History

Journal History

Sunday, July 20, 2008 10:30 PM CDT

So much to share with a very exciting update!!!

We've been keeping a secret since early spring. We starting the paperwork to adopt. We anticipated the wait being quite extensive. Well, after waiting less than 3 1/2 months we will be adding a little girl to our family!

More info is on our blog: http://kitchchronicles.blogspot.com/. You can check both places (here and there) for updates. We'll plan to keep this site maintained for Carson and talk about life and our TWO kids on the blog.

Much more to come in the days and weeks ahead.

We are thrilled. As we've told our families over the past few days it has been so special to hear their reactions.

Thank you for your prayers and thoughts! God Bless and Peace!

Sunday, June 29, 2008 7:25 AM CDT

We are enjoying the long days of summer. We've spent so much time outside lately. The yard needs mowing again and we need to get some weeds out of the flower beds, but things are looking good outside.

Carson wrapped up day camp this week with Camp Courage and he had a great time. Baseball, horse and golf are still going strong. He starts tennis in a few weeks. Last weekend he took his golf clubs in the backyard and told me he needed to 'practice his swing'. Too cute!

Labs this past week went wonderfully and the early labs look good. Still waiting on his EBV level from the Cities. It's been bouncing around a bit lately, still fairly low, but we'd like to see it stay that way and remain stable.

We're planning on taking in the Fourth of July events at Minnesota State University Moorhead on Friday. They have so many events planned, capped off with a spectacular fireworks show that night. (Carson is quite excited - he picked the flags for the graphics update on his page too to celebrate the 4th!) A year ago Carson and I watched from a nearby parking lot. Daddy was wrapping up the tiling project in the foyer and half bath area. We had just finished painting 28 gallons of paint in two days and we were a little over a week away from closing on our house. This year we can go as a family and relax!

That's about all from here - hope everyone is having a great summer!

Love, Carson, Travis & Rhonda

Monday, April 28, 2008 5:56 AM CDT

Today is the day Carson has been waiting for since at least November! He is officially 7 years old (since he was born at 5:02 a.m.).

His Spiderman party yesterday was a hit - a few challenges since we couldn't be at the park as originally planned. We were hit with 7-8" of snow Friday-Saturday. Quite a bit has melted, but the park wasn't exactly going to be the best party spot. Plan B was our house, so we split time between inside and outside with the kids. Great afternoon of 'Put the web on Spiderman', a Spiderman Piñata, cake, food, playing outside, and presents. Carson had a great time with his friends.

We're off to another busy week - two more weeks left of the semester at NDSU and three at MSCTC!

That's all from here - we just can't believe that our miracle is 7!

Peace and God Bless,
Carson, Travis & Rhonda

Tuesday, April 1, 2008 5:58 AM CDT

ZOOM! ZOOM! ZOOM!

That's what life feels like right now. :) It's been a busy couple of months and certainly time for an update (no foolin').

Let's see...

We had a fun time ringing in the New Year with cousins Brody and Hannah, Nana and Papa, Auntie Rhonda and Uncle Ian. The kids got in some great time at the pool.

Carson started back to school and the new semester began for us. The hectic nature of the new semester was once again upon us.

Carson got in some sledding - with cubscouts, CCRI staff and with Daddy.

Carson's anniversary of his second open heart surgery was on February 1. We're so thankful we did the surgery when we did. It didn't slow him down at all. Can't believe it has been three years!

Carson's dental visit went well. We have so much concern over his teeth - being so sick with a liver disease as a baby can really make for some bad dental issues long term. Seems to depend on the kid. He took his pre-dental antibiotics (he needs to do this both because he is a cardiac and a liver kid) to ward off infection and we got a good report. WOW!!! He's lost 7 teeth so far and he loves how his piggy bank looks as a result.

Teachers' conferences in February went great. He loves school and adores his teachers (they are all so wonderful and we're not saying this because some of them read his updates). He can't wait for second grade.

We signed Carson up for another year of horse therapy through Riding on Angels' Wings. He'll be in spring, summer and fall programs this year for a total of 24 weeks of riding. We're also moving him towards 'independent' status, which will be great for him. Horse begins at an indoor arena this coming Saturday. We're all very excited.

We met with Carson's Make A Wish team and he fell in love with the wish granters - a mother and daughter. While I worked on paperwork, he flirted. Imagine that. We've identified dates in November and December 2008 as first, second and third choice travel dates and Carson has chosen Disney World as a first choice wish and a Disney Cruise as a second choice. We've heard from so many wish families that the Disney experience with MAW (or other wish-granting organizations) is like no other that you could give your child if you went there on a 'regular' trip. It will be magical for all of us. Will update when we know more.

We had a fun time watching cousin Brody play hockey in Grand Forks in early March. The boys had a fun time at the pool and all-too-quickly the day came to an end for both of them. He's still talking about cousin Brody and hockey.

We enjoyed some cultural events this past month too - we once again when to the Woodlands High Plains Pow Wow - an annual Tri-College Pow Wow. Travis received a special invite to a Kurdish New Year celebration - it was a lot of fun. We met up with our good friends the Gillettes at MSUM's Celebration of Nations. Good music, dancing, food and fun.

Easter weekend was a bit of hustle and bustle. I flew out the afternoon of Easter Sunday with a co-worker for an annual conference. Great conference, as always, and enjoyed some of the sun and climate of Orlando.

January, February and March had an overabundance of cold here. Very yucky months and everyone around here is ready for spring!!!

We're working on our basement bit by bit. The family room and bathroom are framed in. Electrical is done. We've opted not to frame and finish the fifth bedroom - it's a storage area with an 'extra, extra' bed. Nice to see things taking shape. We're going to install a fireplace this summer and then the sheetrocking fun begins. Hope to have it all finished sometime this fall, but hopefully before the holidays. We're also very excited to get landscaping and into our garden. Need to figure out a fence system as we have rabbits the size of small dogs (I'm not kidding) that will quickly demolish a garden if we don't do something. No Elmer Fudd as a neighbor so we need to have a plan B.

Carson's last two rounds of labs have been exceptional. Results have been great too, so we have much to be thankful for. He's now a pro at sitting in the lab chair BY HIMSELF and watching the draw (he HAS to watch). He even occasionally giggles. What a kid. Of course his lack of tears brings a lump in the throat to those of us watching him and reflecting on just how far he has come.

He is SO excited for his birthday and can't wait to be 7. Spiderman is the chosen theme and I'm sure the 'real' planning will begin for him now that it's April 1st. He's been discussing his birthday since November, so a slight anticipation of this day. He couldn't figure out why Papa Chip didn't have a 'theme' for his birthday last month. He asked Papa 'Superman?', 'Cars?', 'SpongeBob?' Such a missed opportunity in Carson's eyes. :)

As we ring in April, remember it is National Organ and Tissue Donation Awareness month. There are over 98,000 people on the waiting list in the U.S. alone. Check out http://www.life-source.org/ and http://www.donatelife.net/. Carson is with us today because of the amazing, selfless decision another family made. They are constantly in our prayers. You have the power to save someone's life too!

Here's to all of the donors, recipients, and those waiting...peace and God Bless!

Love,

Carson, Travis & Rhonda

Sunday, December 30, 2007 7:31 AM CST

Today is a big day! Six years ago today Carson received his gift of life. That precious gift has allowed him to do many, many, many things...most of all live and fill our lives with love.

Here are passages from our journal six years ago:

___________________________________________________________

Sunday, December 30, 2001 at 11:09 AM (CST)
Well, Carson knew what to do all along. He did not want his Mommy's liver because he is GETTING ONE TODAY!

We are pretty much bowled over and our heads are swimming.

Our excitement is tempered by the fact that a three old child who recently passed on. Our deepest condolences to the family and our heart-felt gratitude for them making the choice to donate. If you didn't believe it before, believe it now...organ donation saves lives.

Daddy

Sunday, December 30, 2001 at 01:42 PM (CST)
Carson is off to the OR. He went in about 45 minutes ago. He was so calm and content. He is so ready for his new liver. Now God is holding him in His arms and Jesus is holding Carson's hand as they remove his old liver and prepare for the new one. Drs. Humar and Payne are performing the transplant. They are brilliant people.

The new liver should be here by 4 or 5 pm. It will take that long for the removal...then the process of placing the new one begins. Sounds like the earliest Carson will be out is 8 or 9 pm. Could be as long as 12 to 16 hours.

Corey and Bree are here. Chris, Grammy and Papa Chip should be here within minutes. Nana and Papa are on the way. We will be filling up the family waiting room today!!!

My mind is certainly with Carson, but I weep for the mother and father of the young child that is giving this precious gift of life to Carson. Will they ever know our deepest gratitude? Will they realize how they have given Carson a new birth? I pray that they find some comfort during this time of their awful loss.

Will update here as we have updates from the OR.

Thanks for all the notes in the guestbook...they will keep us going today and in the coming days!!!

Love, Mommy

Sunday, December 30, 2001 at 05:32 PM (CST)
The update just came in...Carson is doing GREAT! The new liver has arrived and they are still working on taking his old liver out. All is going well, as reported from one of the surgeon's (Dr. Humar). We are absolutely thrilled.

That's all for now...will update when we know more. We have open access to the computer at all hours, so keep checking!!!

Love, Mommy

Sunday, December 30, 2001 at 06:58 PM (CST)
Carson would like everyone to know that his new liver is inside of him now. The vascular system is hooked up and they are beginning to work on the bile system. A nurse from the surgical floor visited us and told us that there is blood flowing through his beautiful pink liver. The labs all look great and in three or so hours all should be said and done.

For the first time in a long time Rhonda and I have images of taking Carson home.

Once again, if you didn't believe it before, believe it now - ORGAN DONATION SAVES LIVES!

Thanks for all the thoughts and prayers!

Daddy

Sunday, December 30, 2001 at 08:58 PM (CST)
YIPPEE! Carson is out of the OR and is doing well. We should be able to see him soon. (We've actually taken a peek in his room and saw him from a distance--he looks great!) There are still a lot of people around him and they are getting him settled in so we should be able to see him soon.

Overall, the surgery went very well and without any complications. Our first hurdle is over, the next is to watch for bleeding and clotting the next few days. They will be big days for us.

They did not have to cut down the liver and Carson was able to keep his spleen. All in all, it went so well!

We will update more later! Love to all!!!

Love, Mommy

Monday, December 31, 2001 at 12:33 AM (CST)
Oh the tears that have flowed today...but right now we have tears of JOY! We got to kiss and talk to Carson over two hours ago and he looks great. EVERYONE is very pleased with how he is doing, which makes us very, very happy. He is making good bile in his T tube, which is fantastic. It shows us that his liver is working.

He is full of "flare": an NG tube in his nose, he is on the ventilator, has his hickman in his chest, an IV in each groin, an IV in his right foot, a foley catheter, the T tube, and two JP drainage tubes. Plus the incision, which is stapled together. It's under gauze, so we haven't seen it yet. Through all of this, he looks so good! (Never thought I'd say that about my baby full of so many tubes!)

We have started to witness first-hand the amazing clearing of Carson's system. "Mr. Bili-Rubin" is packing up and leaving...at least getting down some. Don't know what his bili is right now, but the proof is watching Carson. His fingers and toes are PINK!!!! The last time I looked his palms were starting to get pink as well. It is just incredible. It just brings tears to my eyes thinking about how he could look in a few days...we could see white eyes again!

So, we are just in awe at what the last 15 hours have been. What an amazing journey. We left home 10 weeks ago today too...another journey! We know we aren't through the woods yet, but we sure have a lot of hope.

We are so thankful for the love and support from so many people...family and friends alike. Grammy Ruthie, Papa Chip, Uncle Chris, Uncle Corey, Auntie Bree, Jody Maanum, Marisa McFate, Ryan Bollig and his aunt Audrey and our good buddy Fuzz and his mom, Jill, all kept us company during the waiting hours. THANK YOU! It's also so fun and uplifting to see all those messages pour in...Carson can just feel all of that love.

Travis kept telling me after Thursday's "excitement" that God has a plan, and that this all happened for a reason. It was so hard for me to believe at first, because all I could think about is that we were going to have to go through all of the emotions again...but I knew there was a reason. It was between God and Carson and it certainly came out today what the plan was. Although I would have done it in a heartbeat, I'm also thankful that I was able to be a part of this experience today and will be an active part of his recovery.

Well, I will close for tonight. Nana and Papa should be arriving any minute.

I'm sure we will have many updates in the days to come. We will post pictures as soon as we get some developed.

God Bless to our donor family. They are never far from our thoughts and prayers.

Love, Mommy
___________________________________________________________

Last night Carson and I snuggled and paged through his two 'transplant' scrapbooks. There was laughter and tears from both of us. He really enjoyed (!) seeing the tubes in the pictures and pulling up his shirt to correlate where the scar is left now. Must be a doctor in training!

Here are a few updates from the past month:

Carson continues to enjoy Cub Scouts. He's earned his Bobcat and Tiger badges. Now he and Daddy need to work on his pinewood derby car. Race is in January.

We hosted Thanksgiving and local family came to feast. It was a relaxing day with good food and visit.

We enjoyed decorating the house for Christmas. Carson did a great job of deciding where things should go.

December brought snow, finally, to the delight of Daddy and Carson. I'm okay with it (nice to have a white Christmas), but with two storms in early December we had well over a foot. Enough!!!

Carson enjoyed sitting on Santa's lap a few times...most excitedly for him he once again saw 'Sign Language Santa'. Carson was thrilled to once again see that Santa had hearing aids and knows sign language. This did prompt a few questions why 'other' Santa's don't know sign language (although many Santas do have hearing aids - Carson checks!). Of course, we all know that the REAL Santa knows sign and has hearing aids, but since he's so busy he need some helpers to help him out during this busy time.

Carson did a great job at the Bethlehem Lutheran Sunday School program. He has also learned a lot of songs in school this year and it's adorable to hear him sing them 'I'm gettin' nothin' for Christmas', 'Jingle Bells' and 'December is time for...'.

Christmas was wonderful - we hosted several rounds as Uncle Chris and Auntie Hilary were here the weekend before Christmas. Then family here on Christmas Eve and a bigger group here on Christmas Day. Fun, fellowship and food. We continued our tradition of baking a birthday cake for Jesus. Carson decided Jesus was six this year (same as Carson), so that's how many candles were on Jesus' cake. Hmmm.....

We dashed to Minneapolis on Wednesday for checkups. Carson was amazing. We got on the road at 5:30 a.m. - by then end of the day Carson had had a echo, chest x-ray, EKG, cardiac check-up, abdominal ultrasound, head, neck, chest and abdominal CT's, and a GI/transplant check-up. He was a champ. All reports were great - come back in a year is what we heard from both cardiac and GI/transplant. We also got the okay to lower his prograf (anti-rejection drug) a bit. We'll see how he tolerates it through labs. CT revealed the lung nodule from this summer is unchanged. We liked to see it go away, but no growth in over six months is okay. We got together with a few friends that evening and got on the road the next morning for home.

Yesterday we enjoyed sleigh rides in Moorhead. The horses were beautiful and the snow was amazing along the river.

Today we are thankful for how well Carson has done. He is, as we often say, our miracle in action. We'll light his anniversary candle today and are celebrating with a bowling party with family and friends. We'll have supper and cake here with everyone later. Nana, Papa, Uncle Ian, Auntie Rhonda and cousins Brody and Hannah are on their way today - will be fun to see them all.

We thank you all for your thought and prayers for Carson. He is here today because of the power of prayer. We're also thankful for the gifted medical professionals that continue to watch over him. And finally, without the precious gift of life from his donor family, Carson may not be with us today. Their selfless decision in the midst of their grief and loss of their little angel was amazing. We hope to meet them some day...how we will say 'thank you' in person is impossible. Hopefully seeing Carson will give them some peace that their little loved one lives on.

With that, take care and God Bless!

Love, Carson, Daddy & Mommy

Tuesday, November 6, 2007 4:08 AM CST

Halloween is over, we've turned back our clocks and a chill is in the air! Not too much to report from here, but thought we'd do a quick update.

Carson loves first grade...all is going well. He loves to read, says math is 'easy' and when asked by his teacher he reported that learning about thermometers was a bit hard (but then he quipped that the door is also hard). ;-)

Cub Scouts meets weekly and it's been a lot of fun for him. He is in a great den.

When Carson had a break for teacher's convention in October, we traveled to Des Moines to see Uncle Chris and Auntie Hilary and their new house. We still miss them not being a five minute drive away, but are happy for their new opportunities. We enjoyed the Science Museum (Carson loved the Grossology exhibit - all 'gross' things about our body - he really thought the 'snot' exhibit was cool) and a living history farm. A quick but fun weekend.

In the cave at the Science Museum

Climbing on the wall of 'skin' with scabs, blisters, etc.

Hanging out by the liver (and other internal organs)

Carson's 6th anniversary of his open heart surgery was on October 23 - what a difference 6 years make!

Carson was Superman for Halloween. Here is a pic 'The Man of Steel'.

We are getting the ball rolling for Carson's wish through Make-A-Wish. We should visit with a wish team within the next few weeks. We're starting to prep Carson...we want to ensure he doesn't ask for a lifetime supply of scotch tape and post-it notes with his creative quest to tape things all over. It's a fun and exciting process - we'll update when we have updates!

That's it from here - we'll have labs in a few weeks and we're working on Carson's annual check-ups in the Cities at the end of December.

We do have some prayer requests to pass along - we are keeping some preemie babies close in our thoughts and prayer and want others to do the same. All have connections to NDSU (in both cases one of their parents works at NDSU).

http://www.caringbridge.org/visit/brycestokka

http://meddersfamily.googlepages.com/

Take care and God Bless,
Carson, Daddy & Mommy

P.S. Pics of our house can be seen in 'Read Journal History'

Monday, September 24, 2007 7:56 PM CDT

We are alive!!!

Seriously, the months have really, really flown by. So much has happened since June. Will try to fill you in a bit...

June wrapped up with tennis lessons and the continuation of horse therapy. Lots of final prepping for the move!

Early July was crazy with installing tile in the foyer and powder bath at the house. Travis LOVES ceramic tiling! He did a great job, as always. Many extra hands came to help us with painting - 28 gallons total! It was so wonderful to paint prior to the trim, cabinets, and carpet going in. We were exhausted, but the long hours were worth it when we closed on July 13. We also saw family from Washington state - auntie, uncle, and cousins. Good times!

We got moved in to the house with the help of some good friends and some buffed 20-year-old movers. It was the best money we've ever spent (on the movers)! They moved furniture upstairs like it was Barbie-sized! It was wonderful. We got stuff in the house and then the real fun began. Carson's room and playroom were pretty top priorities. We both had the week off and got a lot done. We gladly checked out of the apartment during this time as well.

July closed with continued house projects, Carson in horse and the Moorhead park program.

In August we saw Uncles Corey and Chris twice - they came through on their fishing trip. Carson had a great time playing with them. Uncle Corey knows a lot of sign language and Carson loved having conversations with him. Classes started at NDSU and MSCTC for Trav and I. Another busy fall semester! Nana and Papa came to visit and spend some fun time with us and check out our new place. We all enjoyed watching Carson in the Barnesville Potato Days parade with the horse therapy group and we took in the Island Park craft show while they were here. Beautiful weather and fun had by all!

September brought first grade for Carson! It's wonderful being less than 2 blocks from school. He really enjoys walking to school...of course he has to examine everything along the way, so the trip takes some time. He is loving the fact that you eat lunch at school - how cool! He has a wonderful teacher and continues with a great group of other teachers that he works with. We're so blessed and thankful.

Carson has also joined Cub Scouts. He's a Tiger Cub this year. He is pretty darn handsome in his uniform and wears it proudly. We'll be selling popcorn soon, so if interested, just let us know!

September brought the start of Sunday School as well. Carson has a great class and once again, Mom is a team teacher and Dad helps out in the classroom. Papa Chip was here for his annual September visit - along with taking in Big Iron. We got to spend some time with Loni too. Carson showed them all of his tricks.

Carson's labs have looked good and thankfully all of the GI stuff from June settled down. He announced a few weeks ago that he doesn't want to be a GI doctor because they see too many germs. That's our Purell Boy!!! :) We talked about how doctors - no matter what kind - need to wash their hands a lot and wear gloves if needed. He still has ruled out GI as his specialty. That's okay...as one of his GI docs declared, they are 'guts and butts' doctors, so if that's not Carson's thing, so be it. We're trying to convince him he has plenty of time to decide what he wants to do. We repeat labs again this week. We're all on round two in about a month's time of some viral crud. It's really been awful, but once again, Mr. Immune Suppressed is pulling through better than his parents. Go figure.

We had a big storm through here last Friday morning - we had between golf and baseball sized hail! When the storm was over I picked some up and we showed Carson in the morning. Unfortunately we have some siding damage...not sure yet, but we are guessing some shingle damage as well. Still waiting for a claim adjuster to get out here. Thankfully, we didn't lose any windows, as some have in the area.

I think that's the last few months in a nutshell. We're slowly getting through some landscaping. We started on a perennial bed this weekend. We have a huge yard and we can't wait to get settled in to enjoying the outside more. We are thrilled that we have wonderful neighbors. There are two families that we've gotten to know the most and they are great.

Hope all is well with each of you. Thanks for your continued prayers. God's Blessings to each of you!

Love, Carson, Mom & Dad

11/06/07
I'm adding some of our webpage pics here so they are saved - just too cute to delete!

First day of kindergarten! (Almost too cool for school?!)

Saturday, June 23, 2007 8:45 AM CDT

We finally have an update!

Carson's labwork looks good. We submitted stool sample #4 last weekend, hoping for some indication to all of this (nothing conclusive yet...). The good news is the last week he was going less frequently. Last night we had a mini celebration for the first solid poop in four weeks. (Okay, we choose to celebrate some bizarre things!!!) Carson was so excited. We hope and pray that his poop stays in a group and that we're through all of the fun.

CT results are in - Carson has a pulmonary nodule on his right lung (if you are interested in an exact location let me know). :) This nodule could be from all sorts of things and most likely is absolutely nothing to worry about. (Easier said than done...) Malignant nodules are most frequently found in individuals over age 35 and individuals who are smokers. Of course, Carson is neither! Transplant team wants repeat CT's in December just to watch it. We would have been great with coming down in a month or two to check it out again. It was shared that this is 'something to watch not something to be concerned about'. Okay...we'll try!

What is amazing to us throughout all of this is watching Carson. His concerns are of a typical 6-year-old's. It's about Lego time, park time, reading, playing and where the next adventure is. His actions bring us back from a place of worry to focus on the here and now. Guess adults could learn a few lessons from kids!

He is close to wrapping up tennis and has really seemed to catch on. I think a tennis racket is in his future! Horse therapy has been canceled a few times due to the soggy weather. He finally got a chance to ride on Thursday evening - had a great time!

We're enjoying watching the progress on the house. Electrical, plumbing and siding are all done. Sheetrocking starts next. It's really coming together! We close three weeks from yesterday!

Another round of labs this next week - as much as they aren't fun, it's always a relief to do them to reassure that all is going well inside his little body.

Speaking of his body - it was six years on Tuesday, June 19 since Carson's first surgery - the Kasai. He was so tiny and we had no clue what was ahead of us - we were so naive in the medical world! We've all grown a lot since that time - especially emotionally and spiritually (and a bit physically too!). We know that God led us to it - he will lead us through it too.

Will keep updated on the GI situation & labs next week. Thank you for all of your prayers!

Love & God Bless,
Carson, Travis & Rhonda

Thursday, June 14, 2007 5:23 AM CDT

Good morning!

We are back from our whirlwind trip. We left Tuesday evening and unfortunately got in so late that Carson couldn't enjoy the pool. He was pretty bummed about that. (He packed two pairs of swimming trunks, so think he was a little excited.)

Yesterday started pretty early. We arrived early for the CT and we were so thankful he was an early case, since he had to be NPO after midnight (no food or drink). Since none of us at, it really wasn't on his mind. The Children's Imaging Dept. was amazing. It's been completely redone since we were there last. There are two doors into the waiting room - an adult one and a kid one. Lots of fun stuff in the waiting room, including a kid-sized CT machine. We had a lot of fun with that. When the tech called Carson back, we put some Emla on in a few spots (numbing cream), he got to pick out a pencil, we went into the CT room and he got to push the buttons while mom laid on the CT table. His turn next and he was a champ on the practice run. They have a projector set up so images play on the top of the CT machine for the patient to watch. There was kid-stuff everywhere. He drank some kid-friendly oral contrast in a 7-up base and then it was IV time. Took 2 pokes, but got it. The tech had called the tx center and they faxed over some lab orders. Might as well get the most from this IV site!

Child Family Life came in during the IV 'fun' and brought some cool neon toys and bubbles. Helped tremendously!

We had to wait a bit for the oral contrast to work it's way through. After about an hour, it was picture time. He did so great and was so brave and strong. CT's were done of his head, throat, chest, abdomen & pelvis.

After a round of hugs with the staff, he got some loot from them: several Spiderman tattoos, a glow stick, a Turtle Derby t-shirt (big annual fundraiser for the Children's Hospital), and stickers. I seriously think we could wallpaper several rooms in the new house with all of the square hospital stickers we have!

We left the hospital and ran to Perkins for breakfast. Ran to a couple stores near the hospital and then back for the GI appt. in the afternoon.

Always good to see Dr. Sharp, Carson's GI doc. He'd like another test run on a stool sample (can we hear a collective woo hoo?), we talked about some of his labs, the CT of his head and nect/throat were all fine, still need to wait on the rest - no results yet. Carson's anti-rejection drug level from last week was non-detectable. Likely due to all of the intestinal 'fun'. We inquired about switching him to the pill form of Prograf and we made the switch yesterday! The pills are about the size of a tic tac and he'll take 4/day - 2 morning & 2 evening. It'll be a while before we can switch the Actigall -- they are huge!

EBV is still a concern - his levels aren't high, but it would be great to get them lower. To try to get the EBV levels down, the best thing to do is to decrease the anti-rejection drug. The prograf 'fuels' the EBV so to speak. Of course, tapering the prograf is a scary concept. We'll give it a try and watch labs closely. Possibly a liver biopsy in December to check things on the inside.

Carson showed off a tattoo he'd put on his liver transplant scar (that's the cool thing to do with tattoos now). He also showed Dr. Sharp his missing teeth and his very-loose tooth. After another round of hugs, we were on our way. We didn't leave with a lot of answers, but have some wait-and-see as well as some new things to explore.

We made a quick stop on the way out of town, ate and then we were on our way home.

We're so proud of the brave, amazing boy we have. He was amazing yesterday.

Should have more results within the next few days and will update when we know more.

Thanks for the continued love and prayers. Carson, Travis & Rhonda

Monday, June 11, 2007 9:49 PM CDT

The weeks have been flying by. We have a countdown going on and we're closing in on less than 30 days until we move into the new house. Closing date is July 13. We'll be in to paint and tile in a few weeks (before flooring and trim are in). If you are handy with a paintbrush, let us know as we'll have a painting party. Food & goodies served!

Carson's in the midst of tennis lessons & horse therapy and loving both. Daddy is especially proud to see Carson have a tennis racket in hand (Daddy played college tennis.) Will be a wonderful lifetime sport for Carson if he can get in to the swing of it (couldn't resist a tennis joke!). Carson starts a park and rec afternoon program this week too. Will make for a busy summer.

Carson had Vacation Bible School a few weeks ago and loved it. He had a great time and even learned a few things, which proves he can listen when he wants to!!!

Carson was officially done with Kindergarten the end of May. He's very excited about first grade, but will miss his teacher so much. He had an outstanding kindergarten teacher this past year. Thankfully, his hard-of-hearing, speech and OT teachers will continue to follow him, so there is consistency there. They are all great too!

Well, Carson is providing us with a few 'grey hair' opportunities. He was diagnosed with strep a few weeks ago (but once again didn't have any symptoms). This time Daddy got really sick from strep. The antibiotic took care of everything for the boys. Towards the end of the meds, Carson's GI system got out of whack (I won't go in to delightful details here...I'd never hear the end of it when he's older! I also need to keep in mind that he'll be deciding which nursing home to put us in, so less embarrassment about color, frequency, consistency, etc. of his bodily functions is probably for the best here). As any liver parent will tell you though - it's all about the poop! It's easy to get obsessed with the nuances of poop when you have a liver kid. :)

Anyway, after a few cultures (Carson's eyes about popped out of his head when I told him what we needed to collect in the 'hat'...I'm sure he thought that these doctors need to get a life and get out more) nothing has been noteworthy in findings. Labs look great too.

Thanks to some acidophilus we think things are getting 'in a group' again. It's likely the antibiotic killed off the good bacteria and he had an imbalance of all of the bacteria. So, good steps forward. Finally, after about two weeks of this fun.

However, with his EBV positive history, combined with these multiple rounds of strep (with no symptoms) the transplant team is concerned. We will be finalizing everything tomorrow morning, but a trip to the Cities is likely for tomorrow afternoon. Hope to get appts. on Wednesday morning and we'll go from there (hopefully back yet on Wednesday). We certainly don't want to mess around if anything with EBV is brewing. It's not stuff to mess with (EBV can present into PTLD...PTLD is lymphoma).

While we're optimistic, there are obvious fears. We really hope we can get to the bottom of this strep stuff and pray that EBV is not a factor in the mess of it all.

Will keep his journal updated. Thanks for the prayers!

Love, Carson, Travis & Rhonda

Friday, April 27, 2007 10:16 PM CDT

Happy Spring! It's great to see all of the signs of spring. Feels wonderful!

April has been a busy month - we're officially out of our house and in a 1 bedroom apartment. It's cozy, but short term (we keep telling ourselves this). We made a countdown calendar for Carson and to be honest it's for us too! We're all getting excited about the new house.

Carson adores horse therapy - he's back on Honey again this year. He really looks forward to Thursday nights.

The big event was last week - Danie and Jamie's wedding. Carson was so excited but thought that he should be the one to marry Danie. He was in awe of Danie - she was a beautiful bride. Carson wasted no time flirting with bridesmaids as well (see photo below). He thought the tux was pretty cool too. He couldn't wait for the dance and he spent quite a few numbers on the floor - with Danie, bridesmaids, and Mom. He was quite the show for the chicken dance! :) We had a wonderful time and it was a very special weekend.

Carson's 6th Birthday is tomorrow. He'll be 6 at exactly 5:02 a.m. He has been waiting and waiting for this. We're having a family party tomorrow - thankfully weather is nice so the party is at a nearby park. We have all Grandparents in town to help celebrate too. Kids party is Sunday at the Children's Museum. Will be a fun weekend. Will post pics of birthday weekend soon.

Time for bed soon. Take care and God Bless!

Love, Carson, Travis & Rhonda

Friday, April 6, 2007 8:31 PM CDT

It's been a whirlwind couple of weeks!

Many boxes have been packed and today the majority of our stuff moved in to a storage unit (with special thanks and help from Chris and Hilary). It was cold here with a 'fun' wind, but we made it. We have a few more things to pack up and get moved in to the unit, but we feel in pretty good shape. Next Friday - Saturday we move in to an apartment. We landed a one bedroom on a month-to-month basis, so we'll be cozy, but thankful we're not locked in to a lease. We close on our current home on April 16. If all goes well, we'll be in the apt. for exactly three months as we have picked July 13 as a closing date for our new house. If all goes well, ground should be broken this next week for the new place. Was supposed to be already but 6 inches of snow came along this past week. Temps should rebound this week - hopefully! We're very excited about the space we'll add and the layout - very open, which is conducive for a hard of hearing kid. We're on a small loop in our development, so very quiet traffic-wise. We're thrilled about that as Carson will have a bit more freedom. We learned that Carson will be able to go out our backyard and cross through a pedestrian path between two lots and then he'll be about a block from school. We didn't know the path was going to be there, so that was great news! We're excited about the lot as well - it's about 14,300 square feet. Trav is already drooling over the size of the garden we can put in. Plenty of room for play too.

Carson is doing well. He's been a bit 'squirrely' with all that is going on and is acting a bit silly in school and not listening really well at home. Actually looking forward to getting in to the apt as we can get a routine back again.

Carson starts horse therapy this week - first 6 weeks are at an indoor arena then move to an outdoor for 12 weeks this summer. He is so excited and we are too.

Carson had labs on Wednesday and all the levels in so far are outstanding. Waiting on EBV and prograf, but should know this next week.

Carson is very excited for summer and has been living in shorts while indoors. He's a kid after his momma's heart - apparently I would start wearing shorts when I heard it was officially spring. Never mind the fact there was a ton of snow on the ground. I remember my parents vetoing a halter top (hey, it was the 70's) in late March. Meanies. Well, guess what I'm doing now. He wanted to run errands in them a few nights ago. Quite the battle! Hopefully our newly-acquired snow of this past week is gone within the next week and the temps keep improving from there. Not that I'll be sporting a halter top, but I feel the itch of spring too, Carson!

Carson's big upcoming event is that he is going to be in a wedding in two weeks. If he had his way, he'd be the groom, but he'll have to settle for ringbearer. Danie, his respite caregiver for 3 1/2 years is getting married. We had hoped that Danie would wait about 20 more years for Carson, but can understand she needs to do what she needs to do. :) We're all very excited to see Carson in a tux. Will be a very special and fun day. Pictures to come!

Carson is also very excited for his birthday - #6 - on April 28. He's counting down to the big day. We simply can't believe he'll be six!

Well, a few more boxes are calling. Will update later in April with wedding and birthday news.

Happy Easter to all & God's Blessings to you and yours!

Love, The Kitch Three

Friday, March 9, 2007 6:37 AM CST

Good morning,

Big news from the Kitch house - we've sold our house! We put it on the market in February in the hopes we'd sell it this spring. Got an offer Wednesday and after a bit of back and forth, offer is accepted. We have a great offer, so we are thrilled!

We're planning to build this summer. We need a house on a quieter street for Carson. The traffic + Mr. Hard of Hearing = not a good combo. We're building very close to his school, which we are all excited about.

Lots of details to work out - we close on our current house on April 16! We don't know where we are living for the next few months...hope to have that worked out by early next week. Challenging to find an apt. lease for less than six months. Most of our stuff will head into storage. We are relieved and excited (little bit stressed, but it'll all be okay).

Carson is doing great - had his parent - teacher conference yesterday and went well. He's made some good progress this year.

If you don't watch ABC's "Extreme Makeover: Home Edition", you'll want to tune in this Sunday. I cry over the commercials for it! See details below.

Have to run - take care!

The Kitch Family

This Sunday, March 11 ABC's "Extreme Makeover: Home Edition" will feature the "Tipton-Smith Family" whose son was killed in a car accident and was an organ donor. The family, who also lost their house, will receive a new dream home in this episode. The donor family also meets the recipient of the son's heart during the episode. By all accounts, this is one of the best episodes in the history of the show, and that is saying a lot.

ABC is committed to helping us educate their viewers and increase donor designations in the United States through the reach of the episode. The ABC affiliate marketing department is distributing contact information for area PR/PE professionals in the donation and transplant community to its affiliate stations, encouraging them to proactively seek out donation stories for local news broadcasts. ABC is also going to feature donatelife.net
on the "Extreme Home" web site after the show.

Here's a promo: http://x100.abcpromo.net/shareddocs/stu/

This is from ABC:

WITH THE HELP OF “EXTREME MAKEOVER: HOME EDITION,” A FAMILY WHO LOST THEIR HOUSE AND THEIR SON WITHIN A SPAN OF THREE MONTHS WILL GET THEIR DREAM HOME WHERE THEY CAN FILL IT WITH MEMORIES AND LOVE

On January 11, the Tipton-Smith family of Waleska, GA, who endured the double tragedy of losing their home and eldest son, received the news that Ty and the gang of “Extreme Makeover: Home Edition” will rebuild the home that they started after their house burned to the ground last year.

Faith Tipton-Smith is a single mother raising two girls, 16-year-old Missy and 8-year-old Emily. After working at the same job for 25 years, Faith was finally able to purchase her first home in July of 2004. On February 4, 2005 the unthinkable happened when this new home that Faith and her family worked so hard for burned to the ground. They lost everything including countless cheerleading trophies, family pictures, clothes, and even their dog, Sugar. This family lost everything they cherished and loved, but most importantly, everybody in the family was safe. During this time, Faith’s 16-year-old son, Ransom, was her biggest support, helping his sisters with school, playing his favorite sport golf and keeping the family together.

On May 4, 2005, exactly three months to the day after the fire, the Tipton-Smith’s lives were shattered when Missy, their friend Alex and Ransom were in a car crash. Missy survived but Alex and Ransom did not. Even after his death, Ransom showed his complete selflessness by donating his organs to save countless people. This included a 19-year-old girl, who would have died without the blessing of Ransom’s heart.

Within three months, the Tipton-Smith’s life was completely turned around. The shell of the house still remains and the constant reminder of Ransom is with them everyday. Faith has always been very involved in her community, helping Missy and Emily on the cheerleading squad, volunteering at March of Dimes events, and now organizing the Ransom golf charity event to honor her son the hero. To ask anyone in the community who deserves this, the answer is always Faith!

In this episode of “Extreme Makeover: Home Edition,” Ty and the gang will bring this family home to a place where they can fill their home with love and grow with the countless memories of Ransom.

While Ty and the designers, local builder Oakwood Homes LLC of Atlanta and hundreds of volunteers and workers are rebuilding their home in just seven days, the Tipton-Smith family will go on vacation at the Hilton in Costa Mesa, CA. The episode “Tipton-Smith Family” will air during the 2006 season.

The design team for this episode of “Extreme Makeover: Home Edition” will feature team leader Ty Pennington and designers Michael Moloney, John Littlefield, Eduardo Xol and Tanya McQueen.

The series is produced by Endemol USA, a division of Endemol Holding. It’s executive-produced by Denise Cramsey. David Goldberg is the president of Endemol USA.

–ABC –

Sunday, February 18, 2007 3:49 PM CST

We're finally out of the cold snap we've been in! Temps today are about 20 above, with warmer weather on the way. Hey, it's above zero, so it feels quite warm out. :)

School has been good for Carson - they just celebrated the 100th Day of School last Thursday. He had a fun time with the activities. He's been busy counting to 100 and when you ask him how many slices of bread, crackers, etc. he wants, he responds '100'. He also had a wonderful time at the Valentine's Party and excitedly shared news of the party.

Carson had lab work a little over a week ago. Everything looked great and for the first time EVER (since we've been watching it for almost 5 years), Carson's EBV levels were NON-DETECTABLE! We are over-the-moon thrilled!!! Keep it up, Mr. Carson!

It's been a busy few weeks - work has been hectic for us and we were all re-diagnosed with strep throat. Third time this year for Daddy & Mommy, second time for Carson. Seems we can't kill it out of Carson's system and then he re-infects us. We are approaching the end of February and have been on antibiotics for most of the year. We're all doing cultures after we wrap up these kicked-up-a-notch antibiotics to see if the strep is dead.

Mommy had a meeting in Minot this past week. It was fun for her to see Minot State and all of the changes that have been made since she and Daddy went to college there.

Mommy has a conference in Boston - she leaves next weekend and will be gone a week. She's looking forward to some seafood and the conference, but will sure miss the boys!

We learned of some very sad news yesterday - the church Daddy & Mommy were married in - and Mommy spent several years through elementary - high school in, burned down. It was a modern country church, with the constructing of it a true community effort. It was 27 years old. It sounds like it was electrical. Thankfully, the confirmation photos were saved. Please keep the West Prairie Lutheran Church of Rural Williston, North Dakota in your prayers. Many special memories in that church for us and for many, many others.

Take care, stay warm and God Bless!

Carson, Daddy & Mommy

Sunday, January 28, 2007 10:04 PM CST

How can it be a month has passed since our last update?!?

First, Happy New Year (safe to do that since it is still January, right?)

Here's what's new in our world:

Carson's check ups with cardiology and GI/transplant were, well, boring. We LOVE boring! No changes in meds or any other things...all is the same from a year ago. They were both happy with his growth, he turned on some charm (told his cardiologist he had a silly tie), and a few pokes, prods, listens, and an echo and we were outta there! We did stop at Build-A-Bear and now have a new addition to our family - Curly! He has a Superman outfit (complete with cape) and a doctor's outfit. Very cute. Still waiting on one more hearing aid for Curly (got one and another is on backorder). Carson thinks the hearing aid is pretty cool.

The next morning after we got back from the Cities, we motored to Williston for a night with Papa Chip and Loni and then on to Regina. Met up with Nana, Papa, Uncle Derwin, Auntie Dana, Uncle Ian, Auntie Rhonda, and cousins Kirsi, Brody and Hannah. Checked out the pool, Science Center, did some shopping, took family pictures, and the main event - Kirsi's baptism. This was the first time we'd met Kirsi. She's a cutie. She was born in Sri Lanka last April and has since moved (with Mom and Dad) to Chile. Fun weekend. We also celebrated Carson's 5th Transplant Anniversary (now known to him as his 'Liver Birthday') with cake and his special candle. Back to Williston for a quick night and then home again. Back to work and the start of a new semester!

Since then, Trav and I have been sick twice with strep throat. Such fun! With round two we got someone else tested even though he didn't complain of anything. Who do you think has been the carrier for strep all along? (Think, think, think...)

Our kitty, Sylvester?

Nope.

Our kitty, Tigger?

Sorry, guess again!

It wouldn't be Mr. Immune-Suppressed, would it? Mr. Carson?

You guessed it! No yucky throat, no fever, no symptoms. But yes, he had strep throat. Okay, now here's the scary part...we obviously don't get thrilled when things like that showing up in school around him. Now we can't help but wonder if he spread it to others and if so, how many?!? Ugh! So, all three of us are on meds and on the mend.

That's about it from here...we finally got a bit more snow today, much to Carson's delight. It will finally cover our grass up. Crazy winter! He wants to make a snowman so badly! :)

Hope all is well with you and yours in the new year.

Take care and God Bless!

Love, Carson, Dad & Mom

Monday, December 25, 2006 9:44 PM CST

We hope everyone had a Merry Christmas! Santa was good to all of us and even though we had a brown Christmas, he still found out house. Much to Carson's dismay we still have no snow. He is hoping January is better in the snow department, as he's resorted to making snow and taping it to our family room ceiling. Not quite the same in his book, but something needed to be done!

Carson has talked to Santa three times this season: once at the mall, once at a local park and rec program that we go to every year and at Signing Santa (Santa knows ASL!). He told Signing Santa he wanted a REAL car! Yikes! He was thrilled to see Santa ate the cookies and drank the orange juice we set out for him last night (Carson can't drink cow's milk, so he didn't think Santa should either).

Carson enjoyed making a cake with me yesterday...we made a birthday cake for Jesus! It really helped him understand Christmas a bit more. Will be a tradition we'll continue to be sure.

Carson crashed pretty early tonight. He was up late last night with presents to open and then inspect and play with a few of them. Since he needed to be asleep for Santa to come, it didn't take too much to coax him into bed...it was still late though! Santa continued the tradition of bringing us all new Christmas pj's - so cozy!

We had a bunch of folks here for Christmas Eve and then went to Grammy's house today for Christmas Day dinner. I (Mommy) got another sinus infection two days ago, so have had 'fun' with that this weekend. Feeling a bit better though now, thankfully.

Here are some pics from Christmas this year:

December has been busy. Carson lost another tooth! Since the new one was well poking through he couldn't ask for front teeth for Christmas. He did a great job in his Sunday School program (an adorable little angel) and has learned at school about the many different holidays celebrated in December. He's on break now and asks often when he can finally go back to school. Daddy is enjoying semester break as well and doesn't start teaching again until January 9th. He'll have a busy semester - he's teaching 5 sections of Intro to Antro between NDSU and MSCTC. Mommy is busy with end-of-semester activities and gearing up for the new semester.

We are quickly approaching Carson's fifth transplant anniversary - it's this Saturday, December 30. He continues to be a miracle in action. We are thankful for his stable labs and continued good health. Checkups with cardiology and GI/transplant this week...we hope to have great news to report!

We are so thankful for Carson's precious gift of life and are so grateful to his donor family for making the decision they did...they lost a sweet little boy almost five years ago. We're so glad they had Christmas with him before he became a precious little angel. Please keep them close in your thoughts and prayers!

We prayed five years ago for a Christmas miracle. We certainly got one...just not on Christmas Day.

Here's Carson on December 5, 2001:

One year Anniversary:

Two year Anniversary:

Three year Anniversary (complete with three fingers held up):

Four year Anniversary (with the candle we light each year to celebrate Carson's life and to honor the memory of his little donor):

Such an amazing journey with our sweet boy. We're so thankful that God chose us to be Carson's parents.

Will update early in the new year about his doctor visits!

All the best to each of you. Love, Carson, Daddy & Mommy

Sunday, November 19, 2006 7:41 AM CST

How quickly the time flies!

Our last update talked about Carson's first open heart surgery...here is a pic of him and his 'road map' on his chest and abdomen. (He'll love this pic in a few years...). He has really healed well from his four big surgeries. He has extra belly buttons from the JP tube sites, dialysis, etc.

School has been better for Carson. We're hoping he has found his 'groove'. He adores his teachers and we're blessed he has such wonderful teachers.

Labs are a better as well. Another round soon. We're pretty sure he had a big growth spurt and as a result he needed more of his anti-rejection med. He gained about 3 pounds and grew almost an inch in a really short time. We're gearing up with all of the extra labs and the ultrasound that needs to be done before his annual check-up trip in December too.

