January 28, 2013

"It is not enough to trust God that what I fear the most will not happen. I have to trust deep enough to know that even if that (that I fear the most) does happen, He will take care of me."

The day before Marlee's audiology appointment on January 28, 2013, Greg asked me if I had prepared myself for the worst. The worst being that Marlee's hearing loss had progressed to the point of no response in either ear meaning profound hearing loss in both ears. I told Greg that no, I had not prepared myself for that and I would not. I just could not.

Our last audiology appointment had been on New Years Eve when we were devastated with the news that Marlee's hearing loss was no longer only in one ear. In fact, the hearing in her good (right) ear had gone from normal to a severe loss in less than three weeks. There are no words to describe that day or the heartache we felt as we held our sweet girl not understanding why or what was causing her to rapidly lose her hearing.

On the morning of the 28th,  during Marlee's nap time, although I had determined to not prepare myself for further bad news, The Lord graciously prepared me anyway. He brought to my mind truths that began to take root during a Beth Moore conference I attended eight years ago in Oklahoma City. I still knew where my notes were and was immediately directed to the quote at the top of this post. I had been trusting God to heal Marlee, but He was asking me to trust him even if He did not. He reminded me that I could not trust him conditionally and that "If what I fear the most does happen, The Lord knows that my life will have greater purpose because of it." He led me to this verse that somehow I don't think I had heard before - or maybe this was just the first time it really meant something to me. "He will have no fear of bad news; his heart is steadfast, trusting The Lord." Ps. 112:7 I remember crying as I realized that The Lord was preparing me for that day.

He began to give me other verses that I then wrote out on index cards. These verses came with me to the appointment that day. I held Marlee and those index cards through the whole test.

"I know whom I have believed, and am convinced that He is able to guard what I have entrusted Him for that day." 2 Tim. 1:12

"Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; He is my fortress, I will not be shaken. Ps. 62:5-6

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." Hebrews 10:23

The other verses were: Ps.23:1, 2 Cor. 1:9, Deut. 1:31, Zeph. 3:17, Ps. 40:1-3, Isa.40:10-11, Phi.4:6-7, and Josh. 1:9.

Greg came home from work that morning so we could go together to the appointment. Marlee slept the whole way there.

We parked in the parking garage at Baptist East and walked the by now familiar path to the doors of the hospital. I stopped before the doors opened and just cried. I did not want to go in. I did not want to hear what at this point I felt was almost certain. I continued to wipe my eyes as we sat in registration, as we walked to audiology, and as the audiologist placed the electrodes on Marlee's head for the 5th time in her life. However, as I held her during the normally 3 hour long test, I stopped crying and can honestly say I experienced what could have only been the peace that passes all understanding that God promises us. The test was much shorter than normal, and the audiologist was not looking as intently at the computer screen as normal - I knew. She was not having to read the results as carefully because Marlee's brain was simply not responding to any noise. The ABR (Auditory Brainstem Response) test measures the brain's response to sound. After testing, our audiologist asked us to move to another room where she told us the results - no response in either ear. What I had feared most had happened. Marlee had lost, for all practical purposes, all of her hearing, yet in that moment The Lord gave me peace. The "sentence of death" we felt on New Years Eve was replaced with peace. The sadness and even fear were not gone, but our trust had become greater.

On that day he gave me 2 Corinthians 1:9 " Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead." Today I can also say verses 10-11. "He has delivered us from such a deadly peril, and he will deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

So many of us have testimonies like this in our lives. I thank Him for loving us and being so attentive to the needs of our hearts.

Here are a few more pictures from two of our audiology appointments:

1st appointment - October 27th, 2012

November 30th, 2012

Marlee's Miracle Day

Four weeks after her cochlear implant surgery, on October 28th, 2013, Marlee's implants were turned on! We were excited and anxious and not sure what to expect. We were prepared that hearing sound may scare her but also hoped for a great response! A smile or tears, either way, would tell us what we needed to know - Marlee was hearing! 

We met our parents and Melissa Thompson at Memphis Oral School early that Monday morning. Melissa is my sweet friend from Trinity, also a speech therapist who works with the deaf education program in DeSoto County. The day of Marlee's first hearing test, Melissa was one of the first people I called. She has been with us every step since. I was thrilled to have her join us and video Marlee's big day!

Marlee wore a special outfit for the occasion. Her shirt had an elephant with music notes and said "Make some noise"...so that's what we did!!

The appointment began when the audiologist, Dr. Elizabeth Domico tested each electrode which had been implanted into Marlee's cochlea. We could not hear the beeping sound when each was tested, but Marlee could. The first response we saw happened when the electrodes were tested in her left ear. You will see in this video that Dr. Domico cautions that Marlee may or may not be hearing sounds when she responds - but what do you think?? We think she heard something!!

