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

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

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

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

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!

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

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...