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

Tuesday, November 25, 2008

Hello to All - Christi here. Sorry for not posting. Things were quiet after I posted last time and then the weekend hit. Not like the other weekend, but this time all Addi. Poor little thing got the flu...viral. The last thing I wanted to here with Bo's health this year. She has been running a fever and through up at night during the weekend. Monday we went and saw the doctor and she confirmed viral. She was really on affected a night with fever and throwing up, but now she has a head cold with it. I hope we are done being sick, but her poor nose is red and sore. Thanks Bob for the email about the Vicks on the feet, we are trying it tonight.
Bo is doing well with all this. Nothing, so far. Of course we all got our flu shot, but we know those are not 100% all the time. At least not for Addi. So it looks like we will staying here, I better get my turkey.
If I forget and do not get to talk with everyone, please have a wonderful Thanksgiving and know at our table and in our prayers we are thankful for each and everyone of you.
Love to All
Christi, Bo and Addi

Monday, November 17, 2008

Hello to All - Talk about an amazing weekend. (Busy, but fun) Unfortunately my friends from Duke were unable to come and visit, Debbie wasn't feeling well, and Sue enjoyed her time at home with it raining, then had to race up and see her sweet Tom. He is a fighter, please pray that he can get off the vent soon. But hopefully we can meet up soon.
Saturday was a marathon of birthday parties. We love to see all our friends, and they love to plan parties on the same day! First our friend Maddie turned three, we painted and glued. If anyone needs ideas for Christmas for Addi, Elmer's glue is the trick. She liked to squeeze it out on paper and glue anything. Then lunch with friends, Peyton and Patterson, a little nap with Daddy and then we were off again. Next was our friend Nyla's she turned 5 and we jumped like crazy a Monkey Joes. Addi has the best time with her older friends, CJ and Hannah, by the time we left there, Hannah was our best friend. Unfortunately we had to leave a little early to move on to Owen's birthday. More jumping and gymnastics, he turned 3! Finally we finished the night off at Taylor's Tinkerbell party and I think Addi ruined the movie for everyone because we watch bits and pieces of it everyday (thanks Cousin Wyatt) Addi would say what was about to happen right before it did...ooops luckily the kids didn't seem to mind. Then off to bed. And for those wondering, I did try to leave most partied before cake and ice cream due to the influx of activities and excitement. (Daddy got one good day of rest)
Then Sunday...I let Addi sleep late with Daddy and did church by myself. Then home and off to the Panther's Game. Yes, the whole family attempted to go the game. We got there right at kickoff and left at half-time, but I do believe that was one of all of our best days. Bo was excited, but tired, to get out of the house. That all seemed to fade when his daughter became obsessed with football. "Daddy what is he going to do next," "throw" "run" and then always "Ah Man he got tackled" Thanks to the drunk men beside us, Addi always knew what to yell. I think she just liked that everyone was yelling something. But I really do think she got the idea of it. Run or thrown and then try and tackle him...sometimes we kick. Oh and we all loved the cheerleaders!
Back home for nap time and then I went to see Chicago with some girl friends and Daddy and Addi watch Dora all night before bed.
Ah what a weekend. I think I will hit the nap time today at my house. If anyone want we will all be sleeping around 2:00.
Love to All
Christi, Bo and Addi

Wednesday, November 12, 2008

Hello to All - Christi Here - Hopefully soon we can get Bo back on here. It is hard for him to type with his hand. But he is working on that. He sees a hand therapist, I am sure she appreciates me calling her that, 2 times a week. Little by little he is getting more flexibility back, next will be strength.
Things here are good. Tomorrow we meet with the local lung doctor. Someone here that keep an eye on Bo just in case he goes into the hospital for some reason and we cannot get up to Duke. His name is Dr. Howard. He comes highly recommended and works with the "exception" in lung transplant patients. It was imperative we found someone well versed in the medicines that Bo is taking so we have no confusion. Other than that not much to post about about a few of our friends.
My dear friends Sue and Debbie are coming to Charlotte for a little R&R. I hope to meet up with them on Friday, I miss them everyday and feel like a horrible person for not keeping in touch better. I vow to do better. My hero Marilyn, she had parts of her feet amputated due to complications after her transplant, is up walking again. Each person's journey is so different, but it appears that Marilyn's has been extremely complicated, but nothing is slowing her down, physically or spiritually. She is such an inspiration. My dear friend Bob had shoulder surgery, please pray that he makes a complete recovery, painless and quick. He will start rehab also, so maybe a few prayers for his therapist. (A warning also for his jokes. hehehehe)
On a sad note, a fellow cancer fighter Pat Kitts, I hate to say lost her fight, because she is now in God's hands, so we will just say is continuing her crusade up higher. Her spirit and fight were constantly hopeful. To read more about her or send notes, please visit We have to continue to fight this awful disease. November is Lung Cancer Awareness Month, but no one seems to know. I hate the stigma that goes with Lung Cancer and until that changes there will never be the support or funding. I am just glad we have all you. Enough on the soap box...Sort of like the old days. Maybe we need to pick three things to pray for...Please continue to pray for all those fighting cancer, any type and for any reason, known or unknown, that it occurred. With that said, for any one that has to venture down the path of transplant pray for them and their family that love and support them. So many quiet fighters please give all strength. Remember One Day at a Time, One Moment at a time, One Breath at a time...we cherish all.
Love to All
Christi, Addi and Bo

Sunday, November 09, 2008

Good Evening - It sure is weird, but nice not to put our day to day activities. But for those wondering life is good. Bo is working on getting stronger, he is still really exhausted all the time and rests a lot. But do not fear I make sure he is getting he exercise in to get stronger and stronger. (Little Buddy is on a diet and needs the exercise also, so he is his walking buddy. For those that do not know little buddy, he is the youngest dogs we have- I would say smallest, but that is the problem, he isn't the smallest any more.)
Saturday was a beautiful day weather wise. (Friday was also, but I ended up cleaning leaves out of the garage and reorganizing things, I did figure out the leaf blower, finally) So Saturday we did our Christmas pictures, Bo was feeling exhausted so he rested, and we sadly missed Maggie's 3 b-day, sorry Maggie. When Bo is feeling exhausted I like to stay close by. Then we did some driving around. Back home for nap time, then dinner and smores at the Grahams, well for Addi and I, Bo rested some more.
Sunday off to church, donuts for being good in church, we visited a new Super Target with Aunt Caroline, you know you are a Mom when new Target's are exciting, that trip took about 3 hours. Home to clean the house and play outside. Life is pleasantly boring right now. Thank you and God for that. I am working on teaching Addi what Thanksgiving is all about, she is more worried about what the turkey's say, but we are so thankful for our health this year.
Love to All
Christi, Bo and Addi