He really enjoyed Halloween. Sorry these are so late in sharing...I had a conference out of town right after Halloween and then got sick after I got home and have been dealing with a sinus and ear infection for two weeks (my first ear infection in my life - not fun! I feel for these little kiddos with them!)

Special thanks to two of Carson's CCRI gals for the brains behind the costume. The lights even worked and looked pretty cool in the dark! Carson won second place at a party for kids with special abilities. Very fun!

Carson has a cough and sniffles again. The delightful early winter 'crud'. Hopefully he can shake it soon. He has Wednesday - Friday off from school this week, so that will help with some R & R. We're going over to Auntie Diane's and Uncle Paul's for Thanksgiving so we won't be travelling far!

We're so thankful for Carson's health in this season of Thanksgiving. He is such a blessing!

Take care and God Bless,
Carson, Travis & Rhonda

Monday, October 23, 2006 5:58 AM CDT

Once there was a boy
Who was born with a hole in his heart.
When he was old enough
They sewed it shut.
Ever since
His heart is very open.
Some healthy people
Wish they had had open heart surgery
To open their hearts more.
They think the operation did it.
It was his mother and father who really did it.
The doctor only sewed it the way it was.
Anonymous

This was a verse framed on the cardiac floor of Children's Hospital-Minneapolis.

Five years ago today Carson had his second major surgery (first was the Kasai at 7 1/2 weeks). His open heart surgery was a necessary evil as a step towards getting him on the liver transplant list. We knew his liver wasn't doing well and that he'd need to get one likely within his first year. Of course, we didn't know 'the plan' like Carson and God did!

Carson and I were paging through his baby books yesterday and I came across the page I journaled in his one of his baby books (his first year is five volumes - two dedicated to open heart surgery and his transplant journey). Here is what I wrote:

Where to begin? Carson, the next several months--from Sunday, October 21, 2001 through Saturday, January 26, 2002 to be exact--your baby book extends into two extra-special albums that define a very significant part of your life. Little did we know when we left home in Fargo on that October Sunday morning that we wouldn't be returning for over three months. Little did we know that we'd not only be getting your heart fixed but we'd also bring you home with a new liver and the amazing story of a miracle. Little did we know that we would meet countless people who would become some of our closest friends. Little did we know that you were going to weave your way into the hearts of immeasureable people who would pray for you as you battled for your life. Little did we know many things...

You have taught us so much, Carson, and we know you will continue to teach us many lessons in life. May God continue to open our eyes, ears and hearts so that we may continue to learn from you each day. God Bless You, Carson Noah!

Mr. Carson has had over a week off from school and is very excited to head back today. We had his teacher conference a little over a week ago. Carson loves school but is struggling a bit to find a balance with everything. Watching the teacher and interpreter at the same time is a skill he needs to keep working on, without getting distracted with what else is going on in the classroom. Speech therapy is coming along as well and he is learning a lot of new signs too. It's exciting to see him expand his sign vocabulary, since this his how he'll communicate likely for the rest of his life! We're hoping and praying for a good transition back.

Sunday School sang in church last Sunday and Carson did a pretty good job with everything. He'll still occasionally 'conduct' (follow the music teacher) as he thinks those are 'signs' he needs to be doing. He can say 'Bible' very clearly now. 'Jesus' is a bit harder, but we're working on it.

We have labs again this Wednesday. They are getting better and hopefully by Thanksgiving will be at or close to normal again, if his trend continues. We finally got the okay to go back to prograf every 12 hours. We were thrilled as we can now get to bed at a decent time! :)

Carson is going to be a traffic light for Halloween. With all of the stop, no U-turn, yield, speed limit, etc. signs he has posted around our house, we thought it was only fitting. We'll post pics of our traffic-stopper!

It's hard to believe the semester is over half done. Travis has three classes this semester and has five classes to teach for spring semester. He'll be busy! We had snow a few weeks ago, but it's gone now. Hopefully for a while we don't see any white stuff.

That's it from here. We are so proud of how well Carson has done and can't believe it's been five years since his first open heart surgery. We'll be doing something special with our little miracle tonight.

Take care and God Bless,
Carson, Travis & Rhonda

Wednesday, October 4, 2006 9:05 PM CDT

Better news to report tonight...his labs dropped again for the third lab draw in a row. His AST, ALT, Alk Phos., GGT, and 5'Nucleotidase aren't where they should be but we're inching a bit closer to the normal range. Hopefully just another time or two of weekly draws and then maybe we can bump down to every other week for a bit. We are sooooooo looking forward to getting the prograf off of an every 8 hour dosing schedule. We have been so spoiled with it every 12 hours for so many years! Maybe we can move within another few weeks as well. We can hope!

Carson got over his cold and cough...he'll be getting his flu shot soon (guess we all will!) so hopefully that wards off a few bugs this winter.

Thank you for your continued prayers!

Saturday, September 30, 2006 6:47 AM CDT

Good morning! Quick update...

Carson had labs on Wednesday afternoon. They look a little better again, so we are very happy and relieved. His prograf was upped even more earlier this week and he had a rough time with the side effects...headaches and had very restless nights of sleep Tuesday - Thursday. On top of all of it, he's caught a bug (cold and cough). I talked to his transplant coordinator yesterday and she ok'ed backing down on the prograf a little and that seemed to do the trick as last night he slept wonderfully (and is still sleeping - he's usually up by about 6:30, so this is good!). Another couple weeks of weekly labs and if the trend continues down, we'll be able to back down to labs every other week.

Kept him home from school yesterday and on top of it he missed a field trip for the fall social for deaf and hard of hearing kids in NW Minnesota. He's so enjoyed these days before, but he needed rest more than anything. He even took a nap yesterday morning and Trav took him in to the dr. to check out the cough. All is fine and just a part of the viral bug. Wanted to be safe. When I told Carson yesterday morning he'd see a doctor later in the day, he signed, "Good, I'm sick". Kinda like 'hello, have you not noticed?!?'

I was gone for a few nights this week for work...it was a great and informative trip, but happy to be home with my boys.

We're looking forward to a very relaxing and restful weekend - very little is on our agenda!

Thanks for all of the continued prayers!

Thursday, September 21, 2006 9:18 PM CDT

We are breathing a little easier tonight. Labs this afternoon went wonderfully--thank you Nancy and Renee!

The tears this afternoon only flowed when I picked Carson up at school as he wanted to ride the bus home. He continues to be worried about if he is sick like he was when he was a baby and is pulling his transplant scrapbooks out more and more to ask questions. He's convinced he needs to go to the hospital as well (he specifically asked to go to the ER tonight). Yikes. Oh how thankful we are that he doesn't remember that timeframe, but yet we're also thankful for the hundreds of pictures we took during that time as they tell his miracle story.

He informed me the other night that I was sick and he was taking me to the ER. He proceeded to pull out his doctor kit. This is no normal Fischer Price doctor kit. It's the ramped up model that isn't available on TV or in Target. It's complete with OR booties for your feet, the hair net type thing for OR work, a few masks, a real thermometer, a real-deal stethoscope, some gauze pads, and pink swabbies for refreshing your mouth. He wants to add EMLA cream and tagaderm but we've said no to those! Anyway, I had a good check of my ears, eyes, throat, and neck and was pronouced 'ok' by Dr. Carson. I couldn't have been in any better hands.

So, the news you've all been waiting for. Labs are stable to a little better. Here's the run down of labs from 08/24, 09/07, 09/12, 09/18, and today- 09/21:

Bili total: 0.3, 0.5, 0.4, 0.4, 0.3
Bili direct: 0.13, 0.19, 0.16, 0.17, 0.13
AST: 56, 78, 90, 119, 80 (yeah - down some)
Alk Phos: 243, 272, 327, 504. 539 (up a bit, but not a jump like before)
ALT: 41, 62, 95, 131, 104 (yeah - down some)

GGT went from 122 on 09/18 to 135 today. An increase but not HUGE.

So, we have a ways to go before they are where we'd like them to be but we hope this is the start of a trend. We'll feel better if we get good results for the next draw as well and just keep it all going from there.

Actigall arrived yesterday so he's only had a few doses. We'll keep on with the prograf (3 mg/day now) at 7:30 a.m., 3:30 p.m. and 11:30 p.m. Will talk to the transplant team tomorrow morning and things may or may not be tweaked a bit. We're sure labs will be again next week sometime, just not sure when yet.

We just may get some sleep tonight, of course after 11:30 p.m. prograf. Needless to say, our sleep hasn't been quality sleep lately. Hopefully some sweet dreams are in store for all of us tonight!!!

Thank you to all for the prayers...keep them coming. Also, prayers of thanks that Sami's labs are better and for Laura. She received her new liver earlier this week and is stable.

Hugs and God's Blessings,
Rhonda

Monday, September 18, 2006 6:18 PM CDT

Well, today's news wasn't what we had hoped for. AST is up to 119, Alk Phos is 504, and ALT 131. His GGT is up to 122 (Carson typically runs about 10 for this value).

So, his prograf is being upped BIG TIME and we're adding actigall back into the mix. Prograf will stay at every 8 hours. Labs again on Thursday afternoon (Nancy and Shirley, we really missed you today....that's all we have to say about that!). His level of immunosuppresion (prograf) is almost double what it was one month ago, which is a bit scary for us with him in a new school. Pray for these labs to shape up and that he stays healthy.

Transplant team feels getting his Prograf level up in the 10 trough range will take care of this. Will likely know more about a potential biopsy in the next week or so. If things are worse on Thursday we are thinking that it woudl be a good plan to head to the Cities for the biopsy just to hopefully take a look at what is going on and find some answers.

Thanks for the notes and the prayers. We really appreciate them. If you haven't seen the pics on the last journal, be sure to check them out! :)

Will update Thursday/or when we know more.

Thursday, September 14, 2006 7:35 AM CDT

Time for another Carson update...along with a prayer request.

The summer flew by...horse therapy was a big hit. Carson took more risks this summer and gained a lot of self confidence.

We took a break from swimming lessons this summer and just started up now for the fall. He gets virtually nothing out of group lessons with not hearing anything in the pool without his hearing aids in, so again we're doing one-on-one lessons. His teacher is a sweetie and they'll have a great time together.

The big events were saved for August and September...he lost his first tooth on August 29. He was so proud! It was loose less than a week and the new tooth is already pushing its way through. He thought the Tooth Fairy visit was extra-cool and is likely trying to figure out ways to get rid of more teeth soon...good income!

Then, one week later he officially became a Kindergartner. Mom only cried the night before (which caused Carson to cry too...he was so sad to see Mom cry). He thought the half-hour orientation the first day was pretty short and the look on his face was a little puzzled. We reassured him he'd go longer then next day. The next day he rode the bus and was happier to be at school for two and a half hours. He goes afternoons and has a wonderful teacher. His interpreter, deaf/hard of hearing teacher are great and we've only briefly met his speech teacher and occupational therapist. The nurse and health assistant are wonderful as well...had a great meeting with them and we feel he is in great hands. He had a bit of a problem on the bus Tuesday with moving around...probably the first time he’s been unrestrained in a vehicle so the freedom was a bit much! All in all, it's been a good week and he's been excited to go back and wishes Saturdays were in the plan; hopefully he'll keep that attitude for many years!

Carson started Sunday School this past Sunday. One of his teachers from last year is back and Mom is team teaching half the time as well. Dad will hang out with Carson and help with signs and communication. Should be a fun year.

Carson has been causing us some worry this past month...his liver function tests are up. They are not the typical rock-solid Carson labs we've become so used to the past 4 1/2 years. For you liver folks and lab smarties out there, here they are from Tuesday night:

Bilirubin, direct: 0.16 (Carson is typically 0.10, normal is 0.0 - 0.3)
Bilirubin, total: 0.4 (Carson is typically 0.3, normal is 0.0 - 1.2)
AST: 90 (Carson is typically in the 30 - 40 range, normal is 1 - 32)
ALT: 327 (Carson is typically in the low to mid 200’s-he typically runs higher than normal on this lab, but not this much, normal is 44 - 147)
Alk Phos: 95 (Carson is typically in the teens to low twenties, normal is 10 - 35)

So, his bili levels are not quite his normal, but nothing we'd get worried about if that were it. His AST, ALT and Alk Phos, however, are way beyond his normal range. We've gone to a screeching halt with our labs every two months and were down to weekly and now it's been every few days. Ugh. Thankfully, due to pixie sticks and Emla cream, he has been all smiles through the pokes. His prograf has been upped a few times (his anti-rejection drug). Now we're shifting it up as well as changing it to every 8 hours. That is so fun with a kid! Hopefully he'll sleep through the 11:00 p.m. dose. Guess that means we have to stay up too!!! He is down to only the one med, but we see that potentially changing in his near future. He got off of the Valcyte this summer for his EBV...thankfully EBV levels have continued to stay low. This could be just a blip or it could be something else. Be lying if the dreaded 'R' word wasn’t in the front, middle and back of our minds (a.k.a.: rejection). We are so thankful to have not been down that path...and continue to hope it stays that way. So, prayers needed that everything shapes up soon and that his liver gets to it’s 'happy place' again very soon. We know we are so fortunate with how smooth-sailing everything has been in the liver department and hope and pray this is behind us sooner than later.

We do want to ask for specific prayers as well for a few folks. A girl (Laura) got her liver transplant a few weeks ago. Her new liver clotted off and now she is status 1 for needing a new one. Landon is a cousin (Carson's Grammy & his Grandpa are cousins)...he had open-heart surgery yesterday (with the same surgeons that did both of Carson's heart fixes). He's doing well but we know too-well the rollercoaster of those first few days and weeks. Brother and sister Kyle and Sami need some prayers too...Kyle had a liver transplant a few years ago and has been having yucky labs all summer. Drs. are scratching their heads trying to figure out what is going on. His sister Sami had a liver transplant almost a month ago. She started first grade last week--WOW! Her labs are a little off, and we hope and pray they settle down soon. All of these families are going through so much right now and could use your prayers.

That's all for now. Will update after labs on Monday. Have to figure out some logistics of getting the Prograf trough level (the lowest level that a drug is circulating in the body), and how the lab, results and all the other fun can work together. Have a few calls to make.

Thanks for the prayers. Take care and God Bless.

Love, Carson, Daddy & Mommy

Monday, July 17, 2006 6:30 AM CDT

The Twins game was so much fun! We started at the ALF tent for some pics with ALF-ie the Liver mascot and a quick lunch. Also got to see some liver buddies. Then it was time to go to the game. Carson was a little mad at first...since we were in a hurry we didn't stop at intersections when we were crossing the street...the roads were blocked off and it was safe but he was very angry we weren't obeying the rules of the road...try to explain why it was okay now but not for other times to a 5 year old!!! He was also a little shy at first, but quickly warmed up to T.C. the mascot.

Carson received a Major League Baseball as well as a white jersey from the Twins. The jersey is pretty big, so he'll have something to grow into in a few years. He kept signing 'baseball game' and was so excited. He tossed the ball around with T.C. and had some hand shakes with him as well.

The Twins also won, which was fun to see. It was a short game and we were on the road home by late afternoon.

We spent time at Albertville on the way down (since he has one pair of jeans that fit...that won't work for school this fall!) and at MOA (Mall of America). He did a few rides and had a fun time. The favorite rides were the zippy little cars and the rollercoaster. He wanted so badly to ride the fast & 'real' rollercoaster, but we want to check with his cardiologist first! He announced the horses on the merry-go-round were way too slow and was a little annoyed they wouldn't go any faster. Supper at Rainforest Cafe rounded out the night.

Carson had such a great time and we got to share the special day with family and friends that attended as well. A big thank you to the American Liver Foundation for sponsoring the day and choosing Carson to throw out the ball.

We got a pic of many of the family and friends that were there for Carson (sorry we missed you Nancy, but we'll bring him in to his next labs with his jersey on for a pic!).

The pics from this weekend can be viewed at http://www.flickr.com/groups/carsonsmiracle/. We'll get some added here too. You'll have to request to join the group, so just do the steps and we'll approve you. (We don't want this group public so anyone on the internet can see.) We'll also add other Carson pics to it over time too. If you have any pics to share from the Twins game you can also join to share the pics and add them to Carson's Miracle group. Just let us know if you have any questions! We've set up an email for Carson at carsonsmiracle@yahoo.com.

Here is a link to the story in the Fargo Forum: http://www.in-forum.com/articles/index.cfm?id=133094

Here is a link to the Williston Herald blurb: http://www.willistonherald.com/articles/2006/07/14/sports/sports3.txt

Love and God Bless,
Carson, Daddy & Mommy

Wednesday, June 28, 2006 6:00 AM CDT

A few quick updates on Mr. Carson:

Horse therapy is going wonderfully. He's in for 12 weeks this summer. He gets so excited about going to a farm, seeing kittens, and of course, riding horse!

Carson graduated from 'Safety Town' a few weeks ago. It's a program for kids going into kindergarten in the fall. He loved it. His appreciation for stop signs is back and they once again decorate our walls (you need to stop at 'intersections' in our house and look both ways). Now yield signs, railroad crossings, traffic lights and various other road signs have also been added to the 'cool' collection, so we have quite the town set up in our home. :) He has learned how to make shapes, fill color and add text boxes in Microsoft word, so most of these creations are his own, which make them even more special!

His labs are wonderful! EBV is at the lowest ever!!! YEAH!

His big news is that he'll be throwing out the game ball at a Minnesota Twins game on July 16. The American Liver Foundation of Minnesota and the Dakotas is doing some special things at that Twins game--educational info handed out and some messages during the game. The ALF got to pick who'd get to throw the first pitch and it's Mr. Carson! We have family and friends joining us for the game too. We got Carson a Twins jersey, kiddo glove and ball over the weekend and he thinks its all pretty great. Just wait until you are on the field of the MetroDome, Carson, getting ready for your Major League debut!

Carson is having a great summer ~ hope you all are too!

Love, Carson, Daddy & Mommy

Thursday, April 27, 2006 9:16 PM CDT

Greetings,

Although it seems we all say this every year, but we simply can't believe Carson is another year older tomorrow! He is so excited about his birthday and has been counting down for some time now (he loves calendars, so has been making countdown calendars as well for some time). He's very excited for his bowling birthday party on Saturday!

A quick update with lots of pictures...Carson is doing wonderfully. Labs are great, the weather is wonderful so he is enjoying outside time, and we got back last week from our southern California adventure. To say that we had a great time is an understatement!

Carson got to sit in the cockpit of the airplane

We had a wonderful time at Disney

Sea World was a little soggy (not because of Shamu, but because it rained off and on that day). We bought sylin' ponchos and still had a great time

The Zoo was an adventure

And the Wild Animal Park was one of the most incredible and extraordinary things we had seen (this is a 'must see' in the San Diego area)

We had an incredible time and even a day of a few raindrops didn't dampen our spirits. We had a wonderful Easter.

We're so thankful Carson continues to do well...we pray that his next year is full of good health.

Take care and God's Blessings to you!

Love, Carson, Daddy & Mommy

Thursday, April 27, 2006 9:16 PM CDT

Monday, March 27, 2006 9:16 PM CST

Mr. Carson is feeling better. No more fever and his cough is not quite as bad. Hopefully he continues on the trend to getting better. We leave for vacation soon and don't want to deal with 'sick'. :-) Thank you for the prayers for Carson. He really scared us. I think it's the highest fever he's ever had.

He has been very grumpy the past few days...such a joy to be with. If this is a tiny glimpse into his teen years we are in big trouble. We could hardly stand to be around him yesterday morning (this was after sleeping for 12 hours straight) and he finally fell asleep and took a nap (another sign he's still not feeling great). After that we could at least look at him without a grumpy outlashing.

We want to make a big mention of Geoffrey McCarthy. Geoff is running the 110th Boston Marathon on April 17, 2006 in honor of Carson! Money raised by the Run for Research team through the American Liver Foundation goes directly to educational programs and important research into the cause and cure of liver diseases. It is our goal, as well as the goal of many, to find cures to liver disease so that someday kids like Carson don't have to go through all of the journey that liver disease includes.

Please consider dontating to the Run for Research cause. You can donate online--go to www.liverteam.org and click on "Sponsor a Runner" from there follow directions to the donation site for Geoffrey McCarthy or you can send a check (payable to the American Liver Foundation) directly to Geoff at 15 Kenney St. Jamaica Plain, MA 02130.

Go, Geoff, go! :-) We're excited to cheer you on!

In the coming days I hope to get some new pictures up. As cute as Mr. Snowman pic is, he has to go. That stuff the end of March/early April is just nonsense! Stay tuned...

Thursday, March 23, 2006 6:26 AM CST

We had an adventure last night. Carson was invited to a sign language interpretation of Stuart Little yesterday, so he left home at 9:30 yesterday morning and then went directly to school after the play. He told his teachers he was sick, but they said he didn't act a whole lot differently. After school, he was with respite care staff until I got home at 5:30.

He didn't want to give me a hug, which was unusual (should have suspected something right there). Within about 15 minutes I heard the squealing of his hearing aids...he was stripping down. (Such a little boy!) Hilary was over and we were going to visit over supper. I went downstairs and hugged Carson and he was a furnace. Took his temp: 104.0! I took him upstairs, got two other thermometers and took underarm and ear. Now I got 104.4. Got him dressed, gathered the emla cream (numbing cream, as I knew he'd need labs-needs them anytime he has a fever over 101.0), medical binder, etc. and off the three of us went to the ER. (Dad was teaching, and his happy students got out of class early last night so he could join us.) Hilary was so sweet and helped out and waited with us--thank you!!!

We had the best ER experience. Didn't take long to get through triage and the nurse said he was certainly an ER case versus Urgent Care. Temp was 103.3. We didn't have to wait too long to get in to the ER. Doc came in, she wanted labs, x-ray, urine, throat culture. She quickly ruled out an ear infection. He's had a bit of a cough for a day and a half, but not anything serioius (so we thought). Got everything taken care of very quickly (a former PICU Fairview nurse drew his labs/started an IV--she was wonderful). Turns out his cough is something...he's got the early stages of pneumonia! Everything else looked good. White count is up very slightly, but not very high...The doc thinks this was caught very early by the look of the x-rays. Started him on zithromax and we're going to follow up with Carson's doc today. But the most amazing thing...we had all of that (plus a popsicle, watched videos, and had to wait for the first zithromax dose to arrive) and we were in and out of there in less than three hours!

I think we're ALL ready for SPRING!!!

Thursday, March 23, 2006 6:26 AM CST

Saturday, March 18, 2006 4:24 PM CST

Carson made it through the past 2+ weeks without chicken pox. :-) During a one-week span he was exposed to chicken pox, mono, and strep throat. Thankfully, he didn't pick up any of them. We're ready for Spring in our house!!!

Carson is getting very excited for his birthday. We have over a month to go, so hopefully the wait isn't too tough. :-) We're looking forward to our trip to San Diego in April too...Sea World, the Zoo, the Wild Animal Park, Disneyland, and beach time are all planned. Should be a lot of fun and also some relaxation time. We haven't told Carson yet...we want him to sleep between now and then. :-)

I received the following verse via email this past week...it is so incredible and puts into words a bit of what the journey has been like the for nearly five years with our miracle, Carson. Although we wish he would have never had to experience what he has and that he has medical things to watch for for forever, we are so thankful for the incredible people we've met along the way and that have prayed for Carson and for us so many times. Many of the people we've met in person or via the on-line support communities in the past 5 years we consider our closest friends. If this path was the path God chose for us, wouldn't trade it for anything. At times this path has been beyond overwhelming...from learning about his cardiac condition to the diagnosis of a rare infant liver disease to open heart surgery to the fear of waiting for a liver to the tears of learning there was a precious little angel that would become Carson's donor to recovery from his liver transplant to learning about his medically-induced hearing loss to his second open heart surgery. There have been highs and lows in-between each. Looking at him bounce around the house today like his favorite pal "Tigger", there are many more highs than lows and we're thankful he will only know of the challenges he's been through thus far from the pictures and stories (and the beautiful road map on his chest and abdomen).

For the references to "Holland" and "Italy", see http://www.our-kids.org/Archives/Holland.html.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Thursday, March 2, 2006 5:25 AM CST

Update, March 2, 2006 9:30 p.m.

After a few phone calls today we learned (maybe reminded...I think we knew this somewhere in the depths of our transplant knowledge, but had tried to forget, likely hoping we'd not need this info...) that Carson needs the shot within 72 hours of exposure. That gave us some time.

By late morning we talked to the ER doc and they had found the shot and it'll be here by 10:30 tomorrow (Friday) morning. Yahoo!

Carson is not a fan of his new med...he tried to barter with me this morning. He tried to tell me it should go in the garbage. I told him he had to take it for 5 days (an ETERNITY to a kid). We checked out the calender...he was not pleased. I also told him he needed to take it 4 times a day. He's a kid that likes to be in the loop, so I thought that would be helpful for him. He shook his head and told me "no, 2 times a day". Guess I should have started higher to settle on 4...oh well. So, we have a little countdown going until the acyclovir is done.

As I tucked him in this evening his biggest concern was how many books we were going to read before bed. That, and which ones. That is, of course, a very big decision...5 books means so much more 'stay up later time' than 3 books after all. In many ways I'm thankful that he is so young to not realize the worry that parents go through. I also hope that he doesn't get the sleepless nights and grey hair from his kids like we're developing!!!

So, things are looking up and we're continuing to pray that the pox stay away. :-)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

WE HATE CHICKEN POX!

Got the dreaded call yesterday...Carson was exposed to chicken pox on the bus on the way to pre-school. We are so thankful for his bus driver...she happened to not be driving yesterday, but called as soon as she knew about it...even before she knew a lot of details. She followed up with more info and had already done a major cleaning of the bus. So thankful for people who 'get it'!!! How grateful we are to have people like this watching over Carson.

Anyway, Trav called and talked to Carson's transplant coordinator...to be on the safe side she mentioned the option of doing the VZIG shot (Varicella-Zoster Immune Globulin) and getting him on an oral anti-viral. Trav and I tend to fall into the "chicken" category when it comes to anything like this...it's so hard not to think 'worst case scenario'. So we decided to go for it and do the shot and meds. Meds are only for 5 days...piece of cake to all of this, right?!?

I called our local clinic and unfortunately neither Carson's doc nor my doc were there (that's okay...everyone needs a day off!!!) Do you think your kid is a bit too well-known when you can call someplace and say "Hi this is Rhonda, Carson's mom" and immediately get patched to a nurse...

Carson's not a real simple case, so thought I better talk to the ER next. Talked to several wonderful people there and once it was deemed this was "ER worthy" got to talk to a nurse there. She was wonderful! The VZIG shot is the same shot Carson needed in February 2003 when I had shingles and had to move in to my mom's house for 10 days...have to be honest I had a few flashbacks that weren't pretty. When Trav and Carson were in the ER that night it took 3-4 hours to round up the shot from around town. I thought I'd try to shave some time off of our visit and being the germ-nerds that we are, not a big fan of being in an ER for long. They are great about getting us into a room right away vs. sitting in the waiting room with all of the coughing, etc.

Ironically, Carson's first doctor (what a distinct honor of being his very first doctor!) was working yesterday. He moved from family practice to ER about 4 years ago and we've seen him most of the times we have Carson in the ER. It's wonderful as we don't have to give the 'start from birth story' each time!

The first obstacle was how much VZIG to give him...wasn't specific dosing info included (something to the effect of 'depends on situation'). A call to Minneapolis to try to talk to transplant on call wasn't successful...they were in a transplant! Eventually dosing info was determined.

Next obstacle...finding the shot. It's not real common, and they already knew they didn't have it at the hospital. They called the other hospital in town and the local blood bank. No go. The pharmacy checked with 15 locations in North Dakota...there was not a single VZIG shot in the whole state! So, the doc called in the med, Trav picked it up and we started Carson on it last night. 4 times a day for the next 5 days.

We're hopeful that they can locate the shot for him today...if nothing else getting it from Minneapolis is the best option. I talked to the doc I think 4 times last night...he is great. He's also on duty today and tomorrow in the ER, which will be nice too. I'm so thankful we didn't go and wait in the ER.

I know that it is likely all will be fine with Carson. Chicken pox just scare the everything out of us though...they almost rank up there with the word 'rejection'. Not quite, but it's up there. They can be so dangerous for Carson. Guess it just means we'll let him run around in just his undies for the next few weeks (only when we're home!!) to keep an eye out for pox. He'll love it, as he thinks clothes should be optional most days...

In other updates...just to show we do have a bit of normal stuff around here...

Carson has his new hearing aids. He LOVES them and has wanted to sleep with them in several times. (Not a good idea, but he's fallen asleep with them in a few times and then we take them out after he's asleep). I'll post a pic of them soon...they are blue and very cool. We picked the color. Carson is way to fickle with his favorite colors right now...one day orange, another red, another purple...you get the idea. Well, we didn't think purple hearing aids would still be a hit with him 3 years from now...Carson picked his earmold color this time (we get new ones every 3-4 months, so him getting control over that was fine). He picked clear. First time with clear...they are cool as well.

Carson melted my heart on Valentine's Day when he asked me in sign "Are you my valentine?" Now it's our game and we ask each other it all of the time and always end up with a massive squeeze hug to confirm it.

Carson's labs two weeks ago were amazing. The whole process was amazing! He's done pretty well with labs in recent months...not too much of a fight. I brought some pixie sticks with and told him after labs he could have some candy. We've not bribed much before, but thought it would be okay. I held the candy in front of him during labs and he giggled through the whole process. Yes, he had special "Elmo" cream on (actually 'Emla' but we call it 'Elmo'), but he GIGGLED through the whole thing. Big smiles. He was so relaxed when the needle went in and blood was filling the tube instantly. Since he has to watch the draw (mom still gets squeemish sometimes, but not Carson) he knew since it flowed right away this was good. It was over with so quickly and I ripped open a pixis stick and poured the sugar in his mouth. :-) So, we might giggle through lab draws but rot his teeth in the process. (We're not big candy folks...). With labs every 2 months I think we'll be fine...

Speaking of teeth, Carson had a dentist appt. yesterday and all was great. A little polish and he's good for another 6 months. That was great news!!!

Carson was sick a few weeks ago with cough and crud, but it's gone now. :-)

We went to "Monkey Movie" last Saturday (Curious George). It is so cute! Carson loved it. We went bowling afterwards. He loves bowling and has quite the routine to roll the ball down the lane. We're making plans for his bowling party to be at the NDSU bowling lanes...they are smoke free and so great there to work with.

Well, time to get moving for the day. Thank you for your continued prayers...for Carson and for us. The last two months have been very hard for us physically, emotionally and spiritually. Some days are okay, and some are still awful. We continue to hope that time will ease some of the pain.

Take care and God Bless,
Carson, Dad & Mom

Wednesday, February 1, 2006 8:20 PM CST

One year . . .

One year ago today Carson had his second open heart surgery. He breezed through it, and was out within six days. In some ways we were surprised, bracing ourselves for a potentially long stay, but once again he surprised us. He is doing so wonderfully today and we sometimes pinch ourselves that we have labs with him only every two months and that GI/Transplant and Cardiology check-ups in Minneapolis are annually now. Amazing.

Carson has been out of school for a stretch because of a chicken pox scare. Those two words (and also the word 'shingles') fill us with anxiety and fear as they can be so extremely dangerous for Carson. Today was his first day back since January 19, so he is thrilled.

We had Kindergarten registration on Monday. He was so scared when we were at the school...after a bit he almost started to cry. It's essentially a brand new school (I think a year or two old) and very modern. We were completing some papers in a waiting area, and there was a receptionist nearby. After a bit he asked if he had to go to the doctor. After trying to swallow the HUGE lump in my throat, we tried to explain to him that this was his new school in September (even though we had told him many times that morning that we'd see a new school today). Then we pieced it together...waiting area, completing papers, receptionist, etc...yes, it did have signs of a doctor's office! As we were leaving we walked by the school nurse's office. He signed "doctor" again...apparently he had seen the nurse's office on the way in. (Guess his vision is just fine as neither Travis or I saw it...). After more reassurance and pointing out the library, cafeteria, etc. he hopefully realized this wasn't a hospital. Chalk it up to too many 'frequent flier miles' with doctors.

Next Tuesday we'll order new hearing aids for Carson. He's had his current ones a little over three years. We're looking forward to see what the new advances in digital technology mean for him.

We're looking forward to a get-away in April to San Diego. I have a conference out there and we'll all head down early for a few days and a family vacation. Then the boys will head back and I'll come home after the conference wraps up. Carson will love Sea World and the Zoo...we're debating on heading up to Disney too. It will be some wonderful R & R for us.

We're still so devastated by the loss of our baby. Some days are okay; some are not-so-okay; some are just awful. Carson continues to provide wonderful and tender hugs and cuddles and certainly knows when I need it the most. There is still a lot of anger and that is something that I'll just need to work through with time...

Until next time...peace.

Monday, January 9, 2006 3:05 PM CST

It is with a very heavy heart that we update today. After some light spotting yesterday and today, a trip to the doctor and a trip to the hospital we have learned that Sweet Pea's heart stopped beating nearly 3 weeks ago. There are few words to describe our grief, hurt and anger. We pray that with time our faith will guide us through this journey, as God has been there for us and answered our prayers before. Today the answer just wasn't the answer we wanted.

As we just told Carson a few minutes ago, he wiped my tears and tenderly laid his head upon my chest. He understands. Then, in an effort to cheer me up, he took his fingers and worked to make my mouth into a smile. A very tender moment.

Unfortunately, we have been down this path before--losing an angel baby before Carson almost six years ago. Babies and heartache just seem to go together for us. My doctor has tried to reassure us that since we've had a full-term baby we're not any more likely for this to happen again. It's hard to hear that right now.

Please keep us in your prayers. We need them right now.

______________________________________________________________________________

Saturday, January 14 update

It has been an long and awful week. Carson has been our ray of sunshine in the midst of all of the darkness. He has been so sweet and tender and full of cuddles.

Thank you for the notes in the guestboook...they mean so much to us during this awful time.

We appreciate the prayers as well. We need them...

Sunday, January 1, 2006 8:16 AM CST

Happy New Year! As we sit and pass along New Year greetings this sunny morning, we have quite a bit to report from the past week.

On Tuesday afternoon we went to the Cities...got in late Tuesday night. By 11:30 a.m. on Wednesday morning we had already seen two doctors. First we saw a cardiologist at Children's Heart Clinic. We couldn't time it to see both Carson's cardiology & GI docs at the same time, so we saw another cardiologist within the same practice as Dr. Baker. After a check up and an echo--all looks and sounds great with Carson's heart! We don't have to come back for ONE YEAR! WOW!

Next, we zipped over to Ronald McDonald House and bought an ornament and Daddy thought for some crazy reason penny candy might be enjoyed by someone...BRILLIANT plan, as it came in very handy...

We checked in with the Transplant Center and saw "Auntie" Marisa (Carson had been asking for "M" for over 24 hours) and Carly's Gramdma. Soon we saw Carly and her Mommy too! How fun! During the vitals the penny candy came into play and was an essential step in keeping a 4 year-old happy. Some parents--candy at 11:00 a.m.! Shortly we saw Dr. Sharp. He was very pleased with how well Carson was doing...we can discontinue the actigall and we're going to start a slow wean of his Prograf. We're a bit skeptical he will ever be off of it, but if we can wean him down some it will boost his immune system AND he can fight the EBV on his own which means maybe we can get him off of valcyte someday! So, now we're down to two meds!!!! WOW!!!!! Our next bit of excitement is that we dont' have to come down for transplant for ONE YEAR! We are elated and have NEVER gone this far with cardiology and GI/transplant checks. Dr. Sharp got a few hugs from Carson, along with a "thank you" and "I love you" (both without any prompting!) and we were off!

We tried to deliver a special gift with Marisa, but Rudes had gone home. Guess our cyber hugs will have to continue! Wish we could have see you all, but so thankful and grateful you got to go home for a bit.

Next, it was off to Mall of America for lunch at the Rainforest Cafe and some rides at Camp Snoopy! Dad loves squeezing into Truckin':

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We met up with another liver family and all of us hung out for a bit that night. After we bid "M" farewell, Daddy & Carson hit the pool.

Thursday brought more swimming, some shopping and the trip home. Very uneventful.

Friday was Carson's 4th Transplant Anniversary. Carson and Daddy started the day by shoveling and making a "Snow Carson" (see picture above). We went on a sleigh ride through a park in Moorhead...it was snowing and so beautiful. Carson loved the horses.

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We had Grammy, Chris & Hilary over for a special supper with a menu designed by Carson (think chicken tenders, french fries & lefse served on china). We also had cake. We said extra special prayers for Carson's donor family and his little angel watching from up above. We pray that the last four years have brought some healing. We lit the special candle and said more prayers...

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We ended the evening watching a new Pooh DVD, snuggled in to Mom & Dad's bed. Not sure who fell asleep first, but we snuggled together all night. :-)

Yesterday was very laid back...we continued our tradition of brining a meal to the local Ronald McDonald House. We played a family game last night and were all sleeping well before midnight.

We are so thrilled for the wonderful appointments Carson had this past week. We are amazed at just how well he is doing 4 years after his day of rebirth. It is so hard to believe this is the same child. It is hard to believe he had open heart surgery just 11 months ago and is now doing hopscotch downstairs! We continue to have so much to be thankful for and pray that 2006 will be a wonderful and healthy year.

Pray for Peace & God's Blessings to You and Your Family this New Year!

Love, Carson, Daddy, Mommy, & Sweet Pea

Sunday, December 25, 2005 5:06 PM CST

Merry Christmas!

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We've had a low-key Christmas. It's been a busy few weeks leading up to this though. The semester wrapped up for Daddy & Mommy. Carson has had labs (which look outstanding) and an ultrasound (which also looked great) in prep for his annual transplant check-up. Carson had his very first Sunday School program, which was very special. Although at times he had his own style of liturgical interpretive dancing, he had a great time. Very different story than where we were four years ago, fighting for his life.

This is a pic of Carson close to his personal worst. It was shortly after this that his kidneys failed and he ended up on dialysis. He was just barely hanging on.

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Fast-forward four years and we're concentrating on fairly normal stuff. Lab draws, meds, specialist appts. will always be a part of life...but we seem to have found a groove. There are so many liver (and other transplant) kids we've learned about in the past 4 1/2 years--some doing great and some have struggled so much. We're so thankful for how wonderfully Carson has done.

Carson and Daddy made a trip up to Swan River for a few days last week. They had a wonderful time and Carson was so excited to see his cousins. Carson went ice skating for the first time (and now that he has a set of hockey skates we'll be doing more). It was a wonderful trip and they both had a great time.

Mommy stayed back and worked and rested. We celebrated Christmas with Uncle Chris & Hilary on Thursday night before they headed to Wisconsin. Last night was fairly quiet with Papa Chip & Grammy joining us and a visit from Great Grandma and Great Uncle John.

Carson has really enjoyed Christmas this year--he was certainly a good boy! His 'biggest' gift couldn't go under the tree and he won't get to hold it until August 2006 (about the 11th). We think it'll be worth the wait!

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We had an ultrasound on December 16...

Sweet Pea (our name for now) is a little over 7 weeks. We got to see a heartbeat, which was incredible. With much relief we started to share our news. We're praying and hoping for an uneventful pregnancy (Carson provided 9 months of vomiting for Mommy...very delightful, but worth every bit!).

So, that's our big news! We're very excited. :-) If you sign to Carson "Where's baby?" He'll sign back "Mom's tummy". Last night when he was telling me goodnight (and he was so exhausted from all of the excitement) he told me good night and then signed "Good night, Baby" and patted my tummy. Brought a lump to my throat and tears to my eyes. We have a feeling there will be many more moments like that!

Peace to you and yours. A Blessed and Very Merry Christmas to you.

Love, Carson, Daddy, Mommy & Sweet Pea

Saturday, December 24, 2005 12:40 PM CST

Merry Christmas!

We'll have a big update tomorrow...until then we wish you and your family a very Merry Christmas! Peace!

Love, Carson, Daddy & Mommy

Thursday, November 24, 2005 6:23 AM CST

Greetings and Happy Thanksgiving!

We have so much to be thankful for this Thanksgiving...Carson is our miracle and we're thankful his health continues to be stable. Looking at him now, it's hard to believe he had an open heart surgery earlier this year! We're thankful for the great medical team locally and at both hospitals in Minneapolis. We're thankful for the love and support of family and friends. We're thankful for Carson's precious donor family--their decision changed our lives forever--what amazing people! We're thankful for the wonderful respite care givers Carson has--they love him so much! We're thankful for the outstanding teachers that work with him at pre-school. We are so blessed and have so much to be thankful for.

Carson's has had a good fall...pre-school is going well. If he had his way I think he would write words and numbers all day (oh, and cut and tape them everywhere too--our home is evidence of this). He is working so hard in speech therapy and his vocalizations are really coming along.

Swimming lessons are going well...we are thankful for the one-on-one time with his lessons. We plan to continue them for spring semester and Daddy and Carson are enjoying open swim times each week as well.

Carson was Blue from Blue's Clues for Halloween. He was the cutest little puppy and he thought the whiskers from Mommy's eyeliner were very cool! He had a lot of fun this year and thankfully the candy disappeared quickly (with a little help from Daddy & Mommy).

We tremendously enjoyed a trip to Winnipeg a few weeks ago. We met up with Uncle Ian, Auntie Rhonda and cousins Brody and Hannah. We had a great time. We all went to the Manitoba Children's Museum, a dolphin IMAX, and a lot of play time at the pool and activity center at the hotel. We surprised Carson with going to Disney Live's production of Winnie the Pooh. He was in awe when he realized what was going on--it was such a fun surprise! He got his picture taken with Pooh and a few goodies (including a clip-on Tigger tail--very cute!). He loved the show, particularly when Tigger had everyone stand up and bounce. Carson loved every minute and we loved watching him take it all in.

Daddy is close to wrapping up his three classes this fall--between NDSU & MSCTC. He is gearing up for five classes this spring. He'll be busy! Mommy just finished her written and oral exams and is now a doctoral candidate. "All" that is left is the dissertation. That is going to take a while, but it is a big relief to have the coursework done.

December will be busy. We're looking forward to ordering new hearing aids for Carson. It is hard to believe he has had his current ones for three years. We're looking forward to a lot of holiday baking and preparations for the holidays. We've heard of a few great ideas regarding making Christmas meaningful for kids...first is baking a birthday cake for baby Jesus. Sounds like fun (with the help of Betty Crocker)! We're also focusing on Carson receiving three gifts...just like what Jesus received from the Wise Men. The gifts focus around three themes--one is educational, one is spiritual, and one is fun. We'll also continue our Christmas tradition of Santa bringing new pj's for each of us to snuggle up in on Christmas morning. As we seem to say each year--it's hard to believe Christmas is almost here! We also have GI/transplant and cardiology checkups in December in Minneapolis. As always, we pray for good news. Carson will have his ultrasound locally as well as labs...get ready, Nancy! As usual for his annual checkup with GI there are all sorts of extra labs. He's done so well with labs this year and we're thrilled that they continue to be only every two months.

Later today we're going to Chris & Hilary's home for Thanksgiving. We're excited to meet Hilary's family. (We're also excited we're not hosting Thanksgiving!) Mommy works tomorrow and then we'll work on decorating this weekend. :-)

We want to ask for some extra prayers for special friends. A girl named Haley earned her angel wings on October 1. She was an inspiration to so many and even though we've never met this precious child, we feel like we know her and her family so well through our liver support network. Our hearts ache for her family. Please keep them in your prayers. Haley's journey is detailed on a website, but I haven't asked her family permission to post here, so contact me if interested in learning more about this special family.

A little boy named Dawson also needs your prayers. He had a kidney transplant when he was little (a kidney from his wonderful Mom, Tesa). Dawson developed PTLD (lymphoma) from active EBV. This hits close to home for us as EBV is what Carson has been battling for 3 1/2 years. Dawson now needs another kidney. His family has been staying at the Ronald McDonald house for months as he is on dialysis. Several donors have been screened, but none yet a match. Wouldn't a wonderful miracle this holiday season for this family be a kidney? If you are type O blood, consider the screening process. Since I (Mommy) am Carson's "liver backup" I am not an option. We certainly hope I would never need to donate to Carson, but need to have it as an option. The transplant center has told me two organ living donations would be too risky. Please lift this family up in prayer and if interested in Dawson's Journey or to learn more about the screening process check out http://www.caringbridge.org/mn/dawsonrude/.

All of the best to you and your family this holiday season.

Love, Carson, Daddy & Mommy

Thursday, November 24, 2005 6:23 AM CST

Sunday, September 18, 2005 8:12 PM CDT

Greetings! How can it be almost 4 months since we last updated? It has been a wonderful and busy summer. We'll update on a few of those things...

The summer began with tending to our garden...unfortunately most of it got flooded out in June. We are enjoying the tomatoes, but that is about all that made it.

Carson had a blast in horse therapy this summer. The first session was not great--Carson cried through most of it. Early in the next session he retrieved a squirt gun from a mailbox in the horse arena and it was all giggles and smiles from that point onward. He would get so excited when he knew it was horse therapy time. Can't wait for next summer!

Carson had several session of swimming lessons this summer and is quite the little fish. He does miss out on a lot with his hearing loss, so we've signed him up for a semester of private lessons. If he likes it, we'll probably go spring semester as well. It's great one-on-one time with a swim instructor and he picks up so much more. Since non-contact sports are the way to go for Carson, swimming seems to be a great activity!

Daddy and Carson enjoyed a lot of bike rides this summer as well as many trips to a few parks. I was busy with my last class and work, but would meet up pretty often with my two favorite boys. Daddy was busy teaching as well at NDSU and MSCTC.

