Another beautiful spring day

My cup runneth over on days like these! My adventurous boys rode out in search of coyote dens. {most nights we can hear them howling} They didn't find any, but did find some bones, and for my boys that was just as cool!

St. Patricks Day.....1 year ago

One of the nurses that took care of Noah made this

A year ago today........ {I know, I know it was actually yesterday, but when I sat down to blog, my camera was dead so just pretend}. Noah was at University of Utah hospital awaiting back-transport to Primary Childrens Hospital {they are connected by a tunnel of sorts}. He had Finally hit the elusive 4 lb mark, and was heading back to get his Ostomy take-down {the surgery to reconnect his bowel}.


Today..........he is almost 4X what he weighed last year! {around the 18lb-ish mark}

Look who's walking now!

Noah has been flirting with the idea of walking for some time, but just recently decided that he was ready. He has impeccable balance and coordination as demonstrated at the end of video #1






P.S. Bedtime is not the best time to try to get footage {not sure how I missed that lesson... as they say, this ain't my first rodeo!} All this short stack had on his mind was baba and a blanket.

A Friday well spent

An update

On Monday, Ry and I headed to good ol' SLC for yet another appointment at Primary Children's (technically it was at U of U, but whatever, it's one in the same for me). We saw Dr. Grinsell, the kidney specialist whom we have seen before. Sooo, this is where we stand with the diagnosis of Minimal Change Nephrotic Syndrome (diagnosed last April)...

• Ryder has had 5 relapses (a relapse is any recurrence of protein in his urine, which we check daily) since his diagnosis in April, making him an official "frequent relapser". Not a great thing to be.
  
• His body still responds well to the treatment (prednisone, a.k.a steroids) This is a very good thing. But he has been on Prednisone more than he has been off of it this last year, and this can/will cause a host of problems if we don't address it.
• Sooo, Plan B would be to consider Therapy with Tacrolimus (Prograf), an immunosuppressant. I would like to avoid this route if possible.
• For whatever reason, (no one knows why, but very common in Minimal Change) illnesses trigger a relapse, so you can imagine how hard it is to keep this kid relapse-free during cold and flu season!
• We have started yet another course of the steroids this week (in the middle of the last course), as he has been "spilling" protein for the last 5 days. This is our last ditch effort with the steroids. I am hoping to get through the cold and flu season and have a healthy summer and not have to do the Tacrolimus therapy.
  
• This is a disease that children "outgrow". No one know how, why or when, they just do. So for that I am thankful. I just pray its sooner rather than later!
  

Ry is such a cool kid, and has been such a trooper through all of these trials in his short 7 yrs. I love him more than life, and continue to pray for miracles! So if you think about it, maybe you could send a few prayers upwards too? :)

P.S. If anyone has any knowledge, opinions, or insight on the Tacrolimus therapy, PLEASE share....via email, telephone, comment, whatever.....I would be ever so grateful. :)

P.S.S. Did you know today, March 10th is World Kidney Day? Me neither, but now we all know.

STAY!!! ..............Good "dogs".

Our dog Saylor is not allowed into the main part of the house {the stair is the boundary}, but I promise Noah is. :)

Signs of Spring

These boys are anxious for some nice weather!