Hello everyone - I hope that everyone is doing well. We are running the same here. I am beginning to think I may not be able to post everyday. I might begin to post when our exciting (good) news happens. We will see, I might miss talking and pretending I have a captive audience. Bo spent most of the day resting learning more and more exercises for his diaphragm and the muscles that assist the diaphragm. He is loving PT right now...whatever it takes to get out of the hospital.
On another note, I truly know Addi is her Daddy's daughter. She is "selling" it all the time now. Last night she didn't want to go to bed when it was dark outside, so we started stalling. Normally Mommy doesn't humor her to much, but she was trying to hard. First we had to read one more story, then we had to do one more dance, then turn out all the lights, then "Mommy will you lay down with me?" (My first mistake) Then we had to say night-night to all our animal friends in the bed with us...then the cherry on top. "Mommy you want to snuggle?" Needless to say I think I feel asleep first, but I had the best little arms around me. Sometimes I wonder who is taking care of who anymore?
Rest up, because we are going to bed again soon
Love
Christi, Addi and Bo

Good Evening Everyone - Today was about the same as yesterday. Bo was more comfortable without the vent and got some rest today. Let's just hope that with continue throughout the night. The night is always the hardest, less distractions from concentrating on your breathing so it almost becomes and obsession and sometimes not in a good way. I missed the doctors once again so hopefully tomorrow morning we can all meet up.
On another note, please mark your calendars for September 21st, 2008 from 11-2. Touch a Truck 2008. Please see the following link for details of this years event.
http://www.lkntouchatruck.com/EventDetails/tabid/449/Default.aspx
This event was a huge success last year, so we are excited for this years new great cars, silent auction items and enhancements. A huge thank you goes out to the girls picking up my slack...Tracy, Rachel, Robin, Mindy, Alecia, Lena and Candace - Thanks again
Love to all
Christi, Bo and Addi

Good Evening Friends - I unfortunately do not have really anything new to post tonight. This morning they did another biopsy and we will get the results of that back soon. From a visual aspect another doctor thinks Bo's lungs are looking good. He stated that the sluggishness in Bo's diaphragm could be the main culprit to the accumulation of CO2 in Bo's lungs after an extended period of time. I didn't get to speak with the doctor personally (as planned) but I did get to speak with the transplant coordinator and she reiterated what I just mentioned. After speaking with numerous people yesterday, a force of people came forward to help in the rehab of Bo's diaphragm. So Bo is going to work, work and work to get that stronger this next couple of weeks. They are hopefully going to start weaning Bo back off the vent tomorrow. I pray for Bo's strength to endure this yet another time. There is almost nothing harder for him to do and the fact that he has done this so many times is a testament to his strength and fight to live. I just wish sometimes he could get a break and it would be easier. Tomorrow I will sit with him and encourage all day long. We have a mantra we say to help calm our nerves "I Love Addi, I Love Addi, I Love Addi" It always seems to help.
I did get a great visit today. Mr. Fuller came to check on me and some other friends, and he couldn't have come at a better time. I was started to get frustrated with our vicious circle and there was that red St. Louis hat with arms wide open. It is selfish how quickly and easily I feel into them. I hope to have the strength and courage that he has. The Fuller family has been through so much and yet again unselfishly they come to the hospital to check on us still fighting. We talk about our adversities for the day and get the honest reminder that they would give about anything to be there too.
Everyone rest up because "We Love Addi" and we will keep fighting.
Love
Christi, Addi and Bo
PS - I am trying to watch the special, The Last Lecture, Wow what a hard one to get through. It hits a little close to home...what an amazing family.

Good Evening Everyone - I hope that everyone is doing well and staying patient. We are working on getting stronger and stronger. Today we ran the same of working on getting our diaphragm stronger. The best thing for that is to sit on a trach trial without the vent. And then they are putting Bo back on the vent at night to rest himself. This morning we could only briefly talk with the doctors, so tomorrow Dr. Steele is going to come by and talk with us about more pulmonary exercises we can do and maybe tweaking our path to be the most beneficial for Bo getting out of the hospital. It is my understanding that we are waiting on a nerve function to heal itself and to work the diaphragm more efficiently. So hopefully tomorrow I will have more to report and our path for the next week.
Take care and rest up
Love
Christi, Addi and Bo

What a fun day today...Bo and I got to hang out all day thanks to the Graham family letting Addi play with them this weekend. (Thank You!) Bo and I got him all cleaned up for Monday's doctor visit to set the game plan for the week. Then we played Battleship working on Bo's fine motor skills, he let me win. We walked, walked and walked all day long. We are working on Bo taking deeper breathes to pull the CO2 out. So lets focus on getting the diaphragm stronger, Bo relaxing more (no panting) and walking our way out of the hospital.
Take care
Christi, Addi, and Bo

