Happy Friday to you all!
Our last 2 Fridays have been spent visiting Cincinnati Children’s. Last Fri was Elyana’s MRI & today we went back for her orthopedics appointment when hip surgery will be.
So far, we are extremely satisfied with the care she has received there! At both the downtown and Liberty campus. (Thank you again Rickle family!)
We are so grateful for all the information gathered over the past few weeks & have a better idea of what’s going on in her tiny, very determined body! None of the results were shocking, as we understood with any special needs adoption, there is not usually a full medical history from birth, making anything possible.
We knew at first sight of Elyana, that she was ours and we were hers and we would, as with any biological child, do whatever it takes to love & help her through!
The nitty gritty-
We received Elyanas MRI results early this week. Good news & bad news both. Her brain is fine 🙂 But, her spinal cord is tethered to the fat under her skin, so there is a 1 in 3 chance back surgery could be in future. We will especially watch her in growth spurts-for pain, decrease function with bladder/movement. If we see any of the above signs, then they would have to surgically de-tether the spine- but typically the spine will re-tether again. This means the back surgery would only provide a temporary fix.
She also has a pocket of spinal fluid on the spine that they are keeping a close eye on. She will have another focal MRI in 6 months. There is also has a follicle cyst on her ovary, and a spot in her lung-which they think may be no big deal, but we may need chest x-Ray for.
Info gathered today.
We found out a few months ago Elyana has a subluxated (dislocation) of her left hip. Now that the orthopedics Dr. knows there is nothing severe neurologically at this point needing addressed, he is comfortable moving ahead with surgery.
He feels it would be most beneficial for her to have it as soon as possible, since she is now mobile.
She is projected to have her 1st (out of a series if 3) hip surgeries in September or October. We will find out in the next two weeks when her surgery date will be. After the first surgery she will be in a spika cast (covering from her chest, completely down to legs, with a bar between legs) for six weeks.
She will then have surgery #2 and be casted again for another six weeks, then have surgery #3 to remove hardware. Afterwards, she will be in a brace for three months, then only nightly bracing for the following three months.
Spina Bifida patients often have one weaker side of the body. Hers is the left. She walks with a bit of a waddle and even after surgery we are told to expect her to continue that way, because of the lack of left side muscle development.
The lack of muscle on the left has attributed to the hip not staying in place.
As she grows, possibly around six years old, she may need another surgery if the hip doesn’t stay in place with growth.
She will be closely monitored by neurologists & orthopedics, especially during growth spurts.
We are thankful Elyana will be able to continue enjoying her Summer before having to stay immobile! She is CONSTANTLY on the go!
Playing outside in the sandbox and swimming with Ryan & Jenna are the highlights of her day.
I talked to another adoptive mom in our travel group (Susannah) who says their Eli is going through the “mine” stage. Well, that is exactly where Elyana is too! Sometimes surprisingly cute though when she wraps her arms around me saying “my Mom !” Can’t help but love that, then I remind her I’m Ryan’s mom, Jenna’s mom & Elyanas mom. She does the same with all her family & toys! She’s just sorting things out in her mind & that means progress!
Elyana has come soooo far, and we give God all the glory for her healing.
Thank you all for your prayers & love throughout this journey! We are so grateful for you all!
We will be praying God prepares her little heart & body for upcoming surgeries!
We will certainly keep you all updated!