We travelled to the Williston area twice in July--once over the 4th of July weekend (Carson caught his first fish!) and again a few weeks later for the 25th anniversary of the church that Travis and I were married in. The pastor that baptized me and the pastor that confirmed me were both there, which was a lot of fun. Carson was also able to meet many of the western ND people that have prayed for him, which was very special.

We enjoyed our trip to Swan River in August for a family reunion. Carson got to meet many relatives and had a great time with cousins Brody and Hannah. The weekend was filled with fun as well as relaxation. The weekend flew by and before we knew it we were heading back home.

We went camping two weekends and Carson thought sleeping in a tent was a great adventure. Much to my delight he enjoys the delicacy of roasted marshmallows over a campfire!

We had a wonderful time with our houseguest in August--my Grandma. Carson got to know "Great Grandma" very well and we loved doting on her as she recovered from a cancer biopsy. Carson still often asks where she is and when she will be here again.

Carson started pre-school a few weeks ago and loves it. He adores riding the bus and the adventures of a new classroom. We hope it is a great year for him.

Carson started Sunday School today, which he also loved. He enjoys music in our church so much and was excited that music is a part of Sunday School. Both Travis and I help in his classroom, as we need to sign to him. Will be a lot of fun as we learn new signs.

We have a few family updates--we just found out that Derwin and Dana are expecting! We're very excited to meet a new little cousin next summer! :-) Chris and Hilary have moved to Fargo, as Chris got a new position within John Deere Corporate. They are just getting settled and it will be fun having them so close.

On a medical front, Carson's labs are outstanding. We were thrilled to learn a few weeks ago that his EBV level is so low that they currently do not consider that he has the virus. We are thrilled, as Carson has been EBV positive since May 2002 and it has been such a stressor. We will continue to watch his levels through labs. Labs are only every 2 months now, which is also a tremendous treat. At labs the end of August, Carson didn't cry. It broke our hearts that he's to the point of just knowing it needs to be done. Such a brave guy!

We're so thankful that Carson is doing so well medically. His energy is endless, which is amazing.

God's Blessings to each of you!

Peace,
Daddy, Mommy and Carson

Monday, May 23, 2005 6:05 AM CDT

Greetings,

The past month has been busy. First, we officially have a four year old in our home! :-) Carson's birthday party was a lot of fun and we enjoyed seeing family and friends.

We have been hit with a very pesky virus this past month. Carson and Mommy had a bad cough and a lot of sinus "crud". Daddy had aches. The past week or so has been better and hopefully with Spring weather here the viral bugs are gone.

We just returned from a cardiology check-up in the Cities on Friday. Dr. Baker was very impressed with Carson's progress. Carson had an EKG and then Dr. Baker listened to him. He sounded good! (So no need for an echo or chest x-ray.) We don't have to go back to Dr. Baker until December! Next, Carson proceeded to give Dr. Baker a check-up, listening to Dr. Baker's heart, chest, and arm. Carson signed that Dr. Baker was "okay", to which Dr. Baker replied that he was very relieved. :-)

We celebrated our very short but wonderful appointment with lunch at Rainforest Cafe and an afternoon at Camp Snoopy. Carson also enjoyed a lot of time in the pool at the hotel. We also got to see Marisa on Friday and Saturday. On Saturday we were able to attend the American Liver Foundation picnic and see some liver buddies.

Carson has two weeks of swimming lessons in June, along with participating in a horse therapy program twice a week. He is going to love both. We're hoping to get our garden in next weekend--Carson will be enjoy that as well.

We had Carson's 4 year pictures taken last week--check out the photo album. He's really grown this past year.

That's all from here. Enjoy the wonderful weather. Take care and God Bless!
Love, Carson, Daddy and Mommy

Wednesday, April 27, 2005 6:21 PM CDT

Yes, it's been a long time since our last update. Things are going fairly well. Carson likes to give us a little "blip" on the radar screen every now and then though...more about that later.

First, Carson is overall doing awesome. He can run, hop and do anything and everything that he could pre-heart surgery. No more restrictions, which is nice now that it is spring (although we had a few flakes of snow today...not crazy about THAT!). He is THRILLED to have the 'okay' to hop again, as he is no longer 'Carson', he is now "Tigger". This kid is crazy about Pooh and the whole gang and the other night we were playing sign games and I would ask "My name is what?" and he'd sign "M-O-M...Mom". When I asked him what his name was, he signed (with a twinkle in his eyes and smirk on his face) "T-I-G-G-E-R". Then he proceeded to bounce everywhere. It was so funny. I guess we'll take a cue from the artist Prince and refer to Carson as "The kid formerly known as Carson". :-)

His signing is incredibly and we can hardly keep up to him. He knows so many signs (we're guessing 600-700+...hard to keep count) and loves to fingerspell things. It's to the point that we're often signing "Sign again, slow". So far he is tolerating us quite well...

Mommy had a fun week in New York City at the end of March...saw lots of sites, went to a wonderful conference and fun time with one of my younger brothers. I really missed my boys though!

Daddy has been busy with teaching and is really enjoying it. He is excited for warmer weather as he and Carson take a lot of long bike rides (with Carson in the bike buggy).

Carson decided to give us a scare a few weeks ago. We ended up in the ER twice within a few hours and then spent 5 hours at the Dr.'s office after that. Long story VERY short...he couldn't pee. Now, since I still would like my son to talk to me when he is 16 years old, I won't go into graphic details here. :-) After 4 caths (3 attempts, 4th was successful) and 2 pokes for an IV we got home at 6:00 a.m. one morning after all night in the ER. Thankfully, all is well in that department now.

Then, this past Saturday he was running a fever. We suspected an ear infection, so off we went again. Ears looked great, so of course, time for labs and cath for urine (he was asleep and couldn't get him to think about peeing in a cup). All tests came back fine so we think it was a viral bug. He's over that now as well.

He had labs last Wednesday and they were perfect, so we are very thankful for that. Poor kid though--in the past 2 weeks he's had 5 caths and 5 pokes for blood. He takes it fairly well in stride though (better than mom or dad and we're not getting poked or prodded).

Tomorrow is Carson's 4th birthday. We really can't believe it. Where's our baby gone? He's not even a toddler anymore--he's a little boy. Sigh. He is doing so well and we can't believe just how far he's come. We are so thankful for all that God has given us with sending Carson to us to be our son. We are such lucky parents! We can't imagine life without him and his miracle journey.

Carson's birthday party is this weekend. Of course, Winnie the Pooh cake and decorations are in order. All of the grandparents will be here along with other friends and family. Should be a fun time and hopefully the weather will cooperate so we can be outside.

We recently got to see the picture of Carson's donor. He was a beautiful child. It's so hard to know that he is gone, even though we had never met him. Carson is honoring this little angel by living and doing all of the things he loves to do each and every day. We have so much respect and honor for our donor family as well. We still don't know how we'd ever thank them. Hopefully our letters and the pictures of Carson show a fraction of our gratitude.

With that, we'll sign off. Hope all is well with each of you. Happy Spring and God Bless.

Love, Tigger (a.k.a. Carson), Daddy & Mommy

Monday, March 14, 2005 6:27 AM CST

It's been a bit since our last update. Quite a bit to update on. First, Carson is doing AWESOME! I think he has forgotten that he had open heart surgery about 6 weeks ago (okay, don't think he has forgotten, but I do think he has forgotten the fact that he needs to take it easy...he is unstoppable!!!)

He was taken off of Lasix last week, so we're now back to actigall, prograf and valcyte. He has another 2-3 weeks of taking it easy and then he can start to resume "normal activities". By then he'll be 8 weeks out and that will have given his sternum a good chance to heal well.

Carson had labs a few weeks ago and they looked super! We're hoping we can go to our plan of labs every two months now. We've never been that far in between labs, so this will be wonderful...especially for Carson.

He starts back to pre-school today. I'm sure he will be VERY excited about that. We didn't tell him last night, as I'm sure he would have slept by the front door. Daddy is going with him to pre-school and will stay the whole time. If all goes well, Carson will stay on his own tomorrow. Daddy will certainly miss his time with Carson every morning.

Tomorrow is a big day at our house...Carson is getting bunk beds. It's an early birthday present. We spent a lot of the weekend cleaning out his room and getting things ready. Purchased bedding, featuring, guess who . . . Pooh Bear, of course! He is going to be so excited. :-)

Last weekend we met a special prayer warrior of Carson's--his name is Alan. Carson was happy to show off some of his sign skills and thought Alan's laptop was VERY cool. It was a very special time and we're so thankful that we got to finally meet Alan and some of his family.

Speaking of computers, Carson loves computer time. He can turn on the computer, the monitor, put in his favorite CD's (either an Elmo or Pooh game) and work the mouse quite well. Doesn't need our help, and gets a little miffed that we want to hang around just to make sure that nothing gets broken. His computer skills makes Mom and Dad feel a little old since when we were four years old the only kind of mouse we knew was the kind you didn't want to run into!

Our big news is that we have learned a lot about our donor family the last few weeks. For the past three plus years we have know approximate age and the state our donor was from. We sent our donor family (through our and their organ procurement organization--an OPO) a big package of stuff in early December--letter, mini-scrapbook, a few things from the Transplant Games, etc. Their OPO took pictures and is featuring some of the stuff, along with Carson and his donor's story & their pictures in a newsletter that is set to come out in about a month.

Through it all, we have found out the gender and name of Carson's donor. We know that the grandparents have had legal custody of their daughter's children through all of this, so we can't even begin to imagine all that they have had to deal with. They are working on a letter to us and the writer of the newsletter story told us last week that they do want to meet us someday! WOW! This has been very exciting, but certainly overwhelming. Out of respect for our angel donor and precious donor family we don't want to post name, gender, etc. information here; hope you all can understand!

This week is spring break. So, Trav has a break from teaching courses and I have a break before my next course begins next week. On a personal note, I have 2 classes left until I'm done with my Ph.D. coursework--I am SO excited! Then dissertation time...I'm counting on Carson to help out with that...his computer skills should come in very handy.

I head to New York City for a conference next week. Will be gone a week, as I am adding some extra time in to spend with my brother, Corey. I am really going to miss my boys a lot and am sad that I'll miss Easter with them. As fun as the trip will be, I'll certainly be looking forward to coming home!

That's all for now. Take care and God Bless!

Love, Carson, Daddy & Mommy

Wednesday, February 23, 2005 7:30 AM CST

Good morning!

Great news--Carson had a super check-up yesterday with Dr. Baker. Carson had an x-ray and echo (once again giggled through the echo thanks to a Pooh Bear video). Carson will stay on Lasix for the next two weeks then he is done with it. Hopefully then we can get back into potty mode. It's been hard for him to think about potty-ing with Lasix in his system! Some nurses like to call Lasix "Vitamin Pee"!!!

Dr. Baker was very pleased with Carson's progress. His incision looks fantastic. We'll go back to see Dr. Baker in late April. About another 5 weeks of really taking it easy and then we'll go from there. Takes us to about the end of March. We're going to talk to Carson's teachers today about starting some of his therapy at home. Right now we're worried about all of the flu, colds and "crud" that is going around, so not in a real big rush to send him back to pre-school right now.

We met up with Marisa at the Minnesota Zoo on Monday and we all had a great time. Although not intentionally planned, we were able to watch the dolphin feeding time. Carson loved the flips and jumps they did. Lots of giggles. He enjoyed the baby tigers as well, although I think he wanted them to play rather than take a nap. Carson did a lot of walking on Monday at the zoo, with occasional rests in the stroller. He did wonderfully and the exercise and fresh air were good for him. He has hardly been out in the last 3 weeks so the outing was good.

Carson is off of Tylenol and doing very well without it. What a trooper!

We made a photo collage of some of the pictures of Carson's sugery--click on photo album at the top to check it out. The one of him and the Doctor stuff is the night before surgery, everything else is post-surgery. These pictures are all a few weeks old already, so he is even more spunky looking now! :-)

That's all from here. We're pretty tired after this trip and happy to be staying home for a while. (Okay, Daddy and Mommy are tired, Carson took a long nap on the way home yesterday...). Thanks again for all of the special thoughts and prayers for our little guy!

Take care,
Carson, Daddy & Mommy

Sunday, February 20, 2005 1:24 PM CST

Carson is recovering so well! All of the steri-strips have fallen off of his incision and it looks wonderful! He is close to being back to his silly self and we've really seen his sense of humor return the last few days. Such a little goof ball.

To celebrate his awesome recovery we went to Pooh's Heffalump Movie yesterday. This was Carson's first "movie theater" movie and he was VERY excited. He had a great time and loved the movie. Went to eat afterwards and we could see just how much this tuckered him out. He fell asleep with his chin resting on the table with only a few bites of chicken strips in his tummy.

Back to the Cities tomorrow. Carson has a check up with Dr. Baker on Tuesday morning. Then back to Moorhead as both Mommy and Daddy have class. Dad has to teach and Mom gets to be a student!

Carson is wanting to get out a bit more. He's had only a few outings since we've been home. Heard there is lots of "crud" going around so not wanting to get him out in that. Won't be long and it'll be March. Maybe then some of the flu, coughs and colds going around will settle down. We are so thankful that all three of us were able to get flu shots last fall.

That's about all from here. Will update after his check-up.

Love, Carson, Daddy & Mommy

Thursday, February 10, 2005 11:01 AM CST

WE'RE BACK HOME IN MOORHEAD!

We had a pretty relaxing day on Tuesday. Carson enjoyed the playroom at RMH quite a bit. Yesterday we saw Dr. Baker and Carson had a chest x-ray and echo. No fluid around his heart, which is good. The x-ray showed his heart was slightly enlarged, but that isn't surprising. We were amazed that Carson has only lost 1 pound since surgery. He is back to normal for eating, which is good. Lots of good and nutritious foods for him. Thankfully he is such a good eater!

The echo showed a small--very mild--leak around one of the patches. Will be something Dr. Baker watches. We will pray that it stays the same and does not worsen over time.

Dr. Baker gave us the "green light" that we could go home. :-) We were thrilled. Dr. Baker does want to see Carson again in 2 weeks, so we've scheduled an appointment for the 22.

After our good news, we went back to RMH to pack up and get some lunch. We got on the road shortly after 1:00 and arrived home a little after 5:00. Stopped for supper in Fergus Falls so it was one less thing to worry about when we got home. Carson was all smiles as he came into the house. He wanted to go downstairs right away and got settled into the recliner. Pretty comfy place to sit, so can't blame him.

Carson is getting around pretty well. He lets us know when he needs to be lifted up or down or when he needs some help with something. His neck is very stiff and we have noticed he is tenderly moving it. Still can't believe that he is only a week and two days after surgery and here we are snuggling at home!

Carson was very happy to see our two kitties--Sylvester and Tigger. Ironically, I think they are happy to see him as well (they are normally scared of him). He'll be chasing them before we know it.

So, more unpacking today, digging through the mail and snuggles and cuddles with Carson in between everything. Thanks again for all of the prayers. Carson's recovery is going so well, which we are so thankful for.

Will update in a few days.

Mommy

Monday, February 7, 2005 7:07 PM CST

Wonderful news--Carson is resting comfortably at RMH!!! Dr. Baker gave us the go-ahead this morning and it took a few hours to get stuff in place as he was in and out of the OR monitoring a surgery. That was okay with us. We were planning for about two weeks in the hospital and can't believe that Carson is out on post-op day 6!!! The sweetest thing was when he recognized Dr. Baker and signed "Doctor" (didn't do "Doctor Heart" like we have been working on, but Carson was watching TV). Later in the playroom, he took several steps into Dr. Baker's arms and gave Dr. Baker a hug. Very special!

Carson did have a rough night last night. He needed some oral potassium last night and it really upset his stomach. Lots of stomach cramps and Daddy said he whined from about 10:30 p.m. to 4:00 a.m. If we can feed him a potassium-rich diet, we shouldn't need to to the med anymore. His Lasix depletes the potassium, so have to keep everything in balance. Lasix is the only new med he was discharged with, so we feel very fortunate about that. :-)

He was a bit scared as we started packing up. Was even more unsure when we were ready to roll out the door in the little red wagon. He cried a bit in the van. Poor guy. Tried to explain to him where we were going. I'm sure he was thinking "the last place you took me was the hospital, and look what happened...so where are we going now?!?!" Within a few minutes he calmed down. He was all smiles as he came into RMH in Daddy's arms. He is happy to be here; it's a familiar place for him. He was pretty tired and wanted to take a nap shortly after we got here. No problem. After a bit of a doze, he signed "play, down". He wanted to go down to the playroom (another mini Toys-R-Us). He was so excited to get there and had a great time. Took several more steps and sat up a lot. Playing will be good therapy...he doesn't realize he is building up his strength again. We have seen several times that he stops when he gets to his limit. He doesn't push himself too much. Now if only that can remain for then next couple of months! Probably only a few weeks...

He just wanted to come down and play again after supper, but we don't want him to overdo it. So, pulled out a new toy and he is currently building bugs in the room! :-)

We see Dr. Baker in clinic on Wednesday morning. Hopefully will be able to head for home later that day. We are wiped out so hope that Carson is interested in a few naps tomorrow as well as after we return home.

We are still pinching ourselves that all has gone so well. It is so incredible. We are often catching ourselves shaking our heads in wonder at our miracle child. What is so amazing is feeling Carson's chest. Prior to surgery he had an "impressive" murmur, as it was often termed. You could easily feel it whooshing if you put your hand anywhere on his chest--almost felt like he had fluid in his lungs or some yucky respiratory thing. It was quite the murmur. Now, there is next to nothing. I've listened a few times and have heard a little something; guess there is a tiny murmur, but it's hard for us to discern. I've lightly put my hand on his chest and now I only feel the "lub dub" of his sweet little heart beating. It's so amazing.

If tomorrow is a quiet day, we won't update. Hopefully no big excitement. If we head home on Wednesday, will try to update but depends on what time we get home and how long it takes to settle Carson in. Will update from home as soon as we can.

Thanks again for all of the love, thoughts and prayers!

Mommy

Sunday, February 6, 2005 9:25 PM CST

No news has been good news!

With Carson on the floor, we have decided to have either Daddy or Mommy with him at all times. As much as he loves all of his grandparents, he got very angry if either of us were away from him. So, Daddy is taking the night shifts and Mommy the day shifts--just like in transplant days! We have a few hours of overlap for each shift. Both Friday and Saturday nights Carson slept very well. Certainly Daddy's snuggles were a big part of that.

We've had wonderful visitors these couple of days and it has been fun to see everyone--thanks for stopping by! :-)

Today Carson got rid of his heart monitoring equipment. Even though it was mobile, he would get kind of ticked at the fanny pack that was always by him. Oh the things that toddlers can get mad about! Wasn't mad about his aching chest--it was that he was attached to something. His heart rhythms have been "perfect" in the words of the cardiologist on this weekend, so the leads were taken off this afternoon. All that is left is the central line and that is NOT coming out until we are practically walking out the door. No pokes for labs with that in! :-)

Carson was VERY sore yesterday and we got on a system of tylenol every 4 hours. Who can blame him for being sore? A nurse commented that he is very bruised so that would certainly contribute to the soreness as well. Still amazes all of us that tylenol is all he needs. He also threw up once last night and a bit around noon today. Seems to be past that now though. He was a little stiff this morning as well. After a big bit of progress in the GI department this afternoon (oh, he will be furious with his mother in a few years...) he was VERY happy. Tons of giggles and belly laughs. You'd think it would hurt to laugh! Not for this kid.

If Carson would have had his way today, he would have laid in bed all day and watched videos. At one point, I turned the TV off and told him it was broken--hopefully he can forgive me for that lie in years to come! He needed to get up and about! :-) I got a wagon and off we went with Papa Del. Enticed him into my arms with an elevator ride (he got to push the buttons) and we found a fun interactive gizmo on 2nd floor that he was thrilled with. Enough so that when I stood him up out of my lap (I was sitting on the floor) he walked a few steps back to the wagon. He was smiling the whole way!!! He had 3 more bouts of walking tonight and each one we kinda conned him into. Once he walked from my arms to Daddy's arms. He gained a lot of self confidence on those little walks--only 4-7 steps at a time--but it is a HUGE start! In fact, since our first outing this afternoon he has requested wagon rides twice. He loves be-bopping one of his balloons along as he lounges in the wagon. It's so cute. Also this afternoon he was doing huge leg kicks. You'd think that would hurt too...nope! He also giggled through vitals today. Granted he was watching a Pooh video, but he has realized that blood pressure, temp and a listen to the chest doesn't hurt. (Pooh videos have been a huge source of comfort-we can recite three of them almost word for word now).

So, today was a day of big progress. I shed several tears today--tears of happiness and thankfulness for how well Carson is doing. I can't help but think had it been me that I'd still be laying in bed soaking up all of the morphine I could and declaring nurses insane to think that I should be sitting up much less trying to do any more than that! I'd be such a good patient. What I wouldn't have given to have taken his place for all of this though.

Since he's moving around so well we should get out tomorrow. :-) We'll see Dr. Baker on rounds and get the word from there. Likely see Dr. Baker in clinic on Wednesday or Thursday and hopefully home after that. We also found out today that Carson's first GI, Dr. Ferenci, is on for GI rounds starting tomorrow. Haven't seen him in 3 years so we are so excited to see him!

Time for early bed. Carson has kept us hopping the last two days. Today we really saw our Carson back again. He was so silly. He was signing a lot more and was so happy. Very wonderful to see. Will hopefully update with our discharge news tomorrow.

Mommy

Friday, February 4, 2005 3:57 PM CST

What a day!

Got word early this morning that Carson could be transfered to the 7th floor. One glitch--there was no room at the inn! So, we hung around, gave Carson a MAJOR bath, got some new jammies on him and by 1:45 p.m. a private room was ready for him! We are so thankful for the private room for several reasons: 1) since he is immune suppressed (although Dr. Baker promised he would not let Carson room with a kid with any respiratory gunk!) and 2) he has hardly been sleeping. He has had very brief little naps here and there, but nothing substantial. That's what he needs now more than anything.

He got to ride up in a red wagon. At first he was a bit hesitant, but really liked it. Took many loops around the 7th floor before asking to go to bed. Once in bed he snuggled in and slept for an hour! It was so nice to be able to dim everything down and have it pretty dark for him finally.

He is completely off of IV meds, but still has the central line in his neck. We want to keep that until we go home, as it means no pokes for labs. All of his meds are oral now and he, as an independent little boy, gives them all on his own. His only extra med right now is Lasix--a diuretic. Pretty darn good. He occasionally gets tylenol as well. He has not had any narcotic since yesterday morning. Simply amazing.

Our major news...and we don't want to get our hopes too high up...was Dr. Baker talking about discharge. He said that since Carson will be on all oral meds and is doing great, he expected him to be discharged Sunday to early next week. WOO HOO! Dr. Baker wants us to stick around for a few days and then we'd see him in clinic middle of next week and then we could head home. So, home by next weekend sounds VERY do-able! How awesome and amazing.

So, Carson's needs right now include rest and moving to solid foods. He hasn't shown much of an interest yet, but has drank 3 sippy cups of soy milk today. That's a good start. He can eat whatever he wants so hopefully some hospital food tempts him soon. He has been so mellow and despite not being thrilled at the sight of a nurse or doctor, has not been angry, which we thought would be very natural. Who knows, it could come, but now that he is on the floor and not having to be bugged as much, we're not expecting it. He was very excited by the amazing playroom (a mini Toys-R-Us is on each floor!) and his cardiac monitoring is completely mobile so we can go anywhere on 7th floor. Lots of wagon rides in order...

That's today's update. Been a busy day, so sorry for the late update.

Thanks again for all of the prayers for our special son.

Mommy

Thursday, February 3, 2005 7:29 PM CST

An evening update...

Carson has had a great day. I won't go into too much GI detail and he will really roll his eyes at his Mama in his teen years when he reads this. So this part will be brief. :-) Things are moving and after some periods of major discomfort this morning and afternoon, relief arrived. :-)

Carson sat up for over 2 hours non-stop today. He loved it and really did a good job of balancing himself. He finally laid back done (essentially at my insistence, since I was getting a bit worried he would overdo it...Mom's have to worry about SOMETHING!!!) when I gave him his bath. His first post-op bath and he love the sponge bath. Even got a bit of a hair "wipe down". Fell asleep before I could even put lotion on.

More videos and his signing is really picking up. Got to see the ABC's today and he read through some books. Also opened three presents from Cousin Barbara--he loved them and even drew a picture on the chalk board! We'll send one along to you. We'll save the rest for another day...

We are so thankful we went through the presurgery program with Carson as well as had some books that were for kids with heart surgery. He has signed that he had heart surgery and keeps asking if he is okay. Today he spent a bit of time feeling his scar (it looks great by the way--saw it for the first time today; several steri-strips on the incision). He would also ask if he was okay. He did seem comforted when I told him his heart was fixed. Pre-surgery he would sign that "Carson's heart has an owie and doctors will fix it". That's just what they did! He is VERY suspicious of nurses and doctors though. He is a bit more tolerant of his cardiologist, but he has essentially known him since he was 5 weeks old. He will look right at a nurse and if he or she comes close, he'll shut his eyes. It's rather funny and interesting to watch. He's had "white coat phobia" for over three years, so this really isn't anything new.

Well, it's been quite the day of progress. He has had juice and 7-up on and off and a few bites of jello. His maintenance IV has been turned down, so he should get a bit more hungry. Pretty certain we will be moved up to 7th floor sometime tomorrow. We'll keep everyone posted.

Here's to a quiet night of rest for our little miracle! We are beaming with how well he is recovering and know it is due to the countless prayers he is being lifted up in and the gifted care of his doctors and nurses. Thanks again!

Mommy

Thursday, February 3, 2005 10:29 AM CST

Good morning!

Today is offically "downsizing" day! By 7:30 a.m., Carson's two chest tubes were out, as well as the temporary pacemaker wires. Within an hour after that, his catheter was out as well. During the night, his extra IV in his arm was removed. He also lost a bunch of IV continuous meds this morning and his only continuous pump is the maintenance IV. So, all he is down to is the central line in his neck and the 4 leads for his heart monitor. Major difference!

He had some juice this morning as well as some 7-up. Had a popsicle last night and loved it. If his GI system gets moving he can maybe order soft foods off of the lunch menu!

He just sat up for a bit and also cuddled in Mommy's lap for a few minutes. Got some gas going, so that was a good thing! :-) Oh how he'll love to read this in a few years...

Videos are running non-stop and that seems to really distract him. Good thing the hospital has a ton of videos to supplement the ones we brought with.

His right ear is really bothering him and this morning Dr. Baker dug out some yucky wax build up. Hearing aides don't allow for great wax drainage and with all other stuff going on, he might have an ear infection brewing. Hopefully getting the wax out will help and we're going to start some ear drops. Carson is on IV antibiotics for surgery, so hopefully they would take care of any bacterial bugs!

Other very exciting news is that he could be transferred to the floor either later today or else tomorrow!!!!! WOW! We are blown away and he will get more quality rest out of the PICU. He has had some wonderful nurses that will be hard to leave behind, but we're so happy he getting closer to going home.

Thanks again for all of the messages and prayers! :-) This is one very loved little boy. We're so thankful for the progress Carson has made and that our prayers are focused on continued good steps as well as praying for "GI progress". :-)

Mommy

Wednesday, February 2, 2005 4:01 PM CST

Carson is doing AWESOME!!! They are weaning him from his blood pressure medication and so far his blood pressure has remained under the max level. To top it all off, he has done a few more signs and is now comfortably watching a Pooh video (at least when he is not dozing off)! Have had a few smiles, which has been wonderful and he is needing morphine only every couple of hours. His last dose was only 1/2 a dose and he has done well with it. To us adults, that is really amazing, as we're sure we'd be begging for all of the drugs we could get our hands on had we had open heart surgery yesterday. :-) He still would love to sit up, but that isn't in the plan yet.

In a bit he can have some ice chips, then progress to clear liquids. If all keeps going well then maybe by tomorrow he can have some soft food.

So, we are just hanging out right now. All has been stable and we're thankful for all that has gone so smoothly. His recovery is really remarkable. Must have been all of the hopping and running!

Here's to a boring and quiet rest of the afternoon, evening and night! Will update after we see docs in the morning.

Thanks for the messages!

Mommy

Wednesday, February 2, 2005 10:34 AM CST

Carson had a good night. Fairly quiet with some peeks at Grammy and Papa Chip. Carson's nurse was a nurse that cared for him 3 1/2 years ago, so that was neat.

Our exciting news this morning was..........(drumroll, please)--Carson was extubated at 9:05 a.m. :-) He had to be pretty awake and fighting before extubation and he first signed that he wanted a kleenex (he had lots of dried blood and oozing blood around his nose) and he really wanted to get cleaned up. He also got pretty mad and scared and at one point was able to get his hands up to his face (we had to keep them away so he didn't pull any tubes out prematurely) and he signed "cry". It made us cry! He was so much happier after the vent and NG tube came out of his nose and was even happier once his face got washed up. He certainly didn't fight the washcloth--he welcomed it!

After some chapstick on his kissy lips, he was pretty happy.

All was good until all of a sudden his artial line wasn't working. This gives a constant read on his blood pressure and since he is on blood pressure medication, it's important to have the constant read. A PICU doc came in to try to see if it could be saved and it had a kink in it. So for now, they will monitor his BP through a cuff and take checks every 15 minutes. If his pressures stay good, we can likely stick with that. His pressures have been on the high end of what the drs. would like to see, so hopefully he settles down and we can avoid having that reinserted. So pray for good and stable blood pressure for Carson today!

His liver enzymes look super, which is certainly a relief. All other stuff looks good too.

So, if all goes well, we'll just have a quiet day hanging out in the PICU. He'll be taking his evening anti-rejection and anti-viral meds by mouth today, so hopefully all of that goes well!

It is very evident Carson is not pleased to open his eyes and see a nurse and see he is in the hospital. He hasn't really realized that he has other tubes (2 chest tubes, a catheter, a central line in his neck and an extra IV that is not currently being used in his hand). Hopefully the delight of extubation and getting rid of all of the tape on his face will keep him content for a bit. Several people have commented on how strong he is and that he is a fighter (should have seen him kicking this morning). That's okay. We'd rather have him fight a bit than just lay there. Oh, and he has also tried to sit up countless times. Several times last night as well as this morning. What a trooper!

Want to head back to the PICU. He is looking super and hope the blood pressure behaves today!

Mommy

Tuesday, February 1, 2005 7:32 PM CST

What a day! Carson is doing fantastic. Had a little bleeding from the central line in his neck and we watched the surgeon stitch it up--no more bleeding! :-) He commented that he certainly wouldn't let "newbies" to a PICU watch that. We're so thankful that we got to stay with Carson.

He has been pretty sedated today but has had several periods of peeking his eyes open and checking things out. He loves to hold our hands, and gives a squeeze every now and then, which is very precious.

Overall, we are praying for a very boring night! He is oozing a bit of blood from where his NG tube is in his nose (this tube keeps his stomach empty--which is good post-op). He has received a few units of blood, along with some platelets and plasma. Everyone is VERY happy with how well he is doing. The "prayers for pee" must be working as there is no problem in that department! :-) We have been so blessed with outstanding caregivers that really care about Carson. We have had several nurses stop in that took care of Carson 3 1/2 years ago that can't believe how big he's gotten and how wonderful he looks.

Daddy and I will be heading back to RMH shortly to try to rest. We thought about checking into a parent sleep room here but they aren't the comfiest of conditions and thought we would better serve Carson if we were well rested. We are so thankful that the grandparents are pulling night shift duty! THANKS!!!!!

If all looks great tomorrow, two doctors have mentioned extubation tomorrow. We'll wait and see and don't want to get our hopes up too much.

Had a very nice visit with one of the Chaplains earlier. We still can't believe that we got word about a future letter from our donor family today. Once again, God and Carson know "the plan" to keep us assured that all will be fine.

Time to check in on our sweetie. It is so incredible how well he is doing. Thank you so much for the wonderful prayers. Pray for a restful night for Carson and that all labs continue to look great. By the way--his liver labs are super. Will check again in the morning but as one Dr. said "his liver seems happy!" We like the sounds of that!!!

Peace and God's Blessings to you,
Mommy

Tuesday, February 1, 2005 11:45 AM CST

The main aspect of surgery is OVER and in Carson's cardiologist's words "IT WENT GREAT!" Carson is off of the heart bypass machine and is doing well. They are working on closing him up right now. They had to do some restructuring and resecting here and there and he has two new patches...won't go into all of the details as the heart is certainly a complex organ! But Carson is "more streamlined" and this is such good news! He has not had any heart block, so no pacemaker! He will have temporary pacemaker wires (standard in all open heart surgeries). Next 6-12 hours are critical as we watch to make sure his blood pressure remains steady and that he starts to pee (yes, once again, you can pray for pee!). We are thrilled and very excited with Dr. Baker's update. The surgeon will be out to update us shortly then within an hour we should be able to see Carson in the PICU. We've already met his nurse. She remembers him from 3 1/2 years ago and is on until 11 pm tonight. :-)

In other amazing news we heard from LifeSource today. A donor/recipient family coordinator left us a message yesterday. Called her this morning and we learned that Carson's donor family was thrilled with the package we sent through LifeSource in early December. (Pictures, artwork, a transplant games bear, a transplant games medallion, and a letter) The Grandmother has sent via their OPO that she is working on a letter to send to us! We also made a mini-scrapbook of Carson to send to them and the donor family's OPO wants to use part of it in a summer newsletter that they send to 16,000+! Wow! Carson will continue to touch lives across the country and honor the memory of his wonderful angel donor. This is the first we have really heard from them, so this is truly amazing. Of all days to get this news, we are certainly seeing this as a good sign of things to come for the coming weeks.

Will update after we see Carson. Thank you so much for all of the sweet messages! Have to go and wait for the surgeon.

Mommy

Tuesday, February 1, 2005 8:55 AM CST

Good morning,

We feel like the day should be half over, but it is truly just starting. Alarm clock went off at 4:15 a.m. (who knew there was a 4:15 a.m.?!?!) so Carson could have some apple juice before the "cut off" time of 4:30. In the van by 6:10 and into the OR about 7:30. We just got word that they are just starting the surgery (at about 8:50 a.m.). Took a little over an hour just to place the central line, intubate, give him an arterial line, etc. He was amazing this morning and the bravest one out of our group of 8 people. Leave it to Carson! He got some wonderful "I don't care" medicine, which helped too. (Doctors still won't give some of that good stuff to Dad and Mom while we wait.....) :-) Both Daddy and Mommy got to gown up and take Carson back to the OR. We signed "I love you" as he had the mask put on. He did great and didn't even fight it. It took several minutes, and then he was off to sleep. We got to take our masks off for a few seconds to give him kisses and then off we went. He has his Prayer Bunny with him (got him through so much in his first year of life) as well as the blue blanket that has been with him in every OR for major surgery. Very special.

Yesterday went wonderfully. Carson giggled through his EKG (the stickers tickled!) and fell asleep right before his physical with Dr. Baker. He slept through the entire physical. So much for being stressed out by doctors! He was tired and the nap was great for him. Labs went well and then a child family life person showed Carson pictures of kids after heart surgery. We went back to Ronald McDonald House (RMH) after that and met up with Pastor Tim, our pastor. We had some devotions and visited. It was so nice. A quick supper and off to the pre-surgery program here at the hospital. Carson loved playing doctor and enjoyed the tour. He melted the heart of one of the nurses on the tour and she came into work 2 hours early this morning to wish him well and give him a hug and kiss. How amazing is that? After the tour, back to the house where Carson garbed up in his new OR hat, booties, mask, and rubber gloves. Quite the site. Lots of pictures of "Doctor Kitch". A few books and then to bed.

We are so thankful that all Grandparents have safely arrived by yesterday afternoon. Uncle Chris is here today as well.

Dr. Baker was by a bit ago and all was going well. He and Dr. Overman (the surgeon) have visted and Dr. Overman has visited with us as well. Depending on how everything looks, this could take a bit. That's okay--might as well take the time and hope we don't have to head down this path again! Dr. Baker will be giving us updates from the OR.

That is all for now. Thank you so much for the messages and prayers!

Mommy

Saturday, January 29, 2005 10:52 PM CST

*************************************
Sunday, 7:00 a.m.
URGENT PRAYERS NEEDED:

A girl we know had a bleed on her brain last night. She is very likely currently in surgery to try to relive the pressure. She is also waiting for a liver transplant. Please lift her, her family and her medical team up in prayers. We've never met this family, but know each other through a web group. They are an amazing family.
************************************

Greetings,

We're pretty much packed and ready to go. Very busy day today but feel very good about how much we were able to get done. Got word this morning that we will have a room (with sleeping space for 6 adults!) at the Ronald McDonald House. We are so thankful. Grandparents and us will be able to stay there comfortably. A very familiar place for us and that will be a comfort. There is a great computer room there, so won't be a problem doing updates. Also computer access at the hospital. :-)

Carson's energy level is simply amazing. Hopping and jumping all over. Sniffles seem to be gone and there is no stopping this kid! His excellent health will certainly be an aid in the recovery process. It is hard to imagine that he needs sugery. This is his first major surgery of four that he doesn't appear to have anything wrong. The first three it was certainly evident. Makes it harder to comprehend something is wrong, but we certainly want to have the surgery behind us prior to his heart becoming problematic.

We are so extremely thankful for the support in notes, cards, visits and phone calls that we have had. Each has been a huge hug for us and lifts up our spirits. Thank you seems very inadequate for all that people have done to support us. Know that we have been deeply touched by the loving thoughts sent our way.

In case we don't update before (Monday afternoon/evening are busy with check-ups, grandparents arriving and a pre-surgery program) we will be at the hospital at 6:30 a.m. on Tuesday. Carson should head into surgery at 7:30 a.m. We are anticipating a 4-6 hour sugery. Dr. Baker (Carson's cardiologist) will be giving us updates from the OR. We are expecting about a week in the PICU and a week on the floor. Each is "give or take" a few days, certainly depending on Mr. Carson's recovery.

Thank you so much for lifting us up in prayer. Please pray especially for Carson and his talented medical team. Also pray that we--parents and grandparents--all stay healthy during our trip. God will give us the strength we need to get through the coming days, weeks and months of surgery, recovery and healing.

Take care and God Bless,
Carson, Daddy & Mommy

Monday, January 24, 2005 6:52 PM CST

Thursday morning update:
Carson is feeling MUCH better. No sniffles and only a few coughs yesterday. He seems to have gotten past this! Joy! Thank you for the prayers.

Monday evening update:
Prayers needed:

Please lift Carson up in prayer. He has had the sniffles, which developed into a small cold. They are getting better now, but they are still hanging on. He also has a cough, which is better now than the weekend, but it needs to clear up. If not better before surgery, we will have to postpone. We'll see where he's at tomorrow and consult with doctors from there. We still have a week to go, so hopefully this crud clears up! Daddy and Mommy have felt a bit run down too, but tonight are feeling better. Mommy donates blood and platelets for Carson's surgery on Wednesday so she needs to be feeling good...gosh, we all need to feel good! :-) It's been early to bed, vitamin popping, purell and handwashing fun at our house!!! (Guess the only thing different than normal is early to bed...)

We ordered some wonderful books about heart surgery that are geared for kids. Carson is very intrigued by the pictures (they have all of the medical stuff in them) and knows that "Carson's heart has an owie". It's hard to explain that you have organs in your body to a nearly 4 year old. But he seems to relate to the little boy in the book who also has "an owie in his heart" and now he is better. They have been wonderful books to try to help him prepare for surgery.

That's all for tonight! Peace.

Love, Carson, Daddy and Mommy

Friday, January 7, 2005 6:00 PM CST

BIG UPDATE:

We heard from Carson's awesome cardiologist yesterday--he presented Carson's case to the cardiac team and they want surgery within the next three months. We looked at dates that would work for us and what is ideal for Carson (okay, besides not needing surgery) and we just scheduled surgery this morning for February 1 at 7:30 a.m. Overall, they feel good about fixing things, just a matter of if they are fixed for good or if they'll have to go in again. There are some areas presenting some concern, along with the typical surgical risks as well. Again, the risk for heartblock is high and if he exprienced it, he'd have a pacemaker. Guess more hardware and stuff to add to the Medic Alert bracelet....

We feel strongly he'll be fine but we are still dreading this. We hate the thought of another surgery. We hate the thought of two weeks or more in the hospital, which is selfish, since it's Carson that will be in, not us. More than anything we hate the thought of his look while we're in the PICU for about a week--that look of fear of "get me out of here, Mom and Dad", all of the tubes, hoping and praying he won't pull anything out, and that awful, helpless feeling that there is nothing we can do for him...okay, guess we can do something: we'll be praying and be right by his side. The upshot is that since he is so proficient in sign language, we can still "talk" while he is intubated. We're working on about 20 new signs for his surgery. :-) Anyone know the signs for chest tube or ventilator?!?

All Grandparents are gearing up to be with us on the 1st. As parents, we made a promise to Carson before his very first sugery on June 19, 2001 that we would always make sure he was never alone in the hospital. With the exception of a minor bathroom break or two, we have held true to that promise. Carson hasn't been overnight in the hospital for nearly 3 years (3 years in February 2001!) so we are dealing with some different stuff now! We are so grateful that the Grandparents will be there, not only for Carson, but for us as well! Thanks, ya'll!!!

We also know that on February 1st, Carson will be lifted up in prayer by many, many people. For that, we are also very grateful and that is what we need most right now. We also really appreciate the messages that are left in the guestbook--at all times we love them, but we will be lifted up by them when we're in the "Hospital Hilton". Plus, a great keepsake for Carson in the years to come. So please, sign in!

That's all for today. Take care. Hug a loved one one more time and peace.
Love, Carson, Daddy & Mommy

Thursday, December 30, 2004 4:26 PM CST

Happy Holidays! We had a wonderful Christmas--Santa was very good to all of us this year!

It's been quite the week--Sunday was a day of worry as we waited to hear news of Uncle Derwin and Auntie Dana, who live and teach in Sri Lanka. Thankfully, they live on the west side of the island and they nor their home were not affected. We got word late Sunday night that they were okay. Wonderful news!!! As we watch the events unfold, we continue to pray for them as well as the millions and millions that are now homeless and the countless others that have been affected by the death and disease of this disaster.

We just got back from the Cities for doctor appointments. We are celebrating Carson's third transplant anniversary today (we also call it his second birthday...) This morning at the Ronald McDonald House I watched Carson for a while as he slept, so peaceful and cozy. I cried as I thought about where we were three years ago...the tears were of pain and of joy. I simply can't believe how many times we almost lost him and then, we learned there was a potential donor from across the country. Our hearts ached as we thought of the young donor and their family. At the same time, we had glimmers of hope for our child. Could we even imagine taking him home again after nearly 2 1/2 months in the hospital already?

That day, three years ago, was truly the second birthday for our son. He was born again and his tiny little body welcomed his Gift of Life and began to heal. We will never forget watching his skin turn from yellow/orange/green to seeing PINK in his fingers, toes and everywhere else. What a miracle!!!

Today we are so thankful for how well Carson has done and our thoughts and prayers are directed to his donor family. May the time of the last three years have given them some comfort and healing.

Yesterday was "appointment day" for Carson with GI and Cardiology. His GI is thrilled with how well he is doing and we can move to labs every TWO MONTHS!!!!!!!!! YIPPEE!!!!!! We are so happy! No other changes for meds or anything else. We were very happy to hear that Dr. Sharp will be following Carson for the next year (Dr. Sharp is heading into retirement). He is so wonderful and called Carson "Sprinter" after we gave Dr. Sharp a pic of Carson at the Transplant Games.

Next we went to see Carson's cardiologist, Dr. Baker. The echo revealed that the narrowing in Carson's heart is increasing. They can measure it by the velocity of the blood flow that is picked up by echo. Basically, the velocity is increasing. So, his doc is presenting Carson's case in January (third week) to the rest of the cardio team and we'll go from there. Surgery appears to be very much sooner than later, unless someone from the team thinks it is better to wait. We'll know more after the meeting. Carson's prognosis is excellent, although he is at higher risk for "heart block" since they he's already had one open heart surgery. If heart block occurred, he'd have a permanent pacemaker. Not the best of scenarios, but certainly something fairly easy to deal with if needed. He'd be in the PICU a week, and another week or so on the floor. So, we'll need lots of ideas on entertaining a nearly 4 year old in the hospital!!! We're already planning our "Rubbermaid containers of fun"! If you have any ideas, let us know!

We were so proud of Carson yesterday--after 2 check-ups, NPO (no food or drink) for 11 hours, an abdominal ultrasound (took about an hour and a half) and a heart echo (took about 45 minutes) he was still in happy spirits. He was so good and gave everyone (nurses, techs, doctors...) hugs and told them thank you. As long as he got to eat chicken strips last night, he was content. What a kid! We had to chuckle as during the heart echo he polished off a big container of Cheerios, a box of Hot Tamales (he loves them!) and a sucker. Quite the diet, but hey, when you have a day like he had, what the heck! As he snacked he watched a Blue's Clues video. :-)

We had a wonderful time Tuesday evening with a few liver families and folks--Marisa, Sami and Kyle (and parents!!!), and a few more as well....got to see Carly and her mom yesterday for just a few seconds in clinic. Also saw our good buddy Andrew and family as we were heading into clinic. You look great, Andrew!!!

We have a fun family evening planned. Homemade supper, popcorn and movies (Elmo, Blue's Clue, Nemo...you get the idea....guess who gets to pick the videos). We'll also be lighting Carson's Anniversary Candle that we light each year on December 30 to celebrate his life and honor the memory of his angel watching from above.

