For those who have been reading my blog, I know you follow the ups and downs in the life of my niece, Angel. When she was about four, she went through her first kidney transplant. When complications set in, we were worried, no, we were scared. When we lost something very special to Angel, we were afraid it was a bad omen. But after weeks and weeks in the PICU, she made it to the floor. Unbeknownst to her, because she was in a medically induced coma, many people came together to bring that something special back to Angel. Frankly, it was just the magic we all needed. Shortly after, things began to turn around and Angel made it home. That something special was a stuffed bear. For years, we have wanted to bring that bear to life, for Angel. Now, we hope to bring that bear to life for all kids who are seriously ill and face long stretches in the hospital. So here I share how it all came together, this very special project for a very special girl. Please click on the link below to see how it all began, and where this project is going. I am really exited to share that we have published my first Children’s Book and there is a whole White Bear’s World to come.
When it comes to talking about my daughter’s health, the words come easily. She is complicated at best and if you read my other posts you can learn a lot about her. She is now 12 years old an…
From a mom who knows.
When it comes to talking about my daughter’s health, the words come easily. She is complicated at best and if you read my other posts you can learn a lot about her. She is now 12 years old and just about 7 months post Kidney Transplant. Everyone just assumes that since she got a kidney everything is better. She is no longer in need of dialysis treatments but she is certainly not out of danger. Her health has improved but she is far from healthy.
The first few weeks labs were required twice a week and have now dwindled down to every 2-3 weeks. During one of her very first set of labs we found out that she has a virus called the BK virus. Apparently this particular virus can lay dormant or can creep up and attack the kidney. It has been the most likely cause of a transplant…
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There is no greater gift than love and friendship.
My daughter is 12 years old. She started on Dialysis when she was 4 years old. A tiny little thing full of life and not much of a clue as the the troubles she has already seen.
Funny as during the first few weeks of dialysis, I remember asking Dr. C is there like a support group or something for families, how do they learn to adjust and keep positive, and he said you are the support group, look around the rooms there are other Moms, Dads sisters and brothers and sometimes other loved ones whom sit with their Dialysis patient, who rub their feet when they cramp, who adjust the tv, and step away when the teacher comes.
At first I did not understand why there is not an actual group or something. Although looking back I totally get it now. You learn to become Kidney Families. We have…
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