We’ve got results from tests . . . Yea! But . . . no answers . . . Boo!
“We do not have an answer in this life for every adversity. When trials come, it is time to turn our souls to God, who is the author of life and the only source of comfort. “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you.” (John 14:27.)” --Elder Carlo Amado
Testing #1) Addie’s genetic test came back last month. This epileptic panel tests for 15 known causes of epilepsy. Addie’s results showed, “3 variances of unknown significance.” This means either (1) there is not enough data from other children with these same variances to make a correlation (give it 10 years and some researcher will assess the data again, find a pattern, name the epilepsy after Addie or himself, and add it to the Epileptic panel); OR (2) everyone has variances on their genes & these are some of Addie’s. Addie is still seizing A LOT . . . still has hundreds of seizures/day. The seizures hinder her development in a big way--the cognition side of her brain is not really able to function--we don’t know if she can see or hear us or if we comfort her?? There is little to no emotional response from her as of yet. Its like Chris said on Sunday, “I never knew when they said she has epilepsy that it would mean my baby would be brain-dead.” But--oh, how we adore her!
“Isn’t your purpose for being on this earth to experience this trial? Isn’t it to accept all the trials of this life for what they are and then leave the rest up to the Lord? Don’t you think that this problem will be resolved when we are resurrected?” --Elder Koichi Aoyagi
Testing #2) Last month, we received a phone call that the State of Utah required us to get a lab test for Addie called “Lymphocyte Subset 7.” This simple blood draw tests for Severe Immune Deficiency Diseases (SIDD) All babies, at birth, are screened by the State of Utah to look for metabolic and other disorders. Her results came back abnormal three times, and thus we were contacted to follow up on the screening. Ahh--maybe this will give us the answers to Addie’s seizures??
The subset 7 lab test did show suppressed immune cell numbers and we were forwarded to an immunologist for instruction. We met with Dr. Chen yesterday. After reviewing Addie’s chart and medical history, Dr. Chen believes Addie’s suppressed immune cell counts are due to the leaking lymph fluid that caused her early delivery in the first place. When she had all that lymph fluid pooling in her lungs and tissues, the immune cells went for a swim. They drained out of her body through the chest tubes with the rest of the lymph fluid. Thus each time Addie was screened for the state metabolic test, decreased levels of immune cells showed up.
We were VERY happy to hear this! Addie does have an adequate immune system and we won’t have to worry about SIDD anymore as her body continues to build up its immune cells and her levels increase to normal levels.
“Know thou, my [children], that all these things shall give thee experience, and shall be for thy good. “Therefore, hold on thy way …, for God shall be with you forever and ever.” (Doctrine and Covenants 122:7, 9)
Testing #3) Busy day yesterday! The audiologist fitted Addie for hearing aids at the Utah School for the Deaf & Blind. At the lowest level--no response; level 2--no response; level 3--no response; level 4--no response. Hmn . . . of course she was seizing. At the end of the day, we put the aids back in. Chris and the kids believe they saw a response to sound. I’m still not sure. We will test the aids for up to 6 months to see if we can determine if Addie can hear anything with them. It is difficult to tell because she is still seizuring so much that her cognition is very limited. Even if she can hear, she might not have the ability to let us know due to her developmental delays. We try to observe her eyes (do they widen) or her stress level (does it increase)??
“The test a loving God has set before us is not to see if we can endure difficulty. It is to see if we can endure it well. We pass the test by showing that we remembered Him and the commandments He gave us.”--President Henry B. Eyring
Everyday we hear of the trials and adversity faced by family, friends, and strangers. You never know when you’ll be “up to bat.” We’ve started a prayer list in our family to keep you all in our prayers. We certainly have been overwhelmingly blessed by your prayers in our behalf. May you each have the strength to carry on in your individually designed trials. I can surely testify with my favorite book character Anne of Green Gables that “God is in His heaven; all is right with the world.” There is nothing that you or I will go through that can’t be made better (or at the very least made bearable) in Christ Jesus.
Mucho amore,
Desi