We wish you all a wonderful 2005! Peace and God Bless!

Love, Carson, Daddy & Mommy

Saturday, December 18, 2004 6:38 AM CST

Holiday greetings! Hard to believe that we haven't updated for over two months. Sorry to all still checking in on us!

All has been great here. Carson is doing wonderfully. He LOVES school and now rides the little yellow bus to and from school all four days. We are working on why there is no school Friday through Sunday. He would go every day if he could.

We got an FM system this fall that works with Carson’s hearing aids and it has been wonderful! Such a difference. We can wear a microphone and it is fed directly into his aid. We are so thankful for technology.

Carson's labs have been pretty good. His EBV is once again bouncing around. We have check-ups in December at Fairview and Children's Heart Clinic so will see what the plan of action is with EBV. We are anxious for his heart check-up most of all. Just want to see if we can wait another six months before open heart surgery or not. Part of us would just like to get it over with and another part of us would like to push it as long as we can. Hard to explain. Biggest challenge will be entertaining someone in the hospital. We are used to hospital time, but not with a little boy! Will keep everyone posted.

Carson is having a wonderful time with Christmas. He has recently taken to carrying baby Jesus from the nativity scene around very carefully. He loves to gently place Him back in the manger. He thinks the countdown calendar we have is great and loves to turn on the tree lights with a flick of a switch each night. Thankfully, he does not realize that there should be presents under the tree. They have yet to be wrapped but will not be under the tree until the 24th! Too much temptation for busy fingers.

Big news from our house is that Carson is pretty well potty trained in the "peeing" department. (He will love to read this as a teenager!) We are thrilled and it was pretty effortless. Still working on the 'other' department.

We are all looking forward to spending a lot of time together the next few weeks. Daddy and Mommy both finished up with their courses this past week. Daddy got his grades all done for his class sections and Mommy got her papers and presentations in. Great feeling for both of us. Classes do not start again until January 10 so we are looking forward to evenings together.

We had a baking extravaganza last weekend and will likely to even more this weekend. Carson has taken the positions of "Chief Ingredient Dumper Inner" (into the mixer), "Chief Stirrer", "Chief Cookie Sprinkler" and of course "Chief Taste Tester". He is well qualified for all positions.

Well, that is all from our house! We are amazed that Carson's third transplant anniversary is in just a few short weeks. We are so thankful for our miracle boy and think of our donor family so often. We hope they have found some comfort over the past three years.

Merry Christmas to all! Have a Blessed holiday. Peace and God Bless!
Love, Carson, Daddy and Mommy

Thursday, October 14, 2004 5:35 PM CDT

An open letter to all my marathon supporters:

I would like to take this opportunity to thank all of my supporters. Running the Twin Cities Marathon was quite possibly the most physically grueling events I have participated in but I am proud to announce that I finished the race.

The first 18 miles went pretty well. It was at mile 21.5 that things took a turn for the worse. My iliotibial band in my left leg tightened up like a snare drum and even walking was painful. I requested an athletic trainer who looked me over and declared that there would be no permanent damage. Even with his encouragement I made up my mind to throw in the towel and ride the golf cart to the finish line.

Then, I thought of Carson and all of the pain he has endured. And wouldn't you know it I began to feel like a real wimp (big surprise there). So I decided I owed it to Carson to finish the marathon. I got up, stretched a bit, and hobbled to mile 22 where Rhonda, my parents, my "Little Sis" Marisa, and Amy (with son Sam) and Renee from the ALF were waiting and watching.

After some pain medication (and there was a lot of that), some water, and some much-needed encouragement I hobbled the rest of the way to the finish line.

It ONLY took me 5 hours, 4 minutes, and 29 seconds. But I finished!

There were 18 runners who raised money for the American Liver Foundation. I am proud to announce that I raised $415 and, in total, the 18 of us raised over $8,000. I can assure you that this money will be put to good use. Thanks to all of you who contributed funds. It is greatly appreciated.

I have been asked on several occassions since the marathon if I will ever run one again. My body still hurts and my mind is still a little foggy, so the only honest answer I can give is, "no". Only time will tell, however.

Once again, thank you for all of your support.

Travis "I'm REALLY not 18 anymore" Kitch
Father of Carson (liver transplant recipient) and finisher (barely) of the Twin Cities Marathon

Monday, October 4, 2004 6:53 AM CDT

Good morning...just a quick update!

Daddy ran the Twin Cities Marathon yesterday and he finished---YAH!!!!!!!!!!!! Fun fact: did you know that less than 1/10 of 1 percent of the population has run a marathon?

We don't have his official time yet, but think it was a little under the 5 hour mark. His knee really bothered him for 20 miles (yes, the first 5-6 were fine, then it started acting up). OUCH! He stopped for a bit at mile 21 and almost pulled out of the race. He talked to a medic for a bit and the medic told him what was going on and that there wouldn't be any permanent damage-just a really sore knee. After that, Trav thought about Carson and all that he has gone through. He knew that Carson had faced bigger, harder and more painful battles and decided that he could finish! We got to see him a little after mile 23 and although his knee was giving him so much pain (even after 7 advils) he was in great spirits! Trav's folks and I cheered him on the sidelines (along with Marisa, Amy and Renee (from the ALF). He proudly wore his "Finisher" t-shirt and medal after a wonderful hot shower. :-) We are all so proud of him!!!!

We're all tired from the trip home and Carson was excited to see everyone again. Our big news with Carson this past month is that he has started pre-pre-school and is loving it! He is working so hard in speech therapy and we have seen great progress. We also received his FM trainer last week, so that is another great device for him to hear us better, particularily in busy, louder places, but will also be wonderful at home and school.

That's just a quick update about the big race--Trav wore a picture of Carson on his back with "Go, Daddy, Go! Run for your son, liver transplant 12/30/01" on it. Very special. Thanks to everyone for all of your support!

Love, Happy Carson, "Aching Knees" Daddy, and Proud Mommy

Sunday, August 8, 2004 4:10 PM CDT

Greetings!

We find ourselves amazed that it is August. Where did the summer go? Thankfully it has been a wonderful summer for us. Carson is growing and learning so much this summer. In early July he began signing the ABC's. Now he is a pro at them and often wants to spell out words he sees on street signs, people's clothing, or just words in general. He also recently started working on writing his letters and with no assistance can write the entire alphabet as well. We are truly amazed at this as it is something he worked on by himself. He is so proud and signs "good job" to himself.

July brought a big change for Mommy--a new job! She is the Assistant Registrar in NDSU's Registration and Records Office. It has been a fun month and there is a lot to learn! Her Admission friends are just down the hall, so she can visit often.

We had fun visitors from the west in July--Mommy's cousin Brian and his daughter Tori from Seattle. They came along with many other relatives for a family reunion on the Brager side of the family. It was a fun reunion held in Sibley, North Dakota.

We also got to catch up a bit with Bollig's while they were in town for a wedding in July. Ryan and Carson were both transplanted at Fairview. Carson had a ball at the hotel pool while we visited.

In mid-July we went to Winnipeg for a weekend of fun with Nana, Papa, Uncles, Aunts and cousins. Carson adores his older cousins, Brody and Hannah. The kids spent a lot of time in the pool. We also went on the "Prairie Dog Express", a restored train northwest of Winnipeg, which was a lot of fun. It was fun to see everyone, particularly Travis' brother and wife Derwin and Dana. They have been teaching overseas in Sri Lanka this past year and left yesterday to go back to Sri Lanka. Carson was wiped out at the end of the weekend as we said our good byes.

Our biggest July news was attending the U.S. Transplant Games in Minneapolis. What an amazing event. It is truly hard to put into words the experience we had. Very emotional and powerful. We traveled to Minneapolis on Tuesday, July 27 and met up with some CLASS families (other liver kids--it was great to see and meet everyone!), got checked into our residence hall and registered for the Games at the Convention Center. Ironically our residence hall was across the street from our hospital and our view was of the hospital and the clinic building where we go for check-ups. On Wednesday we shopped some in the morning. Grammy arrived in the afternoon and we all go ready for opening ceremonies. They were at the Metrodome. All of the teams gathered early for team pictures. Go Team Upper Midwest! (which included North Dakota, South Dakota and Minnesota). Carson had a great time playing with other kids and just running around on the turf. Each team marches in together, with donor families at the end of the procession. It was beautiful. Our favorite sign was from Team Florida "We will rock you like a hurricane...And yes, we are on steroids!" Pretty funny considering all of the recent barring of athletes due to steroid abuse. At these Games, the athletes are encouraged to be on drugs!!! Sean Elliot (NBA star, kidney recipient) and Larry Hagman (TV star, liver recipient) helped kick off the games. We also heard from the surgeon that performed the first successful kidney transplant 50 years ago. The donor was also there. How inspiring! It was a late night that night--Carson got to sleep about 12:30 AM!

On Thursday, we gathered for a picture of recipients from our transplant center. We also attended the Donor Recognition Ceremony at the St. Paul Cathedral. It was beautiful and a touching tribute to the donors and thank you to the donor families. That evening we went to the track and field at the U of M for Carson to see the track and we could show him what he would be doing the next day!

Friday morning was beautiful and our little athlete was up and at 'em bright and early. First Carson competed in the 50 meter dash. Words can not describe the emotion we felt watching him run down the track. Three years ago we had just finished up his first surgery. Two and a half years ago it was unknown if he would even live, given that so many things were going wrong in his little body. Even a year ago, he wasn't walking yet and now here he was, a picture of great health and running down a track at the University of Minnesota. If only our donor family could have seen, as watching him run from my arms down the track into Daddy's arms was one of the most wonderful things I have ever seen and was a touching tribute to the decision they made two and a half years ago to donate their little one's organs and give Carson a second chance at life.

Later that morning Carson also competed in the softball throw. He was grumpy and tired and did not want to do it. Oh well! We got a few throws from him. Then he sacked out in his stroller for a little nap.

That afternoon we met up with Uncles Corey and Chris as they made their way out west to meet up with Papa Chip and go into northern Saskatchewan for their annual fishing trip. It was fun to meet up! Friday evening we attended the Donor Quilt Pinning Ceremony. Donor Families can make a quilt square in memory of their loved one to be quilted into a quilt. I think there are 1900 squares to date in the Patches of Love quilts. The quilts were on display at a nearby hotel and we were in awe of their beauty.

On Saturday morning, Daddy ran the 5K. It is the only event non-recipients can compete in. He had a great time in the run and we cheered him and many other friends on loudly from the sidelines. Carson got to compete in a kiddie race as well and we were also interviewed on live TV for a news channel. While Daddy was in line for Chris Klug’s autogragh (2002 Olympic bronze medalist snowboarder who had a liver transplant in 2000), a wind gust came up and blew over the poles that were a backdrop for the medals stand. Guess where a pole landed--on Carson! He screamed and soon a big knot appeared on his forehead. We were golf carted across campus to the main medical area for Games attendees. Carson quickly began flirting with the volunteers (our first sign he was okay). When the doctor started checking him over he launched into signing the ABC's (our second sign he was okay). Soon we were on our way. He had quite the souvenir on his head though! That evening we attended Closing Ceremonies, which featured Chris Klug, Carl Lewis (U.S. track athlete with multiple medals--big transplant game supporter), and a highlights video that had clips of all of the events. It was wonderful.

On Sunday we packed up and went to a Fairview liver transplant picnic at a park in the Cities. Carson had a great time playing with fellow liver buddies Sami, Kyle, Parker, and Anna. It was fun to see everyone again. After some quick pictures we were on the way home. We were exhausted. What a week! We have 400 digital pictures and over 4 hours of video tape from the week!

On Monday Carson started two weeks of swimming lessons. He is doing great! He loves the water and runs to the door when he sees the swimming bag come out each day. By the end of the week he was swimming some on his own, using his arms and legs (all of the kids have a waist belt on that helps keep them up). There are only two others in his class, which is nice.

Wednesday was medical day. Carson is still fighting an ear infection and started his third round of antibiotics. Grrrrrr….. Hopefully this clears it up. He also had labs Wednesday night. All looked great, except his white count is up (logically from the ear infection). He never had an ear infection prior to his hearing aids and now it seems he has a hard time shaking them. Summer seems to be the worst since the moisture and humidity is up.

Yesterday we went to the zoo down in Wahpeton and had a great time. Carson was so gentle with the animals in the petting zoo area and particularly liked the baby calf. It was so adorable.

August is going to be a busy month for Daddy and Mommy. For Carson it will be fairly quiet. He is off from Early Intervention this month. He will start pre-pre-school on September 7 and go Monday through Thursday from 10 AM – 12 PM. Daddy is teaching three sections of Introduction to Anthropology this fall. Two sections at NDSU and one at Minnesota State Community and Technical College in Moorhead. He has been busy preparing. August and September are busy ones for Mommy and she is taking three classes this fall (two the first half of the semester and one the second half). Fall is going to fly by!

Another exciting event this fall is on October 3. Daddy is running in the Twin Cities Marathon. He is not just running to run. He is running for his son. Below is the letter he recently sent out. Most of all, keep him in your prayers and he trains and runs. Any other support is appreciated as well and will go towards liver research through the American Liver Foundation. Go, Daddy, go!

Whew! That wraps it up. Pretty long update. We hope all is well with each of you! Take care and God's Blessings to you.

Love, Carson, Daddy and Mommy

Greetings:
How do you honor someone who has made such an impact on your life that nothing is ever the same for you again? How do you show someone that you really want to make a difference in the world? How do you tell someone that you love them and that you would do anything under the sun for them?
Well, if you are me, you run 26.2 miles! All at once! Yes, you read that right--26.2 miles all at once.
Yes, I intend to run the 2004 Twin Cities Marathon on October 3. My only problem is I am not 18 years old anymore and my shins hurt. But I have inspiration! When I run I will be honoring my son Carson who survived a liver transplant at the tender age of 8 months. And I won't be alone. I will also have the American Liver Foundation (ALF) cheering for me through every knee-pounding, hip-hurting, ankle-bending, and toe-crunching step.
In addition to running for Carson, I am raising money for the ALF to help others who are affected by liver disease. This is where you come in. My goal is to raise $2000 and any amount of support you could provide would be greatly appreciated. If you are unable to donate, I understand. All I ask is that you wish me luck.
I've heard that the most difficult marathon to run is your first one. So when I start to hurt (I'm guessing that will be somewhere around mile 14) and I don't think I can go any farther (I'm guessing that will be somewhere around mile 18) I will just think of Carson and all the pain he has gone through just to stay alive. Then my shins won't hurt so much. Carson has changed my life so much that nothing will ever be the same again. I thank him for that. Running to honor him is the least I can do.
So I thank you for contributing to the "Run For My Son" marathon campaign (checks can be made out to ALF and sent to the ALF at 1500 McAndrews Road West, Suite 214, Burnsville, MN 55337. Please write "Run For My Son" on the memo line). Please know that the money you donate is being used to help save lives. When Carson is older, I will tell him that his Daddy and lots of other people made a difference in the lives of those who live with liver disease. Thank you.

Sincerely,
Travis "I'm Not 18 Anymore" Kitch
Father of Carson (liver transplant December 2001)

Sunday, August 8, 2004 4:10 PM CDT

Greetings!

We find ourselves amazed that it is August. Where did the summer go? Thankfully it has been a wonderful summer for us. Carson is growing and learning so much this summer. In early July he began signing the ABC's. Now he is a pro at them and often wants to spell out words he sees on street signs, people's clothing, or just words in general. He also recently started working on writing his letters and with no assistance can write the entire alphabet as well. We are truly amazed at this as it is something he worked on by himself. He is so proud and signs "good job" to himself.

July brought a big change for Mommy--a new job! She is the Assistant Registrar in NDSU's Registration and Records Office. It has been a fun month and there is a lot to learn! Thankfully her Admission friends are just down the hall, so she can visit often.

We had fun visitors from the west in July--Mommy's cousin Brian and his daughter Tori from Seattle. They came along with many other relatives for a family reunion on the Brager side of the family. It was a fun reunion held in Sibley, North Dakota.

We also got to catch up a bit with Bollig's while they were in town for a wedding in July. Ryan and Carson were both transplanted at Fairview. Carson had a ball at the hotel pool while we visited.

In mid-July we went to Winnipeg for a weekend of fun with Nana, Papa, Uncles, Aunts and cousins. Carson adores his older cousins, Brody and Hannah. The kids spent a lot of time in the pool. We also went on the "Prairie Dog Express", a restored train northwest of Winnipeg, which was a lot of fun. It was fun to see everyone, particularly Travis' brother and wife Derwin and Dana. They have been teaching overseas in Sri Lanka this past year and left yesterday to go back to Sri Lanka. Carson was wiped out at the end of the weekend as we said our good byes.

Our biggest July news was attending the U.S. Transplant Games in Minneapolis. What an amazing event. It is truly hard to put into words the experience we had. Very emotional and powerful. We traveled to Minneapolis on Tuesday, July 27 and met up with some CLASS families (other liver kids--it was great to see and meet everyone!), got checked into our residence hall and registered for the Games at the Convention Center. Ironically our residence hall was across the street from our hospital and our view was of the hospital and the clinic building where we go for check-ups. On Wednesday we shopped some in the morning. Grammy arrived in the afternoon and we all go ready for opening ceremonies. They were at the Metrodome. All of the teams gathered early for team pictures. Go Team Upper Midwest! (which included North Dakota, South Dakota and Minnesota). Carson had a great time playing with other kids and just running around on the turf. Each team marches in together, with donor families at the end of the procession. It was beautiful. Our favorite sign was from Team Florida "We will rock you like a hurricane...And yes, we are on steroids!" Pretty funny considering all of the recent barring of athletes due to steroid abuse. At these Games, the athletes are encouraged to be on drugs!!! Sean Elliot (NBA star, kidney recipient) and Larry Hagman (TV star, liver recipient) helped kick off the games. We also heard from the surgeon that performed the first successful kidney transplant 50 years ago. The donor was also there. How inspiring! It was a late night that night--Carson got to sleep about 12:30 AM!

On Thursday, we gathered for a picture of recipients from our transplant center. We also attended the Donor Recognition Ceremony at the St. Paul Cathedral. It was beautiful and a touching tribute to the donors and thank you to the donor families. That evening we went to the track and field at the U of M for Carson to see the track and we could show him what he would be doing the next day!

Friday morning was beautiful and our little athlete was up and at 'em bright and early. First Carson competed in the 50 meter dash. Words can not describe the emotion we felt watching him run down the track. Three years ago we had just finished up his first surgery. Two and a half years ago it was unknown if he would even live, given that so many things were going wrong in his little body. Even a year ago, he wasn't walking yet and now here he was, a picture of great health and running down a track at the University of Minnesota track. If only our donor family could have seen, as watching him run from my arms down the track into Daddy's arms was one of the most wonderful things I have ever seen and was a touching tribute to the decision they made two and a half years ago to donate their little one's organs and gave Carson a second chance at life.

Later that morning Carson also competed in the softball throw. He was grumpy and tired and did not want to do it. Oh well! We got a few throws from him. Then he sacked out in his stroller for a little nap.

That afternoon we met up with Uncles Corey and Chris as they made their way out west to meet up with Papa Chip and go into northern Saskatchewan for their annual fishing trip. It was fun to meet up! Friday evening we attended the Donor Quilt Pinning Ceremony. Donor Families can make a quilt square in memory of their loved one to be quilted into a quilt. I think there are 1900+ squares to date in the Patches of Love quilts. The quilts were on display at a nearby hotel and we were in awe of their beauty.

On Saturday morning, Daddy ran the 5K. It is the only event non-recipients can compete in. He had a great time in the run and we cheered him and many other friends on loudly from the sidelines. Carson got to compete in a kiddie race as well and we were also interviewed on live TV for a news channel. While Daddy was in line for Chris Klug’s autogragh (2002 Olympic bronze medalist snowboarder who had a liver transplant in 2000), a wind gust came up and blew over the poles that were a backdrop for the medals stand. Guess where a pole landed--on Carson! He screamed and soon a big knot appeared on his forehead. We were golf carted across campus to the main medical area for Games attendees. Carson quickly began flirting with the volunteers (our first sign he was okay). When the doctor started checking him over he launched into signing the ABC's (our second sign he was okay). Soon we were on our way. He had quite the souvenir on his head though! That evening we attended Closing Ceremonies, which featured Chris Klug, Carl Lewis (U.S. track athlete with multiple medals--big transplant game supporter), and a highlights video that had clips of all of the events. It was wonderful.

On Sunday we packed up and went to a Fairview liver transplant picnic at a park in the Cities. Carson had a great time playing with fellow liver buddies Sami, Kyle, Parker, and Anna. It was fun to see everyone again. After some quick pictures we were on the way home. We were exhausted. What a week! We have 400+ digital pictures and over 4 hours of video tape from the week!

On Monday Carson started two weeks of swimming lessons. He is doing great! He loves the water and runs to the door when he sees the swimming bag come out each day. By the end of the week he was swimming some on his own, using his arms and legs (all of the kids have a waist belt on that helps keep them up). There are only two others in his class, which is nice.

Wednesday was medical day. Carson is still fighting an ear infection and started his third round of antibiotics. Grrrrrr….. Hopefully this clears it up. He also had labs Wednesday night. All looked great, except his white count is up (logically from the ear infection). He never had an ear infection prior to his hearing aids and now it seems he has a hard time shaking them. Summer seems to be the worst since the moisture and humidity is up.

Yesterday we went to the zoo down in Wahpeton and had a great time. Carson was so gentle with the animals in the petting zoo area and particularly liked the baby calf. It was so adorable.

August is going to be a busy month for Daddy and Mommy. For Carson it will be fairly quiet. He is off from Early Intervention this month. He will start pre-pre-school on September 7 and go Monday through Thursday from 10 AM – 12 PM. Daddy is teaching three sections of Introduction to Anthropology this fall. Two sections at NDSU and one at Minnesota State Community and Technical College in Moorhead. He has been busy preparing. August and September are busy ones for Mommy and she is taking three classes this fall (two the first half of the semester and one the second half). Fall is going to fly by!

Another exciting event this fall is on October 3. Daddy is running in the Twin Cities Marathon. He is not just running to run. He is running for his son. Below is the letter he recently sent out. Most of all, keep him in your prayers and he trains and runs. Any other support is appreciated as well and will go towards liver research through the American Liver Foundation. Go, Daddy, go!

Whew! That wraps it up. Pretty long update. We hope all is well with each of you! Take care and God's Blessings to you.

Love, Carson, Daddy and Mommy

Greetings:
How do you honor someone who has made such an impact on your life that nothing is ever the same for you again? How do you show someone that you really want to make a difference in the world? How do you tell someone that you love them and that you would do anything under the sun for them?
Well, if you are me, you run 26.2 miles! All at once! Yes, you read that right--26.2 miles all at once.
Yes, I intend to run the 2004 Twin Cities Marathon on October 3. My only problem is I am not 18 years old anymore and my shins hurt. But I have inspiration! When I run I will be honoring my son Carson who survived a liver transplant at the tender age of 8 months. And I won't be alone. I will also have the American Liver Foundation (ALF) cheering for me through every knee-pounding, hip-hurting, ankle-bending, and toe-crunching step.
In addition to running for Carson, I am raising money for the ALF to help others who are affected by liver disease. This is where you come in. My goal is to raise $2000 and any amount of support you could provide would be greatly appreciated. If you are unable to donate, I understand. All I ask is that you wish me luck.
I've heard that the most difficult marathon to run is your first one. So when I start to hurt (I'm guessing that will be somewhere around mile 14) and I don't think I can go any farther (I'm guessing that will be somewhere around mile 18) I will just think of Carson and all the pain he has gone through just to stay alive. Then my shins won't hurt so much. Carson has changed my life so much that nothing will ever be the same again. I thank him for that. Running to honor him is the least I can do.
So I thank you for contributing to the "Run For My Son" marathon campaign (checks can be made out to ALF and sent to the ALF at 1500 McAndrews Road West, Suite 214, Burnsville, MN 55337. Please write "Run For My Son" on the memo line). Please know that the money you donate is being used to help save lives. When Carson is older, I will tell him that his Daddy and lots of other people made a difference in the lives of those who live with liver disease. Thank you.

Sincerely,
Travis "I'm Not 18 Anymore" Kitch
Father of Carson (liver transplant December 2001)

Tuesday, June 22, 2004 11:10 PM CDT

Greetings again from the Kitch home! We have some exciting news to update everyone on.

First, Carson has finished up two weeks of Parent and Child Swimming lessons. He had a great time and is ready to move on to Beginner. We have signed him up for a session in August so we don't have any down time. He loves the water and enjoys hopping and jumping more than anything else. Guess that makes him more of a little frog than a fish! :-) We'll certainly be spending some time at the pool this summer (whenever it warms up!).

Last week was a busy week for Carson. He had a sedated hearing test early in the week. We have been concerned that Carson's hearing loss was progressive. Tests concluded that it is essentially where it was when he was first diagnosed. Wonderful news!

We made a trip to the Cities and met with Dr. Sharp, Carson's GI on Wednesday. Carson looks great and no lab or med changes. The new med he's on seems to have helped his EBV so hopefully it will stay in check. Carson gave Dr. Sharp a HUGE hug and even blew kisses at him. Pretty good stuff. We'll see Dr. Sharp in 6 months for Carson's annual transplant checkup.

After visiting with Dr. Sharp we found the information about sponsoring a turtle in Fairview Children's Hospital annual Turtle Derby. Proceeds benefit the Child Family Life Department and they do so many things for kids in the hospital. We watched the Turtle Derby last year and Carson had so much fun watching the people and the turtles. Unfortunately we won't be there this Thursday to cheer his turtle on (named Tuk Tuk, which is Carson's nickname) but we'll be rooting for him/her from here.

To celebrate the good news from Dr. Sharp we spent some time at Camp Snoopy, which was a big hit with Carson. (Three rounds on the little rollercoaster...) We also met up with Marisa, her family and a good friend in the evening and were treated to a wonderful boat ride. Relaxing eveing--thanks for the fun time!

On Thursday we met with Dr. Baker, Carson's cardiologist. After an EKG, x-ray and echo we got the news that Carson's heart (and the subaortic stenosis) is stable and has not worsened even though he has grown 2 inches since January and gained weight. Yahoo! Dr. Baker told us he'd see us in 6 months and we almost fell over as we were very prepared for surgery this fall, as that is how it looked in January. Carson will still need surgery but the longer we can push it and the closer he gets to age 5 the less likely the surgery will need to be repeated. We'll continue to go back every 6 months and take it from there. If we have surgery next winter we are that much closer to age 5 than we are now, so we'll take it one day/week/month at a time. After a round of hugs from Carson to Dr. Baker and blowing some kisses (as well as signing "1-2-3-GO!") we were on our way home.

With such wonderful news we essentially grinned our way back to Moorhead. :-) Carson napped. :-)

Three wonderful check-up outcomes in one week. We are so thankful. We had a relaxing and special weekend this past weekend. Saturday, June 19th marked three years since Carson's Kasai surgery and of course Sunday was Father's Day. We had a special family day and enjoyed every minute.

We're really getting excited for the U.S. Transplant Games in MInneapolis--it is going to be an amazing experience!

Want to pass along a cute Carson story: this past Saturday I (Mommy) was talking to Carson. After a bit he gave me quite the parental look and signed to me "use your signs" which is what we sign to him if he is trying to convey his wants but not signing. I wasn't signing a whole lot to him, but mostly talking (he is learning to lip read more and more). Apparently he wasn't too pleased about my lack of signing and he let me know! I loved every minute and started to sign. I couldn't help but think of just how frail and helpless he looked 3 years ago in the PICU and what an amazing difference it was. Guess we better start preparing for quite the independent teenager!

On that note, we'll sign off. God's Blessings to you!

Love, Carson, Daddy and Mommy

Sunday, June 6, 2004 3:46 PM CDT

Greetings! We cannot believe it has been over a month since we updated. No news is certainly still good news.

Carson has made a lot of progress with sign language and speech development in the past month. In early May he started signing "1-2-3-GO!" for the start of any ride in the bike buggy, in the car, or just in general if he wanted to go someplace. The phrase is his current favorite set of signs. He can count up to 5 in sign and can recognize numbers up to 5 as well. He can do the same for letters A-E. He loves finding and naming various things as we drive or walk around. Red signs, green trees, black cars, and the list goes on.

In early May he received new earmolds for his hearing aids. He also continued to fight a persistent ear infection. It seems like we have finally conquered it. YAH!

On May 8 we had the "Love Your Liver Walk". It was a beautiful day and full of fun and prizes. As long as there are still awful liver diseases, we will keep walking. We are hopeful that we will see cures to many liver diseases someday soon.

Mid-May brought a trip for Daddy and Mommy to Duluth to celebrate their 10th Anniversary. It was our first time together away from Carson. He stayed with Grammy and had lots of fun. We are not sure if he even noticed we were gone and are very certain that the separation was harder on us than him!

The last few weeks have been busy in the yard. We planted a garden and lots of flowers, have put up a gate at the end of the deck because of a little certain someone (he is trying to figure out how to climb over it and his latest idea was to push a chair up to it to assist in the efforts!), stained the deck furniture, and have just enjoyed being outside without too many bugs yet! It has been wet lately so we are thankful for the nice days. Carson has mastered signing "Play, outside, shoes, on, yes, 1-2-3-GO!" within about a 5 second window.

Over Memorial Day we ventured out west to the Williston area. We all had a ball at Papa Chip's new place along the Missouri River. We discovered Carson loves hills and he would squeal as we would drive throughout the hill-filled roads in the area. This was his first trip west and he got to meet so many people and we got to see some folks we hadn’t seen in years. It has been 3 ½ years since we were last west. Papa Chip hosted a big BBQ, which was fun and we made special visits to some folks as well, including Angie, Hazel, Lois and a trip to West Prairie Church. We had pretty good weather too, which was nice.

This week we were part of an organ donation discussion with LifeSource at our church. It was a great group and Carson was a show-off (imagine!). We can't believe that it has already been 3 years since we were wondering on a diagnosis for Carson.

Carson's labs have overall looked great. His EBV levels (which we thought he had kicked EBV) are bouncing again so he's back on an oral anti-viral medication. Hopefully they will stabilize and we won't have to do anything else. We head to Minneapolis in a few weeks for checkups with GI and Cardiology. We have a feeling that heart surgery will be sooner than later but we'll just have to wait and see what Dr. Baker says.

Carson starts two weeks of swimming lessons tomorrow night. He is going to have a ball in the pool. He has had a two-week break from some of his therapy with Early Intervention and is back at it this week. Mommy is taking a summer class too, so we are all keeping busy.

That is about it for now. Hope all is well with each of you and God's Blessings to you and yours.

Love, Carson, Daddy & Mommy

Sunday, June 6, 2004 3:46 PM CDT

Wednesday, April 28, 2004 11:53 AM CDT

Happy Birthday to Carson!

We have an amazing three-year-old that is really enjoying his special day. Mommy took the day off from work, so we can spend all day together. Agenda for the day includes speech therapy (Carson's teacher Vicki was already here), a trip to the park, having the Gillette girls over, a nap, labs tonight and of course cake and a special supper. Since April is National Organ and Tissue Donation Awareness Month we are also remembering Carson's donor and honoring the memory of the little angel that now is watching over him.

The last few weeks have been busy ones. Carson has been working very hard with his teachers and is now working on the sounds "ahhhh" "eeeee" and "ooooo" along with the facial expressions that one makes with each of those sounds.

A few weeks ago we shot a TV ad for United Blood Services. It was fun and hopefully it will encourage folks to get out and donate blood!

Carson is signed up for two sessions of swimming lessons this summer. The first one is in June and is a parent/child class. The second one is in August and is a beginner class. Both classes run Monday through Friday for two weeks, so hopefully he will be even more of a little fish by the end of the summer!

A little over a week ago we had some 'fun'. Carson needed some CT's at Innovis as his EBV level had bounced up again. It was a huge challenge, but fortunately we got the scans we needed and his lymph nodes looked good. No sign of cancer.

Carson has adored the arrival of spring and loves every minute he can get outside. We are especially excited that today is so nice so we can spend a lot of time outside.

We had a visit from Uncle Chris and his friend Hilary a few weeks ago. Chris gave Carson his annual supply of John Deere paraphernalia for a birthday present.

We celebrated Carson's birthday party on Sunday with friends and family. Nana and Papa were here for several days as well to help celebrate and see Carson's newest tricks. Papa was also here for a stretch. Carson had a great time at his party and the biggest bummer was that it was too windy to go outside.

We are getting really excited for the Love Your Liver Walk on May 8. We're hoping for wonderful weather!

That is all from our corner of south Moorhead. Hope all is well with each of you and God Bless!

Love, Carson, Daddy & Mommy

Sunday, April 4, 2004 6:16 AM CDT

Greetings! Spring is here! We love the warmer temps...more about that in a bit.

The last month has been great. Carson is making awesome progress is so many areas--growth, signs and sound development, expressing his needs/wants and more. He is such an amazing kid! Almost a month ago he signed his longest sentence to date "Carson want eat popcorn". (He LOVES popcorn!) Now he signs "Carson want eat popcorn, please (then a pause) yes, go" for "yes, let's go and make popcorn". It's so fun! If he had his way, however, we'd be making popcorn at least a dozen times a day.

Carson and Daddy have spent countless hours outside the last few weeks. Carson, of course, loves playing outdoors. One night, about 10 PM, he kept signing "shoes" and "hat" and "outside". Didn't matter that it was dark. I took him out on the front step and once he realized that it was quite a bit cooler than earlier, he decided that inside was an okay place to be.

Carson has loved the backyard and playing on his playset. He is so independent and it's amazing to watch the difference a year can make. They've also spent many days at a nearby park. It has an amazing play area and Carson knows the area well and 'does his thing' for hours there. A week and a half ago Daddy tried out the bike buggy with Carson, which he has NOT enjoyed the last two summers. Much to everyone's delight, Carson loves his buggy now and sits in the buggy, all strapped in and with his helmet on, and enjoys the ride. They've gone for one and a half hour rides this week and I'm not sure who enjoys it more--Carson or Daddy!

Two weeks ago Carson had his first ear infection. There was some drainage out of his left ear, but no fever. Decided to play it safe and went to the ER. Carson was a champ in the ER. At first he was a bit skeptical, since he's not a real fan of medical settings, but I repeatedly told him "no pokes" and before long he was blowing kisses at the nurses. He even signed "thank you" (without any prompting) to each nurse that worked with us! What a flirt!

We had labs a few weeks ago as well--went well and his labs look outstanding. We love being down to monthly labs! Carson even gave hugs after the draw to Nancy and Shirley so that was impressive.

Last weekend we went to a Pow Wow that was in town. It was a wonderful learning experience for all of us. Carson loved watching the dancers. It was a great evening!

This last week Carson had another first--his first trip to the dentist! We found a peds dentist in Fergus Falls and had heard great things about him, plus his practice has several immune-suppressed kids, which was comforting for us. It was worth the trip to Fergus, as we were very impressed! Great news reported that Carson's gums look wonderful. He also has all of the teeth he is supposed to at this point. Some of his back molars look a little scary, as they were influenced from the liver disease. The dentist hopes we can make it a few years, but his baby molars will likely need crowns down the road. Overall, good news as we've been worried about his teeth. He got some of his teeth polished, wasn't a big fan of the whole day, but overall did great. Probably the most challenging part of the day was getting the amoxicillin down him that morning--he needs to take an antibiotic both because of his transplant and heart surgery--to fend off any potential infection that can come out of dental work. We had crushable tablets and mixed them with a bit of applesauce--no fooling him though!

Today we are going to the Shrine Circus after church. Carson will have a ball! He loves animals and knows lots of animal signs, so it will be neat to actually have him see live elephants, tigers, etc. :-)

We're also making plans for Carson's third birthday. Can't believe it's been another year! We think of our donor family daily as well and April is National Organ and Tissue Donation Awareness Month. How special that Carson's birthday is in such a special month!

We're also gearing up for the "Love your Liver" walk in Fargo on Saturday, May 8. We're hoping for great weather!! If you are interested in being on or helping out "Team Carson", let us know! All proceeds benefit the American Liver Foundation.

That's all for now...until our next update! God Bless!

Love, Carson, Daddy & Mommy

Sunday, April 4, 2004 6:16 AM CDT

Greetings! Spring is here! We love the warmer temps...more about that in a bit.

The last month has been great. Carson is making awesome progress is so many areas--growth, signs and sound development, expressing his needs/wants and more. He is such an amazing kid! Almost a month ago he signed his longest sentence to date "Carson want eat popcorn". (He LOVES popcorn!) Now he signs "Carson want eat popcorn, please (then a pause) yes, go" for "yes, let's go and make popcorn". It's so fun! If he had his way, however, we'd be making popcorn at least a dozen times a day.

Carson and Daddy have spent countless hours outside the last few weeks. Carson, of course, loves playing outdoors. One night, about 10 PM, he kept signing "shoes" and "hat" and "outside". Didn't matter that it was dark. I took him out on the front step and once he realized that it was quite a bit cooler than earlier, he decided that inside was an okay place to be.

Carson has loved the backyard and playing on his playset. He is so independent and it's amazing to watch the difference a year can make. They've also spent many days at a nearby park. It has an amazing play area and Carson knows the area well and 'does his thing' for hours there. A week and a half ago Daddy tried out the bike buggy with Carson, which he has NOT enjoyed the last two summers. Much to everyone's delight, Carson loves his buggy now and sits in the buggy, all strapped in and with his helmet on, and enjoys the ride. They've gone for one and a half hour rides this week and I'm not sure who enjoys it more--Carson or Daddy!

Two weeks ago Carson had his first ear infection. There was some drainage out of his left ear, but no fever. Decided to play it safe and went to the ER. Carson was a champ in the ER. At first he was a bit skeptical, since he's not a real fan of medical settings, but I repeatedly told him "no pokes" and before long he was blowing kisses at the nurses. He even signed "thank you" (without any prompting) to each nurse that worked with us! What a flirt!

We had labs a few weeks ago as well--went well and his labs look outstanding. We love being down to monthly labs! Carson even gave hugs after the draw to Nancy and Shirley so that was impressive.

Last weekend we went to a Pow Wow that was in town. It was a wonderful learning experience for all of us. Carson loved watching the dancers. It was a great evening!

This last week Carson had another first--his first trip to the dentist! We found a peds dentist in Fergus Falls and had heard great things about him, plus his practice has several immune-suppressed kids, which was comforting for us. It was worth the trip to Fergus, as we were very impressed! Great news reported that Carson's gums look wonderful. He also has all of the teeth he is supposed to at this point. Some of his back molars look a little scary, as they were influenced from the liver disease. The dentist hopes we can make it a few years, but his baby molars will likely need crowns down the road. Overall, good news as we've been worried about his teeth. He got some of his teeth polished, wasn't a big fan of the whole day, but overall did great. Probably the most challenging part of the day was getting the amoxicillin down him that morning--he needs to take an antibiotic both because of his transplant and heart surgery--to fend off any potential infection that can come out of dental work. We had crushable tablets and mixed them with a bit of applesauce--no fooling him though!

Today we are going to the Shrine Circus after church. Carson will have a ball! He loves animals and knows lots of animal signs, so it will be neat to actually have him see live elephants, tigers, etc. :-)

We're also making plans for Carson's third birthday. Can't believe it's been another year! We think of our donor family daily as well and April is National Organ and Tissue Donation Awareness Month. How special that Carson's birthday is in such a special month!

That's all for now...until our next update! God Bless!

Love, Carson, Daddy & Mommy

Friday, March 5, 2004 10:30 AM CST

Greetings!

Sorry it has been so long since an update...no news is certainly good news!

Carson's labs last week looked great, even though he had a case of the sniffles (which often messes up a few of his counts). We were happy about the report and can wait another month until the next poke.

Carson had a blast at the Bison Basketball games a few weeks ago. He loved watching all of the action on and off of the court. At center court he gave high fives to a few of the players, threw the little ball back and forth and kicked (yes, kicked) the basketball around as well. He loved it! We were so happy that Nana, Papa and Grammy got to share the evening with us. When Carson woke up the next morning the first thing he signed was "ball" and we had to go and find his two new little basketballs.

Nana and Papa visited for a few days a couple of weeks ago. They certainly saw quite a few changes in Carson. They also shared pictures and stories of their recent trip to Sri Lanka to visit Uncle Derwin and Auntie Dana. We miss them so and can’t wait for them to visit this summer.

Carson’s signs have exploded the past few weeks. He is making connections all of the time between the sign and an object or action. It is so fun to watch. He is keeping us on our toes by often checking out what a sign for something is, as if he doesn’t know the sign he will make one up or default to his two favorite signs "kitty" or "puppy". He certainly knows what they are but when he is excited about something new he will call it a kitty or puppy until he learns the actual sign. It is pretty interesting.

We lost some snow the past few weeks but also gained a little. The fresh snow certainly brightened things up. Carson is itching to spend more time outside and has loved splashing around in the puddles. We have a feeling that he will practically be living outside this summer...we are planning to get a lot of time outside before the mosquitoes hit!

Well, that is all for now. We are happy that the temps are getting warmer and the days are getting longer.

Take care and God Bless!

Love, Carson, Daddy & Mommy

Saturday, February 7, 2004 9:24 AM CST

Good morning! It's a bright sunny day and the thermometer will be above zero today, so it's looking like a great day! Maybe we'll even have some outside time today! The "pinkeye duo" is getting better, and drops continue for only a few more days.

Carson is off from speech all next week as Early Intervention is on break. That'll be a two week break for him since he didn't make it at all last week. He's been working at home though, so that's good! We're hoping to do a total count of the signs he knows--we know he must be to 60-70 or maybe even more. He'll copy any sign we do, so he's done many, but we "count" it when he makes the connection between the sign and the action/individual/thing/etc.

Carson is going to be honored this next Friday, February 13th between the men's and women's NDSU basketball games. United Blood Services is coordinating a big blood drive with the Bison Athletic Department this next week. UBS wanted to have a blood product recipent at one of the games next weekend as a "thank you". In between the two games Carson will be on the court along with some players and his story will be told to ethe crowd. Should be a very special night. Blood donation is so important. We encourage everyone to consider being an organ donor, and we also encourage individuals to give the gift of life through blood donation! In between Carson's heart surgery and liver transplant, rarely did a day or two go by that he didn't receive some form of blood product. That was over the span of 9 1/2 weeks. Friday also marks two years since we've spent an overnight in any hospital! WOW!!! We're so proud of the tremendous progress Carson has made.

We'd like to share a verse with you. It was sent to us by a very special friend. Carson's upcoming heart surgery has a wonderful prognosis, which we are very thankful for. If Carson could talk, I'd like to think that he'd say that when his heart is cut open again the medical team will find Jesus in there as well.

Have a great week, Happy Valentine's Day, stay warm and God's Blessings to each of you!

Love, Carson, Daddy & Mommy

The Heart

"Tomorrow morning," the surgeon began, "I'll open up your heart..."

"You'll find Jesus there," the boy interrupted.

The surgeon looked up, annoyed "I'll cut your heart open," he continued, "to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in there," said the boy.

The surgeon looked to the parents, who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I'll plan what to do next."

"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."

The surgeon had had enough. "I'll tell you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."

"You'll find Jesus there too. He lives there."

The surgeon left.

The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: painkillers and bedrest. Prognosis:," here he paused, "death within one year." He stopped the recorder, but there was more to be said. "Why?" he asked aloud.

"Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"

The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."

The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why?"

The Lord answered, "The boy, My lamb, shall return to My flock, for He has done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb."

The surgeon wept.

The surgeon sat beside the boy's bed; the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?"

"Yes," said the surgeon.

"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

Author Unknown

Wednesday, February 4, 2004 9:15 PM CST

Good evening! We are very happy to report that we are starting to thaw out and tomorrow we may get to 20 above zero. We've been in an awful cold snap with temps in the -20 to close to -30 below some evenings (that was just air temp, not to mention what the wind chill was!) We also got about a foot of snow about a week and a half ago so it's certainly a winter wonderland outside. Too bad that it's been too cold out for Carson to play in it.

Carson had labs last week--sure is nice to be on a monthly schedule! It was Nancy's birthday (our beloved lab tech). She and everyone at Dakota Clinic are so good to us. Nancy makes up the "Carson kit" complete with all of the tubes, syringes, bandaid, heat pack, washcloths and of course, stickers for Carson! We have our routine!!! It was a "one poke night" which was super. Carson's labs looked great. :-)

Carson's come down with a bit of a bug this week--mainly a very runny nose and bit of a cough. Today Mommy thought her eye was really red and kinda itchy...she went to the doctor and sure enough--pink eye! By afternoon Carson was also showing symptoms and now we're both on eye drops. Oh what fun! Had to laugh (what else can you do?) as it was exactly a year ago that Mommy got the shingles. So, any guesses on what contagious disease will be with us in February 2005?

Carson has missed speech every day this week due to not feeling well and now with pinkeye will obviously miss tomorrow as well.

Well, time for bed! Hope all is well with each of our friends and family. Take care and God's Blessings to each of you!

Love, Carson, Daddy & Mommy

Friday, January 23, 2004 2:14 PM CST

Greetings!

