Sunday, March 27, 2011
Sensory Safari......Part 2
Ummm....ya, Ridge is checking to see if the animals on display are boys or girls. Gotta love Boys raised on a farm... ;)
Saturday, March 26, 2011
Sensory Safari
Yesterday we took the boys to an exhibit they have temporarily at the American Falls Library. It was absolutely amazing! There were close to a hundred different species of {stuffed, but real!} animals on display! And the best part was they actually encouraged the children to touch EVERYTHING! How awesome is that?! I wish I would have thought to take a picture of one of the many signs that were posted throughout the library, because they were so funny to me. They read, "Please let the children touch the displays!!!" {or something like that}. They had a blast! Noah wasn't sure what to think at first, pretty hesitant to touch anything {kind of surprised me}, but it didn't take too long, and he was climbing/touching/yelling at everything. :)
Wednesday, March 23, 2011
I'm in love....
Color e-book reader with vibrant 7-inch touch screen; zippy performance; built-in Wi-Fi; Barnes & Noble Nookbook store; 8GB onboard memory, plus microSD expansion slot; built-in Web browser works well; supports PDF, Word, and ePub files; displays images and some video formats; support for audio and MP3 playback.
Blah, blah, blah.....this bad girl rocks! I bought a Nook Color less than a week ago, and have already finished 1 book, and am almost done with another. It is amazing! Plus, I may or may not know a guy, who may or may not have rooted this baby. But presume I did, and presume he did, I could play Angry Birds {don't ask, really...you'll be sorry....}, access and utilize everything a Kindle {another E-reader} has to offer, access the android market {apps}, the list goes on and on.
Blah, blah, blah.....this bad girl rocks! I bought a Nook Color less than a week ago, and have already finished 1 book, and am almost done with another. It is amazing! Plus, I may or may not know a guy, who may or may not have rooted this baby. But presume I did, and presume he did, I could play Angry Birds {don't ask, really...you'll be sorry....}, access and utilize everything a Kindle {another E-reader} has to offer, access the android market {apps}, the list goes on and on.
Sunday, March 20, 2011
Another beautiful spring day
Friday, March 18, 2011
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}
Saturday, March 12, 2011
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.
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.
Friday, March 11, 2011
Thursday, March 10, 2011
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)...
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.
- 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.
Tuesday, March 8, 2011
Sunday, March 6, 2011
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