The two R words

Since our Daughter was about 20 months old, her health has revolved around 2 R words Relapse and Remission. In October of 2010 she was diagnosed with Nephrotic Syndrome, a disorder of the kidneys. After 9 months of steroids and multiple Relapses, her Doctor decided it was time for a kidney biopsy. In June of 2011 she had her biopsy. The result was that she had "Minimum Change Disorder + Cortico Steroid Dependent". Meaning that she had the "good" kind of Nephrotic Syndrome but her body doesn't create enough steroids on its own. So, instead of continuing to give her steroids on a daily basis.(They have horrible side effects) We changed her over to an imuno- suppressant/ anti rejection drug to trick her body into making her kidneys work. And, For a year it did. In July of 2012 she was given Remission status!!!!

Let me go back for just a minute, While on the immune suppressing medicine our little girl had to be kept in quarantine, so to speak. We didn't go to preschool, church, indoor play areas, we sanitized grocery carts, and didn't go anywhere where she might get sick. She was at such a high risk for getting sick, given she had no immune system due to her medicine. Any fever over 101.1 was a trip to the hospital for IV antibiotics and observation. We only experienced one hospital stay while she was immune suppressed and it was enough to confirm our decision to keep her away from germy kids and places. Luckily, she didn't have any kidney issues during this episode.

So when the Doctor gave her Remission status, we were elated! He told us to stop giving her her medicine and that she was able to go to school, church, ect. Being concerned parents we didn't want to put her at risk for getting sick and relapsing, by throwing her back into the world, so we started slowly. We did Wed. Night church and we started gymnastics. Both of which she loves!

Hazel loves gymnastics.

After about a month of being "back to normal". Our little girl got a stomach virus. Now, she has had other colds, stomach bugs, and viruses but, none with fever and they came a went without effecting her kidneys. The last stomach virus did her in. After 9 days of vomiting and diarrhea, we saw that she was leaking proteins again. Proteins in the urine are the first sign of a relapse. We called her nephrologist, and took her into see him. He found that not only was she leaking proteins and relapsing but she was slightly dehydrated from the virus and she was admitted to the hospital.

So here we are at square one again. Our 3 year old is getting albumin infusions and IV fluids and antibiotics. They're putting her back on the steroids in hopes that she will respond and her kidneys will quit leaking proteins. But no long term plan yet. I just hate having to wait and see. After 3 day sitting in the hospital everyone is ready to go home and our boys are ready for us to be home. We are so blessed that Mimi is willing and able to come help us with the boys. Hopefully the Wonderful Doctors and Nurses here at the Children's Hospital can get her well and home soon.  With any hope she'll be back in Remission soon too.

Waiting for the Doctor was exhausting.

Making the best out of a not fun situation.