Good Evening Friends - Today we kidnapped Bo and brought him back down to the 3rd floor with our "people" Bo liked his stay on the 7th floor just fine, but we wanted to be with the people that know Bo and his path to recovery. So we kidnapped him, I did promise him next time I would kidnap him from the hospital completely. Other than the kidnapping, today was pretty uneventful. (As I have said before, I will take stable and uneventful any day) We rested, we walked, we talked and we watched movies. Tomorrow we will do the same. Then Monday we regroup and find the next plan of attack.
I hope everyone has a restful weekend.
Love
Christi, Bo and Addi

Good Evening Friends - I hope that you all doing well. Today Bo was a little more frustrated than yesterday, but that is completely understandable. He really wants to go home and to be with all you, talk about work and play with Addi. I think he might of tried to do a little to much yesterday, because today he was a little more tired and breathing a little harder. So we rest. It is hard to know how hard to push because you want to always challenge yourself, but not set yourself back to far.
They are looking more into Bo's diaphragm issue. Nothing really new to report, but wanted to throw that one out there to pray for. If we can get his diaphragm working more efficiently then that should help with lowering the CO2 levels. So we pray.
Bo is resting tonight in a different ICU, the 7th floor. This is just a temporary change not due to anything to do with Bo, more to do with the need for bed space on the 3rd floor ICU. The 3rd floor is the most advanced technology wise. Bo is just using the vent now, but since these doctors know him and they want to make sure he get the best care possible (I think they want Bo to be their pride and joy) They will get him back to his room as soon as possible. Unfortunately on the flip side of this, that means there is too many patients critically ill right now. So please take a moment to think about everyone on the 3rd floor ICU, pray for their family and pray for the amazing doctors and nurses. (It goes to show we are getting the best treatment possible)
Take care and rest up
Christi, Addi and Bo

Hello All - Bo had a good day today. The nurses were so sweet with him and got him outside. We are really focusing on life outside the hospital. I think we (I am certainly guilty of this as well) focus so much on the numbers and the next problems to take care of that sometimes it is just too much. We cannot control most of it and we have to trust the doctors to take care of the rest. We are reminding ourselves that it is in Duke and God's hands. (Most certainly not in that order, hahahaha)
Bo was off the vent most of the day and he is resting on it tonight and probably for the next couple of nights that will be the routine. Then we will try next week to get out of ICU again. They are looking into his diaphragm again to see if there is anything they can do to help with the sluggishness that is occurring on the right side. So we wait, get stronger and attack again next week.
Love to all
Christi, Addi and Bo

Good Evening Everyone - Well as I mentioned before Bo is back in ICU and resting well. He has been on the vent since last night and resting well. He gas levels are pretty much back to normal, his fluid levels are getting better and his hand is healing remarkably well. So we are on a calm path tomorrow. The are contemplating moving Bo to a different floor that allows a few rooms to have ventilators in them so is isn't such a culture shock to move him from ICU to "step-down". I think that would help his greatly. You get incredible care by the nurses (one on one attention) while you are in ICU, that when you go to the regular floor you almost feel like you are alone and ignored (which is not true, in Bo's eyes it just feels like it) So switching him to this other floor will allow him to adjust to the non-one on one attention and then slowing wean him off the vent with the less attention. Small steps - but always in the right direction. Thank you all for posting the encouraging comments to Bo. I just never want him "comfortable" in the hospital. We all need him so much!
Love to all
Christi, Addi and Bo

Good Morning to Everyone - sorry for the slow post. We had another frustrating night. Bo is back in ICU and on the vent. His CO2 levels were on the rise and they wanted to be cautious with Bo. I haven't been able to talk with the doctors yet, but hopefully this afternoon I can catch up with them to find out what the next game plan is going to be. Bo is certainly frustrated, as we all are, so if anyone has the time to send words of encouragement to Bo I think he would benefit from them. I am afraid he is getting to comfortable with this hospital and might need to know that we all need him in the real world...
Thanks and I will post again later
Love
Christi, Addi and Bo

Good Evening Everyone. Bo had a nice and semi quiet evening on step down. Sleep at last! He didn't really feel that great today. They found that they have keep Bo a little too "dry" They really try to keep fluids out of Bo's lungs, so they give him medicine to help keep him "dry" Well if it isn't one things it is another and now Bo needs fluids to help him out. A very smart man told me to ride the waves, not to get to upset with the downward movements and stay a little guarded with with the highs. So they keep watching his CO2 levels with all this going on and hopefully we can stay in step-down.
Please pray for Bo's levels to even out and for his CO2 levels to stay within a safe range...out of ICU.
Take care
Christi, Bo and Addi

