Its been a busy few months for Kynlee! At the beginning of April she had 2 of the largest strokes she has encountered. This didn’t hold her back from flying out to California to meet Spirit the horse. All thanks to the Oklahoma Make A Wish Foundation! This brightened her spirit and has kept her motivated to get stronger. At the end of April a softball benefit tournament was held to help Kynlee fly to Boston. Acta2 Alliance (www.acta2alliance.org) held their first conference and Kynlee not only got to meet many doctors who are researching this very rare disease but she also got to meet 7 other girls just like her. As we all know there is no treatment for Acta2 but there was information provided to help Kynlee live her best life.
Boston helped find an in-house rehab facility in OKC for Kynlee. Since her strokes in April she still hasn’t gained full function on her left side. She is unable to use her left hand and can’t walk without full assistance. Kynlee is a 4 year old full of spunk and always ready to go; so you can only imagine how hard and frustrating this is for her. Rehab is crucial in the 6 months following a major stroke. Kynlee has gained so much strength back but without this strenuous rehab we don’t think she will be able to gain full function.
So I am asking for your help to send Kynlee to physical rehab! Any amount will help and will be more than appreciated!
As always please continue to keep Kynlee in your prayers!
Below is Kynlee's story and where is all started!
Was told in gestation Kynlee would not survive because she had a micro-colon . The doctors told us she had a 10% chance of survival after birth.
-Kynlee was born at 33 weeks because of no movement
and then transferred to OU Children’s where she stayed in NICU for 2.5 weeks.
-Kynlee ended up having a neurogenic bladder.
-We found an amazing urologist at OU to help us through the neurogenic bladder issues and constant urinary tract infections caused by cathing.
-While at OU we were recommended a pediatrician to keep a close eye on the issues Kynlee was born with.
Mom was always concerned about Kynlee’s breathing and one side of her chest being higher than the other but the pediatrician put her off as a paranoid mom.
- Kynlee mad it to May 2017 with minimal health issues. On May 20th Kynlee had her first stroke. After about 15 hours at OU ER Kynlee was finally admitted to OU Children's. Extensive tests were done and 3 days later we found out Kynlee had a stroke and possible had a rare disease called Moya Moya. The doctors also reported Kynlee had a PDA but due to the stroke they wanted to wait till she gained strength to do more testing. Kynlee was in the ICU for a week and the doctors finally released her to go home on a blood thinner and Lasiks to hopefully help prevent more strokes.
- During this time mom found out she was pregnant.
- One month later Kynlee was admitted back to the hospital for 3 days because the doctors thought Kynlee was having partial seizures due to the stroke. After observation she was then put us on seizure medication and sent home.
-August 2017 Kynlee went in for a heart cath to find out she had a very large PDA. We also found out the PDA was noted in her charts at birth but her pediatrician over looked this issue, even after moms continued questions about irregular breathing and fast heart rate, and was never followed up on. We were declined surgery and dropped because they thought Kynlee was too high of a risk for surgery. We asked for recommendations and second opinion and got no alternatives.
- Mom contacted Kynlee’s awesome Urologist for help and he tried getting Kynlee into Cooks Children's Hospital in Fort Worth. Insurance was an issue so we had to continuing searching for other options.
- In November dad lost his job.
- Finally found an insurance that would be best for Kynlee but had to wait for the open enrollment and beginning of the new year before coverage would take effect.
-December mom was recommended to a new pediatrician for Kynlee and the baby on the way. Pediatrician also recommended Cooks Children's hospital and sent a referral to the Neurologist and Cardiologist. By the end of December Cooks Children's had Kynlee's records and images and wanted her there as soon as possible.
-The new insurance was finally accepted and Kynlee was admitted into Cooks Hospital on January 10th for 3 days inpatient care. In that short time we found out Kynlee actually has an AP window, has been having mini strokes, not seizures, has a smooth muscle disease that ties her heart, brain, pupils, and bladder issues together. So in 3 days at Cooks Hospital we found out so much information about Kynlee’s many health issues than we did in 7 months with OU. FRUSTRATING! Cardiologist wanted to do immediate heart surgery but due to a scheduled C-section on January 15th for the arrival of Parker we had to postpone surgery until January 26th.
- Kynlee had another stroke on 1/23 that affected her differently than previous strokes so we loaded up and went to Cooks ER. The doctors did a quick MRI without sedation and we were told no changes were seen after looking at the images. We stayed in a hotel close to Cooks the next 2 days were Kynlee had mini strokes both nights but seemed to recover from them quickly.
-January 26th Kynlee walked in for heart surgery at Cook's hospital. Surgery went just as expected and we finally felt a relief come over us!
-All her doctors couldn't believe her recovery and we were sent home after one week. We had a pretty quiet weekend; all 3 kids were over joyed to be under the same roof.
-Sunday came around and Kynlee was not able to use her right leg. We took mini stroke precautions, but Monday morning (while dad had his first day of work at his new job) she was still not able to walk. Mom called Kynlee's team of doctors in Fort Worth and was told to take Kynlee to OU for a short MRI to see what was going on. After 8 long stupid hours in the ER we were mediflighted to Fort Worth because Kynlee had the biggest stroke she has had. Made it to Fort Worth bout 9pm Monday night (2/6/18) and was monitored through the night. Tuesday morning, Kynlee’s team of doctors was in conference trying to figure out what they need to do.
-Since we have been here they have let us know her heart isn't strong enough to perfuse enough blood to her brain with her narrowed vessels caused by the Moya Moya disease. They are trying medications to raise her blood pressure to get blood perfused to her brain to prevent more strokes. Her Neurologist and Oncologist have been in contact with Boston Children's Stroke Center on their opinion and if they recommend brain surgery to help with the disease she has.
-We are still waiting on an extensive gene test to come back that will tell us exactly what her life expectancy is and a clearer picture on how doctors can treat and help Kynlee. Until then we will continue to be monitored closely here at Cook's Hospital in the Neurology ICU while the doctors continue to figure out what medications work best.
With family and friends we have been able to keep Parker at the Ronald McDonald House and out of the hospital but close enough for mom to come visit. We couldn't be more thankful for all their help and support!