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

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

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

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.

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

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

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

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

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..http://www.lungstrong.com/
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

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 7:30...so 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

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 7:00am...an 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

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

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

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

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

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

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!

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

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