Monday, December 29, 2008

Hello - Christmas was wonderful at the Johnson House this year. Addi is spoiled, but not too rotten yet. Funny story - Everyone knows I love a bargain (another word for always looking for a deal or sale, aka - Cheap) So I get most my Christmas stuff after Christmas and then make the next years more decorative. Anyway, I found this ornament that opens up and sings "Away in a Manager" with the manager scene inside it that goes in a circle, anyway, I gave this to Addi. (She likes to pretend to be Hannah Montana now when she sings, and well that has been one of her hit songs along with Rudolph, I have to record and post, too funny)
So I hear Addi messing with the tree and playing with her new ornament (not any the new toys she got...mental note, less toys) Then I hear her say, "I can't believe it, I cannot believe it." Immediately I flash to this morning when she showed me an ornament under the couch she had broken and hid. (don't worry she got the speech about always telling the truth and not getting punished,hehehe) So I think, dang she broke it already, there goes $1.50 I will never get back. In she walks still muttering "I can't believe it" She looks up with her big eyes and says, "I can't believe I got this ornament, I just can't believe Santa brought me this. " The ornament wrapped tightly in her arms in a big hug next to her chest. That's when I knew...she truly is our miracle and brings out the Christmas in all of us.
On that note a huge "Thank You" to the elves that left some soup, hot at that and a present for Addi on the doorstep. I do not know who you are exactly, but she loves her doll and stroller.
I hope everyone had a wonderful Christmas and an even better New Years. The Morgan's are on their way out here and I cannot wait to see them. The Harvey's are coming too! It is hard to believe that it has been over a year since I have been able to go home. (I know home is in NC also, but home is always where ever your parents reside also)
Love to All
Christi, Bo and Addi

Tuesday, December 23, 2008

So sorry, we got that call late yesterday that everyone came back negative on Bo's biopsy and infection tests! Yeah...She said she only had good news, that is always a good way to start a conversation. Bo is finally coming down on some of his meds, so fewer pills, what a good way to start the year off. Unfortunately for Bo, the doctor thinks the best way for him to overcome his tiredness to by more exercise. Seems contradictory, but Bo needs to use those lungs get some oxygen into his system and hopefully that will help. We also do not have to go back until February 5th, so Bo and celebrate his birthday without a doctor visit! On that visit he will have to do a CT scan, 6 minute walk, and the regular tests, but no biopsy. That will come 6 weeks after that...all this of course is assuming we can keep the germs away from Bo. We have bought stock in Lysol and Clorox, oh and Addi's favorite hand sanitizer. I guess Bo gets off easy this Christmas, because I just got everything I wanted.
I do have to mention that yesterday due to my delay was me trying to cook dinner with no water. Something I completely took for granted until the water line on our street busted and it took until 8:00 to fix. Good thing we also have stock in bottled water.
Addi and I are off the play. Merry Christmas Everyone! Thanks for making 2008 such a wonderful year!
Christi, Bo and Addi (aka Steve Smith :(, Jesus, Mary with a baby in her belly, Every Princess you can think of and now thanks to High School Musical - Troy (me) and Vanessa - Seriously, no more TV for her)

Thursday, December 18, 2008

Hello - Boy is doctor day a long one. Thanks to our friends that helped out with Addi today and yesterday so we could leave last night and get a good nights rest before testing. We hope Preston and CJ feel much better. Thank you Hannah for sharing all your toys.
We started the day at 7:30 check in for breathing tests (PFT's), blood work and chest x-ray. Then went down for our bronch and biopsy. After that boy had to wait an hour before he could eat, so we visited our friends on 3rd floor ICU. They took care of Bo and me for so long how could we not wish them Merry Christmas. They are so sweet and appreciated seeing Bo. They have a tough job and not everyone gets the ending we did. No matter how hard they try not to care, they do. Then off to lunch with our buddies Joe and Marilyn. I am so hoping to get an email for Joe soon saying that they get to go home! I will keep you posted on that one.
Then of course the waiting game begins. Oh how I do not miss that! We finally spoke with Dr. Palmer, he will be our Pulmonary Doctor for good for now on. He is going to work with Dr. Crawford, our oncologist, to keep the cancer away. He stated that until they get the labs back, there isn't much to say. Looking into his lungs he thought everything appeared alright, but he hesitated to say that because he has no proof to back it up. We talked about Bo's fatigue levels and without the labs to base things off of he is hoping it is just Bo healing from his ordeal and maybe that Bo should increase his activity level so more. We are going to talk with the rehab ladies about getting a cardio schedule for Bo to follow that should help increase his activity and get the heart racing safely. So right now no news is good news and we should know more on Monday. Dr. Palmer did make a joke for Bo that he good looks and charm can only get him so far, that he might have to just work this one out...boy someone has been talking to him.
As soon as they call on Monday I will let you know. Thank you so much for the prayers they are working.
Love to All
Christi, Bo and Addi

Wednesday, December 17, 2008

Hello to All - I hope you are enjoying the Christmas season. It always amazes me how quickly Christmas sneaks up on me. I try to never let to stress me out, that is just silly, we are suppose to enjoy our time together and the presents are always just gravy.
Speaking of time together I have a little favor to ask, along with the many from this summer. Bo has a check up tomorrow, they are doing biopsies, breathing tests, the whole work up. And I have to admit I am a little nervous. Mostly because I just want Bo to always be getting better and a little bit selfishly I would like him home for Christmas. He promises me no matter what they say he will be home, I just wonder why in the world did we schedule this so close to the holidays. (I do not think we had a choice in the matter) We are expecting an uneventful trip, maybe some tweaking of some medicines, but to come home and stay there for a little while. So my favor is that everyone pray for things to be healing well for Bo and that he will get the enjoy the holidays with nothing hanging over his head. I would like a little less stress and a lot more family and friends visiting.
Take care to all and we will update as soon as we get some results.
Love to All
Christi, Bo and Addi - back to Jesus...