We heard from Dr. Baker this morning--he presented Carson's case to a team of peds cardiologists and peds cardiac surgeons yesterday. Dr. Baker refered to Carson's heart as having a sub-aortic stenosis, which, according to Taber's medical dictionary, is the constriction or narrowing of a passage or orifice; specifically relating to the subaortic region it is a constriction of the aortic tract below the aortic valves. We will see Dr. Baker again in 6 months (which is the same time we will be seeing Dr. Sharp, Carson's GI). Dr. Baker also said if need be we might have to forgo the transplant games if things did worsen and surgery is needed. Since he saw a worsening of the condition from January to January he is expecting to see things worse off in 6 months from now (a "progression" thing). They would like Carson to get as old as possible before requiring surgery, as then there is less of a chance that the problem would re-occur. We like the sound of that, as the fewer open heart surgeries, the better! So, yes, Carson will need another open heart surgery but it won't be in the immediate future. Hopefully we can get 6-12 months or more out. His prognosis is excellent, which is reassuring.

Besides our basic concerns over another surgery, we are concerned about keeping Carson "mellow" after he feels better. After a few weeks he'll likely be back to his climbing & jumping self and his sternum needs about 2-4 months to heal well. YIKES!!! Lots of snuggles and watching movies, maybe??? After his heart cath on Monday he was supposed to take it easy for a few days...well he was hopping around at the RMH that night. Nothing like making Mommy & Daddy's blood pressure race!

While we were in recovery on Monday Carson kept signing "go" and "all done" to us and was frustrated that we were still hanging around and even signed "no" at the nurses a few times. He wasn't particularily fond of them coming near him. When we signed and told him we were indeed "all done" and it was time to "go" he was a pretty happy boy.

Carson is officially registered for the Transplant Games this summer in the softball throw and the 50 meter dash. Hopefully he'll be able to compete...if not, hopefully we can all be there as observers! It's basically in our "backyard" so we want to be there.

Well, that's the latest update. Thank you so much for all of your prayers! We sure appreciate them!

Take care and God Bless,
Love, Carson, Daddy & Mommy

Monday, January 19, 2004 2:30 PM CST

Hi all,

Carson's heart cath is over and he is now resting comfortably in Rhonda's arms in recovery. When I left them to update the journal he was snoring.

We had a nice long talk with Dr. Baker (Carson's cardiologist). Things don't look quite as bad as the heart echo showed 3 weeks ago. The leak around the heart patch is very small. There is still the blockage in the left ventricle that will need to be dealt with surgically (as well as sealing that leak). The blockage is what is causing Carson's "impressive" murmer (as many a Doctor has described it as).

The question is timing. Dr. Baker will be consulting with his team this Thursday to determine when the best time would be to do the surgery. There is no real hurry as the conditions aren't immediately problematic. Surgery could be anytime from 6 months from now to a couple of years.

The left side of Carson's heart is a little mis-shapened. This should not prove to be problematic in the short- or long-term. The right side of his heart is the right shape. Why this is we will probably never know.

Dr. Baker feels that Carson's prognosis is excellent, even though it is a full-fledged-open-Carson-up heart surgery. Carson is in much better shape than he was two years ago (bigger, stronger, healthier). That happy liver makes all the difference. Hopefully this will be his last surgery (knock on wood).

Looking ahead to surgery time, whenever that will be: Carson's PICU stay after surgery will be 2-4 days. His overall hospital stay will be 7-10 days and complete recovery time will be 2-4 months. Our biggest challenge will be to keep an active toddler from hurting himself in the weeks and months after surgery.

We should be discharged by 6 this afternoon and then we are spending a quiet night at the Ronald McDonald House. Tomorrow, home.

Thanks to Grandpa Chip and Marisa for keeping us company this afternoon.

That's all for now.

Daddy

P.S. We're not sure if this is a good thing or a bad thing but we have seen at least 5 doctors that we know from the hospital!

Sunday, January 18, 2004 3:18 PM CST

Greetings! We are all settled in at Ronald McDonald House. Had an uneventful trip down yesterday (and a fast trip, considering Carson slept for 2 1/2 hours of it--no stops!). Carson explored the play areas of RMH upon our arrival; he is at an age that he is really enjoying the house and all that it offers. We went to Marisa's house for supper last night--she made us a delicious meal! Thanks, Marisa, that was so sweet of you! Back to RMH for more exploring and then bedtime for all three of us.

We wanted today to be relaxing and fun and it has been that thus far. This morning we got ready and met Marisa at the Children's Museum in St. Paul. We've never been there. Carson had a ball and pretty much ran for 2+ hours. Good thing there were three of us to keep track of him! He loved watching the other kids almost as much as he loved the exhibits. It was a lot of fun for all of us. :-) We will certainly be back for more visits there.

Back to the house and time for naps, which is what Carson is currently 'busy' doing. He was pretty wiped out after all of the playing. Not sure what the plans are for tonight yet, but Papa Chip is arriving in town soon, so we'll do supper with him. Our main criteria for a restaurant is that they serve spaghetti--Carson's favorite. We want to load him up with carbs for his big day tomorrow. Nothing solid to eat after 3:30 AM, so we need a FULL tummy!

Tomorrow the heart cath is at 11:30 AM. The procedure will take about 2 hours. Then we will be in recovery for 4-6 hours, depending on how everything goes. We will hopefully have a chance to update shortly after we visit with Dr. Baker about how everything went. We are so thankful that Dr. Baker will be the one doing the heart cath and visiting with us afterwards!

That's all for now. Thanks for the prayers as we prepare for tomorrow. 'Til tomorrow.

Love, Carson, Daddy & Mommy

Sunday, January 4, 2004 5:58 PM CST

Happy New Year! We have had a relaxing weekend and are bundled up and ready for some really cold weather to hit. Carson and Mommy go back to "school" tomorrow. Mommy has enjoyed being at home with her boys and Carson will be able to show his teachers some new tricks.

Just a quick update as we have a few things to finish up tonight...wanted to update that the heart cath will be on Monday, January 19 at 11:30 AM. It will be at Children's Minneapolis. During this procedure a catheter will be inserted through one of Carson's femoral arteries. Dye will be injected through the catheter and will pump throughout his heart. During this time, images will be captured on equipment. They can look at his heart from multiple angles, which is a big plus. It is about a two hour procedure and we will know if he will need heart surgery or not after that. Even though his cardiologist feels it is highly probable he will, the heart cath gives additional answers and measurements that would be helpful during the preparation of open heart surgery.

Gotta run. Take care and God Bless!

Love, Carson, Daddy & Mommy

Wednesday, December 31, 2003 3:10 PM CST

Thank you for all of the messages for Carson's anniversary in the guesbook! They mean so much to us. Please see previous journal entry for our Transplant Anniversary message, if you missed it!

Yesterday was a very special day. We took some family pictures and lit a candle that we do every year on December 30 to celebrate Carson's life and to honor the memory of his donor angel. We have pics of Carson folding his hands and praying near the lit candle. Very precious. Also took lots of pics of Carson and thought so much about our donor family and the donor.

After that, we got on the road to Minneapolis! We checked into Ronald McDonald House and then off to Mall of America. Carson had a ball at Camp Snoopy. He loved the rides and it was a joy to watch his smile and hear his giggle. We met up with Marisa, the Tauers, who are in town for a liver biopsy for Megan, and Jessica, mom to Cody who has BA and is on the transplant list. We had a fun visit.

This morning we had a check-up with Dr. Baker, Carson's cardiologist, along with an echo. Unfortunately, there are a few things going on with Carson's heart and he will need a heart cath within the very near future to get measurements on pressures and a better idea of what is going on in there. Dr. Baker feels it is very probable that Carson will need open heart surgery again to correct some of the issues. That was certainly hard news to hear, but we knew a year ago that there was slight potential. It's likely that the heart cath will be in January and surgery within the next six months, depending on results of the heart cath. We have so much confidence in Dr. Baker and are so glad he didn't sugar-coat the results for us. Dr. Baker did say that surgical results would be very positive, which was good to hear.

Then off to an abdominal ultrasound at Fairview to take pictures of Carson's liver, kidneys and spleen. Smile for the camera! (Just kidding) Then we saw Dr. Sharp, Carson's GI doc, and Marci, his transplant coordinator. They are so pleased with how well he is doing. YAH! We get to move from labs every two weeks back to monthly, now that he is stable on Prograf. That was super news! We will be back to see Dr. Sharp in about 6 months.

Carson was so incredible today--he sailed through the echo, ultrasound and two doctor appointments without a fuss. We had a bag of entertainment and snacks with, which was a big help, but he was in such a good mood and so happy. We couldn't have asked for him to be any happier today! What a trooper!

Now we are settled back at the Ronald McDonald House. Hope to meet up with Dawson Rude's family, our friend Andrew (Fuzz) and Jamin, Tanya and Megan Tauer tonight and tomorrow. Very unlikely we will be awake to ring in the New Year tonight...sleep is more important! We will have breakfast in the morning and be on the road before noon for back home.

So, while the news of a likely looming major surgery is hard to take, we are reminded by looking at Carson that he is going in to this round as a much bigger, much stronger, much healthier kid with a liver that is working wonderfully. Very different scenario than October 2001. It is scary to think about open heart surgery again, as well as the prospect of being away from home for a stretch. But we will get through it. Watching him jump and hop through the halls of the hospital today, we know that Carson is a determined kid with incredible strength and energy. He is a miracle and God has watched over him through all of the ups and downs and we know He will continue to do so.

Thank you so much for your thoughts and prayers...looks like we might need a few more in the months ahead. Will post as we learn more about the heart cath.

God's Blessing to each of you and have a blessed and wonderful new year! Happy 2004!

Love, Carson, Daddy and Mommy

Tuesday, December 30, 2003 7:27 AM CST

Happy Second Transplant Anniversary, Carson! You are such a miracle!

It is hard to describe our feelings today. Of course we are rejoicing over Carson's life and how well he has done in the past two years. He is incredible to watch. It is hard to imagine how he was two years ago--he doesn't even look like the same kid!

We have thought so much about our donor family as well. How have the past two years been for them? Has time eased their loss? We hope that they find some comfort in seeing the pictures of Carson doing so well--knowing that their powerful decision saved his life. They are our heroes. Please keep our donor family in your prayers today and everyday!

We have some fun things in store for today...will update more in a few days.

Christmas was wonderful, particularily watching the activities through Carson's eyes. He had a great time and enjoyed the adventure of presents. He also loved watching the candles during the candlelight portion of church. I wish we could have taken a picture of the look of wonder on his face as he watched the candles burning around the church with the lights off. It was precious.

Grammy, Papa Chip and Uncle Chris joined us for Christmas Eve and Christmas Day. Carson almost fell asleep while opening presents on Christmas Eve! We saved his new art desk from Daddy and Mommy until Christmas morning since he was so tuckered out. He has spent many hours already at it--coloring, painting, playing with playdoh and just sitting there wishing he was doing one of those things! :-) He got many new things this year--from toys to clothes. The clothes weren't as exciting to him this year as they were last year...perhaps a trend on that front.

Much to Carson's dismay, later this week the Christmas decorations will be coming down. He has been pretty good with the tree and likes to hold only a few of his favorite ornaments. We have two manger scenes and he really likes the Baby Jesus in one of them. We keep telling him that Baby Jesus is the reason we have Christmas--it's His birthday! He did the sign for "baby" the other day when he was looking at Baby Jesus, it was so sweet.

Well, time to get moving for the day as we have lots to do! Happy New Year to all and thank you for all of the prayers you have said for Carson. They have made such a difference! God's Blessings you you and yours always!

Love, Carson, Daddy & Mommy

Friday, December 19, 2003 6:27 PM CST

Holiday Greetings to all!

The month is just flying by and wanted to get in a quick update before next week. As you can tell by the new picture posted, Carson is growing. (There are new pics in his CaringBridge photo album too.) He loves to watch the lights on the tree and for some reason there are no gifts under our tree yet. They are all neatly stacked away in our spare bedroom...as someone loves to open presents!

The three of us have been fighting colds for a week now. Carson, as usual, has come through better than Daddy and Mommy. Who is immune-suppressed here? We're so thankful for his quick recovery.

Carson's labs continue to look wonderful. We are thrilled with how well he is doing with the adjustment back to Prograf. We're still on labs every two weeks but hopefully only one more round of that and then we can push it back a bit.

Carson has had his hearing aids for one year! He has done so well with them, which we are so happy for. We had his IFSP (Individualized Family Service Plan) meeting today and made new goals for him with his teachers. They are so pleased with the progress he has made. It's especially remarkable to see the changes in the last month. We've been doing four mornings a week at Early Intervention and it has made such a difference. We are so thankful that he has such wonderful teachers that care so much about him. We also learned of what next fall will be like for Carson. They have a preschool program at Early Intervention. He will go four days a week for two hours each morning. He can even ride the bus if we want him too (that's a little too much for Daddy and Mommy right now!).

We are busy preparing for next week. Lots to do and we have a very eager and helpful little boy ready to help with everything as well. :-)

Uncle Corey is in town for a few days and we will celebrate Christmas with him tomorrow. We'll miss him next week but are happy he was able to make the trip up.

Please keep Kyle in your prayers. He is a little boy that just had a liver transplant yesterday. We know his family, as we try to see them every time we are in the Cities. He is doing wonderfully--extubated this morning and hopefully moving out of the PICU tomorrow! Also, please continue to keep Dawson and his family in your prayers as he goes through chemo.

Well, must get a few more things done--hopefully going to get some baking done yet tonight! Happy Holidays to each of you. God's Blessings to you this holiday season!

Love, Carson, Daddy and Mommy

Saturday, November 29, 2003 7:32 AM CST

Greetings! Happy Thanksgiving to all! We, once again, have so much to be thankful for. It's easy for us to name what we are thankful for whenever Canadian (in Octover) or American (in November) Thanksgivings roll around. Carson is living proof of how God makes miracles happen. We are also very thankful for our donor and our donor family. Their decision certainly changed our life and saved Carson's. It's impossible to ever thank them the way we would want to, but hopefully we can convey that gratitude through the letters and pictures we send.

A few updates and prayer requests:

We had a nice Thanksgiving with family--Grammy, Uncle Chris, Newburgh's, Great Uncle John and Great Grandma Brager. Of course, we all ate too much food!

Carson has new earmolds once again for his hearing aides--still blue. He's on his fourth set in less than a year, so that tells us someone is growing! Who would think your ears grow that much?

Carson has exploded with mimicing signs! We're seeing some of the incredible benefits of his intensive speech therapy. On November 23 he did 10 new signs! Between Monday and Tuesday he did nine more new ones! He hasn't connected the sign with the object or action in all cases, but he loves making new ones and copying Daddy or Mommy. It is very exciting for all of us. He is rather proud of his accomplishments!

We're off to bruch at Grammy's house then we hope to start decorating the house for the holidays. Still wondering which ceiling the tree would look best hung from...

Now for some prayers...

Please pray for Dawson. We met Dawson and his family about two years ago. His Mommy gave him a kidney. He went on his "Make a Wish" trip in October and was just diagnosed with PTLD (lymphoma) this last week. PTLD is soemthing that can happen with EBV and something we have been so scared of Carson developing, so the news that Dawson has been diagnosed hits close to home. This is such a special family and they have been through so much. If you would like Dawson's website, email us and we will pass it along.

Next, please lift up Dru Sjodin and her family in prayer. She is a student from the University of North Dakota in Grand Forks that was abducted a week ago today. Her family has started a website--it is http://www.finddru.com/ Someone out there knows where she is, let's all pray that she is found soon and returned alive to her family.

We continue to keep many "liver kids" in our prayers as well.

Thanks be to God for all He has done!

Love, Carson, Daddy & Mommy

Saturday, November 15, 2003 7:29 AM CST

Once again, it's been a bit since our last update. No news has been good news as Carson is doing so well!

Let's see what we have been up to--

Our great friend Marisa came to visit in October. It was so fun to see you and catch up! We had a great trip to Buffalo River State Park and got pics of Carson playing in leaves and enjoying the outdoors. Thanks for coming up, Marisa!

As mentioned in our last update, Carson is two years out from open heart surgery. We think back to that time and think of so many things. Little did we know when we left home on that October day for Minneapolis that we wouldn't be returning for over three months. Little did we know that we'd not only be getting his heart fixed but that we'd also bring Carson home with a new liver and the amazing story of a miracle. Little did we know that we would meet countless people who would become some of our closest friends. Little did we know that Carson was about to weave his way into the hearts of immeasurable people around the world who would pray for him as he battled for his life. Little did we know many things two years ago...

We enjoyed a weekend in Winnipeg seeing the Kitch family folks and Carson had a blast with his cousins, Brody and Hannah. Nana and Papa had recently returned from an Ireland trip, so had pics to show and stories to tell! The weather wasn't very nice, but the kids enjoyed the pool and play area at the hotel!

In the end of October Carson began speech therapy four days a week. Pretty intensive, but we wanted to give it a try. Essentially he is doing awesome with it! They are starting with mimicing actions, will move to some signs and eventually sounds and then words. It's hard work for him, but he is doing well, so we will be continuing this plan of action.

Carson was a cute little frog for Halloween. It was a cold night, and Carson can't eat most candy (no chocolate, since he has severe dairy allergies) we only did a few houses in our neighborhood. Went to Grammy's church as they had fun activities set up and it was inside (smart idea)! Also stopped up to Innovis Hospital to see some of Grammy's co-workers. Carson was less-than-thrilled about being in a hospital. He certainly picked up on where we were quickly! All of the nurses in dark blue uniforms made him even more uncomfortable. So, we found a little waiting room play area and he was a happy camper.

In early November, Mommy and Daddy got hit with some bug. Mr. Immuno-suppressed came through just fine (go figure) but we (Mom and Dad) felt pretty rough for a stretch. In the middle of all of it, Mommy went to Santa Fe for a conference. It was a great conference and Santa Fe was interesting. Beautiful culture, but the altitude and dryness were tough.

Carson's new tricks are adorable (but we're not biased). He loves to turn in a circle, move his arms up and down and dance with moves that Papa Chip taught him. It's really cute to see Carson dance. He is also "Mr. Affectionate" and loves to give kisses. Oftentimes in the evenings, as we all sit and read books, he will get up and come over an kiss Mommy and Daddy each on the knee. It's so funny. He has loved the fact that it has warmed up--all of our snow has melted and it looks to be above freezing for the next week. So, lots of outdoor time. Yesterday there was even a trip to the zoo!

Our other big news is that Carson's EBV levels are the lowest they have ever been since we started watching them! Because of this, we were able to get him switched back to his original anti-rejection drug. We are really happy about that. The one he has been on for about a year caused major gum overgrowth and we know he was close to needing his gums cut back. (That just sounds painful, but many kids need it several times a year on this drug.) Not that the one he is back on doesn't have side effects. We have to go back to labs every two weeks for a stretch just to get his levels in line, so that will be tough as we have loved monthly labs. Hopefully we will be back there before too long!

That's about all from the Kitch household. We're hoping to have a productive weekend with some housecleaning and Mommy getting lost of homework done. We're hosting Thanksgiving in a few weeks so need to start thinking about that as well. Hope all is well with you and yours...God's Blessings to you and your family.

Love, Carson, Daddy and Mommy

Thursday, October 23, 2003 7:05 AM CDT

Good morning!

Quick update--we had labs last night and it was an awesome draw! After that, Carson watched Mommy and Daddy get flu shots and then it was his turn. Before that the boys took Mommy out for birthday supper--yum, yum!

Just had to drop a note to say how proud we are of Carson. Two years ago today he was in open heart surgery to fix the hole in his heart. Little did we know what was in store for us at that point. To look at Carson today you would never guess that he has defied all odds and is a walking miracle. We are amazed at what a little boy he is becoming!

That's all for now. Gotta run.

God's Blessings to each of you, Love, Carson, Daddy and Mommy

Sunday, October 5, 2003 2:13 PM CDT

Greetings! It seems like only a week or two ago that we last updated. Fall is certainly in the air and leaves are falling everywhere.

Let's see, September had a few fun events. Carson started school again--now he is attending playgroup twice a week. There will even be some changes this fall so parents leave the room at some point to help transition the kids even more. When Daddy comes back into class Carson is very clingy. :-) He is at such an interesting stage right now and certainly finding his independence more and more. Then there are times that he wants to be held and really clings to us. Oh the fun of todderhood!

Carson's newest trick he learned this last month was puckering up and giving smooches! It's so cute.

Mid-September brought Papa Chip here for Big Iron, a Ag trade expo. Carson loved the machinery (a big playset?) and had fun "driving" some John Deere tractors.

Carson's hearing aids have been adjusted again and his is responding well to the changes. He even brought Daddy his hearing aids once earlier in September wanting them put in!

Carson gave us a scare at the end of September--he had labs and his bili was up to 2.6 (normal is under 1.2 and he usually runs 0.3). We re-did labs two days later and it was fine. Lab thinks the blood for his LFT's may have started to clot. Whew! Guess Carson just wanted to make sure no one's blood pressure got too low!

Carson has really enjoyed playing outside (now that the mosquitoes are gone). We have two dogs on the other side of our back yard fence that he adores and the feeling is mutual. He loves to play with them. We love the arrangement--Carson gets to play with two dogs and we don't have to take care of them! His two favorite critters are still our indoor cats--Sylvester and Tigger. They are not fond of the fact that Carson can almost run now.

October looks to be a busy month as well...we're going to Winnipeg to see family sometime. It will be so fun to see everyone again and hear about Nana and Papa's recent trip to Ireland!

Today, Bill (one of Carson's Godfathers) ran in the Twin Cities marathon. He raised money and ran for the American Liver Foundation and did it in honor of Carson. We can't wait to hear all about it, Bill, and wish we could have been there to cheer you on!

Mommy's cousin from Seattle arrives by train tonight and will be here for a few days. Lisa hasn't met Carson, and we have lots to catch up on!

Overall we're all staying healthy. Carson has had a cold off and on but seems to have beaten it. Daddy is sleepy today and Mommy feels a bit of a cold coming on...where is the orange juice? We'll all be getting flu shots soon, so hopefully we won't have to worry about the flu.

Time to get a few more things done around the house. Carson is napping and it's amazing how much one can get done during that time! He has been such a "helper" lately. Last week he broke the lock on the lazy susan door and proceeded to open the 2 liter olive oil container and dump the remaining 1/3 of the container on the floor. :-) Guess it was his way of saying we needed to wash the floor.

Hope all is well with you and yours. Take care and God's Blessings to you!

Love, Carson, Daddy and Mommy

Sunday, August 31, 2003 7:14 AM CDT

Can you say "where has August gone?" We can't believe how quickly the month has flown by.

Let's see...what's happened?

Carson had 2 weeks of swimming lessons in August. He did really well and liked to back float. Quite the little fishy. He really improved over the course of two weeks. Will certainly be signing up for more swimming lessons next summer as he had such a fun time.

Daddy finished his thesis in early August, so he officially is done with his Master's degree. Hip, Hip, Horray! How exciting! We're so proud of him!

Nana and Papa came for a visit and couldn't believe at how much Carson had changed since May. He's grown a lot this summer and is now a pro at walking. He enjoyed showing off all of his new tricks and even more enjoyed such a captive audience.

We celebrated Carson's 2nd Baptismal Birthday on August 12. What a special day. This year he wanted to hold his candle (we light his Baptismal candle each year as a symbol of God's eternal love for Carson) and was quite angry that he couldn't touch it. He was much happier when the candle was out and the wax cooled so he could hold it. :-) Guess it's the little things that can be really big things!

Carson also got new blue earmolds for his hearing aids this month. This is his third set, so he certainly is growing. They are so bright and shiny!

Carson has made several trips to the zoo as well and loves to walk all over the zoo BY HIMSELF. He adores the goats and giggles at anything that does something even slightly funny. He has also made friends with the two puppies in the yard behind our house. He'll put his fingers through the fence and belly laugh when the dogs lick his fingers. He loves critters of all kinds, but our two cats are still #1 on the list of favorites.

This last week was a busy one as classes began at NDSU. Daddy is teaching an Introduction to Anthropology class--it's one evening a week. He really enjoyed the first class. On the same night that Daddy teaches, Mommy decided to take two classes. She is starting a Ph.D. in Education program that is new at NDSU. So, busy evening for the Kitch family! Carson is in great hands with a sitter and convinced her to spend lots of time outside to play this last week!

Speaking of outside, another one of Carson's newest tricks is picking tomatoes off of the vine. We're still working on only picking the red ones, but a few green ones get picked each time. It's so cute how he'll squat down and analylze the situation before making his selection. What a gardener!

We're enjoying the Labor Day weekend. Beautiful weather and the bugs are staying away. Have to enjoy this while we can.

Carson had labs this week--all looked pretty good. White count was up a bit and last night he had a mild temp. We're keeping a close eye on it and hope no funny-business is happening. Of course, the last time we were in the ER was the 4th of July, so maybe he has a thing for holiday weekends?!? Let's hope not.

Time to get ready for church. Hope all is well with you. Thanks for all of your prayers. Take care!

Love, Carson, Daddy and Mommy

Sunday, August 3, 2003 8:03 AM CDT

Greetings! We hope this finds everyone doing as well as things are in our home!

Carson got his ear tubes out last Thursday and new ones put in at the same time. Today is the "go ahead" to get his hearing aids back in, much to all of our delight. He’s basically been without them for about a month and we’ve had a very frustrated little boy on our hands.

Carson is down to two medications plus vitamins. He takes two doses of meds at 8 AM and two doses at 8 PM. (Vitamins are typically put into his juice cup.) We are thrilled that he is doing so well and down to 2 meds. That's the lowest he's ever been on since his diagnosis over 2 years ago. We're also on a monthly lab schedule and his labs last week looked great. We'll have an EBV level in about a week, so we're praying all continues to look good with EBV.

About 2 weeks ago Carson started really taking off and he is now walking everywhere. It's so fun! He loves to carry things with him while he walks and has mastered going from sitting to standing without having something or someone help him up. It is so special for us to see him reach this major milestone. What a miracle!

A little over a week ago Carson got to see Uncles Corey and Chris as they passed through to join up with Grandpa Chip for a big northern Canada fishing trip. Mommy, Corey and Chris hadn't been all together since Carson's transplant day, so it was fun to take some pictures (with a much bigger and healthier Carson).

Also a little over a week ago, Carson's liver buddy Megan celebrated one year post transplant! Yippee! Megan and her family had a fun party in their backyard to celebrate. It was fun to be a part of the celebration. :-)

Last week we also bid well wishes via the telephone to Uncle Derwin and Auntie Dana as they begin their newest teaching assignment in Sri Lanka. What an adventure! We are so thankful for email and look forward to their updates. :-)

We just returned from an exciting little trip to Minneapolis--only our second "fun and non-medical" trip down in over two years. We were interviewed and filmed for an upcoming LifeSource video. It was so interesting and we had a great time. Carson was tired, but played well at a nearby playground for the crew to film. The video should debut sometime in September. It was such an honor to be a part of this project.

While in the Cities, we invited Marisa, Amy, Brad and Carly over for some swimming time at the hotel pool. It was fun and we got to see and enjoy Marisa's pictures from the 2003 World Transplant Games in France. She took home 1 Gold and 3 bronze medals! You are such an inspiration, Marisa! We had a great evening with everyone.

Since we were on the road by 6 AM, we were tuckered out and the three of us were in bed and sleeping by 9:30 PM that night. That felt so good!

Tomorrow we start swimming lessons (again). Hopefully no infections rear their ugly heads so this time we can go more than once!

Carson has a therapy break for August, as Early Intervention is off this month. In September he will start up with playgroup twice a week plus some continued in-home therapy time. We're starting a new picture exchange system with Carson to hopefully aid his language development.

This afternoon we're heading to a Red Hawks game with a bunch of people that Mommy works with. It should be a beautiful day and lots of fun.

That's all for now. Take care and God Bless!

Love, Carson, Daddy and Mommy

Friday, July 11, 2003 4:15 PM CDT

Greetings!

So much has happened since we last update! Here is the scoop:

We had a lot of family over for the 4th. Sad part was the three of us weren't here to visit with all of them. Instead we spent 4 and a half hours in the ER. Carson had some blood in his urine, so off we went. Turns out it was a urinary tract infection. He is on an antibiotic and is responding well. Whew! Dr. Burns, Carson's first doctor, was in the ER, which made us feel a lot better. He knows Carson and was impressed to see how much Carson had grown.

On Monday we learned that Carson's infection was a bit more complicated after the cultures came back. Fortunately, the antibiotic has it under control and Carson is doing great.

We started swimming lessons on Monday but in the midst of everything, Carson's right ear starting draining. We thought ear infection (which would have been his first), so got him in to see his ENT last night. It is not an ear infection, but rather a bunch of gunk (for lack of a better word) that is trying to work its way out. His tube is trying to come out too, so that is part of it as well. The doctor worked on clearing some of it, but it is likely Carson will need day surgery within the next bit to have the tube removed. Never a dull moment.

So, swimming lessons have been sidelined for now and we will start up with them in August.

We had very exciting news this week too. Carson's EBV level is very stable and he was taken off of valcyte! WOO HOO! After we are done with the antibiotic for his UTI we will be down to two medications plus vitamins!!!!!!!!!!!!!!!!!! AMAZING!!!!!!!! (Can you tell we are excited?) In other good news, we were also given the thumbs up to go to monthly labs. This is equally amazing and we are thrilled beyond words about that. If Carson could talk we know he would have a lot to say about it as well.

On Tuesday, Carson got to meet his Great Auntie Susie. She lives in Louisiana and was visiting in the area. She and Great Auntie JoAnn were over for supper, along with Papa Chip and Grammy. It was a fun evening. Carson was tired but managed to sit nicely for pictures. It was so fun to see you all!

We also learned on Tuesday that LifeSource, our area's OPO (Organ Procurement Organization) wants to interview us and feature Carson in a promotional video. There will likely be two donor families, two recipient families and a coordinator featured. We feel so honored to be chosen. We will be going to the Cities for production and will keep you posted when we know more!

In very sad news, Mommy's doctor, Dr. Renee Schwandt, died this past Tuesday evening. She was an amazing young doctor and a remarkable person. She delivered Carson and was so amazing with both of our pregnancies. She will be greatly missed by many. Please keep her husband and children in your prayers.

We want to wish Marisa and Jamie good luck as they represent the United States and Canada, respectively, in the World Transplant Games in France! We will be cheering both of you on! You are wonderful representatives of your countries and can't wait to hear about your trips! Go, ladies, go!!!

It is Daddy's birthday tomorrow and Carson and Mommy have something special planned. :-)

Well, that is all for now. We hope the next few weeks are quieter than the past week has been! Take care and God's Blessings to you!

Love, Carson, Daddy and Mommy

Tuesday, July 1, 2003 8:25 AM CDT

Good morning!

Happy Canada Day! :-)

We just got back from our big trip last night. It started last Wednesday morning when we trekked to the Cities. We had a GI appointment that afternoon. All went well with Dr. Sharp and we were even able to ditch a medication! Carson is down to 3 meds plus vitamins! We are thrilled! Next check-up is his at his two-year transplant anniversary in January 2004 (when we'll also see his cardiologist).

That evening we met up with Marisa and the Fausts. We had a great time and Sami, Kyle and Carson had a ball at Camp Snoopy. When we met there in January, Carson had an okay time on the rides. Now he had a fit when we got off of one. It was a fun evening.

Thursday morning found us cheering on Marisa's turtle (Leaping Livers) at our hospital's Turtle Derby fundraiser for Child Family Life. It was so much fun and an event we had heard a lot about during our time at Fairview. Carson liked watching the clowns, turtles and people, but the wind was so cold, so we didn't stay as long as we would have liked. We're planning to enter a turtle for Carson next year so if you have any good names for his turtle, pass them along!

After that we drove on to Green Bay. Quite a few families gathered there on Friday and Saturday to meet and listen to a number of speakers. We learned a lot and it was fun to see some familiar faces and meet some new folks! Carson loved playing with and watching the other kids. He also had a super time in the pool. Unfortunately, he touched some dairy products on Friday evening and we had a very sick boy for several hours. By Saturday he was better, but still not 100%. Since it was so rainy (so we couldn't go to Bay Beach) we headed for Uncle Chris' place in Eau Claire, WI. We settled in and did laundry...fun!

On Sunday the four of us wandered around the Eau Claire area and found a beautiful rose garden and went to a park--Carson Park to be exact. It's a beautiful park. There were mini steam trains for kiddy rides and Carson loved the train rides. Fun day!

Yesterday we bid farewell to Uncle and continued our trip home. We had lunch with Jill and Andrew (Fuzz). It was the first time we had seen Andrew since his heart transplant in April. He looks awesome!!! It was so great! We also stopped to meet Jonah--the new baby of Summer & Jeremy. Summer works on the PICU at Fairview. Jonah is such a sweetie!

Then it was time to head for home. Carson was less-than-thrilled to be in his car seat again, but we made it. :-)

Mommy is off of work this week, so we're planning a lot of relaxation.

We'll be getting together with some of Mommy's family on the Fourth of July, as her uncle and aunt from Seattle will be in town. Next Tuesday Mommy's Auntie Sue from Louisiana will be in town--she is so excited to meet Carson. :-) Carson also starts swimming lessons next week--we go for two weeks in the evening. Should be fun!

That's the latest from the Kitch household. Hope all is well with you. Take care and God Blessings to you!!!

Love, Carson, Daddy and Mommy

Thursday, June 19, 2003 6:36 AM CDT

Good morning!

Okay, it's really hard to believe that it's been almost a month since our last update. It truly means "no news is good news".

We have been enjoying the weather, now that it is so beautiful out. Carson adores being outside and will sit by the door with his shoes, hat and sunblock that he has gathered and point to the door to go outside. It's so cute! He is really enjoying his playset and WE'RE loving the fact that the yard is fenced in!

Let's see, some updates...

Carson is getting a little braver and starting to take more steps on his own. We've had him walking some very long stretches and his balance is great. He just isn't motivated to walk everywhere--scooting on your bottom or crawling are much safer, right? We're getting there...

Carson got his first haircut from Mommy on Tuesday evening. It's really short--but not buzzed--since he gets so hot under hats when he's outside. It's a good "summer haircut". And at the rate his hair grows with the fact that he is on Neoral, we'll be having haircut sessions every couple of weeks! Mommy is actually quite proud of her new clipper and the results!

Carson's labs look super. EBV was down to about 1,000 and now is about 3,400. A little jump but not nearly what it's been.

Carson has been busy growing too. He's at 28 1/2 pounds and such a good eater. He loves his fruits and veggies. Earlier this week he had 6 different kinds of fruits in one day! Just wait until our garden starts producing...

We are amazed at the fact that today is Carson's two year Kasai anniversary (his first surgery that diagnosed him with Biliary Atresia). Oh what a difficult day that was! We are thrilled with how well he is doing two years later!

We would like to ask your special prayers for good friends of ours. We've talked about Megan, she's a 6-year-old that had a liver transplant 11 months ago. Well, Megan's Grandpa was recently diagnosed with a form of leukemia. Please keep Merrill, his wife, Linda and Megan and her parents, Jamin and Tanya in your prayers. Merrill also has a caringbridge site, so if you would like to watch his great progress, email us at tandrkitch@yahoo.com and we'll send you the link!

Take care and God Bless!

Love, Carson, Daddy and Mommy

Saturday, May 24, 2003 8:14 AM CDT

Good morning!

We're ready for a wonderful weekend this Memorial Day weekend. The weather looks like it's going to be great--80's tomorrow and Monday! We are going to plant our garden, plant a bunch of plants and landscape around our new tree out in the front yard. Also going to put one more layer of stain on the deck floor so it is good to go for hopefully a few years. The yard got fenced a little over a week ago, so now a little certain someone is having a ball back there being able to do his own thing. It's going to be a great summer!

Daddy is feeling great--seems like we can finally say that he is over mono. YAH! Mommy has had a sore throat and is stuffed up this week--some viral stuff. :-( It's not too bad and she feels better than she did earlier this week. Soon we'll be "full strength" again!

Fairview confirmed that Carson's CT's looked great and we can wait until June 4th do do labs again! We love the fact that we are down to labs every three weeks. It makes such a difference on Carson's veins.

Last weekend we went to Winnipeg and had a blast with Uncle Derwin, Auntie Dana, Uncle Ian, Auntie Rhonda, cousins Brody and Hannah, Nana and Papa, Great Uncle Ken, Great Auntie Lila, cousins Carter and Corvin. The kids had a great time in the pools and play areas of the hotel we stayed at. It was just fun to get together and see how much the kids had changed. Sunday was soggy outside, but Saturday had been great and we had a nice time at the Forks that day. :-)

Today is our good friend Marisa's 15th Anniversary Liver Transplant Party. Marisa was 15 years on May 1! What an inspiration! We wish we could have been there today, Marisa!

Our buddy Andrew (Fuzz) got home from the hospital a week ago today--four weeks and one day after his heart transplant. Please pray for his rehab and continued recovery!

We were at the zoo on Thursday evening and Carson had a great time. It's the second time we've been there this year. Carson was okay'ed by our transplant center to pet the critters in the farm area petting zoo (reptiles and birds are still no-no's) as long as we scrub up big time afterwards. He giggled so much and squealed as the little goats sniffed at his fingers. It was so fun! We're going to be there lots this summer!

Well, time to get moving for the day. Hope everyone has a great weekend! God's Blessings to you and yours!

Love, Carson, Daddy and Mommy

Thursday, May 15, 2003 2:58 PM CDT

Quick update:

Carson's bili is way back down into the normal range! Yah!!! The CT report showed no major changes since his last CT, so we should be in the clear on that front. The scans are being sent to Fairview for them to take a look at too.

So, a big sigh of relief can be heard from South Moorhead!

Thank you for all of your prayers!

Love and God Bless, Carson, Daddy and Mommy

P.S. We also found out that Carson's EBV was 1100--that's two low levels in a row!!!! Ultimately, it needs to be lower, but this is super for Carson, so we are thrilled! :-) Have a great weekend!

Wednesday, May 14, 2003 6:14 AM CDT

Good morning,

We had a very quiet and cozy weekend--lots of snuggles. It was a great Mother's Day too. Very special. We had hoped to do a picnic or go to the zoo, but it was a bit rainy and very windy.

Yesterday was Carson's CT. We also managed to get some labs out of him by pulling back on the IV. We should know how his LFT's (liver function tests) look later today. The scans and radiologist's report are being sent to Fairview ASAP for them to take a second look. We'll just have to wait and see what the next step is.

Today is Daddy and Mommy's 9th anniversary, so we're going out for the night--just the two of us! It's hard to believe it's been nine years and at the same time, so much has happened during that time. It has flown by though!

That's it for now...will update later with lab info. Thank you for all of your continued prayers.

Love, Carson, Daddy and Mommy

Friday, May 9, 2003 10:42 AM CDT

It's been a busy few weeks. Seems like we always say that.

Carson's birthday party was lots of fun. He loved opening presents but seemed to enjoy the cards even more, which was interesting. Hope that fascination continues. It's so hard to believe he is now two.

Thanks to the Grandparents, we've gotten a lot of outside projects done. It's certainly not a motivator for Travis to get or keep mono for all of the projects to get done by others, but we really have appreciated all of the help. It's a rainy day today, otherwise we'd be getting our fence in. Should be early part of next week. That will be great for ALL of us!

The Love your Liver Walk was fabulous! We had a lot of walkers and were very pleased with the outcome. We exceeded our fundraising goal and just learned today that even more pledges have come in. It was a nice morning and I think (and hope) everyone had a ball. We will soon start to make plans for next year!

Daddy is still really sleepy. His new nickname is "Mono Man". Hopefully he starts to take an upswing soon.

We had labs on Wednesday evening--we've been approved to go to labs every three weeks. Carson's last EBV level was way down, so that was great. Not sure how long our three week lab stretch will last, however, since we have learned yesterday that Carson's bili is up some. It was up but very slightly last lab time and now it is up a bit more. We heard from Transplant today--his surgeon wants a CT scan ASAP to check his bile duct to make sure it is not clogged or closing off. We are trying to be very optimistic and hope all will be fine. We hope to get in for the scan very early part of next week. So, keep those prayers coming!

That's all from here. We're looking forward to a quiet and relaxing weekend. Happy Mother's Day!

Love, Carson, Daddy and Mommy

Friday, April 25, 2003 7:35 AM CDT

Quite a week.

Our buddy Andrew (Fuzz) is doing really well after his heart transplant. He is exceeding everyone's expectations, which is wonderful. He was waiting for a new heart for almost 21 months (one day shy of). Please pray for his continued strength and progress.

Daddy had another mono relapse last weekend and has taken it easy this week. We just hope he gets over this thing!

Nana and Papa have spent most of the week with us. Papa did lots of outside projects for us and Carson kept Nana busy. :-) We had a little birthday party last night too, which was fun.

Carson's birthday party is tomorrow, so lots to do before then. Looks to be a nice day out, so that will be great.

We have just a little over a week before the Love Your Liver Walk! It will be fun and we're excited to see how many walkers there will be.

On a very difficult note, a little liver buddy of Carson's, Jayli, was called home to be with Jesus last night. Jayli was almost 2 1/2 years old and had the same liver disease as Carson. She was recently re-listed for her third transplant. Unfortunately, her little body had had enough. She is able to play and dance and be tube and pain free now with the angels, but our hearts ache for her family. Please keep them in your prayers. She was an amazing child.
God Bless. Love, Carson, Daddy and Mommy

Saturday, April 19, 2003 7:23 PM CDT

Lots to report:

Carson took his first steps this week--on Wednesday! It was wonderful and both Daddy and Mommy got to see them. :-) Ironically, he took his first steps in a hospital. It was the same hospital he was born in almost 2 years ago...

Tried labs on Wednesday night--2 pokes and no blood. Tried again this morning and got a little blood. Enough to do some of the tests, but not quite all. Carson is so strong and getting tougher and tougher to draw on. So, we need some prayers in that department. Carson bounces back great, but our wonderful lab woman feels so badly! His poor arms.

Carson had his two year pictures taken on Thursday--they are adorable, but we're not biased. I'll try to post them on the Caring Bridge picture link (not the webshots one).

Our most exciting news came early this morning--our buddy Andrew (we've mentioned Fuzz quite a bit) is getting his heart transplant today!!!!!!! We talked to his mom earlier and all was going well in surgery. We are so happy for them--he has been waiting for almost 2 years. What an Easter miracle. So, please keep Andrew, his family, his transplant team, and certainly his donor family in your prayers.

Go, Fuzz, go!

Love, Carson, Daddy and Mommy

Monday, April 14, 2003 7:40 AM CDT

Good morning. It was a beautiful weekend here--we reached 89 degrees yesterday! WOW! We almost had to get the air going. :-) Not bad for April 13th.

We got word late last week that Carson's EBV level shot up again, big time. UGH! So, they have changed the treatment plan for the med he is on. He now takes an anti-viral med twice a day and gets more of it. Hopefully it helps. Other than that, his numbers look super. Still have to stick to labs every two weeks, so we're hoping this EBV straightens out soon!

Daddy is perking up more and more. Still has lots of resting to do, but he has turned the corner.

We've been asked to speak about Carson's story at a few places this month--for medical staff at a local hospital and we'll be keynote speakers at a luncheon on Carson's birthday. What an honor! It's especially sweet because it's National Donate Life month this month.

We are also amazed that two weeks from today Carson turns TWO! Where has that time gone? He had obviously changed so much in the last two years, but we can't believe his progress in the past year.

We hope to get his two year pictures taken this week and then we'll be decorating Easter eggs later this week. We have such a little artist on our hands that that will be a fun project.

That's all for now. We continue to pray for all of our troops overseas. Take care and God's Blessings to you! Have a Happy Easter!

Love, Carson, Daddy and Mommy

Monday, April 7, 2003 7:36 AM CDT

Good morning. Time is sure flying by...

Carson's labs are great. We had labs last Wednesday evening and everything looks super. Well, we don't know about the EBV level yet, maybe late this week or early next. Hopefully it looks just as great and (maybe) we can go down to labs every three weeks. That would be so nice.

Carson gets new earmolds for his hearing aids today. Your ears are one of the few things that continue to grow your entire life and his little ears are sure growing. It's just the inner part, not the hearing aid itself, that gets replaced. Much more affordable too!!! Of course, the new earmolds are blue just like his current ones.

Looks like it's going to be a beautiful week--in the 60's. We couldn't be happier.

We started a "Baby Signs" class last week. It's 2 hours every week for 9 weeks. We can already tell that we will be learning a lot of signs appropriate for Carson's level. It's for kids 6 months-2 years. It's going to be great!

Our big news is that Daddy has mono again. He's had it about a week and a half. SO, this means LOTS of rest for him so he can get over it successfully this time. We think he didn't ever get over it from last summer. :-( He has slept a lot in the last few days, which is good. Please pray for his continued rest and increased strength.

We're still working a lot on the Liver Walk. It's May 3. If you'd like to be a part of Team Carson or start your own team, let us know! It's going to be fun.

Well, that's all from here. Ironically, it seems that Carson's immune system has been the strongest of all three of us lately. Thanks for all of your prayers. Take care, and as always, God's Blessings to you!

Love, Carson, Daddy and Mommy

Tuesday, March 25, 2003 7:53 AM CST

Good morning! Sorry about the delay in updates--busy times around our house. We're so happy that spring is in the air.

We had a whirlwind trip to the Cities last week--barely gone over 24 hours. Had CT's and labs. We got the results of the CT's and everything looks GREAT! We're very happy. Carson's EBV levels continue to bounce around--one high, the next low, etc. which is frustrating but the biggie is how the CT's look, so we are very happy. Certainly not out of the woods on the EBV stuff, but we have a little sigh of relief.

