Ainsley’s story
PRAYERS FOR AINSLEY GRACE
Ainsley was born on January 24, 2017 with a condition called Osteogenesis Imperfecta (OI). OI is a genetic condition that makes her bones very fragile. To help you understand her fragility, when she was 8 months old she had her first orthopedic surgery to rotate her left leg down and when the surgeon came out of surgery he described her bones as “wafer thin” and told us they don’t really break, they “mush” because they’re so fragile.
When we were pregnant with Ainsley (a miracle in itself but we don’t have time to get into the long version of stories here), we learned at 18 weeks that something was “wrong.” We followed up the next day with a specialist and they confirmed something wasn’t right and spent the next 6 weeks going to the doctor often and every time finding something new and terrible. First her arms and legs were very short, then she broke her femur, finally her skull was so soft it moved under the pressure of the ultrasound head and they sent us to get extensive diagnostics. Long story short, there were a lot of doctors, a lot of tests, and it ended with them telling us she had a possible brain bleed but they didn't know a diagnosis. We went home heartbroken.
Fas forward to her delivery. From the very beginning, Ainsley didn’t like to follow the rulebook and delivery was no different. She came FAST! From the time contractions regulated to the time she was coming was less than 2 hours. The whole time, doctor after doctor kept coming in to make sure we understood she wouldn’t likely make it out of the delivery room. God had bigger plans! We had an emergency C-section and when she cried it was the most beautiful sound! She was born with so many fractures radiology couldn’t count them all. They did give us a list of the bones that were broken at least once and it was nearly all her long bones and most of her ribs. Still she fought for her life and we, along with our friends and family, prayed. 5 weeks later, we were going home with our baby girl and told “2 years would be a long life” for Ainsley.
At her 2 month check-up we learned that every bone had been re-broken at least once. At 3 months old she developed hydrocephalus and had her first brain surgery and a month later was her second brain surgery when they placed a shunt. This was also when we learned she had a chiari one malformation and basilar invagination (BI) that her neurosurgeon told us was inoperable and “will kill her before we can do anything about it.” At 7 months old she had her third surgery to place a g-tube. Finally when she was 8 months old we found a neurosurgeon who was willing to operate on her chiari and BI when necessary. That is when we first drove 11 hours to Delaware for her specialists who we now can’t imagine life without. At 9 months old she had a 3-in-1 surgery where the OI neurosurgeon replaced her shunt (it had malfunctioned), she got a port placed (she gets an infusion every 8 weeks), and her left leg was rotated down and straightened. We now go to Delaware every other infusion and for all planned surgeries.
When we were pregnant, God led us to John 9:1-7 and told us the same thing He told the disciples when they asked who had sinned that this man was born blind. Jesus responded, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” God has gifted Ainsley with an incredible story and even more incredible spirit that overflows joy regardless of her pains or struggles. He has a big plan for her so “the works of God might be displayed” in her and all 3 of us are overjoyed to watch that unfold every day and with every one of your stories that we hear.
Regardless of all she has gone through, Ainsley is one of the most joyful, giggly, goofy little girls you’ve ever met! She loves to make people laugh and will laugh with you all day long. Yes, she does have her fair share of struggles but I don’t know anyone who doesn’t struggle in some way. Ainsley chooses joy. We as a family choose joy in Christ and He has worked miracle after miracle to keep our little warrior surviving and thriving along the way! We invite you to embrace and love the differences with which God has gifted Ainsley. So please, laugh, pray, and celebrate life with us every day; we all know Ainsley will be!
If you feel led to help us financially provide for a few specific needs for Ainsley, feel free to visit our GoFundMe page to see the needs and how to give! God bless you!
Gofundme page on facebook
Credits: Prayers for Ainsley Grace