Our Fundraisers

#1 You can join Isaiah's FIGHT on facebook and donate with a debit/credit card. CLICK HERE TO GO TO ISAIAH'S CAUSE on facebook.

#2 You can mail a check to their church-write ISAIAH somewhere on envelope or in the memo of your check:

Lifestream Christian Church 204 East Main Street Gardner, KS 66030 Phone: 913-856-8088

Sunday, May 24, 2009

Getting ready to leave...

So, I'm trying to finish laundry, pack and clean the house before we leave for Omaha. It's time for the second transplant evaluation. We have three "fun-filled" days of testing and appointments (including a psychological evaluation, yikes!!) and then at the end, they sit down with us and say, "We are going to officially list Isaiah on the transplant list for liver, pancreas and small bowel." Then they make a few phone calls, fill out paperwork and it's done, just like that.

Then the waiting begins. There is a balancing act between your age, how long you have been on the list waiting and your current medical status. There are extra lab tests we will start getting now in addition to current lab tests that I get at home. We have to check and see if his liver is still able to produce blood clotting factors and basically, how close it is to shutting down completely. Obviously, we don't want him to bleed to death before he gets transplanted and the IV nutrition that he gets constantly is very hard on the liver too. It's really a balancing act. We hope that Isaiah will be at home with us up until the transplant, but sometimes, the person waiting gets very sick and has to be in the hospital well before they actually receive the transplant. We are ready for that, too.

We've just been trying to live as normally as possible, working and taking care of our boy. It takes a lot of energy and we are so tired. BUT, its always better than living at the hospital. Don't get me wrong, they have good food and all, but you know...OK, this will crack people up. Sadly, the transplant evaluation is our big vacation for this summer. I am excited (in a pathetic sort of way;) because we are going to try to go to the zoo and the Omaha Royals game. Wowee. Makes you think I need to get out more, right??? At least Omaha is a nice place to go.

Will keep posting, now that we are back in the medical stuff again.

Sunday, May 10, 2009

Back on the face of the earth!

Our family has been CRAZY busy for the last couple of weeks. Aaron and I are working like crazy. Tater has had dance rehearsal every night and Boo has had a few cheerleading meetings and uniform fitting for next year. Aaron and I are beyond exhausted. We have just been struggling to have the energy to do the bare minimum. But I'm done whining now.

Isaiah has had this vomiting thing that has been completely out of control. Lots of pain and retching several times per day and sometimes ALL afternoon and evening. It kind of ran our lives and schedules because we couldn't take him anywhere when he was feeling sick. We felt so bad watching him just be sick over and over. Nothing to do for it except rub his back and tell him it will be all right.

I think we fixed the problem on Thursday. We went for a checkup in Omaha and they changed the stomach tube. Suddenly, about 100ml of nasty, brown stomach drainage came out. Gross!!! After that, he has been mostly fine. If he wasn't vomiting, he has been sleeping. It is not uncommon for him to come home from school and go straight to bed. Then he may or may not wake up before the next morning. Between that and the vomiting it made getting anything done nearly impossible for him and the rest of us.

Now, Isaiah is hungry all the time. He wants to eat BADLY. And he can't. How awful is it that??!! We worked so hard for so long to teach this child to eat and enjoy food-and now we are telling him that he can't eat. Not even a morsel. It's torture for him and for us. He sits silently watching us eat and the tears start to fall. We can't keep him from eating with us because then he will forget how and will lose the drive, not to mention the social implications. After the transplant, he will not want to eat if he isn't around it now. The best we can do is offer smells of food he likes and if he wants to, he can lick something. I even told him that he could chew up food and spit it out. We haven't gotten that brave yet. We are both too afraid that his tube will clog. Soup is about it and he is tired of that.

Isaiah's softball tournament was yesterday. It was a blast. We got to go four hours-then we had to leave and get the boy's IV stuff hooked up. We all slept great last night. Somehow I ended up sunburned. Unbelievable since EVERYTHING I put on my skin has sunscreen in it. Oh well. It sure was fun. Most of the kids stayed in the "bouncy house" and had a blast. Got some great pics to show. Of course, a HUGE thanks to all who participated and helped organize. Robin Haenisch put the whole thing together, Toby Orth got ahold of the giant grill AND cooked, Taylor Myers put in a HUGE amount of hours at the bouncy house. It ended up being more babysitting kind of stuff and she stuck it out in the sun all day like a trooper. It took more people than those mentioned for sure, but I can mention these guys off the top of my head. Of course Isaiah spent ALL of his time in the bouncy house. Thanks be to God-no tubes got ripped out!!! I just had to let him have some normal kid time...