Thank you so much for thinking of our family. Kynslee's story is very, very long, but here is a condensed version.
Kynslee was a happy, healthy 14 month old in April of 2016. On April 22nd she woke up without the use of her entire body. Over time she also lost the ability to eat, she has trouble swallowing, she has many seizures per day, swallowing just her saliva is difficult, she often gets sick and is susceptible to pneumonia and aspiration, she doesn't have most of her vision, cannot talk and still doesn't have use of her body, unable to even hold her head up.
We have been to many, many hospitals starting with the ER at Spotsylvania Regional. We've also been to VCU, John Hopkins, Children's National, Children's of Philadelphia, Children's of Wisconsin and Kennedy Kreiger inpatient rehab facility.
We're almost 2 years into this journey and not one of these hospitals has been able to tell us what happened to our daughter, how or if it can be "fixed" or where to go from here. What we do know is she has had every genetic test done that is available and they are all normal. Her brain has shrunk and she has white matter all over her brain, but no one knows why.
Kynslee faces many struggles each day. She's currently on the ketogenic diet for seizures in addition to 2 seizure medications. At first the diet did wonders for the seizures, but now she continues to have many seizures a day. She's also on 2 reflux medications, but still spits up multiple times daily. In the future, she may need a procedure called nissen to prevent the spitting up as it can cause aspiration which is extremely dangerous for Kynslee. She recently had a sleep study done which revealed nothing except that her eeg is "not normal" (duh). She also had double hip surgery in March where they cut the tops of her femurs, put them back in socket and placed a screw and plate to hold them in place. She's been in a wedge for 6 weeks and getting her used to being without it is proving to be another struggle. In one year she'll need another surgery to remove the plate and screw. In total, Kynslee is on 8 medications multiple times a day and several vitamins and supplements.
This life changing event has completely changed the lives of our entire family. While our 9 year old is an amazing brother filled with patience and love, it is still extremely hard for him. Dan and I are both working, but I have to take so much time off for appointments, hospital stays, etc. that I don't make very much and it's always a struggle to make ends meet.
Right now we live day to day. We cherish the good days and even the smallest of milestones. Without knowing what the future holds we try our best to get through the bad days with grace and always advocate for the best care for our sweet angel.
Your support means everything to us and we are forever grateful for your love and prayers.