Hello and what a weekend! Bo today asked to have his staples out (they went clear across his chest) and they said yes. So we cleaned him up the best we could...shave, hair, nails the works and staples out. Then they came back and said since we were on such a roll, why don't we move on out of ICU! So Bo is once again on step down, hopefully for good this time! He is doing well, just exhausted because we are trying to get his days and nights straighted out again. So I am going to stay with him tonight and tomorrow will hopefully be another great day getting our walking on and getting out of the hospital period!
Take care
Christi, Addi and Again, Step Down Bo

Hello to all and sorry about not posting last night. Between talking with Mom about the Addi's Cure Event last night, which appears to be a huge success! (I cannot wait to see pictures) and watching movies with Bo, I forgot the computer at the hospital. Sorry!
We had a good relaxing day, Bo is on day 3 without the vent so hopefully on Monday we will be moving out of ICU, this time for good. I tease that Bo likes to do things twice, so this should be a our last trip in ICU (cross your fingers) He is exhausted but otherwise fairing pretty well. We walk a lot, talk a little and plan everything to do with Addi. I hope to get her up here to see Daddy today, hopefully that will motivate and encourage him right along.
But on to some exciting news I hear you all tore up the dance floor at the Addi's Cure event! I immediately went to the paper and found http://www2.ljworld.com/news/2008/jul/19/fundraiser_assists_lung_cancer_patient/?city_local
Wow, you all are amazing! A big thank you for everyone going and an even bigger thank you to everyone that helped plan the event. I am afraid to list people so if I forget someone, please add them to the comments, Pa and Mom (aka Larry and Terri Morgan), Cyndi and Ami Harvey, Crystal and Wyatt Dodds, Curtis, Erin and Ryan Morgan, Bill, Jen and Isley Newton, Stephanie Temple and the Temple Family and all the wonderful business donating items and to the Morning Donut Crew, I will be there soon to give my two cents. (Someone has to help you all out, Harry!)
Take care and thank you again
Love,
Christi, Bo and Addi

Well Bo has done it again, he made it throughout the night without the vent! Yeah...he is on his way out of ICU. All he has to do is control his anxiety, control his CO2 levels (he doesn't really have much say in this, but we can hope he can control it) and keep exercising by walking around without his stroller (soon).
We had a really good day, we watched a movie together and rested a little. We talked about the big picture. All the wonderful things we want to do with our daughter when things get better. Go boating on the lake, we want to walk more trails in the mountains - camping (maybe we will start in the backyard), take her to the movies, visit the zoo and teach her how to fish. We are trying not to focus on the day to day issues and keep our eye on the prize, one small baby step at a time.
Wish Bo luck tonight and some peace.
Love
Christi, Addi and Bo
PS Do not forget about tomorrow night's Addi's Cure Event in Kansas. Thank you all that have spent so much time and effort planning the event. Thank you so everyone that is attending. Bo and I are so sad that we are unable to attend, but I promise you next year it will be one huge party!

Good Evening everyone - Bo had another great day. He is one walking machine. Today we walked to the 9th floor (top floor) and visited the helicopter pad. The pilots happened to come by while we were looking out the windows. They asked us if we wanted to see the helicopter up close and of course we did. So Bo walked all the way outside, up a ramp and across the pad. It was nice to do something not so hospital "ish". The pilot even gave us little helicopter wings. One the way back it was a trick to not let Bo's Stroller/Walker go to fast down the slope, but somehow we did it.
Bo is working on staying off the vent tonight so wish him luck and prayers. Please let the CO2 levels stay down during this process.
Love to all
Christi, Addi and Bo

Good Evening - Today was a day of trying to get some more sleep. Bless Bo heart, he is so obsessed with his lack of sleep it is driving him more crazy. I keep reminding him that he needs to be patient, we are still in ICU, so lets not push things to much. We have come so far and he is walking better, hopefully soon Bo will be able to walk without the stroller and use the walker then walk on his own. (Sorry if that was misleading to everyone about his walking, right now he uses a stroller under his arms so his feet push him along, next he will use a walker to help hold him up, then we will try to get some laps in with just himself walking) I have to constantly remind myself we are still in ICU and this will be a little longer to recovery.
Bo is talking a little bit better. But to explain that, Bo can only get a couple of whisper words out. He is working on getting his diaphragm stronger, so in time we will get a couple more and then maybe a sentence. He is excited to talk with everyone, but it will still be a little while longer. Much less it is impossible to get cell phone service in the hospital something to do with the machines and concrete walls.
If anyone has any questions please let me know. If I have confused you about anything, let me know and I will try to explain again. Once we can get stable enough to go to step down, I will have Bo explain the best he can also.
Take care
Christi, Addi and Bo
PS - Uncle Jeff and Aunt Mary thank you so much for the donuts!