For some crazy reason, Carson's platelets and hemoglobin took a dip. We had labs after CT's. His hemoglobin had been at an all-time high of 13+ just two weeks prior. Everything is still in a good range, but we're rechecking those two labs tomorrow. Took 6 pokes to get the contrast IV started and labs drawn, so could be part of it as well. His veins have really gone downhill and we hope they get better as he grows since he has a lifetime of pokes ahead of him!

It was wonderful seeing Marisa--thanks for coming to see us! We also got to see many familiar faces on the PICU and 5D transplant floors. Carson showed off for Summer and Kate before we left for home. :-)

We are really gearing up for the "Love Your Liver" Walk on Saturday, May 3, 2003. The local community council of the ALF (American Liver Foundation) is busy, busy with fun plans for that day. If anyone is interested in forming or being a part of a team, let us know (you can email us below). It's going to be great! All of the funds for this walk are dedicated to ALF research.

In anticipation of the walk, 4 "liver" families got together a few weeks ago and had adorable pictures taken of our "Dream Team"--four kids that have or have had biliary atresia. They all live in the Fargo-Moorhead area, so it's a great support system.

We continue to lift up many kids in our prayers--Aiden, Jayli and Erin just to name a few. Please keep them in your prayers as well.

We'll try to get some new pics posted of Carson. We've almost maxed out the Webshots albums and we don't want to delete any more pictures, so we'll keep you posted. We are amazed that Carson will be 23 months old this Friday. Where has the time gone? He is busy. He adores climbing, the higher the better, much to Daddy and Mommy's dismay. He had a blast with sidewalk chalk this weekend (it was over 70 degrees out, so we all had fun). Can't wait for lots of outdoor time this spring, summer and fall.

He's fighting off a cold that has developed a yucky cough. Hope this doesn't last too much longer. He HATES the cold medicine but at least it gives him some time to rest and not cough. Hope his little immune system will rally quickly.

Our thoughts and prayers are strongly with all of the troops right now. Certainly is a scary time. We found out that a family member has been activated, so it's even closer to home.

That's all for now. Take care and God's Blessings to you and your family.

Love, Carson, Daddy and Mommy

P.S. Update at 5:30 PM on 03/25/03: The U.S. Transplant Olympics will be held at the University of Minnesota in late July/early August 2004! Our transplant center is at the U, so we're really excited. Carson is going to be an Olympian! :-)

Friday, March 7, 2003 6:33 AM CST

Good morning. Brrr! It is certainly still winter. We got some new snow yesterday and due for more tonight. We're sure hoping spring is around the corner soon.

Carson continues to keep us hopping. We received word earlier this week that the transplant team wanted repeat CT scans from what was done here in January. The CT's weren't as clear as they'd like. It's really important to get a good look at all of the lymph nodes. We all wanted to wait to schedule the CT's until after we knew what his latest EBV level was. We just found out that it is down to one of the lowest levels it's been in a long time. His levels are basically on a "ping pong pattern". Now we're looking at CT's in a few weeks at Fairview. By then we'll also have the new level back from labs from Wednesday, March 5. More waiting game. Guess we're getting really good at it by now.

We bought Carson a summer hat after labs Wednesday night. He needs lots of protection from the sun, so we're big into sunscreen and hats. Last summer it was a struggle to keep a hat on him. We had one with a chin strap, so that worked well. Last night we just gave him the hat and he clowned around all night with it. Put it on, take it off, put it on, take it off. Sometimes he'd cover his eyes and pay "peek". He was just a goof-ball! We got some adorable video. He wore it quite a bit, which is great. Maybe this summer won't be such a fight with a hat!

Well, we need to get going. Hope everyone has a great weekend! Take care and God Bless!

Love, Carson, Daddy and Mommy

Thursday, February 27, 2003 4:17 PM CST

Greetings! It's amazing how quickly the time seems to fly.

Carson is doing well. Labs went so well last Saturday morning. Made all of us cry tears of joy!

Carson has been eating so much this week. Seems like he is always in the high chair. That's okay by us!

He is learning new tricks--it's so cute. Last night he was clicking his tongue. That's "big boy" stuff.

Carson had his first haircut on Saturday. He looks like such a big boy now. He sat on Mommy's lap and was so good! Guess he's used to being poked and prodded, so a haircut was no big deal!

Not much else to report. We will hopefully know his latest EBV level in about a week. The rest of his labs look wonderful. YAHOO!

Hope everyone has a great weekend. Take care and God Bless!

Love, Carson, Daddy and Mommy

Wednesday, February 19, 2003 7:30 AM CST

We had a wonderful weekend full of snuggles, hugs and kisses. Carson was full of smooches for Mommy. We went to Disney on Ice on Saturday and had a pretty good time. Carson didn't like the witch scene in the Snow White portion. He screamed. It got better though!

Mommy had the day off on Monday, so more snuggles were in order. It was great.

Last night was busy--a Fargo-Moorhead American Liver Foundation Community Council meeting and Mommy had a black and white photography class. She has photography classes for the next 3 weeks. Wonder who will be her subject for her homework assignments?

We got word late yesterday that Carson's EBV is way up--44,000. We will be visiting with his coordinator this morning. It's doing the fun jumping around. His last one two weeks prior was 1,700. Fun, fun, fun. The good news is no sign of any chicken pox yet. We have another week to go for this round to be "out of the woods" on the pox. A few months from now we can check a titer on Carson to see if by any amazing chance he developed immunity to chicken pox, which would be the silver lining to all of this!

Hope all is well for each of you. Thank you again for all of your prayers. God's Blessings to each of you!

Love, Carson, Daddy and Mommy

Friday, February 14, 2003 2:31 PM CST

Happy Valentine's Day to all! What a wonderful day this is!

First of all, Carson has officially made it one year as of yesterday without a hospital overnight! Yah!

One year ago today we came home for good after transplant and the line infection stuff.

Ten years ago today, Travis proposed and I accepted to be his wife. What a great day that was!

And today--today I get to go HOME to my two favorite boys and snuggle with them. I just saw a doctor and she declared me safe! I am thrilled beyond words. Just a few more hours and we'll be together.

On that note, not much else to say. We are giving thanks to God for watching over and helping us through this challenging time. Take care and God Bless!

Love, Carson, Daddy and Mommy

Tueday, February 11, 2003 6:36 PM CST

Just a quick update (we're all pretty tuckered):

Carson had had vomiting and major diaper action since yesterday morning. No fever, which was good. He was exhausted by last night and got some sleep (but still had 5 poops through the night). This morning was a bit rough, but by this afternoon he seems to have improved. Still on not a lot of foods, but the ones he's on (all soft) he's kept down.

The shingles are starting to behave better and better with the exception of the mighty itch! It is increasing in itch, which isn't fun. But, they are starting to crust over, so hopefully only a few more days. I don't want to get too excited about that, but maybe we could be reunited by weekend or at least sometime this weekend?!?! We had special Valentine's plans (all three of us!) and then Disney on Ice on Saturday as well as a few other family events, since it's a long weekend. So, hopefully we can be together. On top of that, Thursday is Carson's one-year-out-of-the-hospital date. He has not been readmitted overnight since that date. To make it a year is amazing and we hope we go for year #2! He has been in the hospital in the last year, but for procedures and he's never been overnight--they've all been same day. Way to go, Carson! You are amazing and quite a miracle from God!

Nana and Papa are trekking down tomorrow to see Carson. Should be good for Daddy too, since he's been on 24/7 now for a week tomorrow.

We're looking forward to warmer weather, this cold is for the birds! Soon enough I suppose.

Well, I'm off to my sunroom visit! I am so happy that I've been able to continue to see my two sweethearts. Can't wait to give them big hugs--hopefully in a few days.

Take care and THANK YOU for all of your words of encouragement. The Lord has blessed us with incredible prayer warriors and cheerleaders! God's Blessings to you.

Love, Carson, Daddy and Mommy

Saturday, February 8, 2003 8:53 PM CST

Good evening. We have had a restful day (all of us). Carson took a three hour nap this afternoon, while Daddy held him; Daddy got a few zzz's himself too, which was good. I was able to sleep in (after getting up temporarily for my med--not used to ME taking medicine--used to Carson's med schedule!) and even had another nap on top of that shortly after breakfast! Can you say sleepyheads? Feels great, but of course wish we could all be snuggle-festing together!

We have continued with our daily visits, which seems to work out quite well. We are so happy we have the sunroom as the cold really bothers my shingles so standing outside and watching through the window would only be a "peek and go" thing. Today we "visited" for almost an hour and it was wonderful. Carson tried to open the sliding glass door, which was hard and made me cry. He was so cute--tongue sticking out and everything! That's his "thinking mode". The baby monitor systems works well. Carson has been able to show me his new trick as of Thursday--he is able to climb up onto chairs and the couch without standing on something to give him a boost! He loves to climb and he is quite proud his latest trick. Of course, once he's up, he wants to stand. Yikes! He is so cute when he settles in to read a book! I'm so glad I got to see that!

I got the post precious thing in the mail today--Carson and Daddy sent me a picture Carson had colored for me. It made my afternoon. It is amazing but there is a very distinct part of the drawing that looks like a heart. Travis said it was all Carson, so we think that God's hand guided Carson's to show us that we're all going to be okay and get through this.

My shingles seem to have stop their migration, which is great. Hopefully they have. The itch is incredible and like I mentioned the cold is the worst. Of course this ever-so-warm weather doesn't help. I think today's high was 10 above. Maybe more, but not much. Oh well, not that there would ever be a "good" time for this to happen, so we just need to deal with it!

We had some excitement last night. Travis discovered some spots on Carson and thought it was very likely diaper rash. But we were all nervous, so just to be safe they made a trip to the ER. Thankfully, it was nothing and whatever it was, it was gone this morning. At least we had the peace of mind last night, rather than a sleepless night. I teased Travis that they are "due" for another ER run tomorrow night, since they are in the "every-other-night" mode. Let's hope not. We'd hate for them to get on a first-name basis with the ER staff.

That's about all from our corner of the world. Tonight is full of relaxation for all of us. God's Blessings to each of you and thank you for all of your prayers and support.

Love, Carson, Daddy and Mommy

Thursday, February 6, 2003 10:12 PM CST

Good evening. Not a whole lot to report, so maybe to some extent no news is good news!

We've talked to numerous doctors, few nurses and a transplant coordinator as well. Many are very hopeful and feel that Carson should come through this just fine. Because he was already on an anti-viral med, we ended up with him not having to start another one. That was nice. In very exciting and encouraging news the CBC and LFT's (some of our "ususal" labs) from last night look amazingly wonderful! His AST and ALT, two liver function tests that have been high ever since the biopsy revealed inflammation are actually down into the normal range! Had a new EBV level sent out again and hope to find out the level from 1/25 tomorrow or early next week.

We're so grateful for all of the email messages and notes in the guestbook. They really lift our spirits! We've faced trials before and we know we'll get through this, it is just so hard to be apart. We're sorry if we can't respond to everyone by email--it's just a bit crazy right now, but THANK YOU so much for the messages!

I am feeling fine, a bit tired but I had a great nap this afternoon that stretched into the evening. Will be heading to bed soon too, so hopefully that helps. I have found two other areas where the shingles seem to be migrating up my back, which is not good news. The more I break out the longer until they crust over and the longer until I can hug my two sweeties. So, we're praying that it stays contained. I'm not in any pain and have some ointment to help with the itching. I've been on the anti-viral medication for 24 hours, so hopefully that will help as well.

We set up a visit tonight for me to see Carson. At our house we have a sunroom that is 3 season. Could be four if we turned the heat up in there. It is just off our living room and separating the two rooms are two sliding glass doors. I can use our key to get into the sunroom, so Travis doesn't need to go in there at all. I was able to watch Carson play for a long time. Even with the light off he spotted me. Wasn't sure how that would be (knew it would be hard for me, but am more concerned about HIM) and he thought it was a game. He'd slap his cute little hands on the glass and we'd "touch" through that. He started pulling books off of the bookcase and tried to give them to me to read to him. It was so sweet. I called Travis and Carson from the cell phone so we were able to talk too. It really felt like strange prison-like setting that the glass is separating you and you can use the phone to talk. Thankfully we do not have first-hand experience with this, just what we've seen on TV!!! Tomorrow we're going to rig up the baby monitor we have so we won't need to do the phone thing! Seeing Carson and Travis was very hard, but also very good. I think we will continue to do it daily. I just need to see them! After many tears I picked up the bags Trav left for me on the front steps and headed back to my mom's.

So, we just wait and see and hope that the shingles stop their migration. Thank you all so much for your love, prayers and encouragement. It means so much!!!

Love and hugs, Carson, Travis and Rhonda

Thursday, February 6, 2003 1:23 AM CST

The last few hours have been rather eventful and not in the good sense of eventful.

It started with a trip to the Clinic for labs--our Wednesday night "date" with Nancy. Well, while we were there, I decided to have a funky rash looked at that just had popped up in the last few days. It is a small rash about 2 inches by 3 inches on my left hip area. It itched but not too badly and other than that it was just "there". I thought maybe it was from how a pair of pants may have rubbed wrong. But, since it wasn't getting any better by today, I decided it wouldn't hurt to have a doctor look at it since we'd be at the clinic anyway. There was God's hand in this, since if Carson hadn't had labs tonight, who knows what the turn of events would have been. I might have let the "rash" go another day or two. Well, as soon as I showed the doctor the rash, he declared that I had shingles. My thoughts raced to Carson--since shingles are a derivative of the chicken pox, this was very bad news. Chicken pox are very dangerous to Carson and we have strict instructions to call the transplant center if he is ever in contact with anyone with the pox. He couldn't have the chicken pox vaccine, since that is a live virus vaccine it would be very harmful to him. The doctor started me on some anti-viral drug therapy, so that should be fine. Needless to say, my thoughts are not on myself but on what the implications are on Carson! The doctor also wanted us to contact the tx center ASAP.

We proceeded with labs (which went like a dream--EMLA cream is wonderful--one poke tonight!). While my prescription was getting filled and the boys went off to see the fish (our after-lab ritual) and I was calling the transplant floor at Fairview to find out what the plan was. I talked to the charge nurse. The nurse took the info and our cell and home numbers and paged a transplant fellow. We were almost home when the doctor called. After lots of questions, we learned that the good news was that the shingles were still in "good shape" and hadn't gotten to the stage that they were oozing, which would mean the virus was shedding. This was wonderful in the big picture of things. (Have to find the silver lining in the clouds!) He wanted us to hang tight and he wanted to check with the tx team, infectious disease and the GI services. We were fully expecting a trip down to the Cities, and soon began to realize the implications the doctor outlined. 1) Carson would be placed in isolation and likely started on aggressive anti-viral therapy 2) I would be evaluated by an entirely different team of docs 3) I would have to completely stay away from Carson for 10-14 days. Since the Ronald McDonald House would NOT be a place for me, I wasn't sure where I would go. So many of our friends down there are immune-compromised themselves! We'd cross that bridge if we had to.

When Dr. Harmon called back he reported that they wanted to start treatment in Fargo. Carson needed to go to the ER ASAP. He needed a varicella (chicken pox) titer drawn to check his level of immunity to chicken pox. Next he needed to get the varicella vaccine, even though it is a live virus vaccination. BUT it would be followed with a significant course of acyclovir (anti-viral drug therapy) to help him with the problems that come with the vaccine for Carson. We hoped that all of this could happen even tonight, but it depended on availability of all of the stuff. We knew at the least the titer could be drawn to get that going. That meant another poke tonight. :-( Our next news from Dr. Harmon was expected but very hard to take. I would need to move out of the house until all of this settles down--likely 10-14 days or until we are out of the woods for both Carson and myself. To Grammy's house I go, I guess! There can be no contact between Carson and myself and even it is "best case" if I have no contact with Travis since he has and will have so much contact with Carson. Packing my bags was so hard. I wanted to take a little bit of both of them with me. Even harder was the fact that I couldn't and wouldn't be able to give either of my favorite guys good bye hugs and kisses. As they prepped for the ER run, I packed. They got off to the local ER by a little before 11 PM. I tearfully packed the car and left for my Mom's place. Thank goodness she is in Fargo!

I got an ER update a bit ago. Carson has had the titer drawn, and the vaccine is on it's way from a local blood supply area. Pharmacy is working on his acyclovir. Hopefully they will be home and in bed before too long! My heart breaks that I can't be there with them.

We're also concerned about what the effect of all of this will be on Carson's EBV. Hopefully know more on that front sooner than later!

The eternal optimist, I'm trying to look on the bright side. Some days this is harder than others, but I'm giving it a try! There have been many many tears shed tonight though and this is just so hard. But, looking for the positives--So far, we are still in our home area. If Carson breaks out with any skin lesions or if he develops any respiratory issues, we'll be off to the Cities (but in two separate cars and to two locations). We have also caught this very early, so the potential of Carson coming in contact with my shingles is minimal. But since the chicken pox is such an aggressive virus, we need to error on the side of caution. Also, both doctors commented that my shingles area is a very contained area since clothing is always over it. This also minimizes the potential for spreading and shedding the virus. I am also safe to go to work, which is nice, because I feel fine and would go nuts thinking of all I could be doing but couldn't!!! I just need to pre-warn those I come in contact with in case they have not had chicken pox or have other potentially compromising situations. We easily ask ourselves why this could happen to us and what will be next, but only God knows the true answer to that. I believe that He will hold us close and keep us connected even though physical barriers keep us from contact over the next few weeks. We hope to know even more tomorrow, so will update as we learn more. We would never get through some of this without the power of prayer. Keep those prayers coming and thanks for your support! Take care and God's Blessings to you!

Love, Carson and Daddy (from Moorhead)

Love, Mommy (from Fargo)

Monday, February 3, 2003 7:05 AM CST

We had a great weekend. One of our biggest goals was to rest, since we have all been feeling a bit crummy. Carson still has a runny nose, but he seems to be dealing with this cold quite well.

We had great news on Friday. We met with Carson's Early Intervention therapy team. He has achieved so many of the goals we set in August (meant to be in place for a year) that we had to revisit the goals and set new ones! One of the teachers said that his progress has been tremendous! That was so incredible to hear. So, he will no longer be receiving physical therapy in our home. He will continue to work with the physical therapist at the weekly play group though. We will now concentrate more on the speech/language delays and sound stimulation with his hearing aids. He is doing so well with his hearing aids. We are just amazed. It is our goal that when Carson is awake they are in and for the most part that is a reality. If he isn't feeling well or is tired he is more prone to taking them out. He also knows that pulling on an aid and making it squeal is a great way to get Daddy or Mommy to come running. Can you say "little manipulator"? :-)

We have labs again Wednesday and we're hoping and praying for a "flowing" vein! :-)

Our hearts go out to the families of the Columbia crew. What a tragic event. They are going to be remembered for the incredible gifts they contributed during their short lives. We also pray for those involved in the recovery and investigation efforts of the tragedy.

Hope everyone has a great week and God's Blessings to you!

Love, Carson, Daddy and Mommy

Wednesday, January 29, 2003 at 06:28 AM (CST)

Good morning!

A few things to report--

Carson's skin rash is getting much better, thanks to some diligent "lathering" of the ointment numerous times a day. There are still some patches, but not nearly as bad as it was. Looks like we're almost done with that.

We had labs on Saturday morning. Since even after the two pokes a week ago and no blood, we had to try again. This time we were more determined than ever before. We got EMLA cream (numbs the skin) and applied it an hour before. Once we got to lab, we heat-packed Carson's arm for about 5 minutes. We had also been PUMPING him full of liquids so he was very hydrated. All five of us said some prayers and then we took off the heat-pack and tagederm/EMLA--there was a vein popping out! We were thrilled. Within a few minutes and one poke, the blood was drawn and we were on our way to check out the fish in the giant fish tank (our ritual every time after labs). We were so relieved and happy.

Results on Monday showed that his AST and ALT have lowered a bit, but still not to the "normal" range. A good sign. His white count is up though...also found out last Thursday his EBV from 1/11/03 is the highest it has ever been. Our center is not as concerned about the actual number but rather the trend Carson's levels are doing. They've seen EBV levels much higher and much lower. It's very personal and individual to each patient. We have labs again a week from today and should be pretty close to getting the EBV level from 1/25/03 by then. More wait and see, but we're used to it by now.

Mommy got a cold over the weekend and feels awful that it looks like Carson has picked it up. So far he seems to be doing somewhat okay with it and he's drinking lots of liquids. Yucky colds!

He is feeling well enough to get into things--he loves to color and will sneak a crayon into his mouth every now and then. Never mind the fact that this freaked Mommy out on Saturday night when she saw "blood" all around Carson's mouth and cheeks. Upon closer examination, she realized it was red crayon. :-) Carson is also quite the climber and loves to get on top of the toy box, his little table and our coffee table. He will crawl and pull a chair or a toy near those things to use as a step. If there is a wall by the object he climbs on, he will stand on it and be quite proud. His grand achievement yesterday was ripping part of our wall border off of the family room wall while Daddy went to get the mail. Ripping the border off--great thing to do on the day you are 21 months old. Are we gearing up for the terrible twos? That's okay; we are enjoying every minute and these are "normal" kid things, right? Carson is getting closer and closer to walking, but isn't quite there yet.

Our prayers are with the friends and family members of North Dakota?s Army National Guard?s 142nd unit. Over 700 men and women were activated last week and left early this week for Fort Carson, Colorado for training. Their destination after that point is to be determined. Our thoughts and prayers are with each and every one of you!

We had a fun time seeing Carson's liver buddy (or girlfriend?!?) Megan's (and Mom and Dad's) new home on Saturday. They had just started moving on Thursday and they were pretty settled in by Saturday afternoon. Very exciting!

That's about all for today. We're staying cozy and hope you are too! Take care and God Bless You!

Love, Carson, Mommy and Daddy

Thursday, January 23, 2003 at 06:45 AM (CST)

Good morning!

We have some news to report, but we're also still in wait-and-see mode.

We had CT's on Monday and we found out that no abnormal masses were found, which means at this point no signs of PTLD (lymphoma). We were happy to hear this, but know that Carson will continue to be monitored for it.

We had labs again last night. After two pokes and almost 5 people in tears (plus Carson in big tears) we called it quits. There wasn't enough blood to run any tests between the two attempts, so no lab results to report to the transplant center today. :-( Carson has been poked 14 times in the last two weeks and he is resembling a pin cushion. He just needs a break. We're not sure who had a harder time with last night's defeat--Carson or our lab tech. We sure get to work with some wonderful people who care so much about Carson. How lucky can we be?

We will talk to our coordinator today to find out if there is still any word on 1/11/03's EBV level. Hopefully then we have a game plan. Will keep you posted.

Carson also took another trip to a doctor on Saturday morning. He broke out with a major skin rash and it exploded overnight from Friday. It is a skin yeast infection, since he had some IV antibiotics a week prior. He's also on another antibiotic (has been since 5 weeks of age) so the imbalance is just coming out on his skin. Behind his knees are the worst. We have ointment and it is getting better. We're hoping to aviod another oral med, not because he isn't a champ at taking meds but because some of the anti-fungal meds can mess with anti-rejection med levels. Fun, fun, fun!

We will keep you up to date on what goes on next. We're almost to the point that we wouldn't mind getting a line again because those blood draws would be a piece of cake and give his arms and feet a break! But it's so nice having a "tube free" boy.

As Daddy as so well summarized "It's likely because of Carson's EBV, his AST and ALT are elevated--we had CT's to check for PTLD". If you can follow that, you're either in the medical field or know way too much about the liver! :-)

Thanks for all of the notes in the guestbook. It's been easy to get discouraged the past few weeks, and we really appreciate the prayers. Take care and God's Blessings to you!

Love, Carson, Daddy and Mommy

Friday, January 17, 2003 at 06:45 AM (CST)

Good morning! A quick update on yesteday's happenings:

We got lab results back from some of the labs we had Wednesday night. Two of the liver function tests that we have been watching have gone back up again since Saturday and are almost to where they were last Thursday. Not good. Everything else looks fine, which leads the transplant team to believe that it is Carson's EBV that is causing the latest problems. We have CT's scheduled for Monday morning here in Fargo on Carson's chest and abdomen to take a good look at his lymph nodes. This was planned to do periodically anyway, but with the likelihood that EBV is the culprit of the abnormal labs, they want to watch for PTLD (lymphoma) even more.

They have also upped the amount of oral anti-viral he is taking. We got results from his EBV level from December 26 and it is quite low, but our coordinator told us not to get too excited because the one that was taken last Saturday (1/11/03) is going to be the one we'll have to pay attention to and it probably won't be very low. Likely still sometime next week until we know where that level is.

Right now everything depends on how his CT's look and what the new EBV level is, both results we will hopefully have by mid-week next week. From the sounds of it, if anything looks out of line, they plan to start him on IV therapy for EBV. We are not excited about getting a line again, but if that is what will help this EBV stuff, then so be it. Another big bonus is that he would have a reprieve from lab pokes for a bit. He's had wonderful lab techs, but he's been through 9 pokes in one week that he's been awake for. (Couple more while he had the biopsy, but he was under then.) We're trying to look on the bright side of things, I guess.

It was a year ago yesterday that Carson was discharged from the hospital, so he's made so much progress since then. We were hoping to make it to February 13 as "hospital free" since that was the last time he was discharged after being in several days for the line infection--Feb 13 would be one year of no overnight hospital stays! :-)

We're worried about Carson and pray that he comes through all of this with flying colors. Thank you for all of your continued prayers--we appreciate them so much!

Love, Carson, Daddy and Mommy

Monday, January 13, 2003 at 05:36 PM (CST)

It's been a busy couple of weeks and certainly time for an update.

Two weeks ago today was Carson's one-year transplant anniversary. It was a special and quite emotional day. We are thrilled with Carson's recovery but our heart aches for our donor family's loss. We have sent them two letters as well as pictures and we hope that seeing Carson's "before" and "after" pictures will give them some comfort. Their decision truly saved Carson's life.

Last Wednesday we went to the Cities for check-ups. We were able to stay at the Ronald McDonald House (RMH) which is always great. On Wednesday evening we met up with other "liver" families. In all there were 4 that have had liver transplants, one that is listed and one that will potentially need one someday (hopefully later than sooner). We went to Camp Snoopy and we all had a blast--the adults probably even had more fun than the kids. Carson went on 3 rides and smiled through most of them. We are determined to make these trips fun for him, despite all of the poking and prodding from his docs.

Thursday morning we met with Carson's cardiologist, Dr. Baker. He was thrilled with Carson's progress. Carson is at the 25th percentile for height and weight (amazing--a year ago he was at the 1st percentile). His x-ray and echo look about the same. Still some leakage and other issues, but nothing has remarkably changed. Yah! Carson did quite well during the echo, thanks to goldfish crackers and a Blue's Clues video. We were thrilled to learn that we don't have to go back for a year! Great news!

Next we stopped in at Children's Minneapolis across the street. We visited the Family Resource Center and saw some familiar faces. No visits to the PICU or the floors to see nurses, as there was too much cold, flu, RSV, etc. going around for our liking. We also got to meet Amy and Nathan. We are thrilled that this looks to be discharge week for Nathan after 4 weeks "on the inside". Our prayers continue to flow for you!

Back to RMH for an interview! We visited with someone from the University Medical Foundation. There were also a couple people along to take pics and video footage of Carson. The info will be potentially used in a variety of publications and maybe even a Vikings game brochure! We even got a copy of the pictures on CD. We are so happy with Carson's recovery as well as the expertise and level of care he was given at Fairview that it was nice to be able to share our gratitude.

Our next stop wasn't as fun--labs to check on things for Friday's liver biopsy. Not very fun since they needed lots of blood!

We also got to see our buddy Andrew. You may remember him as Fuzz. He has been waiting for a heart since summer of 2001. He has been out of the hospital for a while, but was back in last week (still is as of now). We pray for Andrew every night. Carson had a blast being silly with Andrew and just giggled at everything. It was so good to catch up with Andrew and his mom, Jill.

We had a great supper and visit with Jody and Amy on Thursday evening. Jody was a lab tech of Carson's pre and post transplant. It was so good to catch up and see all of the beautiful wedding pictures!

Whew! Time for bed. We were at the hospital by 6 am on Friday for Carson's biopsy. Because of a scheduling snafu, he was only going to have the ultrasound and liver biopsy. We will have to do CT's to check his lymph notes in Fargo. He did very well with nothing to eat for so long. We colored, watched Blue's Clues, watched the fish in the tank and played with some toys. The procedure wasn't that long, so we saw him within about an hour. We were discharged a short time later and went over to the transplant center. We met with Carson's surgeon, Dr. Humar. Carson was sleeping when Dr. Humar came in. He was amazed at Carson's progress and loved his pink color. (He was VERY pink--anesthesia always has that effect on him.) We talked about Carson's EBV and what that plan was. We happily learned we can stop taking aspirin (down to 6 meds now) and we don't have to take Carson's vital signs twice a day; we can do it once a day or if he's doing well even every other day. We can also do labs only once per month. YIPPEE! We will head back to see the Peds GI in 6 months and then transplant again in 1 year. So, all was good.

Until about 5:30 pm. Carson's transplant coordinator called and said the preliminary results of his biopsy showed inflammation of some sort (also called hepatitis--NOT hepatitis A, B, C, etc.). Since the cause of the hepatitis or inflammation was unknown there were lots of questions to be answered. She was quite certain it was not rejection.

We also had a great get-together with Steve, Dolly and Ryan and Marisa. Ryan and Marisa have had liver tx. The homemade stew was delicious and our time to visit was just way too short. We were wiped out though and we knew Saturday would be a busy day.

We had loads of labs drawn on Saturday morning (after 5 pokes, we were all wrecks). We had another visit with Andrew too. Preliminary labs showed some improvement. Enough that we were given the go ahead to go home, instead of being admitted like we first thought. Since Uncle Chris wanted to ride back with us, Mommy made a mad-dash to Eau Claire, WI on Saturday to pick him up. We all left early yesterday morning before any doctors could change their mind! We are still waiting on a lot of the results. Many tests are viral so we have to see what happens and others are sent around the country and take a bit for results. The wait is on. In the meantime, we are back to weekly labs. Carson is getting so strong that he is getting harder and harder to hold for labs. Suppose that his strength is a good thing rather than him being weak and not fighting it.

So, we are in a wait and see mode. We pray that whatever the inflammation is from, it is not an issue. We hope to have his CT's done soon so we hope and pray that his lymph nodes look good as well and that nothing is developing on those as well. We will keep you posted as we learn results and keep those prayers coming!

Take care and God Bless!

Love, Carson, Daddy and Mommy

Monday, December 30, 2002 at 09:40 AM (CST)

Good morning!

Today is a big day--we're 1 year post transplant! What a year it has been. Carson has given us so much joy. It's been and continues to be a rollercoaster ride, but we wouldn't trade it for anything. We are amazed to watch Carson-our miracle-in action. He is so full of energy and life!

As we celebrate this incredible milestone today, our hearts and minds drift to our donor family. How are they doing one year later? Is their grief comforted at all by the wonder that through their decision, the gift of life was given and their little one lives on?

Today we will begin an annual tradition. We will light a candle every December 30 to celebrate Carson's miracle and to honor the memory of Carson's donor. As Carson grows, we will tell him about the gift he was given and how he needs to protect and care for his gift of life. We know that God has special things in story for Carson--we just need to patiently watch God's plan unfold.

Christmas was very special. As spoiled as we were last year through the hospital and Ronald McDonald House, there is no better feeling than to be home. Apparently, Carson was a very good boy this year. He loved opening presents (not just his either, Daddy and Mommy's seemed to have more of an appeal).

Carson is also going through a growth spurt. He is spending quite a bit of time in his highchair. :-) Carson's sign language vocabulary is also expanding; he's added "smart" and "fish" (for 'goldfish crackers') to the mix of "more" "kitty" "stop" "no" "play" "hi" "eat" "done" and "bye". It's amazing to watch as he adds to his vocabulary.

We had visitors yesterday--Joel, Jody, Lacee Jo and Jaden! It was so fun to see you and thanks again for stopping by.

Well, we must close for now. We have a busy day planned. We would like to ask if you are checking in with us to please leave a note in the guestbook for Carson. We'll be saving all of these messages, of course, but the ones for his anniversary will go into his transplant journey album. Thanks and God's Blessings to you!

Love, Carson, Daddy and Mommy

Monday, December 23, 2002 at 06:45 AM (CST)

Good morning! We're sorry it's been so long since our last update. The last few weeks have been crazy! For the most part, no news has been good news. We'll try to fill you in on the comings and goings of the last few weeks:

Our big news is that Carson got his BLUE hearing aids a week ago today. Overall he has done very well with them. He left them in for a total of 9 hours one day last week! (Not all at once.) He was a little more angry with them over the weekend, but like anything else, this is an adjustment. We have noticed a big difference when they are in, so that's great. They aren't yet set to the level they will ultimately be...it will be a gradual process. We are so happy with how well he is adjusting to them though.

We had Carson outside over the weekend--playing in the snow! We have a few inches on the ground now and we tried out Carson's new sled. He loved it for about 10 minutes--then he got cold and it was no longer fun. :-)

Last weekend we had a fun evening with another liver family--the Tauers. We didn't talk about liver stuff TOO much and most of all, Carson and Megan flirted and played with each other.

We also went to an event last weekend with the "Signing Santa" (a Santa that communicates through American Sign Language). It was an event that was more interesting for Daddy and Mommy than Carson at this point, and it was wonderful to meet some other families. :-)

A few weeks ago, Nana and Papa were down for a visit and to see all of Carson's latest tricks. They shared stories and trinkets of their latest trips and travels. They also took lots of pictures and videos to share with family in Swan River.

A few weekends ago we took Carson to see Santa at the mall. He wasn't too sure of Santa, but we did get an adorable picture pose. We stopped by the Lite Rock 105 Christmas Wish request-a-thon at the mall too and requested two songs in honor of Carson. Carson received a Christmas Wish from Lite Rock last year and they have made Christmas better for so many people.

We had a fun evening last week with Kim and Emily Gillette--Kari wasn't feeling 100%, so she stayed home with Daddy. Carson and Emily "shared" some toys (not very well though).

Mommy and Grammy have been busy with holiday baking--something Mommy hasn't done for a few years! Mommy took a lefse class this month and enjoys this new knowledge. Yummy! We're all set for the holidays and are thrilled that we will be home this year for Christmas! It feels so good!

Papa Chip comes back to Fargo again today--he's been visiting at Uncle Corey's in Iowa for a few days.

We are not only busy with Christmas preparations, but also with details for Carson's Celebration of Life party. It will be a week from today. We can't believe that he is going to be one year post-tx. We are doing something special to honor the memory of Carson's donor and honor his donor family. We will also be celebrating the amazing miracle of Carson! We are so happy that he is doing so well. The progress he has made in the past year has been nothing short of remarkable. We are so excited that so many will be celebrating with us next Monday--it's going to be quite the party! :-)

Our one bit of not-so-great news is that Carson's EBV level rose again. It appears that the viral load is rebounding. His anniversary check-ups are in early January, with CT's, a liver biopsy, ultrasound and labs, so hopefully we have a better idea of where things are after that.

We have several kids and their families that we would like you to include in your prayer list--Aiden, Mitchell, Jayli, Nathan and Emma. Mitchell and Jayli have both had two liver transplants and Aiden, Mitchell and Jayli all had the same liver disease as Carson--biliary atresia. Aiden had a transplant on Saturday and so far his new liver hasn't kicked in. So he urgently needs your prayers. Jayli's second transplant was in May, but she just can't seem to stay out of the hospital for too long. Please lift all of these kids up in your prayers!

Well, that pretty much covers the past few weeks. We hope that you and your family have a wonderful and blessed Christmas. A year ago we were hoping for a Christmas miracle and we got one--and we continue to watch God's miracle in action every day. We are so thankful for all that the Lord has given us. God's Blessings to you and your family.

Love, Carson, Daddy and Mommy

Thursday, December 05, 2002 at 10:16 PM (CST)

Hello. We have some exciting news to report. Carson's EBV level dropped from 10,600 to 3,600 (this is super!) in a two week span. We're still not out of the woods and we know that it could--and likely will--bounce around, but we are cautiously optimistic that he is heading in the right direction. We have check-ups in Minneapolis on January 8-10, so we will have a better idea by then.

We had a wonderful Thanksgiving. We ate too much, but it wouldn't be Thanksgiving without that! It was just so good to be home.

Our tree is up and decorations adorn the in and outside of the house. Carson is infatuated with the tree and goes from light to light touching the bulbs. So far most of the ornaments are staying put. We haven't gotten brave enough to put any of the wrapped gifts under the tree yet...

A year ago today was our "original" transplant date. Of course, it was cancelled two days prior because Carson had one of his wonderful "mystery fevers". He took such a turn downhill in December that it is so amazing that he made it through the month. On the 10th his kidneys failed and then we learned a whole bunch about another part of the human body and what dialysis was all about. Needless to say, we are getting excited for his one-year transplant anniversary!

We also have snow and it appears it is here to stay. Carson has enjoyed his romp in the fluffy stuff.

Well, time for bed. Hugs and prayers to all. Take care and God Bless!

Love, Carson, Daddy and Mommy

Friday, November 29, 2002 at 09:35 AM (CST)

Hope everyone had a very Happy Thanksgiving! We sure did. We have so much to be thankful for.

We wanted to share this verse; it's wonderful. Enjoy.

Big Mud Puddles and Sunny Yellow Dandelions
Author Unknown

When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard.
My kids see flowers for Mom and blowing white fluff you can wish on.

When I look at an old drunk and he smiles at me, I see a smelly, dirty person who probably wants money and I look away.
My kids see someone smiling at them and they smile back.

When I hear music I love, I know I can't carry a tune and don't have much rhythm so I sit self-consciously and listen.
My kids feel the beat and move to it. They sing out the words. If they don't know them, they make up their own.

When I feel wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk.
My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.

When I pray, I say thee and thou and grant me this, give me that.
My kids say, "Hi God! Thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don't want to go to Heaven yet. I would miss my Mommy and Daddy."

When I see a mud puddle I step around it. I see muddy shoes and dirty carpets.
My kids sit in it. They see dams to build, rivers to cross, and worms to play with.

I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!
Enjoy the little things in life, for one day you may look back and realize they were the big things.

I wish you Big Mud Puddles and Sunny Yellow Dandelions!!!

"Life is not measured by the number of breaths we take but by the moments that take our breath away."

Take care and God Bless,
Carson, Mommy and Daddy

Tuesday, November 26, 2002 at 06:23 AM (CST)

Good morning. It's hard to believe that Thanksgiving is only 2 days away--soon Christmas will be here!

We have had a busy week. First off, last week brought the news that Carson will be changing anti-rejection medications. It is hoped that using the new one will bring better success for him to fight EBV. Only time will tell. The downside is that he will have pretty frequent labs to check the levels of the new med. There are also new side effects to get used too. Hopefully all goes well. The new med should arrive today with the target "start" date tomorrow.

We had a fun weekend with Tanya and Megan. Megan is 4 months post-transplant and doing great. Carson giggled and giggled at almost anything that Megan did and she smothered him with kisses (apparently she didn't listen to our "no smooches until you're 30 years old" rule). Meanwhile Tanya and Mommy were out shopping-a few of us are planning to make some fleece blankets for the kids in the local hospitals over the holidays. We won't ever be able to repay all of the generosity we received in the past year and a half, but we want to try to make a difference to some people.

We also had a sitter come and watch Carson for a few hours on Sunday while we finished up our holiday shopping. We got lots done even though the stores were pretty busy.

Carson has added a few signs to his vocabulary. Sunday night he did "eat" and "kitty" (could that have anything to do with his fascination with our two kitties?). It was great and he was so excited to be able to communicate. He loves to do "more" and is quite proficient with that sign when it is mealtime.

Speaking of mealtime, we are gearing up for Thanksgiving. We are hosting this year; Nana and Papa as well as Grammy, and a friend of Grammy's will be joining us for the feast. It's so good to be home for Thanksgiving. Our meal last year was compliments of Ronald McDonald House volunteers and was delicious, but there is just something about turkey dinner on Styrofoam!

We got word on Friday that Carson's hearing aids were finally approved; we found out today that they should be here next week. So, on to a new adventure.

We also found out that the TV spot on Carson will air tomorrow night on our local Channel 4 at 10 pm. Carson showed off in front of the camera, so there should be some cute footage.

Also, a Happy 1 year transplant anniversary to Munchie! We can't believe that it was a year ago that you "got the call". Sometimes it feels like years ago, other times just weeks. Anyway, "way to go" to you, buddy!

That's all from our place for today. Hope everyone has a wonderful and yummy Thanksgiving. We certainly feel we have LOTS to be thankful for this year. Love, hugs and God's blessings to you and yours.

Love, Carson, Daddy and Mommy

Monday, November 18, 2002 at 07:37 AM (CST)

Good morning!

Carson is doing much better than he was a week ago. Just as quickly as the throwing up came on, it left. So whatever it was is gone now.

Carson's labs were Thursday evening--his liver funtion tests (LFT's) came down, just like we wanted them too. This is the second time they have risen--both times after immunizations or the flu shot. We also learned on Friday that his latest EBV level has risen once again. :-( We will learn the new level in about a week and a half, so we will see how the lowering immunosuppression from a few weeks ago hopefully helped him out.

We got a phone call from one of the news stations here last week too--they want to do a follow-up story on Carson! Channel 4 has done numerous stories on him and they want a "where are they now" segment. How incredible! So, we will tape it this Thursday. Not sure when it will air yet...

This Friday-Sunday is Donor Sabbath--a time to honor and remember all of the incredible organ and tissue donors out there. Of course, our minds often drift to our donor family and wonder how things are going for them. We're soon approaching the one-year anniversary and it is hard to know what this year has been like for them. We pray for them everyday and hope they find some comfort in their grief knowing that they helped a precious little boy named Carson.

We also can't help but think where we were a year ago--last Friday was the one-year mark for Carson's transfer to Fairview University Hospital. Some days it seems like years ago, others just a few days ago. We're just happy to be home!

We also ask you to say some extra prayers for a little 7 month old named Aiden. He is in desperate need of a new liver. He also has biliary atresia. He had a major GI bleed last week. Please keep him and his family in your prayers. We will keep you updated on his progress.

That's all for today. Take care and God Bless!

Love, Carson, Daddy and Mommy

Tuesday, November 12, 2002 at 06:47 PM (CST)

Greetings!

Carson is keeping us on our toes--he started violently vomiting yesterday. No fever, which is good, but it still makes us very worried. Mommy even checked our "hospital" bags to be sure we were ready to go. Kinda sad! After numerous calls to docs in Fargo and the Cities, we had a plan. Our biggest worry was if he couldn't keep his 8 pm meds down for 45 minutes (then they would need to be re-dosed). So far, he's holding his own. Not sure where this came from. Hopefully it doesn't progress, but it still makes mommy and daddy worry bunches!

Carson's Great Grandma spent the long weekend with us. She enjoyed watching Carson's new tricks. :-)

Carson's liver profile labs improved a bit last week. We have another re-check this Thursday night (along with another EBV draw). Keep praying!

In other news, we have learned that our donor family received the letter and photos we sent last spring through our organ procurement organization. They were thrilled to receive the information. We still think of them and their incredible decision many times a day--how can we ever come close to sufficiently thanking them? They are true heroes.

That's all for now.

Take care and God Bless!

Love, Carson, Daddy and Mommy

Monday, November 04, 2002 at 07:24 AM (CST)

Good morning!

We had a restful weekend. On Saturday we cheered the Bison on, but apparently we didn't cheer enough and they lost. :-( Hopefully next season is better! Carson loved watching the electronic boards and instant replays on the big screens. He liked watching all of the people too.

We had fun trick-or-treating on Halloween with our little transplant surgeon. We got some funny looks taking an Igloo cooler around for his candy, but oh well! The staff at the clinic sure got a kick out of it when we came in for labs. All in all, it was lots of fun (at least for Mommy and Daddy).

Two of Carson's liver function tests came back elevated from Thursday night. Not too bad, but he's going to be re-drawn today. Since he had a flu shot last Tuesday, we're wondering if that had an influence. Last spring he had some immunizations and they elevated a few of his labs then too. We'll have to wait and see and hope that nothing funky is going on.

Carson slept through church yesterday and then took a long afternoon nap. Of course, then he was up late. We're trying to get him on a better schedule, but it's also hard to guess how the weaning and removal of the prednisone is affecting him. He is so happy though and so much fun.
We'll update when we know more about the labs. Take care and have a great day!

Love, Carson, Daddy and Mommy

Wednesday, October 30, 2002 at 06:50 PM (CST)

Hi there!

We have a few updates to report--

We had a fantastic weekend in Winnipeg with Auntie Dana--Uncle Der was sick and couldn't make it :-(, Uncle Ian and Auntie Rhonda and cousins Brody and Hannah. Carson was in AWE of Brody and followed his every move. They will be such good buddies! We also got to see Erin, Ken, Lila and the boys for an evening of supper and swimming, which was really fun. The weekend flew by and before we knew it it was time to head back home.

We are planning a fun evening for tomorrow night. Carson was intubated and heavily sedated for his first Halloween--not this one! He's going to be a transplant surgeon for Halloween. Yes, he has twisted parents, but we figure we might as well have some fun with this journey! Besides it is a great tribute to the talented surgeons he's had. Next year--GI or cardiologist? Grammy sewed him scrubs and he has a surgeon's hat, mask and igloo cooler to complete the ensemble. We're not taking him too many places, but it should be a fun evening.

