On Monday we received back all of Kimber's test results. Her blood tests were negative for Zelwaggers Sydrome. This was HUGE news as this is what they were convinced she had that would only give her months to live. But the good news didn't stop there. Her chromosomes came back totally normal which threw out another big bag of horrible diagnosis. The last remaining question was her MRI which we were previously told was abnormal. After asking several pointed questions we found out that there were conflicting readings. The neurologist and neuro-radiologist from Primary Children's sat down together and apparently spent hours combing over every inch of the MRI and the conclusion was that that is normal as well.
A week later there is still so much mixed emotion that I had a hard time putting my thoughts in to this post. When I told my mom the news that they now have no diagnosis at all and as a result have no idea what to expect, she asked me how we were feeling about that. I sat and tried to put it in to words for a long time and finally just told her you would have to be able to see inside my heart for the answer to that as I had no words to explain it.
My dad heard a quote the other day that went along the lines of "you worry about losing your job until you have lost your job and you are worried about losing your house." Likewise you worry your child will have developmental delays until you are told your child will not live past the age of two months. We understand the road ahead will be far from simple as we have already been prepped for the year of intense therapy and follow up appointments we have ahead of us. The doctors hope that as she continues to grow and develope that they will be able to pinpoint what could be causing her low muscle tone but as of right now they are completely out of ideas. Kimber is developing and doing things they have told us she probably would never be able to do. Shawn and I hope she will astound the medical world and just grow out of it with the help of therapy.
With all the change and ups and downs of the NICU we left this conference feeling guardedly optimistic for the first time since transferring down to McKay Dee. As I expressed my slight frustration in not knowing exactly how to feel, I was reminded of a few things that remained unchanged and that will never change no matter what.
We are sealed as a family for time and all eternity. This means Kimber is our little girl and will ALWAYS be our little girl. The Lord's will for our family was going to be done two weeks ago and is still going to be done. I just have to continue to have faith in Him and trust that He knows what is best. And the atonement of Christ is a PERFECT atonement and through Him ALL THINGS will be made right.
These things I know to be true more than I did a month ago. I cling to this knowledge I have when everything else seems to be constantly changing. I am so grateful for my little family and for the gospel in my life. For a loving Savior and for the incredible family and friends we have been blessed with to support us through this trial. Love you all!
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