Tuesday, September 30, 2008

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

Friday, September 26, 2008

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

Thursday, September 25, 2008

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

Wednesday, September 24, 2008

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

Tuesday, September 23, 2008

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

Monday, September 22, 2008

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

Thursday, September 18, 2008

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

Wednesday, September 17, 2008

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

Tuesday, September 16, 2008

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

Monday, September 15, 2008

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


Sunday, September 14, 2008

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

Saturday, September 13, 2008

Today was good. Bo got another day pass, which means he can leave the hospital for 2 hours, we came back to the "summer house" to play with Addi and try to see how life here might be when that day comes. Bo is doing well, we are concentrating on controlling our breathing on only having positive thoughts.
On that note I want to remind everyone in one week, September 21st, we are having our annual Touch A Truck event in Huntersville/Cornelius...please stop by with your little ones. The entrance fee is $3 with all procedes going to Addi's Cure. There has been so much planning an excitement this year for the event. I am blessed to have a wonderful group of girlfriends to plan such an extravagant event. Also, stop by the silent auction table to check out the amazing children/car items being donated to win. There will be food and concessions as well, so just come right after church from 11-2. Check out for details http://www.lkntouchatruck.com/content/EventDetails/tabid/437/Default.aspx
I will attach the flyer as soon as I can get it in a picture format...
Thanks to All
Christi, Addi and Bo

Friday, September 12, 2008

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

Thursday, September 11, 2008

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

Wednesday, September 10, 2008

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

Tuesday, September 09, 2008

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

Monday, September 08, 2008

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

Saturday, September 06, 2008

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

Friday, September 05, 2008

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

Thursday, September 04, 2008

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

Wednesday, September 03, 2008

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

Monday, September 01, 2008

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