Sunday, December 14, 2008

Christi here - Seriously sometimes you cannot make things up that kids do. Addi has always been a little crazy, obsessed, with the manager scene that comes out around Christmas time. I am very proud of her abilities to remember ever piece, Shepard, wise man, Mary, Joseph, and Baby Jesus, but this year she has taken it to a whole new level.
Let me start by saying Addi has been very clued in on pregnant woman, our doctor, Dr. Snyder was pregnant and she has now had a wonderful little girl, but anyway, for a long time Addi would tell people she has a baby in her belly. His name was always baby Connor thanks to our friends Walker and Candace that had baby Connor right before Bo was called for transplant. Anyway, so she liked to pretend to be pregnant for the longest time. Well now that Christmas is around Addi loves to pretend to be Mary having Baby Jesus. She would run around telling everyone that she has a baby in her belly and he name is Jesus. Great, that is fun to explain. So to appease my daughter's obsession with the manager scene I finally got her a toy one to play with, which she sleeps with now. But lately the toy baby Jesus is under her shirt and truly in her belly. I guess it could be worse and she could eat him and really put him in her belly. Well now that mind has gone to a whole new lever these last couple days...
She now proceeds to tell everyone that she is Jesus. Not quite sure what to say now. I have witnesses...we were out last night at a party and everyone would say, "What's your name?" "Jesus" was always the reply...I would say Lord help me, but it appears he has entered our house. You have to love little kids. It does make church more interesting. Addi now prays for Daddy, Ms. Sue and Mr. Tom, all her family and friends, Jesus, Mary, Joseph and Steve Smith. Seriously in that order. Kids...
Love to All
Christi, Bo and Addi (aka Jesus)(aka Mary giving birth to Jesus)(and today I am sure around 4:00 we will become Steve Smith)

Wednesday, December 10, 2008

Hello to All - I just wanted to let you all see my new favorite picture...
I also wanted to ask everyone to say a special prayer for our friends Sue and Tom. Tom passed away Monday night from a long fight after his transplant. Sue has been a rock for Addi and I when Bo was in the hospital and we were living at the summer house. Sue especially has a special place in Addi's heart, they played dress up, got the monster our from under the bed and wore their ball gowns to dinner. I hope that we can be as good of friends to her these next couple weeks as she was for us this summer.
Thank you everyone
Love to All
Christi, Bo and Addi

Monday, December 08, 2008

Hello to All -
Finally we are all starting to feel better and get into the Christmas spirit. We are still really hiding out at home, mostly from germs, but it has been nice to spend this time together. Only every now and then do we get stir crazy and have to go out and do something, but going out for dinner is always a good fix for that one. Cooking is one thing I greatly appreciated that the Residence Inn took care of, because now, ugh. I am working on it and I shouldn't complain, my incredible neighbors helped out immensely when we got home bringing meals. It did teach me that I might need to take come cooking lessons...oh well hopefully my Mom and Dad can visit soon and I can get some lessons from them.
Bo is doing well. He is getting into a nice routine of 2 days a week hand therapy, 2 days a week trainer, and 5 days a week working out on his own in the basement. I guess now I need to do something about those few extra pounds. But it is the holidays...
On a funny note, Addi is obsessed with the Panthers. Since we took her to the one game, she wants to watch every game and all football is the Panthers. She gets some of it, always want to know what they are going to do next, throw, run, kick...and she loves number 89, Steve Smith. You can call our house and ask her if she likes the Panthers, Who her favorite player is and she will always say, Steve Smith, number 89. He catches the ball and makes touchdowns. She is so great!
Love to All
Christi, Bo and Addi (aka Steve Smith)

Tuesday, December 02, 2008

Hello - and guess who thought it would be fun to get the flu also! Thank God not Bo...Yep, one week after Miss Addi got sick, Mom is down and out. Seriously the flu shot knocked me on my tush this year and now this. Stress must reek havoc on ones immune system. On well...more time at home with the family. This is causing a big cramp on my Christmas shopping, so sorry if the presents are a little late.
Bo is doing well. He is working with a personal trainer now to help keep him on schedule and in shape. He also got his Christmas gift early....a treadmill. Lucky him. I already got my present, and Addi has way to many coming.
We visit the doctors again on the 18th for a bronch and biopsy. We also see a dermatologist on the 15 to keep an eye for skin cancers, which are prone when you are on immune suppressants.
Things are good and getting better.
Take care
Love to All
Christi, Bo and Addi