Good Evening Everyone - Things here are stable. Nice to stay. Bo did a couple of tests today that he passed with flying colors. It doesn't really change anything other than we know that he is healing. He took the swallow test, which allows him to swallow his medicines and chew up ice chunks. Once he has the procedure that will help control his acid reflux then he will be able to eat more. That isn't scheduled for a while though, so Bo is a little frustrated with the lack of eating but knowing that he swallows properly.
Bo is talking more and more, he can only do it for a short amount of time with the valve in, but it is wonderful to hear him talk and be able to describe what he is feeling. (Currently it is frustrations, but I am just glad he can express anything)
Tonight they are going to try and leave him off the vent and see how tired he gets. So wish him lots of prayers for his CO2 to keep going down, the strength and patience to withstand the need for the vent, and pray that Bo can get a little sleep tonight, Sleep is not an easy thing to do in a hospital.
Love
Christi, Addi and Bo

Hello - Things today ran the same course as yesterday. We were off the vent for 15 hours (all day) and then back on tonight to rest some more. Bo's CO2 levels actually came down a little today, so that is great news. I pray for the doctors so much because Bo (and all the patients) walk the thin line of how hard to push a patient to get stronger and when to let them rest. Bo gives very little wiggle room before he is pushed to far. When he seems to go to far, it sets him back a couple of days. So that is truly frustrating for all. With that being said, we are moving forward.
Mondays are always a fun day, the doctors come in and reassess what the game plan is for the week. So tomorrow I should know how much the want to push Bo, what the obstacles are for the week and where are numbers have moved themselves to....Bo has a tendency to not really fit the norm. Shocker there!
Someone asked me to keep posting what we should pray for, so tonight please pray for the doctors, for Bo's diaphragm to get stronger and for his CO2 numbers to come back down closer to the range they should be in.
Thanks everyone
Christi, Addi and Bo
PS - The Charlotte Observer wrote an article about Bo and our upcoming Touch a Truck event in September.
http://www.charlotte.com/239/story/709726.html
PSS - Do not forget this Friday our great event in Kansas!

Good Evening Everyone - as I mentioned before, Bo had a pretty uneventful day. He was off the vent most of the day and then back on to rest tonight. The doctors are walking that thin line of how hard to push Bo. I have come to realize that Bo is still Bo and currently in the same situation he has been for the past 2 years. What I mean is, every doctor we visit is confused by the appearance of Bo. He looks so healthy (since they found the cancer), but when you look at his x-rays he clearly had diseased lungs. I think the same is right now. Bo looks really good, but his lungs and the muscles that are supporting them (and the same ones that were not able to work to full capacity for 2 years) are still a little weak and need some slow circuit training. So training slowly is what we are doing.
On another note, Bo did get to talk today for about 30 minutes and then it wore him out. He was pretty sweet to me and all the nurses thanking them for all the care and attention they are giving him. He hates that they have to take care of him, but greatly appreciates everything that they are doing. It was good to hear his voice, not matter how weak it is right now. Something new to work on.
On an extremely sad note, today Bob F.'s wife lost her battle today. Bob is the most amazing man, therefore I know Henrietta was incredible along with their family. Please just pray that Bob and his family can find peace and strength these next couple of days. I will desperately miss them all and their support. They are my family when my family cannot be with me. Bob is my friend, my inspiration to walk in the door some mornings (he was the most positive and sweet man I know, know matter what was happening) he is a hero in the struggle that loved ones have while watching their family members fight for their lives. Bob thank you for showing me how to have grace during our most desperate times. I will continue in a manner that I hope will make you proud of me and calling me your friend. I love you all.
Love
Christi, Addi and Bo

Hello all! As I mentioned before today would be a pretty uneventful day, boy do I love those. We just sat and hung out. We started the morning out getting the good news that the tests they were running came back negative so that is awesome and a huge relief. Then Bo did a trach trial for about 4 hours and then we rested most of the day. I think Bo just needs a little time to let his lungs rests from the busy week. They haven't let him try to talk because he has been on the vent (he can only talk when he is off the vent and they plug the trach) So we wait. Bo is coming around and we are now setting day by day goals and prayers. Tomorrow Bo would like to be off the vent for 8 hours, walk 3 times and be able to pass the swallow test so he can drink some liquids (they said they would do the test tomorrow, but we are a little jaded and hope the come tomorrow, but we won't hold our breath since it is the weekend)
Love and Prayers to all, but a special one to Jay's Dad (see comments)
Christi, Addi and Bo
PS - Bob's wife is amazing the doctors with he will to live, keep those prayers coming and pray that Bo can ride the waves of the ICU