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 us...so 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 http://holdontohope.com/ 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 for...to you Bo and another 100 years more.
Love
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! Yeah...so 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