and then lose 4 ounces. Over and over again. It was devastating, frustrating, disheartening...all those words that describe how the heart feels. It was hard work. Every single day felt like a year--feed her, clean up vomit, rinse and repeat. We would pick her up and get so excited because she felt heavier only to find out that she had lost more weight. So, of course, we had hospital stays at Riley. While we were there the story changed a little for Zoe--feed her, clean up vomit, weigh diapers, get her to sleep to be poked and proded an hour later, rinse and repeat. These stays were both long and short, but eventually we thought that there was a light at the end of the tunnel. The hospital stays became far and few between and she graduated from G.I. (still had her tube), Neurology, and Pulmonology. We were down to seeing Developmental Pediatrics at Riley Hospital for Children every few months and monitoring her growth with weight checks every 2-4 weeks.
I've left out the tests after tests to formally diagnose our daughter with something. We exhausted them until all that was left was a muscle biopsy that we refused to allow her to undergo. If you have some free time, "google" it and see what that entails for a 15-20 pound toddler. All we wanted was an answer, but we finally settled on being okay with not knowing. Knowing wouldn't change anything...she would only have a label, so read on...
Let me go ahead and start a new paragraph for how INCREDIBLY FRUSTRATING it is when doctors and feeding team nurses DO NOT listen to you. I know my daughter. I don't need to explain how or why to anyone, so VERY LONG story short--I stopped listening. What? I know that you all are gasping reading this. How on earth could I not listen to these medical professionals? Those of you that know me know that I am almost through nursing school. I respect the medical field and all who work so hard to help people, BUT this is my daughter we are talking about! So, we started doing our own thing.
Zoe started kindergarten this year! Her IEP (Individual Education Plan) was changed to allow her to go half days and receive services in school. She LOVES school, but we were still very concerned about her ability to socialize and understand.
This past winter Zoe was able to participate in a cheer clinic at her elementary school. My mother was able to take her to the Saturday morning clinic. Seeing Zoe with the other girls her age caused more concern. She could not focus, she clearly did not understand personal space, and she did not follow instructions. My mom was able to sit with the mother of a little girl that Zoe had taken to and they talked during the clinic, but not about Zoe. The next day my mom was talking to her best friend in Atlanta. She was taking her son to Brain Balance, a personalized program that helps with brain development. She sent a book (Disconnected Kids) to my mom and there was the answer! That was Zoe! Rewind to the mother that my mom was sitting with at the cheer clinic...her daughter went through the program, too! This just fell into place...GOD IS GOOD!
Zoe started Brain Balance 11 weeks ago. It was determined that the right side of her brain was underdeveloped. We learned that the milestones that she never hit when she was an infant could be met with brain and core exercises. In this SHORT amount of time, Zoe has flourished. Never in a million years would we have EVER thought that she would be were she is. I cannot believe it. Eleven weeks ago, Zoe could not look into your eyes, she could not eat more that 3 bites at a meal withougt having to be force fed, she fell when she walked, she could not sit through her homework, she threw tantrums all day long, her hair was not growing and breaking off, she had accidents during the day and at night, and so many more things that I couldn't possibly write out. All of the above mentioned things no longer exist in that form!
We were able to remove food intolerances from her diet after blood tests were performed (Remember those doctors I was talking about? The same ones that refused to do a food allergy work up because she did not show signs of any intolerances?) and SHE EATS NOW...EVERYTHING IN FRONT OF HER!!!!!!!!!! Example: she has gone from eating 2-3 bites of a pancake at breakfast to eating 2-3 WHOLE pancakes. Six years of not eating and gaining--she started the program at barely 30 pounds and now weighs 32 pounds! That has NEVER happened! We can do all of her homework at night and she does this with little help. She only has an occasional accident (once every 2 weeks) overnight and never during the day. She walks with her head up and looking ahead, so this means that she is not as clumsy. I can brush her hair! I do not use a comb and hope that her hair does not break or fall out. It is also two inches longer in the back than it was 2 months ago. I also want to add that instead of having a 6 year old that could only be a toddler, she acts 6. She plays house, she loves Barbies, she loves being a mommy to her babies, and she ACTUALLY PLAYS WITH OTHER CHILDREN!
We had a progress report last week and she has maxed out of some of the things that she was not even on the scale for at her first report, however, there are still things that she needs to work on. This means that she needs to go through the program for another 12 weeks. This program is not cheap...why should it be, right? All of the money in the world can't buy the happiness I see in my daughter's eyes. We are trying to raise money for Zoe to continue to FLOURISH (yeah, that exciting word)! Please donate for our Zoe! The cost of the program does vary, as it is cheaper this time than the first. The program alone for this round is $5,000. We are setting the fund for $6,000 to help with her grocery cost and gas for getting her to and from the program each week, as I have had to stay home to work with her and take her to her appointments 3 days per week (with my WONDERFUL mother's help...where would we be without her)?!
We are hoping that 200 of our friends and family can donate $30.00 to meet Zoe's goal! We are greatful for any amount that you are able to give!
Thank you all so much for your thoughfulness and help. It does not go unnoticed and will NEVER be taken for granted. We have been so blessed every step of Zoe's journey and love that you can be a part of it!
Janna, Ray and Zoe Carter (and all of our family and friends)
Visit Brain Balance Achievement Centers
for more information! They are amazing!