Thursday, November 06, 2008

Hello to All - and yes we made it home! The day wasn't so bad, long but Addi always keeps us entertained. Today she was obsessed with making puzzles which is nice, hard to move from place to place, but nice because the 3 year old is STILL! Amazing really when you have a girl that runs and tries to run faster. I really need to get her into some soccer, heck track if I could. Anyway...
Bo is officially tube free. It was a little funny when we went to see Dr. Marriquin (spelling on that one) He always says "Hey Buddy" and then get to business asking questions. Halfway through the questions he looks at Bo and says, you are not going to answer these questions honestly are you, you are just going to tell me what I want to hear so you can get that tube out before Thanksgiving. Smart Man...Bo did answer honestly and tube came out. Mind you most people I know they schedule for them to go to radiology and have this "procedure" to have it out. I turned my head to pick up a puzzle piece for Addi and next thing I know the nice Dr. is going to the trash can with the tube. I looked at Bo and he was a little shocked. I guess one good yank is all it takes. I told him Addi has been doing that for weeks, thank God she didn't pull to hard.
Then to Dr. Whitsell, the vocal cord doctor, who is apparently famous. Chris Brown and other famous musicians have visited his office. (Has anyone heard Bo sing lately, we are going for more miracles now...jusk kidding he does a great "What's gonna work, Team Work" with Addi - Wonder Pets for those not around children) Bo's vocal cords are doing well. Need to drink more water and keep them moist and that will help with some of the raspyness.
Back to Dr. Snyder, whom Addi is also obsessed with because she has a baby in her belly. She is truly about to pop. Bo's breathing tests are better, we are coming down on some medicines and he is doing well. She did warn us about the winter colds. So again if you even think you are coming down with something, please keep at least a 5 foot distance from our family. We greatly appreciate it and promise to hug you when you are feeling better.
Then back home...home sweet home.
We did miss all our friends, Joe and Marilyn, Sue and Tom and Don and Brenda. I guess they were off living life as they should be. We will see them all on the 18th of December when we come back.
Love to All
Christi, Bo and Addi

Wednesday, November 05, 2008

Hello to All - Life at home is going well. Bo is working on getting "normal", but thankfully he is slowing down to do it. I think those first couple days he was running in adrenaline and that carried him through and then he hit a wall. I hope we are climbing back out and getting some strength back. This time we will do it slow and steady.
Tomorrow is really an all day doctor day. First, Addi is coming with us. I love my daughter, but I was hoping she could play with friends while we went to Duke. She is coming not because we do not have great friends that wouldn't take her, but because she asked. She has been asking a lot lately why did she have to play with friends and family while Mommy and Daddy saw the doctor. Why can't she go? There have been tears also, so like always, Addi comes first and she comes with. Heck you bring a 3 year old in to talk with the doctors and somehow things go a little faster. This might work in our benefit. Plus they all know her anyway, why not again.
On to our day, first we do the pulmonary function testings, blood testing and x-ray. Then to the "wrap" doctor to check that our and "hopefully" remove our last tube, the GJ tube Bo at one time was being fed through. Hopefully that will simply be pulled out. Then to revisit with the Ear, Nose and Throat doctor about the vocal cords. I think things are fine there, so we will check that our as well. Maybe grab a little lunch and back to Dr. Snyder the Pulmonologist, should be our last time seeing her, she is due any day now. After that we are on our way back home.
Wish us luck, We (I) think we might need it!
Love to All
Christi, Bo and Addi

Saturday, November 01, 2008

Just a few pictures from Halloween and in true "girl fashion" Addi changed costumes halfway through the night...she saw another princess and had to change. We also met Minny Mouse, a girl about 13 trick or treating that we had to hold her had and tag along with. Nicely enough she took Addi in stride and took her with her...we might have a new babysitter...
PS - One more of Double Trouble - Addi and her friend Patterson - I have flashes in 13 years...It is good to be home.

Wednesday, October 29, 2008

Hello to All - Things are going well at home. Bo met today with a local "hand therapist" and she is going to meet with him twice a week to help the hand out. I hope she just realize the Bo does better when someone is making him work his hand out then doing it on his own. But that is also another whole story.
On another quick note, today is Bo and my 7 year anniversary from the day we met. I know that seems crazy, but you all now know that I am crazy, to remember. But who could forget the day that I interviewed with FIG and didn't get the job...Seriously though I kept that one my day planner. What a crazy ride it has been. I wouldn't change a thing, well maybe the cancer part, but whatever it takes to get you to realize what someone really means to you. What you will do for them, who you will stand up against and who you be quite you Bo and another 100 years more.
Christi, Addi and Bo

Monday, October 27, 2008

Hello - It sure is nice not to really have anything to post. It will just have to be more and more pictures of Addison, once I get them off the camera!
Bo is doing well, he is pacing himself getting into the office and resting at home some. Then exercise later in the day. He starts rehab in Charlotte tomorrow and then I think I am going to look into getting him a trainer for the other days. Nice to talk about considering where we have been...crazy to think that it is exactly 5 months for us today that we got the phone call. I was forever lost in a strawberry patch babysitting some friends girls. Boy did I dump them off on another friend, sorry ladies. My how the babysteps add up.
Again thank you for the prayers and love
Love to All
Christi, Bo and Addi

Saturday, October 25, 2008

Hello - Just a quick post to let you know things are well. Bo rested most of yesterday and today. I think the excitement of Thursday wore him out. He did get up and walk with Bonnie Jane first and then Charlie. Not quite sure how far he went, but the first step in his progress and routine of working out at home. He did mention that the dogs made him walk faster than he would have wanted, but that may not be a bad thing.
Tomorrow we are going to a Halloween party for Addi, so I hope to take some pictures of our amazing little one.
Love to All
Christi, Bo and Addi

Friday, October 24, 2008

Alright - I have a confession to make, most of you already know - WE ARE BACK HOME! Aside from waiting on the tests for CMV, the doctor decided we could wait and handle at home. It didn't hurt that Addi walked up to Dr. Snyder and said, "Can Daddy go to the far, far away house with us now?" Dr. Snyder told her, "I think it is time for Daddy to go home with you."
We wanted to surprise whomever we could at the office and mission accomplished. And yes you read that right, Bo went and put a couple hours in at the office already. I did warn him the Dr. Palmer's worries were right about him though. He is afraid that Bo will thrust himself back into work and miss out on the crucial working out. So if anyone is going walking, biking (must be stationary) or weight lifting, take Bo. He does start rehab in Charlotte on Tuesday, so that will help. Crazy to think that Monday will be 5 months for us and this "adventure" (not sure if that is the right word) but I would do it again if it means that we are all home together.
Sorry - the phone just rang and Bo's tests for CMV came back negative! we go up in two weeks and hopefully Bo's breathing will be better again. We just have to keep a close eye on him, as I am sure you all will do anyway.
Thank you everyone for you love, support and prayers. I get asked all the time how did you handle this? It seems like a silly question to me because I think most people first would have probably handled it better, but second - how could I not make it through each day when I have everyone of you praying for us, lifting us up and carrying us through. I truly believe God exists and it is shown through each a everyone of our friends and family that were there for us. Our angels - with the biggest being Addi of course. I cannot wait for her to grow up, she is going to be a force to reckon with. (Alright - she can go a little slow with the growing up)
Love to All and we hope to see you soon
Christi, Bo and Addi
PS - Please do not feel bad if Bo doesn't hug...germs and the winter season.

