Aubrey Rose

A late birthday gift arrived today from someone we never met but who has touched us deeply. Back in February and March, while hanging out in CA, I applied for multiple grants on Naomi’s behalf. They were all to attempt to get some of her medical bills covered. Most came back with a simple letter apologizing for a lack of funds.

Jerry and Nancy Hollenkamp co-founded the Aubrey Rose Foundation after their daughter, Aubrey, died right before her 3rd birthday, after experiencing multiple cardiac surgeries and then a heart and double lung transplant at the age of 18 months. The mission of the Aubrey Rose Foundation is to extend support to families with children battling life threatening illnesses.

They have generously paid off the pediatrician bills that remained from Naomi’s initial hospitalization when she was diagnosed last September and October. The amount they paid was almost $1500. In addition to sending us a very personalized letter, they sent each of our children a gift and included a handwritten note apologizing for the delay in assistance. They explained that there was a shortage of funding for sometime.

I am in awe of the compassion and support they have shown our family and cannot express gratitude enough for the financial burden they lifted for our family. Aubrey Rose, although I never knew her, has touched my life.

For more information about the Aubrey Rose Foundation, you can visit:
http://www.aubreyrose.org/aboutus

In other news, our visit to COH on Monday was cancelled since Naomi saw local doctors this week. We will now go to COH after Labor Day! What a long break this ends up being!

All of her labs from the ER visit are back. Her cyclosporine level is low again, being 116, when it should be 250-300. But news from COH today is that we are NOT increasing her dose. Yay!!!!

All blood and urine cultures showed final results of NO bacteria growth – thank God. Now, we just await the viral test results.

I made the difficult decision of taking Naomi out of gymnastics again. While she was doing very well, the fevers were coming at the end of the week…. After having been at the gym. I fear that the combination of meds and the hot gym pushed her hydration levels too far. So at this point the plan is to wait until after we wean her from meds to have her return to regular classes. Also, I have to admit that the anniversary of her getting sick is sneaking closer and the beginning of virus season concerns me this year. Cyclosporine makes her most at-risk for a viral infection. Being at the gym as kids return to school and illnesses start to go around is not what I want for her this year. She is disappointed but certainly understands why we have made this decision. We can still attend open gym which is during the day while most children are at school, or just continue to practice at home. Not ideal, but best, for now.

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