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

Monday, April 20, 2009

Back in business...

Well, we got our boy back on Saturday afternoon from the hospital. He's pretty much OK, but he did miss out on an incredible pancake breakfast in his honor!!!

The turnout Saturday morning was AMAZING...over $5,000 raised for Isaiah. When God does something, he goes all out, right? I don't even know what to say. I made a total fool of myself crying off and on. I saw so many people I've never even met. I met people I've never seen but will see again. I visited with friends I haven't seen since high school. I even got to see Jenni-she was in town for a homeschoolers conference!!! It was a pefect and mind blowing day. All for this little boy...he smiled so big when I showed him the pictures from our camera. He was thrilled to see his classmates, educators, family, church friends and family. He loved it that a whole table of firefighters were there in his honor and MAD that he didn't get to see their fire truck. He's all boy you know...
I have so many thoughts about it all but I just can't seem to express any of it adequately, then I just get teary eyed. Isaiah's entire school and the community just really showed so much support and put so much of themselves into this fundraiser. Here I go, the tears are flowin'. Just can't help it. I look at Isaiah irritating his sisters nearby and I'm so thankful that he is here and has so much support. We are not alone.
***Thanks to everyone involved!!!!***It took so MANY people to pull it together, but I thought our blog readers would like to know that Isaiah's first grade teacher, Mrs. Joles (and her husband), and his room mother, Katie Gillis got this whole ball rolling and did so MUCH work. Would it interest any of you to know that I NEVER met Katie Gillis until the morning of the breakfast???? Don't get embarrassed, Katie, I just wanted people to know of your compassion for a little boy. It touched us deeply.
And Applebee's, don't forget, donated the ENTIRE thing. They did not take a cut from the ticket sales and our turnout was huge. I can't imagine what that breakfast cost them, but they earned my PR skills FOREVER.
Got to go blow my nose now...the kids are going to make fun of me again.

Friday, April 17, 2009

That was quick...

Isaiah is already back in the hospital. He started running a fever last night, feeling sick, vomiting. Called his GI doctor at Children's Mercy and got the ol' direct admit to the unit.
No six hour wait in the emergency room for us!!

So, when he's not hurting and leaking strange looking blood clots from his gastric drainage bag, he feels fine, just HOT. I keep telling him that he's smokin' hot, but he doesn't think it's funny anymore.

Yeah, so they drew blood cultures to see if there are any little bugs growing anywhere in his blood stream, but he really doesn't look sick enough to me. If his temp. can go back to normal and the cultures don't grow anything, maybe they'll let us come home on Sunday. I can always hope. I'm just so thankful that he's in Kansas City and not so far away this time.

He's got to get back to school next week anyway-he got picked to be a Character Kid by his teacher at school and the awards are given on Thursday. Guess what character trait he got picked for??? Courage, of course!!

Now he has to miss his own pancake fundraiser in the morning, tomorrow. BUT since he can't eat anyway, I guess it's OK. Aaron and I can go without him just to thank everyone for coming. I won't tell him how much I enjoyed eating pancakes on his behalf.

Wednesday, April 15, 2009

Take me out to the ball game...

Isaiah went back to school today for a half day. He made it through swimmingly and as a bonus he went to the Royals game.

He is one happy kid!! He is feeling better each day, unless it's the day we have to change his narcotic patch. Then he starts withdrawal symptoms and the pain comes back with a vengeance. Yesterday was the patch change day. Not such a good day for our boy...

Hoping he will be in school for full days before too long, he is still VERY tired, but getting stronger slowly. This may be as good as it gets for him but I'm hoping for more improvement before the liver complications begin. We know at some point he will go into liver failure, we just hope it's not too soon.

One day at a time is the best we can do...

Sunday, April 12, 2009


Latest Hospital bill: $288,000.00

Miles traveled per visit to hospital: 440

My boy home for Easter: PRICELESS

Isaiah is steadily getting better every day. He is feeling well enough to be quite crotchedy these days, but we don't care. Isaiah is sleeping a lot, but in between he feels pretty darn good. Had some retching and abdominal pain today, but this is very infrequent now. He can POOP! Who knew??? He is obstructed and nothing has been going through for awhile now, but lo and behold, it keeps happening about every other day. Nothing like a normal intestine would kick out, but coming through nonetheless.

Isaiah is going back to school tomorrow!! He is just going to attend half days in the morning, that is probably about all he can handle. Even that may put him completely down the rest of the day. But still, he needs to see his friends and he needs normal interaction. He needs the school environment.

The Easter bunny came to our house and left a ton of crap on our doorstep-amazing how he keeps finding us...Isaiah was so hyped that the Easter bunny knew he couldn't eat food and left him only non-food items. The genuine amazement on his face was hysterical to watch. He was trying to convince me that giant bubbles can be blown in the house too, but I wasn't having it. I am sure The Bunny did not mean for the Buzz Lightyear giant bubble wand to be used in my living room. It was all really kind of humerous. Our easter eggs are not colored yet and since a lot of our things are in storage, we had no easter baskets to put out for The Bunny. Isaiah found a storage crate in his room for use, Boo used a book bag and Tater used my strainer from the kitchen.