Thursday, October 23, 2008

Hello to All - Sorry another long doctor day today. These days are long, but we are getting them down to a science on getting in and out of there in a reasonable amount of time. Please Bo teasing and talking with the nurses never hurts. They are a great group of woman, and bless them they handle Addi when she has to come with us.
Bo did alright today. His breathing test was down a little bit and they are checking him for infection or a flare up of CMV. This is a virus that some of us carry because we were exposed to it a young age and some of us do not. Sort of like chicken pox. Once you get you are immune to get again. Except CMV when you get is like the flu, so most people do not realize they have it or have been exposed to it. We do know that Bo's donor lungs carry it and Bo never had it, so he is on a special antibiotic to control the flare up, but two weeks ago we had to cut that back due to his white blood cell count going down (a reaction to the antibiotic) So now we keep a close eye on Bo and run some blood tests that we should get the results back in a couple of days. If the CMV is present then he starts on IV antibiotic and hopefully that will work. Let's just hope if this is it, it stays quiet until the blood tests come back. It is possible Bo might have an infection, sometimes bronch and biopsy's (like he had last week) stirs up stuff and then he needs antibiotics for that also. Or Bo could of just been tired today and not do well. Only time will tell.
I promise I will let everyone know when we find something out. (Since we are all working on our PhD's now)
Love to All
Christi, Bo and Addi
PS - Please say a little prayer for Debbie and her family. Yesterday her husband Danny lost his fight in ICU. If you remember Danny was the miracle that had a double lung transplant and then complication to where he then had one lung replaced, so 1 1/2 transplants. I miss my friend Debbie and will continue to pray for her. She always carried herself with so much grace, listened and empathized with me and encouraged all with her positive spirit. I am sorry I did not get to say good-bye to her before she left, and I pray that our paths will meet again. Love to you Debbie

Wednesday, October 22, 2008

Hello to All - Just a quick post to let you know that Bo is doing well and working out. Addi and I will be joining him today and tomorrow is another one of those all day doctor days. I am trying to work out doctor appointments better so we are not going as frequently, just making the days we are there longer. We will see how that happens. I do not think they like to do this because everyone is always running behind. Wish me luck!
Take care and hopefully I will get Bo back on here soon.
Love to All
Christi, Bo and Addi

Monday, October 20, 2008

Another day down at rehab...hopefully things will got well this week and we can get Bo home. Caroline appreciatively took Bo up this morning so I can be with Addi and get her to school and her activities this week. We will take off and be with him Wednesday. I sure do miss him, no matter how much of a hard time I give him. Talk about two people spending a lot of time together.
Bo has more doctor visits this week and these are the ones that we know about...I keep getting calls about other appointments I didn't know we had so this should be fun.
I am going to rest for a bit before I run around again tomorrow trying to get stuff done that we haven't done all summer.
Love to All
Christi, Bo and Addi

Sunday, October 19, 2008

Talk about a good "normal" day. PJ's until 12:00 - I think everyone was exhausted from the party the day before. We have some extremely generous friends and way to much princess stuff. Addi didn't even get around to opening presents until this morning. I think we are only bringing one out a day...we will see.
We just got the call from Bo's biopsy. All results at this time have come back negative. We are negative on rejection, infection and his levels are looking good with the meds that he is on. So one again our prayers have been answered. Bo will have another biopsy done in December. Let's hope we get a good Christmas gift. But let's not get ahead of ourselves. One thing this whole process and transplant has taught me is take today and don't worry about anything else.
Thank you everyone for all the prayers, you are carrying us through.
Love to All
Christi, Bo and Addi

Saturday, October 18, 2008

Funny that I read the post before saying, Talk about a long day...We have had another one, but a fun one! Today I got up and went to the lung cancer run in Cornelius. I tried to get there and back before my two sleepers woke up and I almost made it. It was a 5K and 15K...very impressive turnout and nicely done. (I did the 5K walking. I have decided that the 5 months of sitting in a hospital didn't do much for my physical fitness, a little sore already tonight.) To check it out visit..
Then Bo's Dad and Papa came to visit. It was great seeing them. Bo's Dad, Berry, spent a lot of time with me during the two procedures. It was great to see him again. He was excited to see Bo doing so well with their own eyes. Once again hard to believe he was so sick, he is doing well. We all had lunch at the house and then got to get ready for Addi's B-day party. It was great seeing everyone and Addi is so sad that all her friends are not at our house right now playing with her. (Note sorry we missed those that could not attend. We had to keep our numbers small due to exposing Bo to germs. Thank you for understanding. I promise when we can get some time under our belt we will invite everyone that reads this that can get here.)
So now we are at the house, I have yet to unload the car. I think I will do that after our Princess goes to bed and then bring out one present per week or something like that. I think we will put in a princess movie sit down and deal with everything else tomorrow.
Love to All
Christi, Addi and Bo

Thursday, October 16, 2008

Talk about a long day...We got up around 6:30 to be at the hospital by 7:00. (You have to check in an hour early before your bronch) It would have been good to know that the nurses do not even show up until we waited. They were right on schedule and Bo got in at 8:00 sharp. Dr. Palmer performed his procedure and said by eyeballing it things were looking good. Nothing to surprising and thought his lungs were progressing nicely. He is a little concerned for when Bo goes home that Bo will slack on his rehab...I know you all will not let that happen. He needs to walk everywhere and get that exercise in everyday. Dr. Palmer said if he needed to he would have words with him when I say I need help pushing him along. (Someone in my corner when the going gets tough) I think Bo will do fine. He did mention that he would like to keep Bo up here for another month, but didn't think that was going to happen.
Then we came back to the hotel and got Addi. Our beloved Miss Evelyn got up at the crack of down so Addi didn't have too. We are going to miss her and her husband Joe so much. They are leaving at the first of the year to work in the Ukraine on a mission trip. All our love and prayers to them. Hopefully we can keep in touch.
Back to the hospital for the doctor follow up with Dr. Snyder. Bo is working on getting back to the basic meds and trying to loose anything "extra" I know Dr. Snyder loves when Bo negotiates...Funny note, Addi was with us on this visit and I think scared the daylights out of Dr. Snyder who is 8 months pregnant with her nonstop talking. Good thing they do not come out 3. (What's your name? Where did you get your jewels? Your husband. What's his name? What are you doing?...) Nonstop.
Then to physical therapy for Bo's hand. He now has a really cool splint to help straighten his fingers out and then we will work on strength next. We finally made it back "home" around 4:30 for a late nap and dinner. Thank you AB for the great presents (and Jenn) Adding is writing notes to all her friends on her princess paper.
Tomorrow should be slow and back home.
Love to All
Christi, Bo, and Addi

Wednesday, October 15, 2008

Well another day at the doctors down...and only 5 more times at rehab. Tomorrow is a big day. First I have to try and get Bo to the hospital by almost impossible task lately with him being so tired. He has his bronch at 8:00 and then back to the doctor at 1:00, and physical therapy at 2:00. I am not sure how in the world Bo is going to stay awake for all this. Probably luck and prayer. He isn't allowed to work out after being sedated and having a biopsy done. Fear of bleeding. Friday should be a little more uneventful. Hopefully he will get the all clear to work out again and then home.
Then one more week...unless something comes up. Let's pray nothing does.
Love to all
Christi, Bo and Addi

Tuesday, October 14, 2008

Good Evening Again Everyone - Well we made it through today. First we went to physical therapy for Bo's hand. Once again we were told that Bo has a bunch of weakness in his hand with muscle deterioration and loss of range of motion. So now we visit with them a couple times a week to try and get some strength back. This is hopefully get us a referral so some place locally when we go home. Then Bo went to rehab, 6 more times to go. Then back to the clinics to meet with Dr. Crawford our oncologist. This ended up being pretty uneventful. He just said the Bo was in unknown territory and that he was going to do a bunch more research to find the best path for Bo. He would talk with our pulmonologist and come up with a game plan. Bo wants to be very proactive with his treatment. This might mean chemo without the sign of cancer to help keep it at bay. They are going to talk more and come up with a plan the 3 of them agree on...Bo, Dr. Crawford and Dr. Palmer.
So another day down and more tomorrow. Tomorrow we do PFT's (pulmonary function tests - to see how Bo's lungs are working) Then Rehab...
Love to All
Christi, Bo and Addi
Addi through the years...Newborn, One - and yes she feel 2 days before her birthday and did that to her nose, Addi at 2 years at Lazy 5 Ranch and Addi now 3...forever our Princess

