God Has a Plan- Chapel Update

posted in: Family | 0

While we were walking through the adoption process to bring Chapel home, I purchased a shirt from a ministry called Orphan’s Hands. The front of it says in signs, “If you were born, God has a plan.”  I’m wearing it in the above picture with my three daughters.  I love this profound statement. There is not a mistake on the face of this planet.  Regardless of the situation or the circumstance, for every life… God has a plan and a purpose.

Our family tried diligently during the first half of our adoption process to learn basic sign language. This was a “just in case”  kind of effort, honestly. I certainly wanted to learn basic signs for early communication help, regardless. Chapel has bilateral microtia.  That means that she has an outer ear deformity on both sides, or in her case she has no outer ears at all.  It is actually incredibly rare for someone to have an outer ear deformity and their inner ear to not work properly. This is because the outer ear forms at a completely different time in utero than the inner ear.  Since we have had Chapel home we have been certain that she is hearing different things. We have actually hidden behind her and made sounds that she turns to.  There have been other situations that have caused us to be certain that she was hearing a certain amount.

I’ve received many messages and texts asking about Chapel and how she did with her testing this week.  Thank you so much for that. We had a meeting with a geneticist on Tuesday. This was a very insightful appointment. The doctor who we met with is excellent.  The point of meeting with the geneticist is to hopefully begin connecting some dots as to why Chapel was born with microtia and also has the facial palsy and extra digit.  This is important to know because if the things that Chapel deals with are due to some kind of chromosomal or genetic issue, there will probably be other things that need to be checked out as well and things that we need to watch for that go along with conditions connected with these.

We were able to take a look at x-rays of Chapel’s hands in comparison with an average 2 1/2 year old’s hands.  It was very shocking. Chapel’s bones look the same as a child who is about 10 to 11 months old. The geneticist confirmed what we were sure of and that was, Chapel has been malnourished and “disused” as the doctor put it.  Orphanage life does way more than simply brings forth mental and emotional delays in children. It affects their very bones and inner progress.  Knowing this sort of thing is so important in parenting children from institutions. People often times say things like, “Well, why isn’t she walking yet?” Or, “Why does she still drink a bottle?”  It is so much deeper than this. You do not just pick a child up from an orphanage and expect them to meet the typical milestones of a child their age.  In fact, while their birthday might show that they are old enough to be walking, if they have been severely malnourished, their bone structure may not support it in the same way that a child who is only a few months old could not support their own weight to walk.

Thankfully, Chapel has made so many leaps and bounds over the last few months. Her weight and height have increased and also her strength has increased dramatically. Because of all of this progress, the geneticist does not think that Chapel’s needs are  related to a chromosomal disorder. He said that typically in a chromosomal disorder, a child would not be able to make the progress that we have seen in Chapel and just a few month’s time.

On Wednesday morning, bright and early, after a night of little sleep we made our way to the hospital for Chapel to have a sedated CAT scan and ABR hearing test. Chapel began running fever during the night and we were concerned that they would not go ahead with the testing that was planned. And when we actually checked her in and we found out that typically they will not sedate a child who is running fever. We sat in the room and Danny and I began to pray that God would protect Chapel and that she would be able to have her testing. It is quite the act of Congress to be able to drive a few hours out of town and also find childcare for seven other children and we did not want to delay on receiving the info we need to make our next steps to help Chapel.

 

They did decide to continue on with her CAT scan and hearing test. The ABR is a brain stem response test that can measure whether the inner ear is operating properly and it can also tell what degree the patient is hearing.

We waited for what felt like an eternity for Chapel to be finished with this testing and for us to speak with the audiologist. After around an hour and a half the audiologist finally came out to talk with us.

To sum up her words, she received no response at all from the ABR hearing test. According to the test, Chapel has no hearing. She is profoundly deaf. The times that we’ve thought that Chapel was hearing, she likely was feeling the vibrations which she is probably very sensitive to.

Although you prepare yourself for any possibility throughout the adoption process, it still feels entirely different whenever you are given those words in a hospital hallway.  I could feel the corners of my mouth beginning to pull downward, sort of like when I was in fifth grade and remember trying not to cry in my English class in front of my friends.  I did not want to break down in front of the audiologist, but of course, I was greatly disappointed to know that my daughter can not hear.

The audiologist explained to us that while no other hearing device would work for Chapel, she could possibly be a candidate for cochlear implants.  We will find out in the next few days what the results of the CAT scan were. If the structure of her inner ears are in place, she could receive implants that would help her to hear. Without that structure in place Chapel will not be able to have cochlear implants- according to the audiologist- her one form of communication would be signing.

I know and understand that people who are profoundly deaf and who either choose to not have implants, or are not candidates for implants, can still live very full, happy lives. We love our Chapel now more than ever- but hearing the report was sobering to say the least, since we felt certain she was hearing.

Will she ever, in this life, be able to hear the sound of breathtaking worship as her brothers and sisters in Christ lift their voices together? Will she ever hear her husband’s voice vowing to love and cherish her all of her life? Will she ever hear the giggles of her own children or know the awing sound of waves crashing into a shore- or the crash of thunder? These are the human what-ifs my mind is tempted to wander to. While I long for her to hear these sounds that I cherish- I know one thing for certain. My Chapel is fearfully and wonderfully made. She is a treasured daughter. I know that Jesus very clearly directed us to her. I can’t bear the thought of what her life would’ve become had she remained in an orphanage with little nutrition and no interaction. He did the impossible to send us to adopt her- and her beautiful new future is unfolding each day. We believe and know that God still does the impossible! We are praying for a miracle in Chapel’s hearing.

On our drive home Danny and I shared some tears and good talks. We were both overwhelmed with the knowledge that God loved us enough to allow us to be precious Chapel’s parents. What an honor that he would trust us with this treasure. We love her now more than ever. She is a vibrant, sassy and giggly little girl who is blossoming daily. God has beautiful plans for this darling- I know that for sure.

Thank you for praying with us.