Thursday, February 26, 2009

Alright - Let's have the fun begin....we would love any support you can provide. Volunteering, monetary donations, silent auction donations, services. We would love to help advertise you services along with raising money for our cause. Mark the calendars - April 18th! We will start selling tickets in March. Please contact me via email, phone or through this website or
Love to All
Christi, Bo and Addi

Friday, February 20, 2009

Well just another week at the Johnson house, very nice to say. Addi had her first visit to the dentist on Tuesday, after the dreadful fall up the stairs last Thursday and her teeth check out great. Apparently our daughter is pretty stealthy when she falls and she got her head turned in time, a straight line bruise across her cheek and her teeth took the final blow. She banged them just enough to cause much bleeding along the gums, but no broken teeth (yet) She let them get some x-rays to prove this. And we got to see the permanent teeth, which the first four are knocking to come in. I guess that is what happens when your child gets teeth at 4 months, they come out sooner. She really did great, got a little antsy when they tried to x-ray the sided, her mouth is too small so maybe next year. She left them clean them and floss. She was real excited to get her prize until she shut her finger in the drawer. Tears fell then. Darn those plastic drawers.
Last night we stopped in at Bo's work's meeting they have going on right now. It was good to see Bo in action. His fatigue levels are still extremely high, but Addi and I keep pushing him to try to do more and more stuff. There was a lot of amazing support and encouragement from fellow workers. It was good for Bo to hear their support. Thank you to everyone and hopefully soon we will get him back there full time.
Love to All
Christi, Bo and Addi

Monday, February 16, 2009

Alright - I have thought this one to death and we are going to go forward with our Spring Addi's Cure Event. So please mark you calendars for April 18th...I will get more information out a little bit later. We are trying to keep tickets the same price, along with more entertainment and a themed casino night. We would love all the support we can get along with some great partying, there is so much to celebrate!
With Bo still recovering from his transplant, we might need a little more help this year to pull the event off, so if you have some free time, items to donate, or any monetary donations, we greatly appreciate your help. We have about 3 weeks before we really start advertising so we would love to advertise our sponsors at that time and during the event. Please feel from to contact me or We will be updating the website as soon as possible.
Always thank you for those that support us and if you business plans on donating again this year, I would love to help get our company name out there as one of our sponsors with our event this spring.
We will be looking for volunteers that evening as well, thank you to the girls last year that got some community service hours in as well as helping us, I will be contacting soon.
Love to All
Christi, Bo and Addi

Thursday, February 12, 2009

Hello to All - My we love our weather right now. Yesterday was a little windy and wet, but 70's in early February, any day. Nothing really new to report health wise. We see Dr. Crawford for the Brain MRI, March 3 and then Dr. Palmer for Biopsy March 19th (Happy Birthday Mom)
So now we get an update on Addi...she fell last night, knocking her teeth. We are waiting to see what is going to happen. Her gums are red and cut, let's just hope that is all there is too it. It is funny I told some friends of mine things happen in threes, Logan, Byers and the next wild child is Addi. She fell last night, up the stairs. We will have to wait and see, I already called the dentist.
On another note Addi's new thing is that "something" (today she lost her ball) is "BREAKING HER HEART." Now that is a hard pill to swallow as a Mom and Dad. She also has started saying that her "dreams cannot come true, because ____" then you can fill in the blank. Seriously, turn up the drama on this one. To many princess movies I guess.
She is really into love right now, they talk about it at school a lot. She loves about everything and everyone, but as a plug to us, she really loves her Daddy and Mommy. Daddy is always first, but isn't that how it should be...Mommy needs to cut back on the discipline to move up on the scale. Three is a fun age. She puts Daddy in time out ALL THE TIME, lord only knows what pestering he is doing and she tells him when he is grumpy to "LOSE THAT ATTITUDE" he needs to shake it off. Then she proceeds to show us how to shake it off, normally the attitude leaves and laughter comes. Somehow it always works.
Enjoy the day
Love to All
Christi, Bo and Addi