Monday, October 13, 2008

Good Evening Everyone - Today has been a crazy day. It is hard to believe that our Princess is 3 today. She has been so excited all day telling everyone, "Now I am 3." She was almost the last of her friends, so I do not think she ever thought it was going to happen. She was so funny because the night before we celebrated with Bo's family. We had a cake and she got to blow out the candles, right after she blew them out she goes, Now I am 3. Smart to think that the blowing out of the candles make you a year older. I might hold onto that idea and freeze time...hmmm
We are all now up in Durham - celebrated last night with her "summer house" family. Addi made cupcakes and they politely shared with us.
This week will be a busy one. Today we meet with occupational therapy to work on Bo's hand. Bo does much better exercising it when someone fusses at him. So hopefully they will be able to refer us to someone local that can fuss at him and help him work it better. Then Bo will do rehab. Then back to the clinics to meet with Dr. Crawford and Susan - our oncologists. I am excited to see them, but a little afraid. I do not think they will say anything to startling, but a few prayers helping that one out wouldn't hurt. I just pray that the cancer stays gone for a long time. I trust that they will have a fabulous game plan.
Love All
Christi, Bo and now 3 Addi

Saturday, October 11, 2008

Hello to All - and my do I need to update Bo's profile picture of Addi. I think she was 15 months when that picture was taken. Anyway...
We are back in Charlotte trying to find the house that somehow every weekend I destroy moving stuff back home. This weekend I focused on bringing the paperwork back home...ugh! Needless to say I sure hope we do not get paper mites. Bo is doing well, just tired. Hopefully tonight we can go out to dinner and get some ice cream. Addi sure does love her purple dinosaur from Brusters. Personally not a big fan of Brusters, Dairy Queen girl here (shocker I know, I worked at the DQ in high school). Bo is excited to tell everyone that he is down to 8 more times with physical therapy, which if every thing goes well he should be home before Halloween. He has a full week next week and with the doctors doing the biopsy Thursday, he cannot work out that day so only 4 days that week and hopefully 4 days the next week, see the doctor and home by the weekend. Let's keep our fingers crossed that all the doctors will only have good things to say.
I hope everyone has a great weekend!
Love to All
Christi, Bo and Addi

Thursday, October 09, 2008

So this week we stink...sorry. Addi and I are back up with Bo after our couple days in Cornelius so Addi and go to school and play with friends. Thank you to everyone that made time for us, we greatly appreciate you time, attention and toys. Addi is so ready to be home, but such a trouper to be with us. I am not really sure what we are going to do when we move back to Charlotte permanently and we lose our beloved Evelyn, I do not know many people that would help a complete stranger, who was (is) a little nutty living in a hotel room with a 2 year old to entertain in a hotel room. She is truly our prayers answered in a time of need.
Today we visited with the doctor and cannot complain about the wait time. Bo is doing well and we no longer have to bandage where Bo's trach was...he is healed. So now we work on getting rid of the GJ tube and therapy of his hand. Bo's breathing numbers a little down right now. There are numerous reasons for this, but just to be on the safe side we are going to take a biopsy of his lungs next week on top of meeting with other doctors. This will tell us if we need to increase some medicines or just tweak them. So next week we have answers. I pray this isn't anything more serious.
Take care
Love to all
Christi, Bo and Addi

Tuesday, October 07, 2008

Hello everybody, this is Bo. Thanks to everyone who has been praying for me and reading the blog. I am just trying to finish my rehab and get back to Cornelius full time. It's been a tough road, but so worth it to see Addi and Christi. I am sorry if you have called or written an email to me and I have not gotten back to you. I have read all the emails and listened to the voicemails and appreciate everyone's well wishes.
Good Afternoon - Sorry for the weird posting times, but we are having a weird week. I decided that I would try to stay in Cornelius to help Addi get to school and all her fun activities - friends, friends and friends. But as you all know, I have never left Bo this long. He is in very capable hands, Tracia Bo's sister, but so hard not to see him all the time. He had a rough weekend a little, just not feeling well, so that didn't make it any easier to send him off. But I am hoping Bo will come home within the next month and there are things around here I need to get done.
I also have a birthday party to plan. It is hard to believe our princess will be 3 on Monday. Crazy! I personally feel like she needs the party of all parties, at 3 she has seen, experienced and done way to much. The world should revolve around here, because as well all know becoming an adult comes way to fast. I hate that Addi knows doctors, nurses, what a ventilator is and does, and all the other stuff. But then again that's life and the cards we are dealt. So I will put her in med school early. Just kidding.
Bo is resting well today and I will see him Wednesday night, Thursday we are All Day Doctor Day again and then home Friday. I will post in between then to let you know how things around going.
Love to All
Christi, Addi and Bo

Saturday, October 04, 2008

Good Morning to All - Well we made it back again. It is always exciting to come home and I hope this traveling back and forth will make the transition home a little less shocking and easier on all of us. (much less I have to start moving things home in truckloads. Amazing how much stuff you get gather over a summer)
The house is resting and things are going well. Bo is still just tired, but week by week he is getting stronger and stronger. He is making it our a little bit more, so some of you might see us out and about in Cornelius. If you do see him, don't think of him as rude if he doesn't hug you or shake your hands. We are still working on the germ things. Also if you have a cold maybe just wave, we appreciate you thinking about us and caring, but germs are not our friends.
Anyway, someone asked for a picture, so this is the best one I got sorry. I know you all now think I was lying that Bo was so sick, but I would rather you only think of him this way. I will keep those memories to myself.
Love to All
Christi, Bo and Addi
PS Handsome I know!Also this is how my daughter now rides in her chariot! Seriously kid!

Thursday, October 02, 2008

Good Evening Everyone - Today was another "normal" day. We played in the morning and then took Daddy to "exercise" Which Addi thinks only boys are allowed to exercise there and wants to know when we will find the girl's place. I am not quite sure why she thinks that, but whatever. Maybe because Mommy never exercises anymore. We keep stuffing food in Daddy so next week they do not tell us that Bo has to do the feeding tubes again. More protein through the GJ tube and more protein through the mouth. All is pretty quite here. We are hopefully planning on going to back home this weekend. I might try to stay with Addi for school this time and come back up late Wednesday or early Thursday morning, I just found out Disney on Ice is next week and well we have to see our princesses don't we. Now if I can only get myself to leave Bo in another's hands. I know he will be well taken care of, but not an easy thing to do. It is that or Addi misses having some fun and well, Bo and I always vowed she comes first, second is fun and third ourselves. I am sure everything will work out it has so far.
Take care
Love to All
Christi, Addi and Bo

Wednesday, October 01, 2008

Well All Day Doctor Day is finally done. We were lucky and Bo fit in another work out session, so 9 down and 13 more to go. Bo's tests came back pretty good. He was up on two breathing tests and a little down on one, we will keep an eye on it. He blood work came back good, this they are always tweaking. So we need a little more Magnesium and a little less Valcyte. Bo will have to have one more biopsy before we go, so we will plan that in the next couple of weeks along with visiting with our oncologists. Busy, Busy, Busy...
But we do have some exciting news, Bo got his trach out today! Yeah...he sounds a little like Darth Vader when he talks. All they do for this is pull the metal trach out and let his body heal up naturally. So obviously right now he has a big hole in his throat that should heal up completely in a couple of weeks. Now we just wait until the stomach tube comes out. That they are keeping because they are keeping an eye on his weight. Being so young he burns a ton of calories to heal and then add rehab and we are always going backwards. So whenever you see Bo, make sure he is eating otherwise feeding tube is back on. Not a big deal, just bothersome to Bo.
Anyway another doctor and full day done. Now we rest.
Love to All
Christi, Bo and Addi

