Saturday, July 31, 2010


With Scott working at Rockford Memorial, we now have new health insurance. I am getting familiar with their website, how to review our claims, etc. For the month of July ALONE, with NO hospitalizations, NO home health, just 4 days of doctors appointments in Chicago, Shelby has racked up $5886 in medical bills. WOW! WOW! WOW! Her most recent COTA account balance (as of June 30, 2010) is $53,224.55. If you link to her COTA page it shows $75,782.13. That is a bit misleading to me because it does not reflect the true balance of her account. Yes, we've used up $22,557.58 and she is not even listed for a transplant YET. In fact, all her clinic visits this past month have revealed that she is doing *relatively* well. :-O So...if anyone has an idea for a fundraiser please let us know. Its been a long time since there's been one. Scott & I are "technically" not to head up one per COTA's rules, but are always willing to do a ton of work for it. Enough of that!

Shelby's new medication for her ammonia level has had to be cut back because it was giving her horrible diarrhea. That awful side effect was the whole reason the doctor did not put her on the Lactulose. The frequency of going has finally slowed down, thank goodness, but let's pray that there is enough medication in her to be clearing out that ammonia. Monday she'll have labs so we can see where her wbc and ammonia levels are at.

This past week, we used one of the *freebies* that came with her Give Kids the World Village passport and went to Great America. Enjoy the pics!

Great America

Then, on Friday, Scott, Riley & Shelby went to see the Thunderbirds practice at the Rockford Airfest. This was a special invite-only event extended to local Make-A-Wish families.


I will update with Shelby's lab results this week!

Wednesday, July 21, 2010

Yesterday's clinics

Shelby, Dr. Superina (transplant surgeon; performed her Kasai procedure) and her beloved Dr. Jill

Yesterday Shelby had Cardiology and Liver clinics. Cardiology was lllooonnnggg as she needed an EKG (quick) and and Echo (lloonngg!). We had a 10:40 appointment and we finally saw the doctor around 12:30! Yup, that's clinic :-( We ran downstairs for a quick lunch and then got into Liver clinic early. Of course, we were still there for 2 hours! Her labs drawn earlier in the morning showed that her wbc has remained stable (good!), but her ammonia level is elevated (bad). We had requested that they check it because Scott and I have noticed some changes in Shelby the past month - forgetfulness, easily irritated, spaciness, confusion - not all the time, but enough to be concerning. This is called Hepatic Encephalopathy
. It can be very serious, but Shelby's is mild right now. She needs to be a on med called Rifaximin, but insurance is questioning the need for it because it is very expensive ($600 for 1 month!). Her "liver" numbers are holding at just about *normal* normal and she is growing like a they are not looking at transplant right now. Its such a double-edged sword, her whole situation. She's having so many *mild* side effects, but combining them all together makes for a lot. I'm glad she is doing as well as she is, but how much is enough? Labs will be repeated the beginning of August to check on her wbc and ammonia.

Thursday, July 08, 2010

Hematology Visit

Long day. There really isn't much to report other than that if Hepatology (liver drs) o.k. it, Hematology (blood drs) are recommending the shots be discontinued so we can see what her body can do on its own. If she doesn't get sick before the beginning of August, then she'll have labs to see where things are. If she gets sick, then the shots may need to be re-started, but we'll just have to see. We're just fine with that. At $300+ a shot, I'm sure insurance will be very pleased, too. Now to pray that her body can stay healthy on its own. Enjoy the pics!

Tuesday, July 06, 2010

House on the Rock

(Today we drove to the House on the Rock in Spring Green, WI. We had free passes to go there from Shelby's "passport" she received from staying at Give Kids The World Village on her Make A Wish trip. It was a long day. We had fun, but, once again...LONG day. I'm sure Riley and Shelby have the same amount of pics from their cameras as in this album, but I haven't downloaded those yet. Enjoy!

By the way, her wbc came back at 2.1 (I was really hoping for it to be much higher.) Her ANC was 1050, though - that's good. We'll see what Hematology says on Thursday.

Monday, July 05, 2010

Busy week!

Last week Shelby had NO bad side effects from her shot - YIPPEE!!! She attended day camp and Riley went to sleep-away camp. Friday, we picked them both up and headed to Moline to see Justin Bieber in concert. Our fabulous Wish Granter, Ann, hooked us up with tickets. The girls LOVED the concert. Avery got to spend the night with Grammie and Papa. Scott worked Saturday and Sunday night, but arranged his sleeping time so that when I got off work at 5:30 we headed over to our friend's neighborhood for a kids' bike parade and to watch the fireworks. All of us girls slept in this morning and Scott crawled right in bed when he got home at 8 and is still sleeping. We need some R&R time! Enjoy the pics! By the way, Shelby will have labs today so we'll see how good those shots are working.

Justin Bieber