****When I was 5 months pregnant we found out Ryan had Spina Bifida. Scared and confused don’t even begin to describe the range of emptions we felt. How will we watch out daughter grow up in a world where she will be so limited? Why her? What will she be like cognitively? How will we help her overcome obstacles and view herself as equal ?
The one thing we didn’t question though is how hard we would work towards giving her the best quality life we possibly could.
At 8 am july 7 2009, Ryan was born. The joy we felt in our hearts to see a 6lb baby girl was amazing. I got to kiss her and with in minutes she was shipped off with daddy to surgery. Closing her back and placing a VP shunt in her head to drain the fluid off her brain.
There are no words to describe what it felt like those 3 days in the hospital. Everyone coming to see us, but no baby in our room to joyfully show off and snuggle. Ryan remained on her belly for 5 weeks in the NICU . For 5 weeks we sat beside her. Feeding her on her belly, changing her diaper on her belly, and gently holding her hand and patting her tiny little head hoping that our skin to skin touch helped her thrive.
After 5 LONG weeks we were able to hold her. Holding that 7 lbs of little Ryan, felt like I had the whole world in my hands. We finally got to take her home.
That night I didn’t sleep. I watched her and watched her. Amazed by how strong and beautiful. I also heard her. Ryan had a “squeak” noise she made when ever she would breath in. and that night around 11pm while giving Ryan her bottle, she quit breathing. I had to do mouth to mouth to get her to respond. And back to the ER we went. Ryan was placed back into the NICU for another month. She had 1 more apneic episode while there. Test after test after test. All they could find was reflux. Chris and I took turns spending countless hours in the medical library trying to figure out what was wrong. I was convinced it was her Chairi (in her brain) causing the squeeking and swallowing issues. But the DRs kept telling me I was crazy bc she was too young for that to be a problem. We suggested a trach, they said it wasn’t necessary.
4 weeks later we went home again. This time for 3 days. I was gone from the house and daddy was home with ryan when I received a text. “GO TO KOSIAR”. I got there to find Chris in tears. Ryan had quit breathing again. Only this time it took mouth to mouth and chest compressions to revive her. Chris had thought he lost her. But God had other plans that night. Ryan responded and there back at kosiar we spend another 4 weeks. THIS time we pulled in our own Drs to examine her. AND we demanded a trach be placed. We couldn’t risk her not responding the next time we had to do CRP on her. Come to find out ryan DID have Chairi II and needed a decompression right away. She was the youngest patient her Neurosurgeon had ever done this operation on. AND she needed a trach bc she had lyrnagomelicia. (not fully developed lyrnex) The reflux would aggervate it and cause it to become inflamed and block her air way. She had to undergo another surgery called a Nissen to keep her from being able to throw up. Bc now at 3 ½ months she was just barley 9 lbs. A feeding tube was placed as well. So now after all of this I sat for days in the PICU at kosiar. Learning everything I could that the nurses could teach me. One night I over heard a nurse say “Ryan neighbors is a very sick little girl”. You can imagine how my heart broke. Still we didn’t care. She would make it!! We would not let her come this far and give up. At 4 months Ryan came home. Now with a feeding tube, brain surgery, Trach, trach suction machine and on oxygen at night…she finally was able to come home and live a normal life. Sign language was our new form of communication and feeding tubes and suction machine were totted everywhere we went.
You have never seen a happier baby. Even given the fact that she had asthma problems and trach infections at least every 2 weeks…she still fought and smiled and inspired everyone she ever met.
After 2 ½ years, Ryan got her trach removed. For the FIRST TIME we heard her voice!!! SO beautiful!!!!. She went on to beat her next battle. She got rid of the feeding tube!!!!
At 3 years old Ryan started Equine therapy to help with her trunk control. She still wasn’t able to sit on her own with out support from her hands. She also couldn’t speak more then 1 word at a time bc she didn’t have the breath. After 3 months of therapy Ryan was SINGING!!! In 3 ½ years we had NEVER heard her sing.
Ryan is still on oxygen at night bc of her central sleep apnea. But she has fought her way through everything else. She has had more obstacles in 3 years then most adults have in 5 life times. And she still wakes up everyday smiling, bright eyed and bushy tailed. Ready to take on and learn as much as she can. You can not meet her and not be touched by her infectious smile and personality. With her sweet voice she will melt your heart.
SO this is WHY WE ARE FIGHTING SO HARD for her now. Ryan uses a wheel chair to get every where she goes. Even after 3 months in the hospital, 25 surgeries, she is the happiest little girl you will ever meet. She never cries or gives up. Ryan is a fighter, she is a warrior, she is an inspiration. SHE IS AMAZING. She has fought so HARD to be here with us and has changed us as a family, as individuals so much WE ARE DETERMINED to give back to her. Everything life offers her - we will find a way.
We started this page to raise money so that we could take her internationally to get stem cell therapy. and we did. With the help of so many we were able to go. And it did help. Ryan had central sleep apnea and had to wear oxygen to sleep, now she doesnt. We were getting ready to start fundraising again to go back, but we started hitting medical issue after medical issue (not at all related to the stemcell)
March 2015 Ryans augmented bladder perforated, spilling into her stomach and causing Ryan to go septic. Severely septic. We almost lost her. The doctors were preparing us to not take her home. BUT we did!! Thanks to the amazing drs and nurses that never stopped! Even after 5 surgeries, 2 weeks in a coma, and 7 weeks in the hospital - she beat all odds and made it. My baby is a fighter. Even after all that she is still smiling and as humble as possible. So many people have reached out to ryan, sending sweet messages and cards and little gifts here and there. These little things, are huge to her.
I created this page as a way to reach out, so that all the people all over the country who have been praying and rooting for her, could follow her journey and keep up with her. Ryan is a spit fire and a trail blazer. i cant wait to watch this little girl move mountains. and we are so glad we get to share her story. And hopefully touch others who might be dealing with some of the same stuff.
Hope, Love, And prayers can move mountains. Never give up ♥
Alot of people ask me what they can do to help. Write her a letter or send a card with a message about how you are rooting for her =)
If you have a chance feel free to write her a note. I will save each and everyone in what im making, Her LOVE BOOK. So that she will always be able to look back on how many people are rooting for her =)
Ryan loves Mermaids, Disney princesses, barbie and YODA lol =)
Thank you. and GOD BLESS EVERYONE OF YOU
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