you have affected my beautiful little girl chloe and you almost took her from me in march 2008, but i just dont think you have met dr. hernandez and chloes mom and of course the girl battling you.. her name is chloe she is a beautiful 5 year old lil girl who even when you make her very sick she doesnt let you get her down. she is not going to let you win, we will not let you win. personally id like to take you out back and kick your ass(excuse my…Continue
Hey there everyone - lots to update today! Guess I'll start with clinic to get through the 'boring'stuff. It was our first clinic in 6 weeks which is a LONG time for us - so glad to go and check our #'s actually. Everything seems good - Hyde's blood pressure had been REALLY good but of course for a week or 2 there it had to jump back up to pre-nephrectomy levels just to make me nervous - but back down for the last week - so fingers crossed it stays - we…
well lil miss ended up in the ER last night with tummy pain low gradefever and black runny stool.. labs are being funky and shes a tid bit dehydrated.. we have been pushing fluids all day and she puked this morning.. its amazing how one day she can have great labs and the next they are acting up.. we have a follow up call on monday and labs on thursday.. this is insane my poor lil miss was feeling so ucky.. i had taken her to the clinic earlier that day and they took a look at her…Continue
we went to spokane yesterday and all kidney counts were good.... lil miss has a low white cell count it was 3.7 and norm is 5 to 12 also her platlets were low 213.. dr. h wants a cbc next week to check her white count and platlets again.. i have no idea why her white count would be low all i know is that white cells help fight off infection.. does anyone elses kiddos have low white counts and why??? just curious cause in the 2 years she has been sick we havent had an abnormal white…Continue
Tonight is the eve of Ryan's 11th birthday. I go in his room as I do every night to tuck him in and I say "You know, it was about this time of night that you told me you were ready to come out of my belly and into the world." He hides his head and says "Yeah, that was before all of this." I asked him what he meant. He said "Before all of this." and pointed to all the scars on his chest and belly from catheters and g-tubes. Of course the tears were welling in my eyes already. So I explained…Continue
well, it's coming down to the crunch now. I have a final lab practical coming up next week, a major assignment due next week, and 2 final exams coming up, it's been very stressful. But, on a postive note: I was confronted by 2 of my professors about a proposition they had in mind, that they wanted to setup a donor search for me, to help me find a new kidney. Of course, I didn't turn that proposition down, and now we're in the process of trying to find some information as to how we can go…Continue
Hey there everyone - we had a GREAT weekend here in Georgia and so far have raised $28.7 K NET of expenses!!! This will be split 80% to the foundation and 20% to CHOA and I'm pretty confident we WILL hit $30 K within the next week.
Here's some great pics and a video of the event so you can get an idea of how much fun we had!
I WAS JUST REALIZING I HAVENT BLOGGED SINCE BEFORE CHLOES LAST APT.. WELL THE 22ND OF MARCH WAS HER APT AND THE BLOOD WORK LOOKED GOOD.. BUT DR. H SAID REALLY HE DOESNT KNOW WHAT TO DO WITH CHLOE NEXT.. HE DID SAY WE ARE STOPPING PLASMA TREATMENT HE FEELS WE ARE PUTTING HER AT RISJ FOR NOT BEING ABLE TO RECIEVE A TRANSPLANT WHEN HER TIME COMES. HER LAST ONE WILL BE IN MAY. HE SAYS WE ARE JUST GOING TO HAVE TO WAIT AND HOPE WE GET SOLARIS APPROVED BEFORE RELAPSE.. TO BE…Continue
Linda had a great idea about using facebook to spread the word about the upcoming Hike 4 Hyde we are doing with Bryan Hearn and Kegley Hubbard's family - Post the attach to your facebook status and the link to the video - will hopefully get folks to the Hike page AND to this page for more info!
Join the festivities at this family fun day on April 17th at Swawnee Mtn Preserve Park in Cumming GA, from 9 to 2pm. A major fundraiser for The Foundation…Continue
Added by Phyllis Ann Talbot on April 4, 2010 at 9:51am — No Comments
My mom and I received packages on Friday with our blood tubes, to be cross matched through Johns Hopkins. I'm getting a little bit nervous, as I don't know what to expect, but I am trying to keep that nervous activity down, and keep it from exploding. This is could be my only chance at a normal life, away from a machine, lord only knows what the route is going to be.
I'm doing good otherwise, very stressed out, as the end of the semester is coming near, finals are getting…Continue
OK - way on a back page of the Today show webpage - but follow this link to my sister representing for AHUS and the upcoming hike - if you watched - they showed the sign several times during the show this morning - yippee!!
Hi there everybody - not a ton to tell you, and I know this is Hyde's carepage - but alot of you had asked about Ruthie and the 'toof' so the big news there is that the 'toof' came out last Friday and the Tooth Fairy did visit and left $1!!!! Ruth was very excited! Of course apparently the…