We received a few copies of LifeSource's annual report. LifeSource is the organ procurement organization for ND, MN, SD and western WI. They are responsible for organizing Carson's liver to arrive safely by plane on 12-30-01. They do a lot of donor awareness activities as well. Carson was one of two organ recipients featured in their annual report, so we are really proud. Another addition to his transplant scrapbook!

We will pick colors for Carson's hearing aids later this week or early next week--just a few more weeks until they are in!

Finally, we had some not-so-good news today. Carson's latest EBV level has tripled in the last month. Definitely not good. So, they have increased his oral anti-viral medication and tomorrow (as has been planned for months) he is done with prednisone. Hopefully that will help boost his immune system to fight the EBV. We have labs tomorrow night and again in 3 weeks. Hopefully in 3 weeks time the changes will have made a difference. Otherwise, it's likely the next step would be IV therapy. It's so wonderful having him tube-free that it would be so hard to go back, but we will of course do whatever needs to be done!

We are looking forward to the NDSU football game this weekend. Go Bison!

Have to run--thanks for your continued love, support and prayers! God Bless!

Love, Carson, Daddy and Mommy

Wednesday, October 23, 2002 at 9:25 PM (CDT)

Greetings! It's been a few weeks since our last update and it's a "no news is good news" situation.

We've had a great couple of weeks--we've had an American Liver Foundation meeting (we see new faces every time), met with 4 other "liver" families one night for supper, and several of us "liver" mommies have gone out twice in the last week just for fun. Of course, we tell ourselves that we're not going to talk about medications, transplants, liver function tests, and all of the "fun" stuff, but we do! Just one of those Mommy things, I guess. It's been so fun and it's wonderful having three other women who know what we've been through.

We made supper for the Fargo Ronald McDonald House on Sunday evening--something we hope to do once a month. We don't know what we would have done without the RMH in the Cities, and we'd like to return some of the generosity others have given us. Ronald McDonald Houses around the world are in need of volunteers, so if anyone's interested it is a great way to help others!

Carson's labs look good--we're waiting on the latest EBV level. We'll all be getting flu shots soon (a mandatory in our household now and anyone in close contact with Carson) too.

We had family and Carson's 18-month pictures taken on Saturday. They are on his Webshots link under the June/July/October 2002 album. They are adorable. Of course, we can't believe that he's no longer a baby, but a little boy. He looks so grown up! We hope you enjoy them!

This past week has really been a time of reflection. We left a year ago Sunday for Minneapolis for Carson's open-heart surgery repair. We had hoped we'd only be gone for two weeks. Of course, we had no idea of what was in store. That was for the best though--God sure knew what He was doing. How do you prepare for something like that? Our devotional calendar's quote for yesterday was "There are very few certainties that touch us all in this mortal existence, but one of the absolutes is that we will experience hardship and stress at some point" (From Dr. James Dobson's Love for a Lifetime book). How true! So, we had a great family supper last night to celebrate Mommy's birthday. We also were brought back to the emotions of where we were a year ago. It's kinda sad, but open-heart surgery is now not as scary as it was a year ago, especially in relation to everything else. It just shows you that it's all a matter of perspective.

So, today we took pictures of Carson's chest to show him someday how well he had healed one year after the fact. It's incredible. His scars are fading and look like stretch marks. He was certainly under the care of incredible doctors and gifted surgeons.

With that, we will close for the night...a little special someone needs an extra hug for being such an amazing and strong little boy; he also needs a goodnight book read to him! With pleasure, Daddy and Mommy will read one to him.

Take care and God Bless! Thanks so much for all of your prayers for Carson and for us. He's living proof of the power of prayer!

Love, Carson, Daddy and Mommy

Saturday, October 05, 2002 at 09:34 PM (CDT)

Good evening!

We're snuggled in--just saw that north of us a bit is under a winter weather advisory! YUK! We're not ready for the "s" word quite yet.

Well, Daddy and Carson met an incredible person a little over a week ago--Reg Green. He is the author of "The Nicholas Effect", a book which talks about his son's Nicholas' life and death. He was murdered as the family traveled on vacation through Italy in October 1994. His parents donated his organs, which started an incredible movement of organ donation, now known as the "Nicholas Effect". Prior to the murder and donation, Italy had the lowest organ donation rate in Europe, afterwards, donation rates soared. Reg and his family live in California and he was in town speaking at a transplant symposium. Travis was in awe and Reg signed our copy of the book. Reg even mentioned Carson in his speech! Mommy wishes she could have been there!!!

We had a wonderful apppointment with Dr. Frisk yesterday. We also met with Matt, an audiologist. They are both very knowledgeable and great with Carson. We are in good hands. We took ear molds of Carson's ears and will hopefully have Carson's hearing aids in within 4-6 weeks. We had many of our questions answered and are amazed at the level of technology! It's incredible!

Carson has done his first sign on several occasions--he knows the sign for "more". Mommy and Daddy seem to be doing the sign for "stop" more than anything with Mr. Busy! We have chosen to learn and teach Carson sign, since there will be times that he can't have his hearing aids in (tub, pool, etc.) and it will be necessary to communicate. Plus, kids tend to pick up sign sooner than speech (both hard of hearing and normal hearing kids). It's been very exciting.

We have had a fun weekend so far and more to come--Marisa came last night and will stay until Monday. We've had lots of fun visiting and watching Carson. We all went to the zoo today and Carson had a blast, as always. The baby Chinese Red Pandas were out and were adorable. Carson squealed as the two little pandas scampered around. :-)

Well, it's bed time and time to read a book or two to a special little someone. Take care and God Bless!

Love, Carson, Daddy and Mommy

Wednesday, September 25, 2002 at 08:44 PM (CDT)

Just a quick note to update on the latest:

We had the ABR on Monday and it looks like Carson's loss is at about 50 db (most of us hear at 20 db). This would be considered a moderate hearing loss. At this point the next step is to meet with an ENT and start the process for hearing aids. So, we meet with an ENT and audiologist on the afternoon of Friday, October 4th. We will have some decisions to make--what brand of hearing aid, what kind (digital seems to be the way to go--CD quality sound) and even the potential of what color! Carson will have the behind-the-ear type (as most kids do) and the inner earmold will be the piece changed every 9-12 months because of growth. Once he is not growing so rapidly he will be able to switch to a smaller one if he chooses. That will be a while from now.

We have learned a lot in the last few weeks--we have been reading up a lot and learning the terminology. We have also been able to learn of other parents' experiences too. That has been invaluable!

Daddy has been working on the Fargo-Moorhead Community Council of the American Liver Foundation--he really enjoys getting it off the ground with the help of many others.

Mommy volunteered for the LifeSource booth (our region's organ procurement organization) at the Women's Showcase last Saturday. It was a great experience and she heard some wonderful stories of organ recipients and donors. It was a special day.

Tonight we had a special visitor--Beth! She was Carson's Occupational Therapist when we lived in Fargo with the Infant Development program. She hasn't seen Carson since July and she noticed quite a change. It was so fun to see you, Beth!

That's all for today! Take care and God Bless!

Love, Carson, Daddy and Mommy

Monday, September 16, 2002 at 07:37 AM (CDT)

Good morning,

It's been a busy few days, but we have some sad news to report. On Friday we got Carson's hearing tested. The tests revealed that he does have a hearing loss in both ears--looks to be in certain ranges and pitches. It is nerve damage. The audiologist classified it as "mild" or possibly "mild to moderate" hearing loss.

Our next concern is to make sure it is not progressive hearing loss, which the audiologist doesn't think it is.

Our next step is a very advanced hearing test which will specifically identify the loss areas. They will use these results to program his hearing aids. While we have this next test done (an ABR) they will take molds of his inner and outer ears to make the hearing aids. The ABR is scheduled for a week from today.

In all, it is hard to deal with yet another obstacle for Carson. He has faced so much already, and thankfully done very well. We know he will do well with this too. It's just hard. Maybe it is because they can't actually fix his loss, just give him something to help it (which we're thankful they can do). It is also something that will set him apart even more from other kids and is just one more thing that he can be teased about. It's ironic that here is a kid who had a hole in his heart, they opened him up in open heart surgery and patched the hole and it's better; he has a awful liver diease, the liver fails and they can give him a new liver, and he does very well, but they can't reverse his hearing loss. We are thankful that they can do all they can and that something can be done for him. It feels like we're wondering what other parts of the human body we will get to learn about--we've got heart, liver, kidneys, immune system and now ears covered--what's next?

They aren't sure why he has a hearing loss, but the top three theories are--frequent intubation, open heart surgery and medical stress/trauma. They feel it is highly unlikely due to high bili or meds--high bili and hearing loss is typically in newborns. To us it's not so much "how" the fact is he has it and we can go forward from here.

We're very thankful that the team we are working with is so experienced. They have been very reassuring. We are also standing back and counting our blessings--Carson is alive and doing so well and we've caught this early. We have so much to be thankful for!!! It is just hard knowing he has another obstacle to face and overcome. (He is probably doing the best of all of us though!!!)

As we've said many times in the last few days, last November when we were listing him for transplant we knew there were risks and complications. So far we've been so lucky and if they had said "he can get a liver, but will have a hearing loss" there still wouldn't have been a question to all of it.

That's all for now. Thank you for your continued prayers--we appreciate them so much. Take care and God Bless!

Love, Carson, Daddy and Mommy

Wednesday, September 11, 2002 at 09:46 PM (CDT)

Where were you when?

As we look back on the past year, much has changed in the world. Many events are categorized as pre-9/11 or post 9/11. The attacks a year ago were not just attacks on the World Trade Towers, the Pentagon or some plan to target another U.S. landmark. They were attacks on the world.

As we paused to remember the many victims, we can't help but think of where the three of us were when we heard. We were at Innovis Hospital in south Fargo. Carson was having an abdominal ultrasound. A few days prior to this he had a white poop (bad news), so we were investigating. Looking back, this was the beginning of the end of his old liver. We had no idea what the next few months would be like. We were on pins and needles. While we were in the room, someone popped her head in and said "a plane just ran into the World Trade Center". We were concerned, but thought it was likely a small plane, likely "bumping" into it. Little did we know. The rest of the day we were so concerned about Carson and waited for word from the Cities. Soon we learned we needed to make an emergency trip to the Cities for more tests. It was mid-afternoon on September 11 before we turned a tv on. Of course, we were shocked by the images. It was hard to even believe. We were immediately concerned about Derwin and Dana (Travis' brother and wife) living in Pakistan. We cried over all of the children that wouldn't see their Mommy or Daddy again. We prayed for the families of the lost and the injured. We just prayed.

So, that day was very significant for the world, but we will always remember the message Carson's little body was sending us too that day.

Below is a Litany of Remembrance that I received at our church today:

Two weeks after the September 11 attacks, the grieving families of airline crews who died in the plane crashes in Pennsylvanie, Washington, D.C., and New York gathered at Trinity Lutheran Church, near LaGuardia Airport in New York. In the depth of their shock and pain, they prayed this litany, remembering those who died and seeking God's comfort and guidance. On year later, Lutherans around the country will use these same words to pray in the name of the dying and rising Christ, who loves us and walks with us in remembrance and renewal.

A reading from Lamentations 1:

How lonely sits the city that once was full of people! How like a widow she has become--Jerusalem remembers, in the days of the affliction and wandering, all the precious things that were hers in the days of old.

I pray...

For the lives of those we mourn and for sharing them with us but a little while,

For the valiant efforts of the men and women who gave their lives for the sake of others, and for those who continue to assist in so many exhaustive ways,

For great buildings that have inspired and for those that will inspire again,

For the miraculous and the untold, for the common and the good, and for all these things that keep us going in this time of remembrance.

Build us up again, O God. Heal our hearts, comfort our sorrows, rebuild our cities, and guide us in faith.

Give us strength to address the months and years ahead. Give us wisdom and patience as we plan for the future. Give us knowledge and insight as we seek to protect ourselves and others. Give us courage as we seek justice and peace.

Fill our hearts with love and peace, O God. Let no hatred or bitterness divide us from the world in which we live. Turn our darkness into the light of day and bless us.

Above all things, make us confident in the hope that is in you, O God. For you are the power, and the glory, and the wisdom, and the strength of all who turn to you. Build us up and give us hope. And let the people say, Amen!

Reading: Romans 8:31-39

Right now we also need your prayers--a little girl name Jayli is in Chicago. She is having problems with her platelets and they may have to remove her spleen. She has had two liver transplants, one a little over a year ago and one on May 1. She has spent MUCH of the last year in the hospital, and has been there (with the exception of about 4-5 days) since May 1. Please lift her, her family and her doctors up in prayer. She is a sweetheart. She had the same liver disease as Carson, biliary atresia.

Take care, God Bless and give a friend or loved one a hug tonight!

Love, Carson, Daddy and Mommy

Sunday, September 08, 2002 at 09:10 PM (CDT)

Good evening! Another great weekend for the three of us. :-)

We left early yesterday morning and arrived in South Saint Paul at "Auntie" Marisa's house shortly after noon. We visted a bit with Marisa and her parents and changed into our wedding clothes. We attended the beautiful ceremony of Jeremy and Summer's marriage in the chapel at Northwestern College. After that it was off to the Science Museum in St. Paul for the reception. We were able to tour the museum for a bit before the reception started, which was fun.

Although this was our first "fun" trip to the Cities in 15 months, we still couldn't get away from medical professionals! At our table sat several nurses and one of the fellows from the PICU. :-) It was fun to show the great progress that Carson has made since those long and scary days last winter.

After Summer showered Carson with kisses (watch out Jeremy!) we left to get a certain little someone to bed.

This morning we visited with Marisa and her family more, walked to the park and enjoyed being outside for a bit and then had lunch with more "liver" folks! We met Kim, Terry and their kids--Sami and Kyle. We've "chatted" on CLASS lots, but never met. Sami is listed through Fairview, but is doing very well. After swapping some doctor stories, we visted a bit more, snapped some pictures and we got on the road. It was a fun afternoon.

We found out that Chris Klug, the Olympic medalist snowboarder that has had a liver transplant, is coming to our transplant center! We won't be able to be there, but it's fun just knowing he'll be there. There was a national contest for organ recipients to write an essay and the winning essay won the chance for Chris come to their center. Pretty neat! We followed and cheered him on in Salt Lake.

It's been a good week here--Carson is getting into everything. The gate is always up, otherwise he'd crawl up the steps non-stop. We let him go up quite a bit supervised, as it's good therapy! He's an expert at pressing the buttons on the TV (even changed the language to Spanish--Daddy had fun trying to figure out how to change it back to English!). He can pull himself up very well now and is finally starting to use his knees to get up and around. It's so adorable.

Carson was also featured on the news this week. We (and several others) are working to start up and get the word out about the Fargo-Moorhead Community Council of the American Liver Foundation. The clip talked about the council, but also featured Carson and how well he is doing. It was a great piece. (We're not biased though, either!)

We met with Early Intervention on Friday--it was a packed room! OT, PT, deaf/hard of hearing, speech, health nurse, early ed teacher, social services and two other reps (can't remember right now!). Carson flirted--he was pretty excited that nine women had gathered to talk about HIM! Since he still has significant gross motor delays, he qualifies for services. At this point he will have PT and the early intervention teacher each come into our home once/week. There is also a weekly play group that we can bring him to for kids 1-2 years of age that are also in Early Intervention. This will be a good way to get him some social interaction in a pretty medically safe environment. We had opportunities to do some of this in Fargo, but we didn't do it since he was so soon out of tx. Now we hope to do some.

With the beginning of PT through EI, we said goodbye to our physical therapist, Heather. She's been with us since February. We will miss you, Heather! We'll keep in touch!

This Friday is Carson's hearing test. We're nervous, but looking forward to (hopefully) getting some answers. We will keep you posted.

That's all for now. Take care and God Bless!

Love, Carson, Daddy and Mommy

Monday, September 02, 2002 at 06:24 PM (CDT)

Happy Labor Day!

We just got back from a wonderful and relaxing weekend! We spent three nights at the lake home of Craig and Barb. They live near Longville, MN (east of Walker). Their daughter, Kim, and her husband Bill and two kids--Kari and Emily and the three of us had a fun-filled weekend. Our top priority was to have a three-hour nap (achieved by all three of us). We also went on a boat ride (Carson's first), ate, did some crafting, read some books, ate supper by campfire, watched Kari catch a fish and ate. (Did I mention that we ate?) We had a great visit. It felt so good and we came back home refreshed.

Carson really enjoyed playing with Kari and Emily. They are partners in crime! It was so cute to watch the three of them together.

In other Carson news, his latest EBV level came back last week--bad news. His level went up. They were at the highest they've ever been (2400), up from the lowest they've ever been. He had a prednisone taper yesterday, so hopefully that will help. He had labs drawn Thursday evening and we will know about that EBV level in a few weeks. The rest of his labs look pretty good.

Carson also got new shoes on Thursday--after labs. They are official walking shoes. Although he's not walking yet, he is cruising quite well and with fall around the corner, he needs his tootsies protected when we're out and about. He likes his new shoes and was quite silly in the shoe store showing them off.

This weekend we will see Summer get married. She works in the PICU at Fairview. She was so good to us during our time there. We will also be getting together with some of our liver buddies. Should be another fun weekend!

We will be getting his hearing checked soon--probably in a week or two. We're not really optimistic about it--we haven't noticed a big difference since he got the tubes placed. We will wait and see. It's hard to think of yet another obstacle for him to face.

Take care and God Bless!

Love, Carson, Daddy and Mommy

Saturday, August 24, 2002 at 04:11 PM (CDT)

Hello!

Sorry it's been so long since the last update--it's been really busy. Here are a few highlights of the past few weeks:

Carson has begun crawling up the steps (with supervision, of course!). He really motors up the steps and sometimes rather than using his knees he insists on getting his whole leg up and uses his feet to climb instead of his knees. Quite interesting! He is really cruising around furniture (and walls, end tables, book cases, etc.). He certainly keeps us moving and we have further developed the eyes in the back of our heads!

Carson got tubes in his ears last Wednesday at Children's Hospital in Minneapolis. It went very well and he was away from us for about 15 minutes. Dr. Sidman (the ENT we worked with last summer there for the lump in his neck) placed the tubes. Much to our delight, we also got to see Dr. Ferenci (Carson's first GI) and Dr. Baker (Carson's cardiologist). Both were very impressed with his growth. He was sleeping so he couldn't show them any of his latest tricks. We will be back to see Dr. Baker in November or December for a check-up and we'll continue to try to "hunt down" Dr. Ferenci whenever we're at Children's. :-) We also toured the PICU and got to thank many of the caregivers Carson had after heart surgery. It was strange being back at Children's to an extent--so much has happened since we were last there for heart surgery. In a way it seems like years ago.

We are really settled in and just have a few things to put into place at the new house. We really like the big deck we have and Carson is eyeing up the back yard. Next year he will be running around back there. :-)

We've had some visitors the past few weeks too--Auntie Diane, Uncle Paul and cousin Steven came over for a grill out last week. A co-worker of Mommy's came over for supper too one night. Jill had the best cracker spread (Mommy couldn't stop eating it!) We also had Jamin, Tanya and Megan Tauer over for supper last weekend. Megan is 1 month post-transplant tomorrow! She is doing fantastic! Keep it up, Megan (Mom and Dad too!). We had lots of liver stories and labs to swap. There is something so incredible about talking to someone else about transplants, labs, doctors, etc. That's the positive part to this whole journey--the wonderful people we've met.

We also had visitors from Minneapolis--Summer, her fiance Jeremy and Summer's mom, Renee were in town for some family stuff. Summer works in the PICU at Fairview and Renee was a nurse on the transplant floor. Both have taken great care of Carson and us! We had supper and a great visit. We will be heading down to the Cities for Summer and Jeremy's wedding in a few weekends. (She is one of Carson's girlfriends--watch out Jeremy!) It will be our first "fun" trip to the Cities in almost a year and a half!!! It should be lots of fun and a very special day for Summer and Jeremy.

We've also been working to begin a community council of the American Liver Foundation in Fargo-Moorhead. The Minnesota chapter covers MN, ND and SD. We met a week and a half ago and there is some great interest. We are hoping to do some educational events and a liver walk next spring. If anyone is interested in being a part of this, please contact us! (email tandrkitch@yahoo.com) (You don't need to have a liver disease to join--just a desire to help educate and hopefully put an end to liver diseases!) As we gathered, three of the families had kids transplanted due to biliary atresia--Brandon, Megan and Carson. They will be our "Dream Team" for the Liver Walk. We'll keep you posted on the details as they emerge.

We're amazed that September is almost here. Where did the summer go? Carson has had such a blast going barefoot and wearing shorts that the transition to socks could be interesting. We are thinking about getting his first pair of walking shoes this Thursday evening (when we go in for labs).

That's about all from our place. Hope all is great for all of you! Take care and God Bless!

Love, Carson, Mommy and Daddy

P.S. Please keep a family in your prayers--their 11 month old Jakob passed away on August 14th after an incredible fight. He had three liver transplants in his short life, but he touched many people. We've never met this family, but our heart aches for them. Prayers for them would be much appreciated. Thanks!

Monday, August 12, 2002 at 05:57 PM (CDT)

Hello!

Great news! First off, Carson has been "discharged" from the care of the surgeon in Fargo. His infection site is healing great. Yah!

Secondly, Carson has two more prednisone tapers--one on September 1 and one on October 1. On November 1st he is done with pred!!! YAH!!!! This is so great!

Third, Carson is on the move. His latest trick is to pull himself up. He can't do it everywhere quite yet, but can in many situations. He walks around furniture like crazy, practically running sometimes. He knows he's big stuff and he's proud of his skills. He should be!

Tonight we are going to a Redhawks game (Fargo's pro baseball team). Today is Carson's 1st Baptismal Birthday. We can't help but think of all that has happened since that time and how little he was then! He is such a miracle and it's clear that God has watched over him through these months.

On Saturday night we watched fireworks from a distance. A pyrotechnic show was in town. It was amazing. Carson loved it and clapped after each round. When we got home he kept looking out the window and clapped more--he was looking for more fireworks. How cute.

On a final note, Carson WILL be getting tubes in his ears on August 21. Labs last Thursday (which looked great) also included a fluid check--still there. :-( Of all of his procedures, this will probably be the easiest, but we never like handing him over for anything that involves the OR (or anything else for that matter!)

At his labs he hardly fusses--just when the needle went in or when Vicky had to adjust the needle. Other than that he was pretty content and just watch the blood come out. He was pretty interested in it. They needed 10 cc's (about 1/3 of an ounce!) so it took a bit, but he did great!

Our buddy Megan is a TRANSPLANT SUPERSTAR! She is back in Fargo (got back Friday) and is doing great!!! YAH!

Andrew is doing better as well. Still some issues with some rejection, but they are getting things under control. Way to go, Andrew!

It just goes to show that kids are tougher than adults! Now if only we could bottle up some of that energy and use it ourselves...

Thanks for the prayers, take care and God Bless!

Love, Carson, Daddy and Mommy

Monday, August 05, 2002 at 04:39 PM (CDT)

It's been a busy week. We've gotten lots of boxes unpacked and things are looking pretty good. Not to the point that we can take an evening "off" yet, but we're getting closer.

Carson has given us quite a rollercoaster week. Last Tuesday we met with a surgeon at Innovis (our hospital). He lanced the "red bump" and lots of gunky yucky stuff came out. :-( He took a culture and put Carson on an antibiotic and scheduled a re-check for Thursday.

On Thursday, Carson also met with an infectious disease doctor. He added a new antibiotic (Cipro--what they treat anthrax with!) as well as a topical antibiotic. The culture came back positive for a certain infection growth. Not good. We got word that if the culture results looked a lot worse by Friday, Carson had "earned" himself a ticket to Minneapolis for a central line and some IV meds for a few weeks. Not how we wanted to spend our weekend! On Friday we found out that things were holding their own and the oral antibiotics should cover it. There was lots of speculation of what could be causing this--most leading to the Hickmans that he had. Oh well--they saved him hundreds of pokes, if not more, so they were well worth it!

We got word on Friday that his July EBV levels went down a bit--from 2100 to 1800. Not much, but we'll take it! :-) We were thankful that they went down.

At a recheck today with both the surgeon and the infectious disease doctors, we had great news! The surgeon was able to get the cuff from the Hickman out from the site--that's what was causing the problem. They are often left in and not always a problem. Apparently Carson didn't like the extra baggage. Now that it's out we should be good to go! They d/c one antibiotic and we just have until Friday with the other. WOO HOO!

We have been watching the exciting process of Megan, Carson's liver buddy. She was transplanted on July 25th and could be back in Fargo on Wednesday!!! She's doing GREAT! Way to go to Megan, Mommy and Daddy (and all of the rest of her cheerleaders)!

We have been praying for Andrew too, another liver buddy of Carson's. He was transplanted May 1 and is in the hospital with a major EBV flare-up. He has coded twice in the last week, but is stable now. Mommy had a good visit with Andrew's Mommy and we know that our two boys will play together someday and compare scars!

Please keep both of these kids, their families and their doctors in your prayers.

Well, more stuff to get settled in! Have a great week. Take care and God Bless!

Love, Carson, Mommy and Daddy

Sunday, July 28, 2002 at 09:22 AM (CDT)

Good morning!

We are digging out from all of the boxes...in fact the "unpacked" boxes now outnumber the "packed" boxes. That's a good sign. It's feeling more and more like home.

Carson's liver buddy Megan is doing great since her transplant on Thursday. She loves her new liver! She is full of spunk and can't wait for some animal crackers. We're so happy that things are going so well and pray that they continue to sail along.

Carson likes to be sure that we never have a dull moment...he has had a red bump on his chest for a few weeks now. We've had two doctors here look at it. It was diminishing until Friday. It started getting bigger and is fire red. It's not bothering him, which is good. We called Dr. Haugen and he's set up an appointment with a surgeon on Tuesday and see where we go from there. It will probably need to be lanced and biopsied. We're quite positive it's nothing to do with the EBV and the possibility of lymphoma, since he had CT's 3 days prior to its appearance and the CT's looked great. It's not far from his Hickman entrance sites, so possibly scar tissue??? So, one more thing to pray about! He loves to keep us on our toes...what will he be like when he starts walking? :-)

Well, some boxes are calling me...take care and God Bless!

Love, Carson, Daddy and Mommy

Thursday, July 25, 2002 at 03:57 AM (CDT)

Good morning!

Today is a BIG day! We have everything out of our old place and we're ready to close on both houses this morning. It was hard to close the door last night--we've put a lot of work into that place, combined with a lot of great memories. Leaving Carson's room was the hardest. But, we keep telling ourselves we will have lots of new memories at the new house too. Once we start moving, I know we'll get more excited. Just a lot of emotions!

The best news was yet to come; we got a very exciting call last night...our friends Jamin, Tanya and Megan Tauer were on their way to Fairview University Hospital because they "got the call"! A liver was available for Megan!!!! They have been in our constant thoughts and prayers ever since. Megan just turned 5. She has (soon to be had!) the same liver disease as Carson--biliary atresia. Please keep them in your prayers. Megan was brought into surgery about 2:30 a.m. and we should know more as the day rolls on. Her website is: http://www.caringbridge.com/nd/megantauer if you want updates (I don't know how close we will be to a computer for the next few days!) Please keep her donor family in your prayers as well. We have been so lucky to get to know the Tauers--they are a wonderful family! GO, MEGAN, GO!

Well, I should try to get some sleep--busy day! Take care and God Bless!

Love, Carson, Mommy and Daddy

Wednesday, July 17, 2002 at 04:22 PM (CDT)

Great news! We found out the results from the CT's last Thursday--there are no lymphoma masses. The doctors didn't suspect anything, but we still are relieved that the tests backed it up.

Carson's been quite the helper with packing. He enjoys pulling stuff out of boxes, so he will be the MOST help next week when we're unpacking! :-)

We also wanted to pass along a story. It's been almost a year since we've seen it, but it sums alot of our feelings up. Some people ask how we do what we do, and we always say that we do it for Carson. That's true. He is our world. We're excited that things are getting back to normal for us. Granted our "normal" is different than others, but we have met so many people in the past year that labs, meds, vitals and liver disease are a normal part of their life. So, as we continue to enjoy Holland we are often reminded to stop and smell the tulips!

Welcome to Holland
(author unknown)

I am often asked to describe the experience of raising a child with special needs - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You get a bunch of guidebooks and make your wonderful plans - the Coliseum, Michelangelo's David, the gondolas in Venice. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"Holland?" you say, "What do you mean, Holland? I signed up for Italy. All my life I dreamed of going to Italy."

"But there's been a change of flight plan. We've landed in Holland and there you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence and disease. It's just a different place.

So you must go out and buy new guide books, and you must learn a whole new language. And you will meet a whole new group of people who you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there a while you catch your breath, you look around and you notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming from and going to Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "That's where I was supposed to go. That's what I had planned."

The pain of that will never ever go away, because the loss of that dream is a very significant loss. But if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Take care and God Bless!

Love, Carson, Mommy and Daddy

Tuesday, July 16, 2002 at 08:14 AM (CDT)

Just a quick update!

Packing is going well--we pick up the moving truck a week from today!

We have labs this week. :-( We never like those pokes! Carson also gets an immunization on Thursday, so it will not be a fun evening.

We had him in to the doctor last night because of a strange-looking red bump on his upper chest. It's about the size of a nickel. We're going to keep our eye on it. We think it's better today than it was yesterday.

We are speaking at a donor family picnic this Friday evening. What an honor! It's hard to know the words to say to such an incredible group--how do you thank them for making the amazing choice they did?

And...there are new pictures on Carson's "Webshots" link. There are just a few pictures, but we wanted to update you with how great he is looking.

Thanks for all of your prayers. Have a great week! God Bless!

Love, Carson, Daddy and Mommy

Friday, July 12, 2002 at 05:53 AM (CDT)

Good morning! We have great news to report! We got back from the Cities last night and Carson's report card looks good. :-)

We met Joel, Jody, Lacee and Jaden for supper in Alexandria on Tuesday. It was fun to see all of you! Thanks for coming up!

We met with Dr. Sharp on Wednesday and he was pleased with Carson's growth. He thought everything felt fine--Carson is growing into his spleen so it's not nearly as enlarged as it was six months ago. Dr. Sharp talked about some of the labs (platelets, LDH) that we were concerned about. He will keep an eye on them, but he's not too worried. We asked lots of questions about EBV. He didn't feel any enlarged lymph nodes on Carson and felt his EBV levels were still manageable enough to treat with oral valgangcyclovir (an antiviral) rather than do anything with IV's. YAH! He also told Carson that he took handsome pictures. :-)

Our next visit to the transplant team (unless Carson decides he needs to see them sooner) will be in December for Carson's one year anniversary check-up. We're hoping to combine it with a cardiology appointment too. Carson will have a liver biopsy then to be sure that everything looks good. Also, we can do labs every three weeks now. :-)

We were on top of the world after that appointment. Certainly a different kid than we had 6 1/2 months ago.

On Wednesday evening we had a picnic at Ronald McDonald House. Marisa, Ryan, Steve, Dolly, Michelle and Summer all joined us for a cookout. It was fun to visit and see everyone. Those evenings just fly by.

We also learned that there would be a special visitor to the hospital on Thursday--President Bush! Carson's CT's were in the morning and we arrived extra-early to avoid detours or hold-ups. Carson's CT's went well--we'll know results hopefully next week. While he was recovering we watched the motorcade pull up from our 5th story window.

Carson was discharged and we made our way back to Ronald McDonald. We loaded up the car and were on our way. But wait! President Bush was leaving now, so we had to wait for the motorcade to pass. Mommy hopped out of the car and snapped a picture--we were only a few cars away! Daddy counted 27 cars in the motorcade! With enough excitement for the day, we headed west and made our way home.

We continue to be in packing mode. Hopefully it will be a productive weekend.

We got Carson's latest EBV levels back on Monday. It did rise again, but not to the extent it did in June. Carson had a prednisone taper on July 1 and hopefully with a little less prednisone in his body he will fight off the EBV a bit.

Today is Daddy's birthday. Happy Birthday, Daddy! Daddy says that the only present he wanted was a great report from the doctors. Guess his wish came true!

That's all for now. Have a great weekend and God Bless!

Love, Carson, Daddy and Mommy

Thursday, July 04, 2002 at 07:20 AM (CDT)

Good morning! Happy Fourth of July and Happy Belated Canada Day!

Our little "firecracker" is still sleeping, so that gives us a chance to update.

Carson is doing several new tricks--he likes to clap his feet (especially in the tub to create waves), clap his hands, wave "bye-bye", give "5's", make funny faces and imitate Mommy and Daddy. He LOVES to stand and hold on to furniture--he thinks he is pretty cool. It's so cute to see him stand there! He can't quite pull himself up to furniture yet, but he is getting to the places he wants to go by crawling and rolling. He also loves to chew apart board books. :-( Not the fiber we had in mind for his diet! We're glad he loves books, he likes to look at them too, but usually they end up as a snack. So, no unsupervised time with books for Carson!

Daddy leaves today for Uncle Derwin and Auntie Dana's wedding ceremony in Claybank, Saskatchewan. We wish that all three of us were making the trip--it's just too long of a stretch for Carson. Our thoughts will be with them though and we're excited to see lots of video and pictures!

We also will celebrate Mommy's Grandma's 90th birthday this weekend. She is as sharp as ever and full of spunk. Quite the inspiration!

On Sunday, Nana and Papa will bring Daddy back home. We have a feeling that they are making the trip for other reasons than bringing Daddy back--perhaps would it have anything to do with Carson?!? It will be fun to show off his new tricks and progress.

Carson (with Mommy's help) is going to get lots of packing in this weekend. We close on both houses three weeks from today. There is LOTS to do between now and then.

We are thrilled that Daddy is back up to full speed. YAH! He has his energy back and feels just fine. :-)

Carson had labs yesterday--all looked great except for his LDH. We'll have to ask the tx center about that one. It's been rising the last few weeks. :-( Still no results back on his EBV level from two weeks ago. Will check tomorrow.

That's all for today. Have a safe holiday weekend! God Bless!

Love, Carson, Daddy and Mommy

Thursday, June 27, 2002 at 06:30 AM (CDT)

Good morning!

It's been a bit since our last update...here's what's new!

We visited with an ENT about Carson's possible hearing loss. There is some fluid in his ears and it looks like tubes are his best option. Hopefully that's all it is. After the tubes are in place, they can run some hearing tests to see if it is nerve damage or not. We will be heading to the Cities for tubes (the actual procedure is easy, but Carson is quite complicated from an anesthesia standpoint.) So, that will be in August. We should know by mid-September if there is nerve damage or not. Carson has a speech evaluation on Monday and we'll see if he starts any speech therapy.

Labs last week went well. Only two pokes--YAH! We will hopefully know next week what his June EBV level did--hopefully it didn't take a big jump. :-(

We're packing and preparing for our move...less than a month away.

Daddy is feeling better and better every day. Woo-hoo!

We went to Megan Tauer's 5th birthday party over the weekend. (Actually, it's Princess Megan!) It was lots of fun and we got to meet some of Carson's fans. It was so great to meet you all! Megan is a liver buddy of Carson's. She has biliary atresia and is doing well without a transplant--YAH!

Carson has started pulling himself up on furniture and tables. His crawling is getting better and better as well. He is quite the mover. Of course, there are lots of things to get into with boxes scattered here and there. :-)

Oh another note, please keep a little girl named Drew Denny in your prayers. She is a 2 year old with biliary atresia. We met her and her wonderful parents in Green Bay a month ago. Drew had been doing very well, when suddenly she had a major GI bleed a few weeks ago. She was hospitalized for a strech and is home and doing well now. Next step is a transplant evaluation in the next few weeks. We know that Drew will fly on through whatever lies ahead, but please keep her and her family in your prayers. (You all seem to have some pretty good experience in that department, by the looks of Carson now!)

That's all for today. Have a great week and weekend! God Bless!

Love, Carson, Daddy and Mommy

Monday, June 17, 2002 at 10:44 PM (CDT)

Hello from the Kitch family!

I'm sure most of you know the saying...when life gives you lemons, make LEMONADE! Well, we have a sale on lemonade at our house this week!

On a very positive note, Daddy is feeling better. He still has to take it easy for the next few weeks, but it looks like the worst of his mono is over.

On another note, we have sold our house and found a new house! It all happened very quickly. We are moving about 4 miles from our current home. The new home has the master bedroom and one other bedroom on one level (currently we're not) so that will be handy. Also, there is a huge backyard for Carson to run in. We move July 25th. Let's start packing!

We will be heading down to the Cities in a few weeks for some CT's to check Carson's lymph nodes for PTLD. I'm just so nervous about it. We will also meet with his GI doctor.

As for our lemon...we had a preliminary hearing test for Carson a few weeks ago. Today was some further testing. It revealed that Carson has mild to moderate hearing loss in his right ear and mild to possible moderate hearing loss in his left ear. The hearing loss appears to be in the high frequency range. Since his hearing was tested at birth (like all newborns) we know it's happened since then. It's very likely that it is due to the prolonged high levels of bilirubin he had before transplant. We meet with an ENT doctor this Thursday and then Carson will have a Auditory Brainstem Response test to follow--likely in the next several weeks. He will be sedated and electrodes will be placed on his head. Sounds will go off through a headphone and his brainwave response to the sound is recorded and analyzed. It would give us exactly what ranges he is missing. We will know a lot more after that test (as far as what's next). It was hard today, as it's just one more thing for him and another issue to face. I keep asking myself how many more medical surprises we will have.

But, we have lots to celebrate too. Thankfully, Carson was transplanted when he was. Had he continued on the path he was on, who knows how his hearing would have been further affected. Also, Wednesday, June 19th will be his one year anniversary of his Kasai surgery and our diagnosis of biliary atresia. That was such a hard day, but we've come a long way since then. He's so happy and such a joy.

Our extremely exciting news of the week is that Carson is on the MOVE! He has learned to crawl. He hasn't quite figured out all fours yet, but he will pull himself all across the living room floor. If he sees something he wants, watch out! He started a week ago and he has really picked up speed since then. It so cute--he gets so determined and sticks his tongue out while he's on the go. It must be easier to crawl with your tongue out!

Well, that's all for today. It's time for bed. It's been a rough day. We could use an extra prayer tonight. Hugs to all and God Bless!

Love, Carson, Mommy and Daddy

Friday, June 07, 2002 at 09:27 PM (CDT)

Thank you for all being so patient! We've had a rollercoaster ride the last few weeks.

We were able to go to Minneapolis. We left on Wednesday, May 29. Daddy was feeling a little better, but not much. He rested lots on the way down. On Wednesday morning we had a "good news/bad news" call from our transplant coordinator. The good news was that Carson was going to get his Hickman IV out the next day, but the bad news what that his EBV numbers were up from April. But, they are not high enough to currently treat by IV. So, he has a new medication to take orally to hopefully help with EBV.

EBV is Epstein Barr Virus and is like mono. At least 90% of adults would test positive for it. For a healthy person, you feel run down and yuck, but rest up and recover. For an immune-suppressed kid who hasn't had it, it can be tough to fight off. We have learned that Carson contracted it from his donor liver. This is VERY common and since I tested postive he would have likely gotten from me had he received a portion of my liver. So, the plan is to see how he does on this new medication. Sometimes in an effort to boost his immune system to fight off the virus, the immune suppression medications are lowered a bit. But, then you run the risk of acute rejection episodes. Fun stuff. We see more and more the fact that medicine is more an art than a science!!!

We were greeted by Marisa, who we're convinced hangs out at Fairview, on Wednesday evening. She loves oohing and ahhing over Carson. (I hope she likes to see us too!!!)

So, early on Thursday morning we arrived at Fairview. We checked in a "one-tube" baby and left with a "tube-free" one! We realized that it had been 7 months and one week since Carson had been tube free. Wow. Felt wonderful!

We got to see many of our Fairview buddies: Summer, Lisa, and Jody to name a few. We got to meet a few special people (Hi Amy!) and had supper to celebrate Ryan Bollig's one year transplant anniversary. Way to go, Ryan! We are honored that we got to share the evening with you. You are such an inspiration!

On Friday morning we had a cardiology appointment with Dr. Baker. He was happy with Carson's growth. An echo revealed that the leak around Carson's patch in the hole in his heart has increased since January. We're going to keep a close eye on it and we will see Dr. Baker again in 6 months. He may do a heart cath to take a look at what is going on. We hope and pray that the leak will not worsen and not require surgery. We of course are worried about that prospect and about how is precious new liver could react. Of course, with a healthy liver, things should be fine, but it's part of the parental worrying process!

After that it was off to Green Bay! (Gathering of families/people with pediatric liver diseases from across the country.) It was primarily a CLASS group (Children's Liver Association for Support Services--see web link below.) We got there by mid-afternoon. We all gathered on Friday evening and started putting names and faces together. It was so fun to meet the people we've gotten to know this past year on-line. Oh the stories we told!

We felt it was very appropriate to be in Green Bay with other "liver families" on May 31st. It was a year ago that date that we started testing on Carson. Little did we know what was ahead, but we sure have met some incredible people on our journey!

Saturday morning a transplant surgeon from Pittsburgh spoke, which was very interesting. Then off to the park by the Bay. It was beautiful and the kids had a blast. Carson went on a train ride in the amusement park. We ate, played and visited lots more. Lots of pictures too. We had green shirts (green for organ donation awareness) made and all wore them for a family picture. I will post it when we get it.

On Saturday evening we all got into swim gear and introduced Carson to the pool. We only got him wet to about his transplant scar because of the Hickman removal. He LOVED the pool (it's a big bathtub, right?).

Sunday morning came all too quickly and soon we were on our way back home. We met Uncle Chris for breakfast in Wausau. Yum, yum.

On Sunday evening we celebrated Mommy's Godson and Cousin Steven Newburgh's high school graduation. We're proud of you!

Early Monday morning Daddy left by bus for Swan River for Grandma's funeral on Tuesday. Because of a bus delay, he ended up missing his connection in Winnipeg and got into Swan quite late. :-(

It sounds like the service was beautiful, as it should have been for such a special woman. Grandma, you will be dearly missed by all who knew you!

Daddy got a really bad sore throat on Wednesday and is still dealing with it. He got back early this morning and is wiped out. I've seen him for about 20 minutes today. Hopefully he feels better by tomorrow after a good night's sleep!

I have a whole new appreciation for single parents after this week. It was such a crazy week and we're used to being such a team in Carson's care. Carson was very patient with me and we got vitals in twice a day as scheduled and meds on time! Special thanks to Kim and Bill, Grammy, Joetta, Auntie Diane for caring for Carson this week! We appreciate your help!

We had our first round of labs last night post-Hickman. Yikes. Carson's veins aren't what they used to be. He hasn't been poked since October. Thankfully it was Vicky on for labs and nurse Julie to hold down Carson. After three pokes we got it! (That was our limit, so good thing.) I won't describe it, but let's just say it was quite the sight how the three of us got him held down. Thankfully we don't go back for two more weeks, so he can heal up. We got the results today and all looks good. Next EBV is run in two weeks.

Speaking again of EBV, we'll be heading back to Fairview soon for some CT's of Carson's chest and abdomen. A potential outcome of EBV is PTLD--post transplant lymphatic disorder. Basically this is a cancer that affects the lymph nodes. The docs want to do some CT's to check his lymph nodes and make sure nothing is funky looking and they can also use them as a baseline for future CT's. So, please pray that all will look good!

We keep thinking of what we were going through a year ago. Can't believe it's already been a year. Carson's one-year Kasai anniversary will be June 19th. Other Biliary Atresia families kept telling us that the first year was the longest--it has been in some ways and in others it has flown by. We're just thankful that Carson continues to be such a little miracle!

And, I have my first sign that the year has been "fun"--I found my first gray hair this past week. I wonder who contributed to that? :-)

Well, it's time for bed. Have a great weekend!

Love and prayers, Carson, Mommy and Daddy

P.S. UPDATE: 10:15 pm on Saturday--Daddy still was not feeling better today, so in to Urgent Care. Turns out he has MONO! So, lots of rest for him the next 6-8 weeks. Please keep Daddy in your prayers!

Tuesday, May 28, 2002 at 09:15 PM (CDT)

Good evening from the Kitch house.

Our day didn't get a whole lot better after Daddy woke up sick again. We got a call this morning that Travis' Grandma Morris passed away during the night. We so deeply saddened by her death. Please keep her family in your prayers.

Daddy is still not feeling very well. We visited with our nurse (thanks, Julie!) and it sounds to be viral. It needs to run its course. His fever is up tonight. :-(

Carson's EBV level was still not back by late this afternoon. We're really on edge over this. That level determines if Mr. Hickman comes out or not!!! Hopefully tomorrow we'll know.

The hearing screening was interesting. At this point, it's hard to tell if Carson has a hearing loss. So, we head back for another test next week. This time we need to keep him awake for a while and then bring him in when he is super-sleepy. Then he'll fall asleep and won't fight the ear plugs. If that one doesn't work or if it looks like any sign of a loss, he'll need another test. This one he would have electrodes and be sedated for. Hopefully we won't get that far. We will keep you posted.

Time for Mommy to get a bunch of stuff done around the house. Both of my two favorite boys are sleeping. Take care and God Bless!

Love, Carson, Mommy and Daddy

Tuesday, May 28, 2002 at 06:47 AM (CDT)

Good morning from the Kitch house!

Hope everyone had a Happy Memorial Day. For the most part, we did. Daddy has been sick the last few days. Please keep him in your prayers! So, since Daddy is still not feeling well today, Mommy is home from work to be with Carson.