Tuesday, September 30, 2008

Sorry, Sorry, Sorry...what can I say other than sorry. The computer has been doing funny things and I have had my hands full with Bo and Addi this week. Not to worry everyone and those that normally go to school with Addi. I try to pay close attention to her and she said that this week all she wanted was to be with Mommy and Daddy, so she came up with us for that reason and that reason alone. I hope I always remember to listen to her when she talks and expresses her feelings. She is always fun to be around. Today at the store she with a ton of people around goes, "Mommy I smell something stinky" I asked well are you stinky and she proceeded to say no, "Mommy, I think you are." Lovely...
Things are good with Bo. Tomorrow we see the doctor instead of Thursday. No reason in particular, it was just easier to fit him in with his doctor tomorrow. I sure hope to post only great things. He has been working out great and feeling good, just tired. The doctors tried him last week off insulin and so far so good. So hopefully that is one less thing to worry about for a while. We will always have to check his levels because of some of the medicines he is on, but for now one small step closer to feeling "normal".
I will write after our all day doctor visit tomorrow.
Love to All
Christi, Addi and Bo

Friday, September 26, 2008

Good Evening All - Just a quick post to let you know that things are going well today. We made it back to crazy no-gas Cornelius. Seriously it is a little funny...I know not funny if you are almost on empty, but crazy. Anyway...I do have to say that when I was getting gas tonight I had the slowest pump on the planet, but I starting talking to the man across from me trying to feel up a moving truck (Uhaul type). I was wishing him luck and he was wondering if everyone was nuts in North Carolina? I tried to tell him everything you all have been telling me. Anyway he proceeded to tell me that they were going to Ohio and that he felt so sorry for his daughter. They were moving there to help her husband he was diagnosed about a year ago with, yes you guessed it, lung cancer. Stage 4 and never smoked a day in his life. Of course we proceeded to talk about different treatment methods and exchanged cards. It is truly amazing how small the world gets when you take the time to talk with a stranger. I pray that they can keep fighting in time for a cure. His cancer is different than Bo's and has spread throughout his body. Their storied were very similar that 34 diagnosed with a dry cough...I will never forget the night of no-gas Carolina and meeting another survivor.
Anyway off to bed...
Tomorrow I have funny Addi stories...always
Love to All
Christi, Bo and Addi

Thursday, September 25, 2008

Good Evening Everyone - Today we had doctor day. And that is not an understatement. All Day at the doctors for clinic visits. For the doctors defense we didn't exactly run in first thing in the morning. We got there around 10:00 and realized that we are part of the Residence Inn head cases that go on Thursday. First we saw Joe and Marilyn, who are doing really well. Marilyn had her foot surgery and got her trach removed today! Then Jon and Barb, they were there for just a clinic visit as usual. Barb is doing really well since. Then Connie and her husband, they are working and moving along like Bo. Then we get to run our usual Thursday tests. First give vials of blood, then chest x-ray, and pulmonary function test. Bo is breathing better this week than last week. So yeah for that! Then to meet with the wrap doctor who got called away on an emergency, so then back to the pulmonary doctors who are going to try and leave Bo off insulin which will be really nice. She is twee king some other medicines that made Bo pretty happy.
Things are going well and let's just hope they stay that way and we can come home for the weekend.
Love to All
Christi, Bo and Addi

Wednesday, September 24, 2008

Another fairly uneventful day. Bo woke up with the sniffles a little, so of course I immediately called the transplant coordinator and she said to keep on eye on him. This doesn't necessarily mean he has an infection. She said a lot of people of the sniffles right now due to the weather changing and allergies. So we are off to try some Clari tin and see if that helps. I do have to say that by the afternoon he was much better.
Tomorrow we spend all day at the doctors. Bo has his follow up with the "wrap" doctor and then tests with the pulmunologist. We are also going to set an appointment with our oncologist to stay proactive on keeping the cancer away. Much less we really like Dr. Crawford and Susan. They helped keep me sane throughout this process. I just pray they can always do their magic for Bo.
I hope everyone has a good evening. Bo, Addi and I are off to dinner. Our first family dinner out, I am so excited! (no cooking)
Love to All
Christi, Bo, and Addi - Together at the summer house!

Tuesday, September 23, 2008

Hello to All - Well another day of rehab done and 19 more to go. Bo has almost been out of the hospital for one week and man does it feel good. Bo feels a little more tired than at the hospital, but now he is having to walk more and do more things for himself so I am sure that is adding to the fun that he is feeling. I do have to send a huge shout out to the Graham family once again, bu this time from Bo personally, he is officially in love with the recliner. I myself am having mixed emotions. I love that he is more comfortable, but on the other hand I think Bo and the chair are becoming one. I will give him a couple more days before I harp on him to get moving some more.
Not much more to post. The days are good, but I am a little guarded becomes sometimes that means another downward ride might be coming.
Love to All
Christi, Bo and Addi

Monday, September 22, 2008

Hello to All and sorry for the lack of posting over the weekend. Bo and I made a secret, well not so secret trip back home. Wow was it so nice to be home. Bo did we miss the Buddies! I do have to say that I think they missed us as much as we missed them. It was wonderful to see all our friends at Touch A Truck. I have attached some pictures for everyone to see some of the fun. It was wonderful, wonderful, wonderful to have Addi and Bo (and the Buddies) under the same roof. We did learn that Bo still have a long road to recovery, but it certainly hoped add more motivation.
I do have to say this morning was so hard and sad to come back. I tried to be all business and remember the big picture that this is temporary and needed for Bo to have the best and safest recovery. With that said, I wasn't sure I could leave Addi at school, she ended up in bed with us 2 out of the 3 nights we were there. I figured that is why we have a king size bed, to fill it up.
Anyway, we hope to be home more often and cannot wait to see more people. Please understand that we have to limit Bo's exposure to people aka germs for the time being, but we will be sure to see everyone soon. Before you know it we will be home for good.
Love to All
Christi, Bo and Addi
PS The picture with the Hot Girls are the ones resposible for putting on TAT! And yes that is a cockpit...

Thursday, September 18, 2008

Thank you everyone for the great advice, I will be pumping Bo full of water these next couple days, weeks, months and years. I did want to remind everyone that Sunday is our Annual Touch A Truck event. So if you are in the area of Lake Norman, please stop by the weather should be wonderful! It is from 11-2...please visit for more information or use the link on the side of the page...
Another day down and things are going well. Bo is slowly feeling stronger and stronger. It is just hard to try and stay awake most of the day when he is used to being able to rest when needed. We spent most of the day at the clinics waiting to visit with the doctor. Unfortunately I was wrong about meeting with the doctor that performed the wrap procedure, that is next Thursday. So today we just met with the doctor, but good news. She is allowing Bo to stop his tube feedings, which will slowly decrease his need for insulin, hopefully. Bo is extremely excited about this because first he doesn't have to hear the pump all night long and this will allow him to leave the house anytime he wants (he used to have to been hooked up from 6pm-8am) So now we just have to nag him to drink tons of water and eat tons of good food with protein. Another step to feeling whole. So now we focus on keeping his trach clean, this will stay for probably another month...Only time will tell.
Love to All
Christi, Bo and Addi