So, we also have a lot of excitement going on!!!

Isaiah's Army is having a pancake breakfast benefit at Applebee's at The Great Mall for him on April 18th. Get this: his first grade classmates are going to help serve the pancakes!! Is that so awesome?? I don't know what else to call it because I cried like a baby when I found out.

Our church is having a softball tournament on May 9th for Isaiah's transplant fund. I can't wait for the warmer weather then so we can attend and cheer on our favorite teams. So amazing...Isaiah has no idea how many people are trying to help him. He's just too young to understand but I plan to document all of this very well so that when he is older, he can look at pictures and read articles and KNOW how loved he is by so many.

Tuesday, April 7, 2009

Chillin' with Dad...

Isaiah is still very weak. He just cannot seem to control his body temperature at all. He goes from hot to cold in a second's time. He is extremely thirsty, but when he drinks, it just goes directly into the drainage bag. Weird times for sure, but we will get our groove going soon. First follow up doctor's appt is this week. We have lots to talk about for sure.

He is happier every day. His personality is really re-emerging and he is much more relaxed at home. Aaron took him up to his elementary school today to visit his nurse and talk about Isaiah coming back to school-when, how, for how long. I think he is going to try going back for a half day next week and see how it goes. Whatever the case, I don't have to worry because he gets excellent care when he is at school. I can honestly say that I don't worry for a minute when he is at school and I am working. How many mothers can say that about their medically fragile child??? We know, we are so lucky.

So, Isaiah and Aaron are enjoying as much time as possible until Aaron goes back to work on Friday. Then it's just me and the kids in the evenings.

See how happy he is in the picture? It makes my heart feel so full...

Sunday, April 5, 2009

So glad to be back home!!

We got to go to church as a family today!! For the first time in over two months. It was WONDERFUL to see our church family this morning, I just couldn't stop smiling. (when I wasn't crying) Our church prayed for us as a group-it was so powerful and so appreciated. I truly believe prayer is what brings this boy home to us time after time.

Isaiah is SO tired. Aaron had to carry him up to the front of the church-if you know Isaiah, that is completely atypical. He was afraid of throwing up in front of his Sunday school class, so he stayed in "big" church with us.
He is so weak, that Boo decided to give Isaiah a change of scenery. She made a " beach" for him in our living room. The gold blankets are sand, with the beach towels for sunbathing and the blue blanket is the ocean. She put out the big picture book of sea animals and the Seaworld towel to remind him of the time we went to Seaworld-before the first transplant. It really made him smile. They put on their sunglasses to sunbathe and watched Nemo and Sharktale-even Tater joined in.

I feel our blessings so strongly today...

Friday, April 3, 2009

Tired, but so happy...

So, Aaron and Isaiah got home yesterday. We got to unpack the boxes of medical "stuff" and try to find a place to put it all. Then, we commenced to taking care of our boy.

He was more fatigued than I would have expected and did not leave the couch until it was time for bed. Then, he went to sleep immediately. I only had to get up in the night five or six times to empty drain bags, take him to the bathroom, re-apply the dressing to one of his drain sites and just kiss him and tell him how happy I was that he finally made it back home. He just kept snuggling back under his blankets and sighing a very contented sigh.

Today wasn't the greatest day for him. Lots of pain, some vomiting, lots of fatigue-temp 99.7. Tough, but better than it has been. He really can't walk far at all. He can't get up or down the steps without assistance and he has to walk about 1mph. Poor fella. It'll get better. We had hoped to take him to his sister's school play tonight, but he isn't up to going. Can't wait to take him to church Sunday!!! Aaron and I told him that we would carry him the whole way if we had to.

His sisters must have missed him more than they admit-they have fussed over him since they got home from school. ;)

Wednesday, April 1, 2009

Coming Home!!!!

I cannot WAIT to get my hands on my boy! He will be home tomorrow and I don't even know if I will be able to sleep tonight. He is feeling so much better and I can't help but think it's because he knows that he is coming home. He ALWAYS does better when we get him home. He was feeling well enough today to eat a popsicle. I think that is about it for food. I believe The Team has decided he will be on clear liquids until his transplant.

He called me today to say that he is counting the hours until he gets to come home. Then the REAL work begins. Intense care all day, up most of the night. Mixing IV drugs and IV nutrition, measuring everything that leaves his body, IV pumps alarming, figuring out how to eat in front of him without making him feel left out, figuring out how to cover his drainage bags so that he doesn't feel embarrassed in public-the list goes on and on. The doctors appointments, the lab draws, taking vital signs, assessing him constantly-do I have enough listed or should I go on? Aaron and I will be handling it together on a 24hour basis-go Team Johnson!!!

I can't wait to look in his room at night and actually see him in his bed...