                                                         
Next, Dr. Domico programmed the left processor and placed the magnet on Marlee's head. She began talking, and Marlee HEARD her! Not only did she hear her, but she gave Dr. Domico her signature wave :).

                                           
After programming the right processor, both magnets were placed on her head. This time the sound scared her. Her lip began to tremble, and she cried. Of course, she quit crying when we gave her the toy of all toys - my iphone. In this case, crying was a great thing because it meant she was really hearing!

Think of the implant like a computer with an internal and external component. Both work together to bring Marlee sound. The external component is programmed with a "map" which determines the level of sound she hears. The internal component contains electrodes which are stimulated according to the current "map." We go back to the audiologist for mapping each month until the implants are at the level where she is hearing as she should be. In between each visit, I am able to increase the "volume" by using a remote control to change the program on each processor one ear at a time.

It was a wonderful morning!  We left MOSD several hours later with big boxes of equipment and minds FULL of new information on how to work and take care of Marlee's new and very expensive "ears"!

On the horse outside of MOSD.

That evening we celebrated with an activation party for Marlee!  After all, this was her hearing birthday and it needed to be celebrated! We thought Marlee may be overwhelmed with all of the new sounds, but she did very well. The best part was seeing a serious look come over her face when she heard something. It was as if we could see her "wheels turning." The processors (the part with the microphone) would not stay on here ears, so they dangled most of the night. We later discovered that headbands hold the processors on very well!

Here are some pictures from our celebration!

With her Grandpop and Hunt

She loves her Gran!

Listening to her Aunt Lissie!

With her buddy, Uncle Hunter

And her Uncle Robert

Then it was time for Marlee to hear us sing Happy Birthday!!

It is fun to have two birthdays - one real birthday and one hearing birthday!

Her Mimi fed her the delicious cake!

We all watched Marlee's activation video from that morning.

And played with new toys that made noise!

Marlee found her new equipment!

LOTS of new equipment!

After a year of what if's, whys, and tears (with lots of reasons to smile too) the Lord gave us a miracle day to celebrate His work in Marlee's life. It is an experience none of us will forget, and it was just the beginning of Marlee's hearing adventure!!

First ENT Visit

One year ago tonight, we anxiously awaited Marlee's first visit to her ENT, Dr. Bruce MacDonald. We were going with a diagnosis from the audiologist of bilateral progressive sensorineural hearing loss. We had left our audiologist appointment on that New Year's Eve with a sense of urgency to get to the ENT. In fact, I tried to move our appointment up because 17 days was simply too long to wait to know what could be going on to cause this rapid hearing loss. This is the picture and verse I posted on Facebook one year ago tonight.

"The Lord is good to those who wait for him, to the soul who seeks Him. It is good that one should hope and wait quietly for the salvation of The Lord."

Lamentations 3:25-26

I think I clung to that verse because all I knew to do at the time was to seek Him and to wait and hope. The reminder that The Lord was good even during that scary time of many unknowns brought peace.

The day of the appointment was one of our only "snow" days last year. In fact, our audiologist told the ENT that he should not close his office because we WOULD be there no matter what. Sure enough, we were some of the only patients in that big UT medical building. 

Here is Marlee bundled up in the car on the way to meet Dr. MacDonald.

We did not leave the ENT that day with many answers, however, we did not leave in a state of emergency - which was all I asked for. I felt like the first big appointment (other than audiology appointments) had been checked off the list. Dr. MacDonald referred us to a cardiologist and an ophthalmologist and would later refer for an MRI and CT scan.   Normally we would have also been referred for a kidney ultrasound (because interestingly the ears and kidneys develop at the same time before birth), but Marlee had an ultrasound after she was born. Each of these doctor visits would help to rule out any syndromes that could be related to her hearing loss. During these same weeks, several pediatrician referrals to a GI doctor, a neurosurgeon, and for x-rays were also thrown in there.  For someone who has battled fear her entire life, this was a season of learning to try to live calmly in the midst of a storm. It was a time of learning to focus on "what is" and not all of the "what if's".  All I could do was what I am learning all parents must do, entrust their child to the One to whom they truly belong. Not one minute of it was easy, but he taught me that He is good and His plan would remain perfect no matter the outcome of the appointments. I continue to praise him for good reports and no other health related syndromes, but I have to remember that his goodness would not have changed even if the outcomes had been different.

Marlee on January 15th, 2013 before we left for her ENT appointment.