Today's Hope

That last 2 days have been good for us. I feel that Ava has been growing and getting stronger. She is so very alert when she is awake and she really loves to look around. She especially loves her sisters. Last night I was showing my Mom and her friend how to sign A-V-A. I was unaware but apparently Emily was watching. This morning I saw Emily showing Ava how to sign her name. Then she was signing "I Love You" to her. Whenever Ava is mildly disgruntled I find Alexa rubbing her head, giving her a pacifier and calling her precious baby. Elaina will lay her head on Ava and suck her thumb. Ava loves it. Her eyes get bigger and she clams down when she knows that they are around.

Today Ava went to the last appointment in her 5 specialist marathon. She saw the ENT. He was encouraging and supportive. We began to hatch a plan to address Ava's hearing loss. These things will be on the back burner as we continue to get a picture of her overall metabolic health. We will be attempting to insurance coverage for the hearing aids. This should take 4-6 weeks. So I guess we could say that all Ava wants for Christmas is hearing aids. Depending on Ava's health and final diagnosis, she may be getting an inner cochlear implant at 1. That is a long way off. And I pray that we are afforded the opportunity to explore that option for her.

I am excited to have her receive her hearing aids. I vividly recall the day Eric's hearing aids came in while he was hospitalized. He was so awake and stimulated I had to take them out so he would sleep. When we found out we had a deaf child we were initially devastated. I was selfishly thinking about how Eric would look with hearing aids. But that moment changed it all for me. It was so precious. I can't wait for Ava to be able to hear us talk to her.

We got some news tonight from Ava's pediatrician. Some of her blood work has come back. This is highly medical and I am not a doctor so I will try my best to explain that which I don't fully understand. The lab work that came back was Ava's amino acid in plasma quantitative panel. There are 39 amino acids in her blood that we had tested. 38 came back 100% normal and the 39th was a smidgen low. This means that everything is good. How's that for watered down information? This is a good picture that Ava has the right amount of amino acids in her blood and so far the labs are showing good balance in her metabolism. We wait with hope that the other blood values are OK too.

It seems after tons of blood work and visits to 5 specialists we find that there isn't much wrong with Miss Ava other than the fact that she is a preemie who doesn't hear so well. There are small lab values here and a tiny VSD. But we are reminded that no one is perfect. Mutations in genes happen. Sometimes they can be physically devastating, sometimes they may cause loss of function. But we are all Created by God who loves us and calls us to His purpose. We may not understand why something happens, but we can understand that He will carry us through no matter how hard the situation is. Right now we are on an up swing and feel hopeful that we will not have to despair. I know hard times will come. But as my brother suggested we are going to "enjoy our hope" and gain our strength from the One who holds us in the palm of His hand.