The story of Robby

Sorry I did'nt realize that there were so many that did't know what was going on with Robby. Its just such an every day thing to us that I don't mention it in every day conversation. So if your not around you miss out on the drama. Lucky You.

The saga started November 5th 2005 that was the day Robby was diagnosed with Nephrotic Syndrome, Minimal Change Disease.

Robby had a little cold maybe two weeks before Halloween and it really was nothing big he got over it and life proceeded as normal. NOT! Abi took Robby down to the church to watch the girls play basketball and then brought him home. She said to us look at Robby's tummy. It looked like he had a basketball in there. We took him up to the hospital pediatric clinic that night and the doctor checked him out listened to his tummy and said he constipated. What! It didn't sound like him so i started with the questions and Robby said "I just Pooped before we came" the doctor gave him a laxative and we waited and waited nothing so we went home thinking he was full of gas. That was a Thursday night. Sunday during Sacrament meeting I was looking at Robby and I turned to Dewey and asked him if his face looked different, He had a lump under his jaw area. I talked to the doctor on call he said if he didn't act sick he would be okay until tomorrow to see our Regular doctor. So, Monday his face was a little mire puffy and when Dr. Beazer seen Robby he said oh he looks nephrotic and in my feeble brain I thought CRAZY I don't think he looks crazy. He thought he had some thing wrong with his kidneys. At this point I'm still on crazy it takes me a minute. Any way we were sent straight to Primary Children's. I kept myself in check until I hit the fresh air, then I lost it!

Robby's kidneys don't filter right, normal kidneys filter like a piece of cheese cloth very fine, Neghrotic kidneys are like a honey comb and he pees all the protein right out causing him to retain all the fluid that he should be getting rid of.

One thing we have learned is that when his Kidneys quite functioning thing go down hill real fast.

by Tuesday he was unrecognisable and there were time he could barely breath because of all the fluid he had retained he didn't pee for six days but, look out, when the prednislone kicked in he couldn't quit peeing.

Since the first diagnosis it has been a up and down battle. He had never beenable to come off the pred. we would do the taper thing and then he would be dumping again. So September of 2008 the statis was that Robby was Pednisone dependent and we could do a more aggressive treatment which was the chemotheropy to see if it would kick him into remission. How do you dicide if it's okay to poisen your baby? I talked to Patty in that same week and she told me that sometimes you just have to have the faith that the doctors really know what they are doing. I was real scared. But Charlee gave him a blessing the night before he started it and things went good one the second day he blacked out at scool durring recess but he came to and continued playing. I took him out of school for a week because of a cold around thanksgiving and he drove me crazy. Durring the 8 week course we had blood drawn once a week to make sure his white blood cells didn't drop to low. we finished it on the 5th of Dec. and finished the pred. on the 28th of Dec. He has been doing great for about a month now no dumping. Until yesterday Robby came down with a cold and is spilling some protein now the big Question is??? can he pull out on his own ??? The Kidney doc. says WAIT AND SEE! I HATE THOSE WORDS.