Friday, February 06, 2009

Good Morning - sorry yesterday was a long day. Finally we had an uneventful trip to visit with the Doctors. We started off by dropping Addi off at her friend Maddie's house for the day, at 7:00 am, thank you Robin and Brian. Then off we drive. We got there around 9:30, did the standard blood tests, chest x-ray, and PFT's (pulmonary function tests aka how well the lungs are working) Bo's PFT's were up, so he is breathing stronger and stronger everyday. Then we went to visit our friends at the Center for Living, where Bo did rehab, and they reassessed him. Everyone is trying to figure out and conquer Bo's fatigue levels. Surprising or not surprising Bo performed better than when he left, Thanks to Dave the trainer. He is at 80% of a "normal" healthy person. Still no answers to fatigue. Then we wait...Duke time.
We got in to see Dr. Palmer and he reiterated what the nurses that performed the previous tests said, that Bo is getting stronger. He touched base a little bit about the lesions on Bo's brain, he is really letting Dr. Crawford take the lead on that one and he will work with him depending an what Dr. Crawford finds and assesses. (What great teamwork and we are so glad we found Dr.'s that are not afraid to check their egos - Neither one of them have an ego (rare).) Side note - Dr. Crawford was listed in the top 5% of Oncologists people would want to treat them, we sure got lucky meeting him and Susan.
Dr. Palmer spent a lot of time talking with us about Bo's fatigue level and trying to figure out what might be causing it and what might help it. He has admitted to us that this might be something they will never find the cause for, but the will always try to make Bo feel better. He has admitted that Bo is one of the few patients that have survived the type of complications he has and he (and the medical field) are unsure of what neurological complications could have occurred when Bo was surviving on ECMO. It is possible that Bo suffered complications from ECMO, the lesions could be suppressing his activity level, all the medicines Bo has taken at different times could still be filtering in his body. He does believe that with time Bo will get stronger until then he is going to do all the he can safely do medically to help Bo along. So we are tweaking more medicines, adding some, cutting back on more and trying this for a little bit. In 6 weeks we go for another biopsy of the lungs and hopefully we will keep getting great results. We are also going to revisit with ENT (Ear, Nose and Throat) to look at Bo's vocal cords. He has been coughing a little more, could be due to weather and I cannot get him to wear a coat, but just to double check nothing is sneaking down the wrong pipe making him cough. Remember though we are visiting Dr. Crawford in 4 weeks for another MRI of the brain, someone has to check is still has one in there...just kidding, we hope and pray those spots are not changing or they could just leave for as far as I am concerned.
Sorry the post was so long, but I wanted to try and explain where we are now, where we are headed and how grateful we are for having you all along with us on this journey. I think forgot to mention that before, so I thought I would sneak that one in there.
Take care and love to All
Christi, Bo and Addi

Wednesday, February 04, 2009

Hello I forgot to mention before that tomorrow Bo and I are traveling to Duke to have some pulmonary tests done. These are the standard tests he has been having every month and before it was every 2 weeks. Dr. Palmer will hopefully give us some light on Bo's tiredness. Wish us luck and we should be back late tomorrow. We are not expecting anything out of the ordinary, so let's hope we are right with that expectation.
Love to All
Christi, Bo and Addi

Hello to All - Well today we got our first "real" snow day. Now everyone in Kansas don't laugh at our level or snow, all that matters is that we got snow, Addi got to skip school and Mommy got to make snow angels too...Addi wanted to make a choir of angels. I do have to kid that doesn't get cold either. She would have stayed outside all morning, but Mommy couldn't hang.
It has almost already melted, but we still had fun! Addi did say her favorite part was the hot chocolate afterwards. She looked a me and said, Thanks Mommy, I sure do love you!

Love that kid

Love to All
Christi, Bo and Snow girl Addi