Wednesday, September 17, 2008

Good Evening - My newborn is resting right now and I am trying to find a place for all our "new stuff". Bo made it through is first day at rehab. (22 more to go, providing there are no setbacks) We were a little overwhelmed with how quickly things are moving and we are trying to stay caught up with our new life outside of the hospital. I do have to say, once again I almost teared up when I walked into rehab to pick Bo up. First let me say that absolutely no family members are allowed to stay while our loved ones work out, they fear that the ones working out might get a little more tired with a loved one there to fuss over them. Boy they do not know Bo and I do they. Anyway I walked in and after finding him hiding behind a poll, I found him pedaling a bike chatting it up with one of the physical therapist. That's the Bo I know and love. She proceeded to tell me he was only talking about me, but then I realized it was his version of the way we met. Oh well he can win that one, this time. Anyway, one workout down and tomorrow we spend all day checking in with the doctors, pulmonary and the surgeon that performed Bo's wrap procedure.
Take care and rest up
Christi, Bo and Addi
Good Morning - The post times are now probably going to very, life is busy, but life is good. To ease everyone's mind, we have officially made it our first 24 hours together. The medicines are a little intimidating, I cannot imagine going home when you did Don and Brenda, but we are getting it straightened out. I just like my day to be a little organized when I can make it, that way we can be a little bit on a whim with Addi. The night was a little like having a newborn again. Every couple hours, minutes, I would look over and make sure he was alright and breathing okay.
Just so everyone knows where we are, but is taking multiple pills, but no IV's right now. He still has his trach which we clean daily and he sleeps with a humidifier over his trach. He is still getting his tube feeds through his GJ tube at night, but hopefully when he diet picks up the feeding will stop, but the tube stays in for 3 months after the wrap procedure, we still have about 2 months to go with that staying in. He is currently still using insulin, but they are hopefully this will stop when the tube feedings stop, we will cross our fingers and pray for that. He is doing rehab daily, today will be his first day, and they will help working his stiff right hand. We know Bo will have a little of hands to shake in the years to come. While out of the hospital we will see the doctor once a week and they will keep a close eye on him and me, so that makes me feel a little better. I think that is all right now. Thanks and we will keep writing for those that want to read.
Christi, Bo and Addi

Tuesday, September 16, 2008

It is with great joy that I announce Bo is "home" (summer house) as I type! I was afraid to say it out directly, but I am sure most of you got the hints. We left today with huge smiles on our faces and a couple tears, from me, down our cheeks. Thank God for answering our prayers and for his continued support of this new chapter and path we lead. I pray that we can continue to have strength and may there not be to many "bumps" on our path to going home.
Love to All
Bo, Christi and Addi
PS - It is pouring down rain today and I can only think that it is God, our Angels and everyone crying tears of joy for this huge step we have taken. Thank you all for your support.

Monday, September 15, 2008

Good Evening Everyone - I hope that you all had a good day today. Bo has made another day off the vent and is doing well. He is really pushing and trying to get himself out of the hospital, I just pray we can make it this time. I am afraid to talk about it, I just do not want to jinx ourselves in anyway. He is looking good and feeling better.
We did have an interesting day that was complex for me. We visited the 3rd floor ICU, the people that fought so hard to keep Bo going and held me up in the darkest of days. Bo has a hard time remembering most of his stay there, it will be forever left in my memory. The nurses promised me that Bo would walk out of there, I promised we would walk through when he could. So today we walked in. I was taken back by the memories flooding in, Room 3 will be a room that holds my hopes and dreams along with my worst fears. It is hard to put into words that emotions coming running back. It is truly a blessing how far those baby steps have taken us. Ironically the nurses, Pam, Nicole, Nicole, Elise and Angie were working today. These girls took care of Bo in his most critical of days. I could not surmise the words to thank them for what they did for Bo. How do you thank someone for saving the person you love most in this world. If any of the nurses from 3rd floor ICU and any Nurse ICU and out of ICU are reading this, Thank You. I know that isn't enough, but what else do you say. Thank you for helping Bo, Thank you for caring more than you should, Thank You for choosing the profession that you chose, Thank You for taking the additional time to hold the loved ones up when you are also taking care of patients. Not only did you help Bo, but you made it possible for me to enter the ICU everyday. I teased everyone today that they never knew how I was going to be when I walked in. They assured me it was alright and "normal", but I know hugs were not part of their job, everyday I got one. I do have to say that the nurses kept telling Bo how good he is looking and well he is doing. I had to remind them that I kept telling them Bo was handsome if they would just get some of those tubes out of the way. I tell you, you all think Addi is funny, but we all know where she gets it from. We did get a few tears from of the nurses and it was everything I could do to not. They appreciated seeing one of their "miracles" doing so well. Their job is hard and everyday I am reminded how differently things could be. God has a plan and Bo and I will do everything to make everyone proud of the life we will lead. We need to make them and you all proud of us. Those nurses sure like to act tough and do their job well, but they care, probably to much. Never doubt that they do not care.
Well that is enough of my soap box, it was just crazy to come full circle. Crazy...
Love to All
Christi, Addi and Bo
Just a quick note to notice another event in our Lake Norman area....check out the local charity on the page...


Sunday, September 14, 2008

Good Evening Everyone - Today was another good day. Bo had his plastic trach replaced today with the permanent metal one. This is more comfortable for him and is the next step to having the trach removed completely. (Do remember that this one was changed once before, but the next day is when he got the fungal infection and back to the vent) Please pray that we can stay on the path to leaving the hospital. We got another day pass today and like always we came back to the hotel to play with Addi. Today we got to watch the new Barbie Movie...she loves her Barbie movies. Then Grams and Papa came to visit. (Addi went to the far, far away house with them to play with friend and family) Justin stopped in the say a quick hello and then we rested the rest of the afternoon. Tomorrow we should regroup and enter the world of Monday and the doctors setting the course for the next week. I hope to post good news soon.
Love to All
Christi (alone) Addi (hopefully sleeping) Bo (sleeping)

Saturday, September 13, 2008

Today was good. Bo got another day pass, which means he can leave the hospital for 2 hours, we came back to the "summer house" to play with Addi and try to see how life here might be when that day comes. Bo is doing well, we are concentrating on controlling our breathing on only having positive thoughts.
On that note I want to remind everyone in one week, September 21st, we are having our annual Touch A Truck event in Huntersville/Cornelius...please stop by with your little ones. The entrance fee is $3 with all procedes going to Addi's Cure. There has been so much planning an excitement this year for the event. I am blessed to have a wonderful group of girlfriends to plan such an extravagant event. Also, stop by the silent auction table to check out the amazing children/car items being donated to win. There will be food and concessions as well, so just come right after church from 11-2. Check out for details
I will attach the flyer as soon as I can get it in a picture format...
Thanks to All
Christi, Addi and Bo

Friday, September 12, 2008

Just a quick Friday night post. Bo and I had a good day today, almost normal. We went to lunch in the cafeteria with our friends, Joe, Bob and Debbie. Bo's diet is officially pudding and shakes...hmmm that stinks doesn't it. It was nice just to chat outside and hear funny jokes, from Bob, and get to catch up. Bo hadn't walked much this morning, so he walked downstairs and outside. Then we went to visit Marilyn. Marilyn is one amazing woman. Her and Bo's stories are almost identical. She was on ECMO, she had other complications and she lost color and feeling in her feet, like Bo did in his hand. Bo will have a long road of physical therapy, but he still had his hand. Marilyn's feet didn't fair so well and she (if you remember was released about weeks ago from the hospital) but she had to come back to amputate some toes on one foot and about half the other foot. She is amazing with her spirit in handling this situation. Nothing is slowing her down.
This weekend should be a quiet one, so I will post more soon.
Christi, Addi and Bo

Thursday, September 11, 2008

Good Evening Everyone - Today was a good day. They gave Bo another day pass - 2 hours leave from the hospital. They want Bo to start to feel comfortable outside of the hospital. I am not sure he is going to have that problem. Personally I think they are much needed, he has almost had it inside those walls. So we came back to the "summer house" and just tried to get acclimated around here. Thank you so much Grahams for the chair, we will just now have to get it moved up here when you all are ready for to take it. Bo desperately feels like it will be needed.
Bo is doing well breathing, he has been off the vent completely for a couple of days and is doing fairly well. We all know not to get to excited until he makes to to the week mark off the vent. This is when the world seems to not want us to leave the hospital. So in a week I hope to post things are still going well.
Take care and sleep well tonight
Christi, Addi, Bo
PS Today I am happy to say we had another friend leave the hotel and the hospital world, Don and Brenda. I hope they traveled safely and I cannot wait to read that he is doing well. Also please keep Marilyn, from Joe and Marilyn, in your prayers. She had another procedure done this week and will have rehab to work on for a while.
PSS My dear friend Bob is hopefully coming by tomorrow, I am so excited to get a "Bob Hug" I miss him dearly.

