Looking to the Light (Part II)

(To read Part I, click here)

Praise God everything looked normal in the MRI.

My husband and I definitely know that God has his hand in our journey with Ella Marie. We know that "our plan" is not always the same as his. Looking back, we can see how God has prepared us for this point. For instance, my degree is in elementary education. I have had the opportunity to work with a child with a cochlear implant. I love to teach children how to read. Since Ella Marie will most likely have difficulty in her oral language development and reading and writing at first, I have the patience to work with her and try many strategies with her. My husband is the most loving and patient person I know. Ella Marie already has him wrapped around her little finger. He is such a hands-on daddy. We are fortunate that Ella Marie will have parents, family, therapists, and friends committed to her pathway of learning.

Where We Are Now:

Ella Marie will be having surgery in September, 2010 at Children’s Hospital with Dr. Woolley as her surgeon. She will be 15 ½ months old. Actually, Ella Marie was scheduled for surgery on August 9, 2010, but caught bronchitis in late July. Children’s Hospital informed us that any time a patient has an upper respiratory issue, surgery must be rescheduled for 4-6 weeks from the time symptoms are gone. As mentioned above, we had a feeling that Ella Marie would be a candidate for bilateral implants. We were definitely headed in that direction. We wanted them as fast as we could have them. We battled with the decision on having simultaneous or sequential surgeries. On the one hand, one surgery means one recovery, activation, and stress on us. On the other hand Ella Marie has done extremely well with her hearing aids. According to testing she is not showing a delay in language at this time. I have read a lot of research and had her tested multiple times at multiple hospitals/pediatric audiologists/cochlear implant centers, and decided to try one implant at this time while knowing that we may choose to implant the other ear soon. It was a very hard decision because this was a complete 180 in the decision that we first thought we had made earlier in the process. Ella Marie attends Auditory Verbal Therapy at the Hear Center every other week and will receive therapy weekly following her surgery. Through genetic testing, we discovered she has Connexin 26. I have started a blog for Ella Marie describing our journey. I am currently typing up all of my written notes, and it should be updated soon. You can access and follow our blog at Learning to Hear God. In the blog, I try to cover all of the activities and developmental play that we engage Ella Marie in which has made her blossom.

How God Has Worked In Our Life Through Ella Marie

I titled this “Looking to the Light” a very special reason. Being our first child, Ryan and I had nothing to compare Ella Marie to. If she was crying, we didn’t know if she was hurting or if it was due to just being a baby. Being prone to ear infections, we knew that she cried a lot from those. One thing that we noticed when she was very small was that when she was crying or very upset there was one thing that would make her feel better and comfort her. She loved the chandelier light in her bedroom. When she would start crying uncontrollably, Ryan or I would stand under the chandelier and raise her up and down under the light. She was fixated on the light. It always made her feel better. What a lesson to us! Throughout this process there have been a lot of ups and downs. There have been a lot of days where I cried and wanted things to be different but Ella Marie taught us that we need to “Look to the Light” just like she did. Just like Ella Marie, when I looked upward I felt better. When I feel like life has gotten so complicated, Ella Marie was teaching me a simple lesson “Look to the Light”, Jesus Christ. Although Ella Marie’s hearing loss was not what we wanted, when we focused on the Light, God began to unfold His plant on how he had prepared us our whole lives for having a little girl with hearing loss. From teaching a first grade student in a previous year with a cochlear implant to my career choice as first a first grade teacher and currently university professor where my focus is early childhood language and reading, to providing us with supportive family and friends who all pitch in and are committed to supporting Ella Marie. God taught me this lesson through our little girl. We are committed to serving as a resource for parents of children with hearing loss.

Below, I have listed a few Bible verses that have spoken to us throughout this journey.

When Jesus spoke again to the people, he said, "I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life." John 8:12 (NIV)

Look to the Lord and his strength; seek his face always. I Chronicles 16:11 (NIV)

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 (NIV)

Lisa Clayton, mom to Ella Marie


Looking to the Light (Part I)

We are new parents to our first daughter, Ella Marie. She was born in April 2009. Our journey of raising a child who would need extra help started the day we were leaving the hospital. Ella Marie did not pass her newborn hearing screening, and we were told not to worry that it was probably just fluid. Of course, as a new parent I was very worried. Everyone tried to tell me not to worry, but those who know me knew that I would. I remember my husband Ryan holding Ella Marie in the hospital and making this statement, "She is such a special girl and she is going to accomplish special things."

At that point it was almost as though I knew something was wrong. Of course, my husband was just talking about Ella Marie and did not think that this statement would linger in my mind. I too know that Ella Marie is special and will accomplish great things and look forward to watching what God has in store for her.

After leaving the hospital 48 hours after her birth, we went home and spent time as a family. We went to the pediatrician's office for her 1 week checkup. She did not pass again at 1 week and we were told not to worry that they still saw fluid in her ears. At two weeks old she was diagnosed with double ear infections so the doctors continued to believe that she may not be passing because of fluid. At five weeks old we went to Children's Hospital in Birmingham, AL and they told us that as hard as it may be we needed to wait another six weeks to determine if it was fluid. At this same visit tests were run and she failed those as well. Finally after multiple failed tests I asked for a referral to Shea Clinic in Memphis, TN. Again, Ella Marie failed her tests there. They set up another appointment about a week or two later and at one day before Ella Marie turned 3 months old a sedated ABR (Auditory Brain Response test) told us that she was deaf. She did not respond in either ear at 90 decibels. Wow! We were shocked.

We thought she may have some hearing loss, but severe to profound hearing loss was not what we were thinking. So of course it has been an emotional roller coaster, but we also look forward to learning along with Ella Marie and providing her with the best chance for success. After finding out that Ella Marie was deaf, we learned that most likely she would be a candidate for bilateral cochlear implants. Before implant surgery can take place, you must go through a trial period of using hearing aids. She received her hearing aids at 3 1/2 months old. Right before Ella Marie turned four months old, Children's Hospital ran an MRI brain scan to see if her auditory nerves were present. Without nerves present Ella Marie would not be a cochlear implant candidate.
(to be continued)

Written by Lisa Clayton, Ella Marie's mom