One year ago today, was one of the hardest days of my life. November 4, 2010, our world was turned upside down and our lives were forever changed. November 4, 2010 was the day our 2nd child, our sweet and beautiful little baby girl, Ivy Caroline, was diagnosed with a genetic disease that we knew NOTHING about, Cystic Fibrosis.
The first 2 months of Ivy's life were tough days. Two weeks in NICU followed by 4 weeks at home knowing something was not quite right...but having more questions than answers. I was pumping the milk into her (literally), yet she failed to gain weight. Then, we got the results back from her newborn screening...an elevated IRT (indicator for CF)...at which time our family doctor referred us to a CF specialist in Greenville, SC. Upon seeing the specialist, he immediately started Ivy on pancreatic enzymes to hopefully aid in digestion. She responded immediately and within 2 days, her weight started to gradually increase. Although the sweat test had not been ordered at the time (the test used to diagnose CF), we knew that everything was pointing to CF. However, to actually hear the words that "your daughter's sweat test results are back and she does in fact have CF."...to hear that your child has a disease where the avg. life expectancy is 37 years of age...to hear that your child has a disease for which there is no cure...that you'll be treating symptoms from this day forward...is simply devastating!
However, our sweet girl has come a looooong way in her first year of life...from her NICU days:
She is a beautiful little girl! Very smart! VERY ACTIVE! CF is not going to slow this girl down or hold her back from doing ANYTHING!
Her daily regimen is quite a process! Does she sit still for the treatments? Um, no, she's 13 months old. Does she enjoy the chest physical therapy? No, she looks at you like, "why are you beating me?" Do we like having to do all theses things to her? No, it's stressful! However, she will understand one day why we do all that we do to her...and all of the "work" (treatments/medications/therapy) that we have to do each day pales in comparison to the fact that we are literally adding years to her life.
As I have said before, I get down some days. I have asked God why? However, I am reminded of John 16:33: “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” Also, God doesn't make mistakes...He creates each person for a purpose!
So, one year ago today, we as a family vowed to a.) do everything in our power to help Ivy have the most normal life possible and b.) raise as much money as possible to fund those doing research to find a cure.
We are so thankful for all of our friends and family who joined "Ivy's League" this past year and helped us raise over $10,000 for CF research for the Greenville Great Strides Walk in May. We will be walking in the Simpsonville Great Strides walk next May (May 19, 2012 to be exact, so mark your calendars!). We hope you'll consider walking with us, donating, or BOTH!
I am kicking off "Ivy's League" 2012 today! Will you help me kick things off by simply donating $1? ONE dollar on the ONE year anniversary of Ivy's diagnosis? If so, please click HERE:
Most importantly, we continue to ask for your prayers...
1. For a CURE
2. For Ivy's lungs to remain healthy
3. For her to gain weight...especially as we transition from formula to milk and table food
From the bottom of our hearts, thank you!
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