Wednesday, September 10, 2008

Sorry for so late...I had to catch up with friends, pay the bills and time just got away from me once Addi got to bed. We made it back up to Durham. As luck has it, it rained the whole way making my 2 hour trip 3 (one potty break for Addi - and too much sweet tea) then it took me 30 minutes to find a parking spot (no one wanted to leave the parking garage in a down pour I guess) Finally I made it to Bo, who was looking as dapper as ever. He had been growing a goatee still and needless to saw we have not been keeping it up and he looks dashing. He has taken some resting days concentrating on breathing and coming off the vent. He is doing a good job, we just now need to find a way to help pass the time. Tomorrow I hope to talk with the doctors and see how things are medically looking. We established physically Bo is looking good.
It was great to see everyone and we cannot wait to come back to our friends with the far, far away house.
Love to All
Christi, Addi and Bo

Tuesday, September 09, 2008

Good Evening Everyone - I hope you are having a better evening than me. My sweet little girl does not want to go to bed tonight and I hate to lay her down when she is crying, but now she is way past bedtime and we have school tomorrow. (Sorry Miss Kim and Miss Candy) We had to brush our teeth again and then we went down quietly. Win one for Mom
We had a busy day with gymnastics and Dance Class today. We stopped by work and saw our favorite people. We got to see Baby Conner which now Addi thinks that all babies that come out of tummies are Connor. Except she is having baby Swiper...LORDY (is that a word) Then we ended out night talking on the computer with the Kansas Family and that is always fun.
I have almost made it my 48 hours without seeing Bo. I did talk with his nurse quite a lot today and she said that it sort of took it easy today. Which I am sure it is well deserved, but I did warn him that I will be up there tomorrow to kick it into high gear to get us to come home. He is missing everyone a lot and I hope we can see people soon.
Thank you everyone for your kind words of encouragement. I do draw great strength knowing that there are so many people that care and pray for us (and me when I am nuts) Truly know that you are not going unnoticed, I can feel the strength, hence staying here. Plus I have my "family" at Duke checking up on Bo and encouraging him along as well, Thanks Sue.
Take care and Love to All
Christi, Addi and Bo
PS - Lordy is not a word per if we can only get grammar check

Monday, September 08, 2008

Good Evening Everyone - I hope that your day is going well. I have to say that I am having mixed emotions right now. Addi and I came back to Cornelius or as Addi says, the far, far away house. She started school last week and attends school Monday and Wednesday, so for a mother's piece of mind I want to make sure with my own eyes that she is adjusting alright to her new class and will be okay if she spends a couple of days a week with family and friends while Mommy helps Daddy adjust home, when that time comes. She is doing great and loves her new and old friends. I do have to say Jenna and Addi must get together and play, Addi loves her.
So here I am in Cornelius freaking out that I haven't seen Bo for my first 24 hours since the first transplant. The nurses have kept me up with his progress and said that he had a really good and relaxing day. They are practicing during the day of plugging Bo's trach so he can get used to breathing through his nose and mouth and not the hole in his throat. Another breathing exercise which is never easy, but it is a step we have to take to get home. He is working on getting his independence and the nurses assure me that he might need this and that they are taking incredible care of him...can I really stay here until Addi finishes school Wednesday...only time will tell. I know it is what Addi needs and Bo and I did swear and promise to always put Addi first. I just stinks that I cannot be in two places in at one time...
Love and take care
Christi, Addi and Bo

Saturday, September 06, 2008

Hello to All - A real quick post. We survived Tropical Storm Hanna. Just a lot of rain and some standing in an open Kansas field with no buildings to slow the wind down. Bo is working on coming off the vent and hopefully by the end of next week we will be vent free. He rested a lot today and is trying to work on getting some comfortable sleep.
I will post more soon. I did forget to mention that Friday they ran another diaphragm study and it appears we are getting more diaphragm function! Yeah - hopefully nothing to permanent there!
Love to All
Christi, Addi and Bo

Friday, September 05, 2008

Good Evening - Seriously is it Friday...Is anyone else so confused? Anyway, Bo's x-ray last night came back alright. Nothing overly concerning, so now we work on coming off the vent at night. I think we are just going to have to pull the band aid quickly, this slow pull is starting to add more anxiety. I doubt anything will happen over the weekend, but I might be surprised.
So we will wait and also wait for Tropical Store Hanna to come through this area. The hospital is preparing for the power to go out and making sure everything is hooked up to the generators just in case. Depending on the time the storm comes through here, My parents are suppose to fly out about the exact time the storm is suppose to come through, so we might wait it out at the hospital. I am not sure our little apartment will be the greatest place, but hopefully this will be nothing.
Take care and be Safe
Christi, Addi and Bo

Thursday, September 04, 2008

Good Evening Everyone - I hope all is well with all. Today we had a good day. Bo got a day pass for 2 hours to spend some birthday time with me. We of course went to the hotel and hung out with Addi. Then Addi and I took him back to the hospital, played for a bit and then went and got my parents from the airport. They are going to hang with us until Saturday. Addi is really excited to see "Papa Cow" (Dad). I think she gets away with murder with him. Grandma has to take the backseat at least for a day. Needless to say with all the fun, no nap...enough said.
On another note Bo is working on breathing. Today wasn't his best day, so they are going to run a chest x-ray to make sure there isn't fluid in the lungs. He is retaining a little more fluid in his legs with his new diet, so I am sure we will be adding some medicines to help that out soon. I will let you know more when I find out more.
Take care everyone
Christi, Addi and Bo
PS - thanks for the well wishes...another year, another year with my husband and daughter, who could ask for more.

Wednesday, September 03, 2008

First - Sorry for last night and for nothing...hahaha little silly there. Second, you are silly with the posts (J - but I am waiting for the shoe contract) Anyway, Addi had her first day of school today, so I am trying to be a good Mom and encourage her along. I know some of you think I am crazy for putting her back in her school in Cornelius, but I need to know along with everyone else, WE ARE COMING HOME. Maybe not today, or tomorrow, but we are not getting comfortable at all at Duke or Durham. Addi first had a dance class the night before and she loved it. She is now a ballerina, although she is more excited for the tap part of the class. For the friends out there that have kids Addi's age, next week is bring a friend to class so I am extending that invitation to you all. (Motion Dance at 6:15 - 7:00) I do think she was even more excited for her toys at home. The kid was all over the place with The Buddies on her heals behind her. She actually got a little freaked out by them and their need to "love" on her. Then this morning off to school (McD's first, no food in the house) (Now I am sounding like my Mom with the play by play commentating, anyway) Then school...she was so funny walking in. She was like I know this place, but something is a little different. As soon as she saw Ms. Meg and Ms. Kim there were running hugs. I am so grateful for God helping us find St. Albans. Our prayers were answered last year and having Addi already comfortable with a program has been one less thing for me to worry about. Thank you everyone that I saw today for your kind words. We are so excited to be back.
On that note, I got to stop in at work to get a few things done and ask for some help with some paperwork. It was so great to see everyone! Your faces rejuvenated me and got me so excited to come home. Please know that Bo and I miss you all and hopefully soon we will get to drop in. I have been trying to leave Bo's blackberry with him, so for anyone that wants to send him and email with questions, kind words or just for fun, please do. He isn't emailing back yet because of his hand, but he is reading them. I will try to get him to type a "k" or "b" to let you know he got it...take care and see you all soon.
Christi, Addi and Bo
PS - Sorry for those I didn't get to talk with...this was just a whirlwind run into town and run back. Talk with everyone soon.

