When we look at this sweet brown eyed girl, it’s so hard to believe sometimes that it’s been only a little over a year since Elyana had her very first medical appointments after arriving in the US. She now sings clearly all her ABC’s, can recognize them all, counts, dances, teases, and can explain her feeling much more often than bursting into tears. She has a VERY tender heart that God has instructed to “handle with care.” As He has performed a healing on her heart, a healing in my spirit has taken place as well. Many of the things that used to matter me, and steal my joy….don’t anymore. Many of the fears that woke her with screams and punches in the air…..do not anymore. She rests. Is settled. She laughs. Throws snowballs and has the JOY of our precious LORD all over her face.
She has grown and chanaged by leaps and bounds! This once unsure, all too trusting little girl…..has learned what a family is, and is gaining better understanding and stronger, healthier boundaries with each passing day. She LOVES to play outside. Ryan had been wanting to take her outside so badly but we all took turns being very sick with the flu. One day Elyana turns to Ryan and says “It’s very hard to wait for you to pick me up and go outside play in snow.” I was amazed she understands so many things now and can vocalize them!!
We finally had the perfect (warm) day to head outside. Perfect snow packing day for snowmen and forts!
She simply adores her brother and sister. We often hear her say “I love my brother and sister.” Love and joy just pours out of this girl!!
At the end of the evening after playing for hours in the snow. She says “I had a good day playing in snow. It was very fun.”
She is still very nieve in some ways, but we shelter her when insticts prick us, and let her go and experience her surroundings when we feel at peace about a situation. There is so much we could share now that we can look back with clearer vision over the past year but know many of you are curious about Elyana’s results from the MRI Friday.
Yesterday was a full day that began with a long drive to Cincinnati, an appointment with Elyana’s neurologist, then an enjoyable visit to the Newport Aquarium. Other than John coming down with the stomach flu that evening, all went smoothly! She is a pro at getting her vitals taken. She can almost tell the nurse what to do next…lol.
They updated her charts, asked lots of questions, then finally shared her MRI results:
They saw a suspicious area at bottom of her spinal cord. They believe it could be a dermoid cyst or just abnormality with bottom of spinal cord. It did have a different color, which makes them suspect a cyst. We will see the neurosurgeon soon to discuss it since Elyana’s neurologist no longer performs surgery.
It would be a risky back/spine surgery to remove something we don’t even know is there for sure. So we need to talk first with the neurosurgeon and gather some information that could be associated with having a cyst. We need to test her muscle strength and bladder/bowel nerves to see if there is a decrease.
We will see the urologist to decide whether the two UTI’s & the extreme decline in potty training could be associated with the possible Dermoid cyst at end of spine. Dermoid cyst on the spine are known to cause damage to bladder & bowel nerves. Many children with Spina Bifida undergo urology testing yearly. It is the procedure Elyana disliked very much (hated) last time. But we are praying we get MUCH NEEDED information this time.
If we confirm it is truly a cyst, nuerology may decide to watch it closely for growth–but if it grows we are risking possible nerve damage. So we have some decisions ahead of us.
With surgery there would, of course, be a big risk opening up the spine. Since they would have things opened up already to remove the cyst, they would also do the surgery at the same time to untether her spine from the fatty mass under her skin. This fatty tissue is common with the type of spina bifida she has -lipomyelomeningocele. We’ve been told though that the spine will just re-tether to the fatty mass again over time. But the neurologist said it would definitely be worth doing while she is opened up. The re-tethering would be an “easy” procedure in comparison to the cyst removal.
The good news:
She has gained a little in her reflexes on left side. So that was great!! It actually seemed to perplex the neurologist. She was thinking that with the decrease in bladder control, that her reflexes might be decreasing also. Praise God that is not the case!!
We daily keep praying & believing His healing hand over Elyana and ask that He gives us and doctors wisdom to find the information needed to know how to proceed. We learned with her hips…that God certainly guides & directs our steps!! If you hadn’t read previous posts about her hips…a well-trusted doctor directed us in his best intentions to go ahead with hip surgery. But, our family doctor wisely advised we pursue a second opinion for the peace of mind we would gain. We took his advice and saw a orthopedic Dr in Cleveland. After MUCH detailed conversation and her almost pleading with us to wait, we decided to wait. She told us we still had a window of time to make that decision. After leaving her office that day I cried and we both rejoiced that she could continue to adjusting without surgery – and without being in a body cast for months. At her next orthopedic check up her hip had improved by 60%!!! Those are God-sized numbers because the orthopedic Dr. was shocked!!
God has truly proven with Elyana, from the VERY beginning of her little life as she was placed at the orphanage gate, that HE is her Father and she is the apple of His eye! Each of HIS children are.
He will cover her with His wings, and in Him we continue to trust. Regardless of the news, or what possibilities lay ahead. She is His, we are His, and when I set my heart and mind on that truth. I am grounded. I rest. And rejoice in hope.
The aquarium was Elyana’s first up close and personal encounter with animals. And she loves animals. She is curious about each one and just soaks up every moment. It was wonderful to see her in awe of the huge sharks that came swimming so close you could see thier gills moving and sharp teeth!!!!
As this big guy below came swimming up bearing it’s teeth she asked “why he have those scary teeth?” Then said “I like him! He nice!”
It always amazes me and speaks to my heart of our Creator when we behold what wondrous creatures He has made!!! Elyana was certainly amazed too! We let her sit there for a long time just watching. It was such a huge aquarium with all kinds of BIG sharks and sting rays.
She ewwwwed and ahhhhhed at EVERYTHING and had to pet every animal they would allow. She was even able to pet a shark (I didn’t get a picture, but she giggled as it passed under her fingers). This turtle got her full attention when it was her turn to pet it.
My favorite part was as she was petting…. it kept poking its head back inside when she would touch it. I told her maybe he was scared of her. So she looked concered…then smiled at the turtle, so he would know she was nice. The smile was priceless to me. How can one smile show such a glimpse into this girls heart. Her kind spirit and love that is now taken root in her heart shows so clearly in it.
As I looked back at our sleepy girl I couldn’t help but thank God for every moment we’ve been gifted. Not every moment has been as peaceful as this picture. But through the pain, we’ve been held….she’s been held. And through the joy….I beleive our Father has smiled along with us. And when we’ve made mistakes….HE has gently redirected and lovingly chastened us as parents. It’s in HIS love we are held. We are chastened. Healed and taught. And free to be what HE originally created each of us to be. What Satan tries to destroy….HE turns into beauty!! What is rejected….He loves!!!
We will continue to serve and trust in this love expecting wonderful things in the months ahead as we are in the beginning stages of the next adoption. I cannot even imagine what God has planned.
Her brother simply adores her and made this snow-heart for her. (to eat!!) Are there rules against eating snow? It wasn’t yellow. 🙂
Happy (early) Valentines Day!
One of my favorite verses we’ve taught Elyana and she often repeats is…
“We love because HE first loved us!” 1 John 4:19