So off we went to Omaha, now none of this was extremely urgent so it was a few weeks before we meet with our ped nephs Dr. Lane and Dr Lovell, both women drs. The nurses Tancy and Lori are awesome and have been a life chain in dealing with the drs. They then ordered for Kaleb to have a biopsy of his larger kidney. That was scheduled in July
.
For the biopsy, Kaleb was admitted overnight. Then we had to wait and wait and wait for the results
.
Waiting is difficult! The results were that his kidneys were 50% scarred
. The diagnosis
FSGS
what is FSGS
? Focal Segmental Glomerulosclerosis
.basically it is scarring of the filters in the kidney
.it is an autoimmune disease., which means that his body has decided to attack his kidneys for some unknown reason. There are many variants of this disease, although they never told me which he has. They seemed a puzzled by the way the damage appeared
but as you know many diseases have things that are unique unto themselves. Well, FSGS can be controlled by being on immunosuppressants. They changed us from Prednisone (thankfully) to cyclosporine. They also put him on epogen injections, and on blood pressure meds. There are a lot of symptoms of FSGS
some people will show more than others. Kaleb never had severe swelling, but he had anemia and high blood pressure
His anemia was a major cause of tiredness.,,, and I learned my lesson about that a little later on in this story.
Well, Kaleb was getting used to the meds and blood work, although I feel sorry for one poor nurse at our local hospital when we took him in
He screamed and screamed and fought and I think the poor nurse was at her wits end! But coming to Oct, it looked like the meds werent helping and the doctors decided to put him on to peritoneal dialysis
basically many people are familiar with hem dialysis, but PD is different. They insert a catheter into the peritoneal lining of the abdomen and leave about 9-10 inches hanging out to hook up to a dialysis machine. The dialysis machine then fills the abdomen with dialysate (a sugar water solution) that dwells in the abdomen for an hour or two at a time for about 8-9 hours a night. There are about 8 cycles of drain and fill per night.
We had time to allow the surgery to heal up and he started dialysis at the end of Nov.
During this time Kaleb is in kindergarten and is not doing to well. Hes tired and not able to concentrate. But He is learning!
Well dialysis started off fine, but then we started having trouble with it not draining. It was alarming every hour through the night. And I was having a hard time with it (Kaleb never new the difference). My husband didnt learn the dialysis procedures so it was always me up, I finally was able to get him to learn how to take care of the alarms. So we told the dialysis nurse and we went from hourly cycles to every two hours and a night off. This made a huge difference for me and we had little trouble with alarming for a while.
During this time, my nephew and I were tested for matching. We both matched but I proceeded on to the next step keeping my nephew as back up. Now I had just come to the end of losing 70 lbs and if it werent for that I would not have been able to donate. Wow, Gods timing I can tell you!
During this time Kaleb was very stable and we even were able to stop the epogen injections!
It was during the transplant process that we met the social worker at UNMC, JJ, who said Kaleb would qualify for a wish. Like many moms, I didnt think that Kaleb would qualify. I guess I never thought of his disease as life threatening, but it was more so than I thought. If we hadnt done the kinder physical, it might have got a lot worse later on, considering how fast he moved towards transplant. I filled out the papers (and a friend also referred us) and not too much later I received paperwork that Kaleb qualified and that our wish granters would call us to set up a time to come out and meet Kaleb. They called within a week or two and set up to come out in March. Jill and Jan came and asked Kaleb what he wanted. We had mentioned about a wish, he could wish for whatever he wanted. We he talked about going to
Disneyland in the past so Disney was one of his wishes and the other was for a Rainbow playset. They came and asked him what his favorite things were and did the same for each of the kids. Then they asked him for his wish. He asked for the playset, but
they dont do Rainbows and she had brought photos of what they did do. There was one he liked but it would be too small for him in a year (It looked like a boat but was geared for 2-4 year olds). So the first wish was out, then he wished for Disneyland. The grantors mentioned that the DL wish was shorter and that DW was better, that it was longer and you got to stay at Give Kids the World, so we made his wish for DW! With DL as a second! As time passed we set up our wish for Oct.
but he never liked liquids and it was a fight on a daily basis to get him to take things... so we added pills and he just took to them.....once he learned to swallow one....the rest just followed....
We started with the small one and told him to stick it on his tongue and swallow it with the water...that's not to say at first he didn't fight some...but once he realized we were serious, he did okay the rest of the time.
I wish I could have got the mickey ones for all the kids but they only had the one size left!
Where is my brain??
try it out yourself...your tongue's natural swallowing mechanism makes it work. 
and was cleared to donate! Yay! We scheduled the transplant for July, one year after diagnosis! Now we live on a small ranch with out 40 head of cattle. There are certain times of the year that it is more convenient for my husband to leave things. There just arent the neighbors and relationships here as there used to be and its hard to find someone to watch the place and take care of the animals. So July was a great time after the cattle have their calves, and the chickens are big enough
.
Prayers for good health and FUN PLANNING 
