Monday, June 21, 2010 to do an update....

Shelby has been doing o.k., so-so, some days good, some days bad, some days fantastic, some days half-and-half. Its confusing. Her G-SCF injections make her feel rotten for 2-3 days after she gets the shot. Each week its gotten a little worse. This past week the tylenol wasn't making her feel better so we changed to motrin. I don't know if it made a difference or if the time of feeling yucky was coming to an end. Scott and I have each done an injection and home health feels were ready to be on our own. I know we are; I just don't want to be. I'm her Mom; not her nurse, but I am. And that's just the way it is.

Her allergy testing that was done while she was inpatient showed her dairy allergy to be "absent or undetectable" so we have been s-l-o-w-l-y adding dairy to her diet. She's had tummy pain complaints before we started and the complaints haven't changed. They are still the same. We are starting with such small amounts, too, that Scott and I really don't believe that the dairy is changing anything for the worse.

I don't even know who to talk to about her tummy pain. She was just fine this evening swimming in the pool then got out abruptly and said her tummy hurt so bad she thought she needed to go to the hospital. :-( She's just been acting very tired since and quiet (for Shelby).

Last night this happened, too...and the night before...and during the day before get the idea. So frustrating!

Wednesday, June 09, 2010

OMG!!! I can't believe I forgot to write about this!

This Saturday is the American Liver Foundation's "Liver Life Walk" here in Rockford. "Team Shelby" has raised $865!!! Our goal is $1000. With all the craziness of Shelby being in the hospital, Scott starting a new job and school ending I forgot to tell you all about it and ask for donations. PLEASE donate if you can!

THANKS - Jenn, Scott, Riley, Shelby & Avery

Saturday, June 05, 2010

8 years ago today...

Very jaundiced less-than-a-week old Shelby held by 2-year-old Riley

Scott and I handed over our tiny 10-week little Shelby to the surgical nurse. She was carried away to have exploratory surgery to test for Biliary Atresia. If Shelby's little body "failed" the test, then, indeed, she did have this awful disease that kept ringing in our heads. About an hour or two (my memory fails me) into the procedure we received a call on the waiting room phone. "Yes, she has Biliary Atresia. Dr. Superina is proceeding with the Kasai procedure." . . . . . . Scott and I hugged each other and cried and cried. How could this be happening to our child? We were surrounded by my parents and my brother Tony throughout that day, but it seemed so unreal.

Fast forward 8 years: YES, Shelby has had many ups and downs on this crazy roller coaster ride, but that Kasai that the skillful Dr. Superina performed is hanging in there. It works! Had it failed, she would have been transplanted as a tiny baby.

Even after the rough journey we've had recently, I am still SO thankful that she is doing as well as she is. It could be a lot worse and I know that. But, it isn't.

Have a great weekend!

Me getting to hold Shelby for the first time after her Kasai