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

Saturday, March 28, 2009


Sorry for not posting in so long. We have had a tense few days and I just decided that without pictures, you probably wouldn't want to read tortuous details about Isaiah's pain over and over.

Aaron says today that things are BETTER!!! (Not like jump and shout, but better) You can see in his picture that he is loaded up on narcotics, but still able to smile for Aaron.

Today, Isaiah will talk and smile between groans(not screaming like a banshee). He is interacting with Aaron and even gingerly wrestled with him. I'm not going to ask how with all the tubes and I don't want to picture it.

The pancreatic enzymes are starting to drop slightly and the fevers are gone. He is still receiving the same pain medications, but they actually seem to help now. I am hoping that over time, we can wean him off some of the medications before the transplant. Maybe even all of them.

Yesterday, Aaron asked Isaiah what he wanted most in the whole world and guess what??!! I know this is going to be shocking, but he said "a puppy". I see a puppy in our future folks, but not just yet. I don't see anything wrong with talking about a future puppy, though. I think we could get a lot of mileage out of imaging how a puppy would act, what it would eat, the silly things it would do, etc.

****Caution, next paragraphs may make you think I'm a crazy person***

If you have read my earlier posts, you know that I truly believed God spoke to me in a very quiet and still voice in the beginning of all of this, after the explant. Not with words, exactly, images of Isaiah receiving a second transplant and moving on from that with success for a good life. I still believe that and have had time to examine my thoughts over the last few days. I started remembering that the mind is a powerful thing and that maybe, just maybe, I WANTED to believe that and suggested it to myself. But every time I started thinking that--I remembered my state of mind at the time and the speed at which comfort and peace overtook my mind. I may question myself at times, but I will not question God-and I KNOW that is where my inside info. came from. That sealed it for me when things looked so grim lately.

Since we've had Isaiah, I've had that communication (if you will) that it wasn't Isaiah's time to die yet and that he would live longer, but I have not really felt that Isaiah would (necessarily) live until adulthood. I never felt God promising that he would live a long time, just that he would still be alive for awhile longer, be it days, months or years. So this time, it's very different and I'm thankful and relieved that God gave me a little more future info.

I have only shared all of that with a small group of people before. The reason that I am sharing something so deeply personal today is that I wanted to make it very clear---Isaiah's survival is ONLY through the glory of God. He should be dead, many times over. I want the realization of that fact to be completely obvious to everyone who reads this. If you do not know God, I urge you to consider getting to know Him with an open heart.


  1. smiling big smiles, i've been picturing isiaih all week, and sending healign thoughts. Your posts are touching me deeply. you know some kids are just meant to be here despite medical evidence to the contrary, we never gave up on aaron, and yes, we lost him in the end (in the physical sense anyway)but we had seven and a half years when they said six months, he had to much to do here. i believe isiaih is the same.

    my husband said he had this experience the day aaron was born, and he never doubted anything, he always knew, so i am a believer in something greater than ourselves, the doctors, its spirit,I think.

    i wish you every happiness...more healing thoughts coming your way

    big hugs to you all


  2. Hallelujah and Praise Be to God Almighty! I am so happy for the peace He has given you in this ultimate time of trial for your family. I found this blog through your friend Jen's blog, and I am a huge fan now. Isaiah sounds like such a special boy, and his story will hopefully touch a multitude and help them know the Grace and Love of Our Lord! God bless all of you!

  3. Amen, sister. You and Aaron are amazing people, and Isaiah has a phenomenal group of doctors and medical personnel on his side but the hand of God is obviously on all of those people. What a testmiony.

  4. I'm not very good at expressing the sentiments that I feel in my heart, but I want you to know that I follow your blog faithfully and pray every day for Isaiah and you and your family....God is Awesome!

  5. So glad to hear our little man is feeling a little better. To see a smile on his face has made my day. Can't wait to see it all in person. We love all you Johnson Family members. Yep, you know you're in our prayers my friends. Love you all,