Wednesday, April 18, 2012

2 months (plus a week and few days) home

This past month has been filled with lots of ups and downs, but God has been consistent! In mid March we received the results from Rebecca's sedated MRI, here is what we know:

At some point in Rebecca's very earliest days, she suffered major brain trauma. We do not know and will never know how this happened, but it likely happened one of three ways. Either she suffered a stroke while in utero, suffered a stroke during pre-term delivery or someone injured her after birth. However it happened, the damage to her brain is extensive. At this time we still don't have a good grasp on what this means for her future. We hope to get a lot of questions answered during her Neurologist appointment in early May.

The day before we received her MRI results, I took Becca to the eye doctor. During this visit the eye doctor discovered that she has "pale optic nerves". I, of course, came home and began doing research on pale optic nerves. My fears for her vision were confirmed the next day when we got her MRI results. Becca has CVI or Cortical Blindness. At the time her brain was injured her optic nerves were injured as well. CVI is not correctable with glasses because her eyes are functioning correctly.

What does that mean?
Well, her eyes are functioning correctly, however because of the damage to the optic nerves her brain is not receiving the information. So, she can see light and dark and can see things really close to her face. Since she can't tell us, we don't know how well she is seeing the things she can it fuzzy, blurry, etc.

Where are we going from here?

We have been referred to South Carolina's School For The Deaf and Blind (which is located here in Spartanburg for those of you reading this who do not live here). They will be coordinating her therapies. Rebecca will start Occupational, Speech, Physical and Vision therapy very soon. If at some point she is able to walk, she will also receive Mobility therapy from the Deaf and Blind School. These therapies will be free until she is three, which is only about 4 1/2 months away. So, we are in the process of applying for insurance for children who have disabilities. This insurance will help us pay for the therapy she needs.

How are we (Bucky and Julie) doing?

God is a God of peace and comfort and in Him we have no reason to fear! We, of course, have cried more in the past month than we ever have. Not because we are disappointed or unhappy, but because we love her so much and it is natural for us to mourn the disappearance of our dreams for her (falling in love, getting married, having babies). I found myself the first few days worrying over whether or not we needed to sell our home and get a ranch style house because we can't carry her upstairs forever. Or whether or not we are going to have to purchase a wheel chair accessible van. I had to put all those worries behind me and take this one day at a time and sometimes one minute at a time.

Becca is growing and changing everyday. She is a joy to have in our home and in our family. She is able to say "mama", "papa" and "hello". This past week she copied me when I said "I love you" It came out like, "Ga Ga Oooo" but I think it is remarkable, given her brain injury, that she got all the syllables in there. She no longer needs a pacifier or bottle to soothe her, she is comforted by my voice and touch. If she is awake in the morning when I go in and get her, just the sound of my voice sends into smiles and giggles. She is becoming more alert and aware and less like she is in her own little world. Her special needs has just etched her into our hearts a little bit deeper.

We, of course, are thankful for all of you who have brought us a meal, helped with my other children, and prayed for us. Our church family has been an amazing blessing and we are so thankful for you! Please continue to pray for us.

1 comment:

Lilly's Family said...

We met in Guangzhou at the Victory - 2 SC families adopting SN children in China - amazing. I have been checking your blog periodically since we both left China. I will be praying for all of you. How blessed Becca is to have a family who accepts and loves her for who she is. Our Leiney Grace had heart surgery last month and is doing well in her recovery.