Monday, September 01, 2008

Hello - I hope everyone had a great long weekend. We are doing good hear except I need to get a new phone ASAP, sorry for anyone that has tried calling. Bo has had his phone some, so that leaves me a little out of touch with everyone. I will try to get that done in the next couple of days.
Today we had a good day, Addi and I went to the park and played outside and then more puzzles. She is so fun. Then tonight we had dinner with all our friend - other transplant families staying at our hotel, but as Addi was playing with them she looked at me and said "Mommy, look it's our family," boy are we a hodge podge bunch, but I love them all.
I did spend most of the afternoon with Bo, while Addi naps, and we got to celebrate Labor Day with a glass a grape juice together. Bo also amazed me with walking a mile today. We are working on lowering his oxygen support they have had him on after his surgery. His is doing better from the procedure and now we set the path to leave the hospital for good. I sure do love my family.
Love to All
Christi, Addi and Bo

Sunday, August 31, 2008

Good Evening Everyone - So far we have had a quiet weekend here. We started off with a great visit from the Graham family, Addi loved to see some of her friends. Then yesterday and today Addi and I have played, visited Daddy, make more puzzles that I could dream of (which is amazing because I love puzzles and board games - growing up in the country of Kansas winters will do that to you) and visited Daddy some more. Bo has been resting from his surgery and hopefully tomorrow will start working on getting up to speed to leaving the hospital. Tomorrow will probably be another quiet day with the holiday, but maybe not we will see.
A couple of "Addi Stories" to share. I hope I do not offend anyone, but I still working on how to explain everything to a 2 year old going on 10. First we saw a woman in a gown walking around the hospital. Addi pointed at her and said "Mommy, she's got an infection. The doctors will make her feel better." The woman looked at us like we were crazy, but to defend myself. The third time Bo went into ICU I had to explain to Addi why she couldn't see him anymore, therefore the word infection. Second story - The college students are back in town and lot of students are running near the hospital. So I explained that they are exercising. When we were walking into the hospital there was a nice older woman (maybe a little out of shape) and Addi proceeded to tell me that she needed to exercise...we kept walking with our heads down. Third story - we are having lunch outside with the Graham family and Addi has really been using make-believe play and always Disney Princesses - Mulan is a hit right now. Needless to say an Asian woman was outside and Addi proceeded to yell for everyone that Mulan was there. I thought she was pretending until Lena informed me differently.
The final story is that today during Daddy's nap time we went and visited the "castle" - Duke Chapel. Today we found a close parking spot so we went inside. After prayers said, a candle lit, Addi wanted to read a book, The Bible. As we are reading she then proceeded to tell me that she wanted to sing. I'm thinking okay the kid knows good acoustics. Most people are quite in the chapel, not my daughter she proceeded to sing at the top of her lungs, much to the amusement of everyone there. Then before we left she said she wanted to say a prayer, with her hands clasped "Dear God, please make Daddy feel better and come home soon. Amen." With tears down my face I just pray from her mouth to God's ears. Man I Love that Girl
Christi, Addi and Bo
PS - When we got to the hospital after the castle visit, Daddy was up walking more than usual.

Friday, August 29, 2008

Good Evening - Today Bo walked already 3 times as much as he did yesterday...yeah! He had some follow up tests that took most of the afternoon just to make sure the pain he was feeling was "normal" Everything look great on the CT Scans and I got to witness Bo take his first clear fluid drinks. Tonight he actually gets a tray delivered with some clear broth, jello and such. Nothing to write home about, but hopefully next week we can get some shakes moving and shaking...He is resting right now. Addi and I are off for dinner for two. I think tonight I will have someone wait on me...
Have a Great Long Weekend
Christi, Addi and Bo

Thursday, August 28, 2008

Hello to All - Just a quick post tonight. Bo made it up moving around today. He wasn't comfortable, but he did it. He spent most of the day without the vent which is the beginning of the end trials we will have to hopefully endure. They performed a Barium Swallow today to make sure the "wrap" was done properly. He passed with flying colors so hopefully tomorrow he can start drinking clear fluids...then to thicker fluids (hello Chik Fi-la) and then soft foods (hello Grandma's mashed potatoes) Tomorrow will be another day of getting his strength together walking and handling the anxiety of coming off the vent.
Love to All
Christi, Addi and Bo

Wednesday, August 27, 2008

Good Evening Everyone - Well how do I say this...Bo is in a little pain right now. The doctors didn't quite get it right with how painful the after effects of the procedure. We now know having any abdominal procedure isn't pleasant, so Bo pretty much just rested today (with the vent) tomorrow will be a new day and we will try again tomorrow. They are going to try and get him up to walk and try to keep his pain minimal. (not let it creep up on them to where he is miserable...)
Thanks for the prayers and we will try again tomorrow. I am glad he got a day to rest (stable is always good)
Love to All
Christi, Addi and Bo

Tuesday, August 26, 2008

Sorry for the slow post, it was to much for me to bring the computer and Addi to the hospital during Bo's surgery. He made it through and the doctor is optimistic that Bo will be able to take the swallow test tomorrow and start drinking small amounts of clear liquids. Yeah! He said the procedure went well and Bo handled it like a trouper. (They did say this time Bo wasn't a cheap drunk this time, he tolerance is getting stronger!)
Addi and I stayed to see him and he was resting well on the vent. Now the "tough" part starts and tomorrow they will start taking Bo off the vent full time. I hate that he is drugged up for his final night on the vent....Please pray for him to have strength these next couple days and take on his greatest fear, sleeping without the vent...
Love to All
Christi, Addi and Bo
Just an update to let you know that Bo is in surgery...this will take a couple of hours and I will let you know when he comes out.
Thanks for the prayers
Christi, Addi and Bo

Monday, August 25, 2008

Hello to All - Well we know how Monday's are in the hospital and we are regrouping. I should apologize first and say that they are fitting Bo in tomorrow for his wrap procedure sometime in the late afternoon. (So if you have time tomorrow afternoon, please say a prayer that things will go smoothly with his stomach wrap) It will take him a couple days to get back up so speed. Most people are nauseous with some abdominal pain. They want him to heal up, run all the tests they ran before the procedure and then they will allow him to start with a soft food diet and slowly progress to a regular diet. In the meantime he will keep his feeding tube to help make sure he gets the calories that he needs.
On another note Bo got another "pass" for 2 hours. We got in the car and came and got Addi. I am a little worried about Bo being comfortable at the hotel. I think I might have to go and buy a lazy boy recliner to make him more comfortable...I will have to think about that one. Anyway it was nice again to get out of the hospital. He will probably be captive there for a while after the procedure, we will see and he might surprise us all and jump out of bed Wednesday.
Love to All
Christi, Addi and Bo