Papa Chip was in town for the weekend and he and Mommy got a lot of projects done around the house while Daddy rested. Felt good to get stuff done! We enjoyed the outdoors too, since it was such beautiful weather.

The highlight of our weekend was meeting Carson's "Spirit Grandma". Kathleen has signed Carson's guestbook many times through the past few months and we finally got to meet! We had a great evening visiting with Kathleen and Jerry. It was a very special night. :-)

We hope to hear today on Carson's EBV level that was drawn last Monday. Carson's labs yesterday looked good...hemoglobin is down a bit again, so we'll have to see what the transplant center has to say today. If his EBV level is stable, it looks like he'll get his last tube out this week. Can't wait to have a tube-free baby!!!

Carson also has a audiology exam late today. There is some concern that the high bilirubin levels he experienced for so long could have affected his hearing. We feel that he responds to sound well, but we just want to check all of the ranges. Hopefully all goes well. If he has any loss, at least we will have caught it early.

His work with PT and OT continues to go well. He just loves playing with Beth and Heather!

That's all for now. Will update on EBV and the hearing exam once we know results!

Have a great day and God Bless!

Love, Carson, Mommy and Daddy

Saturday, May 18, 2002 at 07:35 AM (CDT)

It's been an up and down week. On the up side, Carson's therapy sessions continue to go well and he is making good progress. He is rolling everywhere and we are now "baby-proofing" everything in his range. The cats are "thrilled" that Carson is more mobile! Carson's made no attempt to crawl yet, but it very busy getting into things!

Carson had a physical on Thursday night. He needs one before his Hickman can come out in a few weeks. Dr. Haugen thought all looked good! :-) Carson also got four shots. He was quite upset with Mommy and finally settled down once we got out of the clinic. He is now on the growth charts! As of this morning he weighs 19 pounds 3 ounces. He's really grown a lot since February.

We also learned on Thursday that a precious child died--another one of our "Fairview Friends". We got to know her Mom quite well. Our prayers are with them and she will be a beautiful little angel.

We went to the zoo in Wahpeton last night and had a great time. We even got a personal tour from someone that Mommy knows there! Carson liked the big kitties (tigers and cougars) and the monkeys too! We plan to go back again later this summer.

Today we have a car seat clinic to go to--we got Carson a new car seat and the professionals will help us make sure it's installed properly. We've looked at the owner's manual and some of it is Greek to us, so we're going to play it safe! We've got precious cargo!

Tomorrow afternoon is our little friend Kari Gillette's birthday party! YAH! Kari will be five!

We're getting excited for our upcoming trip to the cities in a few weeks--we hope to get Carson's Hickman out. Then he will be tube-free! We also visit with Dr. Baker, Carson's cardiologist. He hasn't seen Carson since the end of January, so he'll see a SMALL change. :-) Then we'll be spending the weekend in Green Bay, Wisconsin. We'll be meeting up with our extended "liver family" that we've gotten to know through CLASS--Children's Liver Association for Support Services. There will be people from all over the country coming together. It will be so fun to put names and faces together. They have been a wonderful support network for us this past year!

Carson's labs continue to look good. We're a little nervous about his EBV (Epstein-Barr Virus) levels and that one will be drawn on Monday. Hopefully we won't wait too long to find out where it's at.

That's all for now. God Bless!

Love, Carson, Mommy and Daddy

Tuesday, May 14, 2002 at 09:32 PM (CDT)

Kitch family update:

Carson has molars now! He's up to nine teeth and the tenth is almost breaking through. He's been a bit cranky here and there, but is much better this week than last.

We've made two more trips to the zoo--one last Friday and one on Mother's Day. Once again, the goats were a big hit. He got to pet a baby calf on Friday, which he thought was pretty cool. Of course, we were wiping him down with baby wipes! Nothing like experiencing nature but getting cleaned up quickly afterwards! We're pretty paranoid about the whole germ issue.

Mother's Day was wonderful. This Mother's Day was pretty special for Mommy, even though it was her second Mother's Day. We're so thankful to be celebrating it with Carson, as it would have been so difficult to be a "childless parent" and face a day like Mother's Day. Once again, our donor family was in our thoughts and prayers for giving the gift of life. Oh how hard this day must have been for them! Through their precious decision we can celebrate EVERY day with Carson.

Our day was busy. First we went to church. Then a big meal with the "Moms"--Rhonda's Grandma, Mom, Aunt, and Cousin and the "men" feasted for a Mother's Day celebration. After that another trip to the zoo. More giggles and squeals from Carson. He enjoyed the carousel ride a lot more this time as well. He bounced the whole way through it, which made it challenging for Mommy to hang on to him! A special Mother's Day gift was on the way as well--Carson and Daddy gave Mommy a beautiful necklace with two parents holding hands with their child. It's very precious!

Today was Daddy and Mommy's eighth wedding anniversary! Wow! Time has flown by. Grammy played with Carson while Daddy and Mommy went to supper--A DATE?!? WOW! (You'll never guess who was the topic of our conversations though!!!)

We're hoping the weather is nice this weekend. We want to get to the zoo in Wahpeton. Today was beautiful (which warrented a stroller ride). Hopefully the beautiful weather continues.

Have a great week! God Bless!

Love, Carson, Mommy and Daddy

Monday, May 06, 2002 at 01:36 PM (CDT)

We had a fun weekend. Mommy spent Saturday scrapbooking with lots of other people. She had lots of fun scrapbooking pictures (guess who was the subject of the pictures!?!).

We got lots done yesterday, including a trip to the Red River Zoo in Fargo! Carson had a blast and kept squealing at the animals. He especially like the African Pygmy Goats. We spent at least 15 minutes with them. He also went on his first carousel ride. He enjoyed watching more than riding!

Our liver buddies, Andrew and Jayli are doing well. Andrew should get out of PICU today! YAH, Andrew! Jayli has had a few "hiccups" in the road, but she is making great progress. Our prayers continue to be with them and their loved ones.

Today is Nurse's Day! Special thanks to all of the wonderful nurses who have taken care of Carson over the past year and to those that will continue to care for him! Nurses are angels with wings!

We want to leave today with the following story. It was passed to Mommy by a dear friend. It reminds us of Carson's story and we believe that his connection with God will be strong because of how God has cared for Carson.

Have a good week! Take care and God Bless!

Love, Carson, Mommy and Daddy

A cold March wind danced around the dead of night in Dallas as the Doctor walked into the small hospital room of Diana Blessing. Still groggy from surgery, her husband David held her hand as they braced themselves for the latest news. That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency caesarian to deliver the couple's new daughter, Dana Lu Blessing. 12 inches long and weighing only one pound and nine ounces, they already knew she was perilously premature. Still, the doctor's soft words dropped like bombs. I don't think she's going to make it," he said, as kindly as he could. "There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one."

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.

No! No!" was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away.

Through the dark hours of morning as Dana held onto life by the thinnest thread, Diana slipped in and out of sleep, growing more and more determined that their tiny daughter would live-and live to be a healthy, happy young girl. But David, fully awake and listening to additional dire details of their daughter's chances of ever leaving the hospital alive, much less healthy, knew he must confront his wife with the inevitable.

David walked in and said that they needed to talk about making funeral rrangements. Diana remembers 'I felt so bad for him because he was doing everything trying to include me in what was going on, but I just wouldn't listen, I couldn't listen. I said, "No, that is not going to happen, no way! I don't care what the doctors say; Dana is not going to die! One day she will be just fine,
and she will be coming home with us!"

As if willed to live by Diana's determination, Dana clung to life hour after
hour, with the help of every medical machine and marvel her miniature body could endure. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw,' the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.

There was never a moment when Dana suddenly grew stronger. But as the weeks
went by, she did slowly gain an ounce of weight here and an ounce of strength
there. At last, when Dana turned two months old, her parents were able to hold her in their arms for the very first time. And two months later--though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.

Today, five years later, Dana is a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She shows no signs, what so ever of any mental or physical impairment. Simply, she is everything a little girl can be and more- but that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ballpark where her brother Dustin's baseball team was practicing. As always, Dana was chattering non-stop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain."

Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet, it smells like rain. Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana then happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

Friday, May 03, 2002 at 03:59 PM (CDT)

Just a quick update:

LifeSource (the Organ Procurement Organization for North Dakota, South Dakota and Minnesota) is going to do a story about Carson!!! They did a lot of the "detail" work in getting Carson's liver across the country on December 30. They are going to send some people up from the Twin Cities and do a feature! Apparently this newsletter is sent to hospitals and doctors! We'll post more when we learn more!

In other great news, liver buddies Andrew Kane and Jayli Doremire are doing well after their transplants on Wednesday. Jayli is back in surgery today to control some bleeding, but we know she'll be just fine! Andrew was extubated already and is getting pink! When we saw pictures of Andrew pre-tx they reminded us of how Carson looked before heart surgery last October--a little yellow bug!

We hope to have a weekend outside. It's supposed to be nice out. Of course, this is North Dakota so anything can happen!

Love, Carson, Mommy and Daddy

Wednesday, May 01, 2002 at 08:53 PM (CDT)

WOW! Happy May Day everyone!

What a big day today ended up being! It is "Auntie" Marisa's 14th anniversary for her liver transplant. YAH! Then our little buddy Andrew Kane got his gift of life from his Daddy today. We just talked to his Mommy and things went well. Andrew is stable and Rick is resting. Then Jayli Doremire got the call this morning for her liver! Jayli had biliary atresia, just like Carson. She had her first liver transplant last August. She recently developed a problem and needed another liver urgently. Today was the day! So, three liver buddies will celebrate their gift of life anniversary today! Our prayers continue to go out to Andrew and Jayli for a swift recovery and that everything goes smoothly. We're also praying for their doctors, family and friends as well. We will keep you posted on their progress. We've never met Andrew or Jayli or their families but we feel powerfully connected to them through our experiences. We hate to see other families going through this, but we also value the life-long friends that we have made!

On the Mr. Carson homefront: he is working on tooth #8. This one is giving him a diaper rash and disrupting his sleep at night. Hopefully it pops out soon!

He is very vocal and jabbers all the time. He is very into bouncing. He loves to bounce in his Johnney Jump-up, on the floor or especially when we are holding him. Quite the bundle of energy!

That's all for tonight! Thanks to those of you for the messages you've left for Andrew on his website!

Love, Carson, Mommy and Daddy

Monday, April 29, 2002 at 04:37 PM (CDT)

Carson had a great birthday yesterday. In fact, we all had a great day! Mom and Dad set the alarm for a little before 5 AM (yes, we're a little nuts), so we could be with Carson at 5:02 AM--when he decided to make his appearance a year ago. Since he kept us up all night a year ago, we decided that 5 AM wasn't too bad after all!

We went to church and the whole congregation sang Carson "Happy Birthday". We wish we could have video-taped it, as it was very special! We're so fortunate to have such a wonderful and supportive Christian family!

After our walk home, Carson opened his birthday presents. He enjoyed it and didn't want to stop playing with a toy to open another present. It was cute. Thanks to so many of you for the gifts and cards!

Then it was nap time (it's hard work being 1 after all!). Later in the day, it was time to play with some of those new toys!

Our close friend Marisa made a special web page for Carson's birthday party last weekend. You can check it out at: http://www.txpiranha88.homestead.com/carson.html
Thanks, Marisa! It is a great page!

We also want to ask for your prayers for another little boy. His name is Andrew Kane. He is 7 months old today. He also has Biliary Atresia. He will be transplanted this Wednesday. He is getting part of his Daddy's liver. His web address is: http://www.caringbridge.com/nj/andrewkane. Since Carson's army of prayer warriors is so strong, we wanted to send out this special request. Thank you!

We just got word today that Carson's blood draws are now down to once a week. Yippee!

That's all for today. Love, hugs and God Bless to all!

Carson, Mommy and Daddy

Saturday, April 27, 2002 at 04:50 PM (CDT)

! HAPPY BIRTHDAY CARSON !

Monday, April 22, 2002 at 08:37 AM (CDT)

Good morning! It seems like we say this often, but it's been a busy week! :-)

A week ago we confirmed that Carson very likely has a dairy or lactose intolerance. A few hours after eating some cottage cheese on Monday evening (which he LOVED) he had major vomiting. He had more on Tuesday morning. Once it worked its way out of his system, he was much better. So, we'll work with our doctors to plan for this!

We also learned that Carson's final tube, the Hickman, will be removed on Thursday, May 30th. We will meet with his cardiologist, Dr. Baker on May 31st.

On Friday evening, we attended Celebration of Nations, an international celebration of diversity on Minnesota State University Moorhead's campus. We had a great time and it was fun to see so many people. Carson liked watching the flag procession from the various countries.

On Saturday we cleaned and cleaned. Soon guests were arriving! We were preparing for a fun and busy day on Sunday...

Our church, Bethlehem Lutheran, had a pancake benefit for Carson on Sunday morning. It was so much fun to show the miracle of Carson to so many people that have been praying for all of us through these past months. There were also three local news channels there, so Carson was quite the celebrity!

The day also kicked off National Organ and Tissue Donation Awareness Week (NOTDAW), April 21-27. We had wonderful information from LifeSource available at the benefit, along with "before" and "after" translant pictures of Carson. We encouraged others to consider organ donation and to discuss their wishes with their family!

After the benefit, it was back to the house! Unfortunately, the snow flakes were falling! (Isn't this supposed to be spring?) Soon we had the house filled with family and friends from near and far to celebrate Carson's birthday. We all watched as Carson enjoyed his Pooh birthday cake. It was so fun to see all of you (and since we don't want to miss anyone, we won't list you all!!!). We also had a special project: to create a time capsule for Carson. We asked our guests to bring something (in lieu of a gift) to put in a time capsule for Carson to open on his 18th birthday. We got this idea from another family with a Carson that turns one today! They live in Des Moines. It will certainly be a special day when both Carsons open their capsules. All in all, the party was lots of fun and we had a great time.

By late afternoon, we were all very tired. We had a relaxing evening and geared up for the week ahead. Next Sunday, April 28th, is Carson's first birthday. We can't help but ask , "Where has this year gone?" We are thrilled to celebrate his first birthday, as there were many days that looked so grim that we never thought we would get to this point. We're also a little sad, because our baby is becoming more and more of a toddler. In ways we feel we've missed out of some precious "baby time" this past year. We're amazed at how much Carson has changed in one year and how much we've grown as well. We take each day one day at a time and have reprioritized what is important in life. Carson has taught us so much this year! Now we hope that the next year of his life is a little quieter than the first!

That's all for today! Love, hugs and God Bless!

Carson, Mommy and Daddy

Monday, April 15, 2002 at 01:53 PM (CDT)

We had a fun weekend!

When Mommy got home Friday we went on a LONG wagon ride. Add to that a wagon ride with Daddy on Friday morning and two more family wagon rides on Saturday. On Sunday we had a stroller ride too! We all loved the beautiful weather.

On Sunday morning Carson had a bath! This might not seem like a big deal, but it was his first "in the tub" bath since October 22. He had lots of fun. We got lots of pictures and videos of this monumental event.

We also had Carson's one year pictures taken yesterday at Sears. We're thrilled with how cute they are. We've added them to the webshots link. He's getting so grown up!

We're looking forward to more wagon rides this week...hopefully the weather cooperates!

Hugs to all!

Love, Carson, Mommy and Daddy

Friday, April 12, 2002 at 07:28 AM (CDT)

Carson has had a GREAT week. It started off with a new tooth on Monday. He yawned and we saw a new tooth budding through! That makes tooth #7! We're glad that teething seems to be getting easier with time!

He's also been very happy and full of squeals this week. A lot of times he's just being silly! He is pretty much over his cold, so he is feeling much better.

On a very exciting note, he is 17 pounds, 1 ounce. He is really gaining well. He has really ditched baby foods. He wants table food! (Especially when he sees Daddy and Mommy eating food from a plate--he wants the same!) Last night he gobbled up french toast like a champ. We're trying new things every day and he is responding well. He makes his "new taste face", but quickly starts chowing.

We've had a visitor the last few days: Grandma Brager. She got a new pacemaker yesterday...she wore the batteries out of the old one! Now she's an Energizer bunny again!

It looks to be a beautiful weekend. Hopefully we can get the wagon out. We're all itching to get outside and play!

Hope you all have a great weekend! Hugs and God Bless!

Love, Carson, Mommy and Daddy

Saturday, April 06, 2002 at 06:37 PM (CST)

We've had an exciting and busy few days! We departed on Thursday evening for Minneapolis. We got to Ronald McDonald pretty late. We were amazed to see that the beautiful renovations are almost done. There was major construction going on during the time we spent there. There is a huge serving and kitchen area, new fireplace/living room area, 13 additional guest rooms, a gym and much more. It's incredible. We wish we could be there for their grand opening on April 13th! (No funny ideas about emergeny trips down, Carson!)

Soon, Marisa came a-calling! It was so fun to see you, Marisa. We hope we didn't keep you up too late! Carson opened a birthday present from "Auntie" Marisa. Thank you!!!

Then it was bedtime! (It was almost midnight and we were all tired!) We were up at 4 am and we checked into the hospital by 6 am. :-( Too short of a night!

Carson went into the OR at 7:30 am and was back to the recovery room by 8:30 am. They did a cholangiogram and removed his t-tube! He is now down to 1 tube: the Hickman!!!

The docs were a little nervous about sending us home, so they discharged us to 5D: the transplant floor. For a while we thought we were going to be spending the night in the hospital. By early afternoon, Dr. Humar was by and said that we could leave. Yah! Both Dr. Sharp and Dr. Humar were very happy with Carson's progress and we don't have to come back for a check-up until the end of June (Carson's 6 month transplant anniversary!). At that time we will see both doctors and Carson will have the Hickman removed as well. Dr. Humar also discontinued 2 medications and moved asprin to 3 days a week instead of every day. WOW! Big progress! Now Carson (only) has 7 meds, two of which are vitamin supplements.

We were also thrilled to see many familiar faces while we were at the hospital. They are almost too many to name, and we don't want to leave anyone out. We were very proud to show off Carson and the doctors and nurses were amazed that this was the same little boy that we brought to them in mid-November. We had the fortune of meeting two other newly transplanted pediatric liver families too! We will be keeping you in our prayers and hope to hear of news from you about everyone's progress. We hope to see you at the transplant picnic this summer!!!

We also got to see Fuzz. You look great, Fuzz. He described Carson as "white and chunky" to his mom! Fuzz is out of the hospital and going to school again. He is still waiting for his heart and we are hoping and praying it comes soon! We also had the honor of being taped for a video the Minnesota Medical Foundation is doing. They are telling Fuzz' story and they wanted something from a family he has touched. Of course, we gushed about our buddy!

Soon we were discharged. Back to Ronald McDonald to pack things up! We didn't get on the road until 5 pm, so we had a late night again. Carson required several stops on the way home. It was good to be back in our bed again.

We've had a good day today. Mommy's graduate school buddy, Patti, stopped by. It was fun to catch up! We also took a nap this afternoon.

We're excited for this next week: temps could get into the 60's. Maybe it's time for the wagon!!! That would be fun for all of us!

Thanks for all your loving thoughts and prayers. God Bless!

Love, Carson, Mommy and Daddy

Monday, April 01, 2002 at 04:44 PM (CST)

We had a wonderful weekend...snuggle-time was abundant!

We colored Easter eggs. Carson liked holding them when they were dry! We didn't expect him to get too excited about the process...maybe next year.

We went to church as a family, which was WONDERFUL! It was fun to watch Carson as he watched the people, lights and fans. Just like old times he even fell asleep half way through the sermon!!! What a special day to have Carson begin going to church again.

We had a huge Easter dinner. It was great to celebrate a holiday at home!

Mommy's cousins, Nancy, Gayle and Renae came over along with kids: JaCee, Drew, George, Alexander and Andrew. It was great to see all of you and celebrate the miracle of Carson!

There are some new pictures of Carson in his Easter outfit on the webshots link. It's handy having Grammy Ruthie's digital camera around!

Have a great week!

Love, Carson, Mommy and Daddy

Friday, March 29, 2002 at 11:25 PM (CST)

What a wild day! Carson had a BIG outing today. First to Dr. Haugen for a physical and his 12 month check-up. Everything looks great! Carson has grown 2 1/2 inches in the past two months! No wonder we're buying new clothes!!! :-)

Next, we got to see Mommy's cousin Renae and Auntie JoAnn! What a fun surprise!

Then, Carson got pictures with the Easter bunny. He didn't seem to mind the big fuzzy critter.

We ran some more errands as well. Carson loved watching people at the mall. He was taking it all in with very wide eyes, as he's been pretty sheltered the past 5 or so months.

We also discovered that he loves watching fish. There was a HUGE tank at the mall and one at the bank. Anytime Mommy would turn from it, he would fuss! Guess he wanted to go fishing!

Tomorrow we will dye eggs and take some pictures with Carson's bunny ears. Then naps for all of us!

Thankfully, Carson is almost over his cold. Just some sniffles left to contend with, but nothing too terrible.

We are really excited for Sunday! We will attend church together for the first time since October 21! This will be Carson's first social outing since that time as well. All others have had at least one medically related stop! We felt it was appropriate for Carson to come out on Easter Sunday.

That's all from the Kitch household. Have a very blessed and Happy Easter! Jesus is Risen!

Love, Carson, Mommy and Daddy

Monday, March 25, 2002 at 07:19 PM (CST)

After sleeping most of the day away Carson is doing much better. He can breathe a lot easier and is his smiley, playful self again. Maybe this means Mommy and Daddy can get some sleep tonight?

Carson, Mommy, & Daddy

Monday, March 25, 2002 at 08:39 AM (CST)

What a weekend! Carson's cold has really gotten worse. He has a tough time drinking, since he can't breathe through his nose. So, since we were worried about dehydration, we had our first trip to the ER last night! We were pretty nervous, and thankfully Carson's first primary doctor, Dr. Burns, was working at the ER. It was wonderful not having to tell Carson's whole story--he knows him so well! :-)

Carson's lungs were a little coarse, so Dr. Burns ordered a chest x-ray. Thankfully it looks viral, and not like pnuemonia. He did prescribe some albuterol to hopefully help Carson breathe a little easier. All in all, we were glad that we went in. We felt a little crazy taking him to the ER for a cold, but we also want to be safe!

Carson's biggest need right now is rest, which he's having a hard time doing with this cold. Last night he finally had a few 2 hour stretches of sleep though, which is a good sign. (Much to our delight as well...it's been a long week for ALL of us!)

We're anxiously awaiting labs today to see how everything looks and if he needs any IV fluids. We will keep you posted.

God Bless!
Love, Carson, Mommy and Daddy

Thursday, March 21, 2002 at 07:50 AM (CST)

We have winter again in Fargo. Yuk! It's windy today. Sounds like the temps should rise this weekend. We can't wait for spring to arrive!

Carson has a little cold. So far it's just some nasal conjestion. It's exactly what Mommy just got over. (Mommy feels really badly that Carson got it!) Hopefully this won't set him back too much. He's had some pretty tough nights the last two nights, so we're all sleepy. Hopefully some cuddles on the couch will help.

That's all for now!

Love, Carson, Mommy and Daddy

Tuesday, March 19, 2002 at 07:45 AM (CST)

Carson continues to do very well. He is so happy that his feeding tube is out. We see smiles almost all of the time from him.

Daddy can't wait for spring: wagon and stroller rides with Carson. Hopefully the weather warms up soon.

There are some new pictures under the "webshots" link. Check out our baby without a tube down his nose! Enjoy and God Bless!

Love, Carson, Mommy and Daddy

Friday, March 15, 2002 at 11:57 AM (CST)

Oh what a happy day!!! Carson's NJ (feeding) tube is officially OUT! We were going to wait until this evening, but since it wasn't going to be used all day, we figured we'd do it this morning before Mommy went to work. Carson was NOT happy as Mommy pulled out, but he WAS happy when it was all over. (Daddy videotaped the great event!) Carson looks so different without the tube down his nose and tape all over his face. He looks super! We will post pictures as soon as we get them back.

Only two more tubes to go (t-tube and Hickman)!!!

We're looking forward to a quiet weekend at home. Carson's labs look super...as always!

Have a great weekend!

Love, Carson, Mommy and Daddy

P.S. Congratulations go out to our little friend Dawson who is celebrating his one year anniversary of his kidney transplant. He received his kidney from his mother Tesa.

Monday, March 11, 2002 at 10:44 AM (CST)

We had a weekend full of naps. It was wonderful, considering the weather outside was pretty yucky. More snow and lots of wind. Hopefully spring will be on its way soon.

Mommy went to our Godchild's Affirmation of Baptism yesterday. Emily was beautiful, as was sister Kari. It was fun to see the our friends again!

If all goes well, the NJ (feeding) tube will be coming out Friday night. That is provided that there are no more flu bug vomits between now and then! (Haven't had any since we saw Marisa on Friday...hmmmm...just kidding, Marisa!) It will be so great to kiss Carson's cheeks and nose without any tape on them! We've counted up and since October 23rd he's only had 9 days without a tube down his nose, so this is monumental!!!

Well, that's all for now! Carson had labs today and we're waiting to see how they look. They've been wonderful lately.

Love, The Kitch 3

Friday, March 08, 2002 at 08:08 PM (CST)

Well, we are back home safe and sound after our shortest trip to Mpls ever. We met with Drs. Humar and Sharpe this morning and you can almost describe them as being giddy. They are both amazed with the progress that Carson is making. More good news...we can pull the feeding tube in a week or two and the T-tube will be pulled in about a month (actually, if we let him Carson will pull the tubes out himself) . By the beginning of April Carson will be down to one tube.

We got to see alot of old friends while at Fairview, including Marisa (Carson's liver buddy), Fuzz (who is STILL waiting for a new heart) and Amber (who got a new heart but is back in because of shingles...something many heart tx's get). Marisa, Fuzz and Amber are absolutely amazing. If you ever begin to feel sorry for yourself because you hate your job or have a hangnail give yourself a good swift kick because chances are your problems would not compare to what they are and have been going through.

Anyhow, we are absolutely exhausted and will be in bed soon.

The Kitch 3

Thursday, March 07, 2002 at 07:50 AM (CST)

Carson is still hanging on to this bug, or whatever it is. He threw up several times last night. :-( He had a pretty rough night as well...up a lot and really fussy. No temp though!

We leave tonight for the Cities. We're supposed to get some snow and wind so we'll see how things look. Our appointment is at 9 am tomorrow morning.

Carson is making great progress with his physical and occupational therapists. They're working him hard, but he loves it most of the time because he's "playing". We're seeing changes in him all the time.

Will update hopefully sometime tomorrow after the appointment.

Love, Carson, Mommy and Daddy

Tuesday, March 05, 2002 at 11:21 AM (CST)

Carson has another little bug (or maybe he never got completely over the one he had a week ago). He's been throwing up this morning and can't seem to keep anything down.

Guess he just wants to keep things interesting around the Kitch house! More Pedialyte is on the way!!!

Love, The Kitch 3

Friday, March 01, 2002 at 07:50 AM (CST)

Good morning! We will be back in the Cities next Thursday for an appointment with Dr. Humar (and hopefully Dr. Sharp) on Friday morning. Our transplant coordinator said that Carson's labs look "remarkable"! We like to hear that. His bili is staying at 0.3, which is great.

Carson started rolling over again last night...from his tummy to his back. He could do this pre-heart surgery. We're working on the strengthening and conditioning part now. He's almost rolling from back to tummy again too, although he doesn't like being on his tummy a whole lot. He's not in pain, it just seems to be something that he doesn't enjoy. He also celebrated his 10 month birthday yesterday!

Uncle Chris is stopping by today. He hasn't seen Carson since December 31st (one day post-transplant). He'll notice a SMALL difference!!! :-)

That's all from the Kitch household. Have a great weekend!

Love, Carson, Mommy and Daddy

Wednesday, February 27, 2002 at 07:45 AM (CST)

It's been an interesting couple of days...Carson had the flu on Monday! Thankfully he was only vomiting and it lasted about 12 hours. We were so worried he would get dehydrated. Of course, he's lost a few ounces, but hopefully he will bounce back quickly. He was smiling already yesterday. It was weird for us to be working with "normal baby" stuff! Pedialyte seemed to do the trick. We highly give thumbs up to the bubble gum flavor, as that was all that Carson would drink.

We find out today when Carson goes back to the Cities for a checkup. Will post when we know.

That's all for now. All is going really well now that the flu is over! Take care and God Bless!

Love, Carson, Mommy and Daddy

Saturday February 23, 2002 6:13 PM CST

Sorry we haven't given un update for a week! It's been a great week at the Kitch house though.

Our exciting news is that Carson is really gaining weight! He is 15 pounds 4 ounces. Yippee! Just 4 weeks ago today (our first coming home) he was 13 pounds 9 ounces. We are so happy to see him add some "chunk" to his body. This is in part attributed to the major feeding frenzy he has been on. He will polish of 4-6 ounces of solid foods in a single sitting. Plus he is breastfeeding all the time. Looks like it's growth spurt time! We love it. Still can't believe that he will be 8 weeks post-transplant tomorrow.

Carson's labs continue to look good. His hemoglobin is climbing and his bili is staying low (currently 0.4). We like that.

Papa Chip is here for a visit for a few days. He's been busy admiring Carson's new weight as well!

We take naps a lot around here, especially in the evening after Mommy gets home from work. Daddy and Carson are having wonderful days together and have been very busy eating, playing and sleeping.

That's about all from here. We love being home. It is so fun just to snuggle on the couch.

Love, Carson, Daddy and Mommy

Saturday February 16, 2002 2:32 PM CST

We are all happily at home again. Who knows for how long?!?! So far so good though. With three tubes still in him, his infection risk is still high, so the next few months could be challenging, but nothing we can't deal with. :-)

Our recent trip revealed several things: ONE, it was likely that Carson had a line infection in his Hickman, since he hasn't had a fever since the old one was taken out. TWO, Carson's vascular system is compensating very well for a sluggish vein from the liver to the heart. One vein is quite slow, but another is making up for it. Will likely be just fine and not require further surgical intervention. THREE, Carson is allergic to a certain antibiotic. FOUR, Carson very likely has a milk intolerance and will need to be on breast milk for a while and then probably go to soy. Eventually we could gradually start some milk to see how his system takes it, but it willl be a while. We're pleased that we had the vasular system checked out while we were down there, as that could have been quite dangerous.

So, we're back home and loving every minute of it. A special "hello" to our friends Jamin, Tanya and Megan Tauer. They are on their Make-a-Wish trip to Walt Disney World and having a great time. Megan also has biliary atresia. Here is Megan's page: http://www.caringbridge.com/nd/megantauer.

Love, Carson, Mommy and Daddy

Wednesday February 13, 2002 4:46 PM CST

Yippee. In an hour or two we should be discharged from the hospital. We will stay another night at the Ronald McDonald House and leave for home tomorrow morning after some lab work and we pick up some meds. Once again, it will be nice to get home.

Carson's MRI went well today. He had yet another NPO (nothing by mouth) day (6 out of the last 9 days) and yet another medication induced nap.

Watch out Fargo...here we come.

Carson, Rhonda, and Travis

Tuesday February 12, 2002 6:50 PM CST

We had a very restful day and a half at the Ronald McDonald House. Then a busy day today. Carson's procedure of the Hickman placement went very well. We are back up on 5D and getting settled in (hopefully not for too long).

The ultrasound on Sunday revealed that there is a very small opening at one of Carson's connection points for the liver from the transplant. It's been narrow since transplant, so this isn't a big surprise. However, just to be safe they are going to run a contrast study tomorrow to look at the size of the opening and get a better idea on flow. If needed, there is a dialation procedure that can be done (in the OR) to make it bigger. We'll have to wait and see. We're in a "reality" mode now and realize that there could potentially be so many emergency trips down here like this one. Hopefully not, but we want to be prepared. We've vowed to pack a bag and always have it ready to go.

That's all for now. God Blessings to all!

Love, Carson, Mommy and Daddy

Sunday February 10, 2002 10:52 AM CST

Great news! After an ultrasound today (not sure when it will be yet) we will be discharged. We need to watch Carson for temps (just like we do anyway!). We'll be at RMH until Tuesday when he gets his new Hickman. If all goes well we will be here for a few days after that then home again!

His peripheral IV in his foot blew last night and they didn't bother with trying to start a new one. (Much to all of our relief and delight). He will be on oral antibiotics for a bit, instead of IV.

Just in case anyone needs to get in touch with us our number at RMH is 612-379-9502.

Love, Carson, Mommy and Daddy

Saturday February 9, 2002 7:35 PM CST

Carson had a super day. Not a fever in sight all day! If he doesn't run one through the night it's POSSIBLE we could be discharged tomorrow. We would stay at Ronald McDonald until Tuesday, when he would be readmitted to get a new Hickman. Not sure how long we will be in after that. If he behaves, I'm sure not too long!

His tummy girth was bigger yesterday so we are going to check it out with an ultrasound today or tomorrow. Probably nothing, but want to be safe.

He is gaining weight as well. That makes EVERYONE happy! :-)

We had a good time watching opening ceremonies of the Olympics last night. We are excited to cheer on U.S. Olympic snowboarder Chris Klug. He had a liver transplant 18 months ago. He is an outstanding promoter of organ donation. He had a great spot on CNN Thursday promoting National Donor Day on February 14th. You can visit Saturn dealerships to find out more. Here is a web link http://www.saturnuaw.com/filecabinet/Satfile/national.htm

Anyway, GO, CHRIS, GO! We will be cheering you on as you go for the gold! We even got a letter from Chris' father with well-wishes for Carson. (Mommy's boss knows Chris' father!) Very special keepsake.

Gotta run. Thanks for all of the love and prayers! Love, Carson, Mommy and Daddy

Friday February 8, 2002 8:51 PM CST

Carson's Hickman is successfully out and his NJ tube is in place. He has had a pretty groggy day though and lots of rest is in order!

"Auntie" Marisa is on a date with Carson right now. She is rubbing his back, which he loves. We're not really pleased about him dating at 9 1/2 months, but we figure he's pretty safe with Marisa. Hopefully he won't be showing up at her door with roses and chocolate anytime soon the way he flirts!!!

He had a touch of a fever again today, but it's down tonight. Hopefully with the Hickman out it will stay down. So far the Hickman will get replaced on Tuesday afternoon, if all goes as planned.

It was fun to see so many folks today: Steve, Ryan, Dolly, Marisa, Amy and Carly! Thanks for brightening our day!

That's all for today. The excitement of Mommy's day was that the surgeon saved Carson's Hickman for us. (special request for the baby book!) Ever since it exploded in late November/early December it has had quite the story, so thought it would be a good addition to Carson's scrapbook. Show and tell for him someday!

That's all for now. We're looking forward to a quiet weekend. Going to watch the Olympics and see the snow fall here tomorrow!

Love, Carson, Mommy and Daddy

Thursday February 7, 2002 9:14 PM CST

Well, Carson's Hickman is still in. It comes out bright and early tomorrow morning. Then he will get a new one, probably on Tuesday.

We discovered today that his NJ tube is actually an NG (this means his feeding tube is in the stomach rather than intestine). This is VERY likely the reason Carson was throwing up. We had our suspicions yesterday and reduced the amount of his tube feeds and he was fine. So, the tube will also be advanced tomorrow while he is under general anesthesia. His fever has been down all day today. YAH! No sign of it!

We had some possible exciting news yesterday. The magazine "Woman's World" might do an article on Carson. We will call them when we return to Fargo. What an amazing kid. Not that he cares about media right now...just wants to eat, sleep and poop!

His liver is in beautiful shape. Certainly no sign of rejection. Big relief.

We think that all of this fever and trip down stems from two things: 1) Carson missed all of the wonderful staff, nurses and doctors here (plus some of his buddies) and 2) Carson was mad that Mommy started work again. Mommy was at work for 7 minutes on Tuesday morning when Daddy called to say that we were making a trip back to Minneapolis. Going back to work was a big milestone for our lives to be "back to normal". At least we were there for a day!

Well, that's all for now. Goodnight!!!

P.S. There are lots of new pictures on the "Webshots" link below! Enjoy!!!

Love, Carson, Mommy and Daddy

Wednesday February 6, 2002 7:02 PM CST

Carson has had another rough day...some throwing up and a fever here and there too. Could be viral now too!?!?!

They are taking his Hickman IV out tomorrow. He's had it since November 20 and it could be infected. He'll spend a few days on antibiotics and then probably put a new one in. That puts us here a few more days for sure.

On a very positive note, his cholangiogram looks great, labs are good, and abdomen feels soft. So, not likely that he is rejecting. :-)

Overall we're pretty bummed. We were told to expect this, in fact this could be par for the course for the next few months or longer. It was just so hard to get in that car and head back down here yesterday. It's for the best though and we'd all rather be safe than sorry! At least this bump in the road looks good in the overall picture though.

God is certainly giving us patience right now!

Love, Carson, Mommy and Daddy

Wednesday February 6, 2002 9:37 AM CST

Carson did not have a good evening and night. His temp is back--BIG TIME. It was up and down all night, but was up to 101.7 ax. this morning. YIKES! He was also throwing up last night quite a bit. More tests. Bili is down to 0.4, so that is very positive.

Cholangiogram is scheduled for 10 am. He is pretty unhappy because he feels like eating now but is NPO and has been since 4 am. Poor guy. He does have an IV running just so he won't get dehyrated.

We've seen a lot of familiar doctors and nurses and thanks for stopping by last night Auntie Marisa! It was so good to see you lurking around! :-)

That's all for now. Love, Us 3

Tuesday February 5, 2002 5:32 PM CST

We made it to Minneapolis in record time. Only one stop and it was very quick. We were admitted by 2 pm. Carson's fever was still high when we left home but he started to cool off as the trip progressed (naturally!). However, we still would rather be safe than sorry. The usual round of lab work, blood cultures, urine specimen, etc. have been ordered. Tomorrow Carson will have a cholangiogram. We'll have to wait to see what it shows. No talk of a liver biopsy yet, so we'll have to wait and see. At this point it probably isn't rejection, but we will know more as the labs and results return.

So, we are back to shift work again! This time there is a real bed along with a crib in Carson's room, so Mommy is going to spend the night. Daddy will sleep the night and take most of the day tomorrow. Fun, fun, fun!

Will update when we know more! Love, Carson, Mommy and Daddy

Tuesday February 5, 2002 8:16 AM CST

Quick update. Carson spiked a big temp last night--101.5 under the arm. We called our surgeon and he directed us to uncap the t-tube and add the bag, which we did. Then we did Tylenol every 4 hours. Sometime it brought his temp down, sometimes not. So, long story short we are packing up today and heading to Minneapolis in a few hours. Could be a bit of rejection. Will update when we can.

Love, Carson, Travis and Rhonda

Saturday February 2, 2002 2:25 PM CST

We've had a great couple of days. A certain BIG boy decided that it's not enough that he started sitting in a high chair to eat this week. It would also be fun to start drinking from a sippy cup! He drank about an ounce of breastmilk from a cup last night. We dipped the tip in applesauce to get him to suck it off and it worked! He drank really well. (Thanks for the tip, Beth, Carson's OT!) He hasn't been really crazy about bottles since transplant. Since Mommy is starting back to work part-time on Monday Daddy was getting a little nervous about the bottle issue. But it looks like Carson decided he was ready for something new. It's so fun to see and do "normal baby" stuff with him!

Carson has been busy playing with his toys and watching Sylvester and Tigger on the prowl. He gets so excited whenever one of us returns from errands. He grins and flaps his arms and legs. It's so cute.

Will close for now! Love, Carson, Mommy and Daddy

P.S. Carson has yet to make an entry, so here goes: mpm v dvvucu9c9, 9xck9 m9m mm ccjmzedp;l

Monday January 28, 2002 3:20 PM CST

We have quite the media darling on our hands! We had an interview yesterday with Channel 4 (it aired last night), today one with Channel 6 (which will air tonight) and an interview with the Fargo Forum, which will be in tomorrow's newspaper. WHEW! We are grateful for the coverage. It allows us to tell Carson's precious story and spread the news about organ donation!

More labs today. They look great. :-)

We visited Dakota Clinic West Acres today as well and bid farewell to Dr. Burns. He has been Carson's doctor since birth and is now entering Emergency medicine. If we ever make a trip to the ER at Innovis, we will request him (hopefully there aren't too many of those trips, but we feel fortunate that he will still be in medicine). He is such an outstanding doctor and we will miss him dearly! We were greeted with lots of hugs and smiles and Carson continued to ooze his charm. He flirted with everyone as he was weighed. What a ham! We will continue to be at Dakota Clinic West Acres, but now we will see Dr. Haugen. Yep, one more doc! Thankfully we already know his phone number! :-)

We are slowly getting all of our stuff put away. We may have to build on to the house to accomodate all of Carson's toys and stuffed animals. We'll take a picture with all of his stuffed animals. You won't believe it. Will post as soon as we have it.

It was so fun to go to the benefit on Saturday night. We enjoyed seeing so many friends! Thanks for your love and hugs!

It feels terrific to be home. Carson grinned and grinned when we stepped through the door. He is getting getting to know Sylvester and Tigger again too. The cats are pretty happy to see us; they have been very well taken care of by our friends and neighbors, The Gillettes and Winters. Thanks guys!

Well, more to do! Just wanted to get in a quick update. We love sleeping in our own bed again!!!

Love, Carson, Mommy and Daddy

Saturday January 26, 2002 9:41 PM CST

WE'RE HOME!

Friday January 25, 2002 1:00 PM CST

We have waited for so long to say this: WE ARE GOING HOME! After almost 14 weeks (this Sunday would have been the start of #14) we are going to be able to pack it up and head home. We will be leaving tomorrow, as soon as the car is packed and Carson is fed. For anyone within a 100 mile radius, a word of caution: you may hear the tires squealing as we leave the parking lot. However, Daddy will be driving as carefully as he always does, as there is precious cargo on board!

Our clinic appointment this morning went wonderfully. Carson looks great, according to the transplant surgeon, Dr. Humar. Words we love to hear. Dr. Humar commented that Carson's recovery is amazing and he was pretty much hanging on by his fingernails before transplant. We have another clinic appointment with Dr. Humar two weeks from today. :-)

We got to see Dr. Baker yesterday and Carson looks good from a heart standpoint. A couple things to watch, but nothing to get worried over. We have a check up again in 2-3 months. While we were at the heart clinic, Dr. Ferenci (Carson's original GI doc) popped in. What a fun surprise! We loved seeing both of you yesterday! You are both very special to us.

We've had a fun couple of days. We had a liver party on Wednesday night with Steve, Dolly, & Ryan Bollig and Marisa McFate. How many places to you hear "What do your lft's look like" "How much Prograf are you on?" "What's your bili?" What a hoot!

Then we had a visit from Doug, Parker and Grace Milbrath this morning. Parker and Carson are also liver buddies. Parker has been an inspiration and lots of hope for us. He is 2 1/2 and full of ENERGY! It's been so great to meet you all as well. We are so fortunate to have met such incredible people along this journey that will be life-long friends.

We have lots to do this afternoon...cleaning, packing, laundry and meds. Carson's not too sure about all of the hustle and bustle. We can't wait to see his face tomorrow when we walk through the front door.

Our plan for next week is simple. In the words of A.A. Milne from "The House at Pooh Corner":
What I like best about nothing
"How do you do nothing?" asked Pooh, after he had wondered for a long time. "Well, it's when people call out at you just as you're going off to do it. 'What are you going to do Christopher Robin' and you say 'Oh nothing', and then go and do it".

We are going to do a whole lot of "nothing". "Nothing" naps and "nothing" snuggles are planned. Tomorrow we will have home health in, visit with one of the TV stations, got to Carson's benefit and then go to bed! Planned for next week, we have a visit to Dr. Burns on Monday (routine!) and will get into a schedule of home health, PT and OT. Of course, Carson's 24 doses of meds a day will be in there as well. BUT, most of all we are just going to appreciate our precious little boy as he settles back into life at home.

As we made our rounds through the floors today, it is quite bittersweet leaving. We have made so many friends at the hospital these past months. We appreciate the support that we have had though this journey. We know that we will be back many, many times and so this is a "see you later". It's still hard to know we won't see everyone on a daily basis.

And to all of our family, friends and web friends. Will you ever realize just how much we have felt your love and warmth these past months? You've laughed with us, cried with us and been with us every step of the way. We won't ever be able to successfully put into words how much that has meant to us. We've known all along that Carson was special. We feel blessed by God that he has touched so many lives. He is truly a miracle baby and the product of many, many prayers.

With that I will go for today. We will certainly continue to keep Carson's website updated. Not daily, but we will post pictures and his progress. Thank again for everything. God is great. God Bless!

Love, Carson, Mommy and Daddy

Wednesday January 23, 2002 3:36 PM CST

Another productive day. Carson had labs, PT and of course, naps today. His labs look super. They continue to improve each lab draw.

We are cleaning and doing some preliminary packing. We don't want to pack everything up quite yet, as we'll wait for the final word on Friday.

Carson's big news of the day is that one of his top teeth is finally breaking through!!! We had a visual on it this afternoon and we can feel it. Hopefully the next one isn't far behind. He has been working on these two middle teeth since October. But, with all of the stress his little body has gone through they just wouldn't break through. We've lost count of how many times his gums have gotten swollen, just to shrink again. So, looks like we are experiencing some "normal baby" stuff (as Dr. Meg would say!). Feels good. :-)

We have a fun evening planned with Steve, Dolly, & Ryan Bollig and Marisa McFate. Ryan and Marisa are two of Carson's liver buds. We're going to hang out at Ronald McDonald, eat and visit. We will miss seeing each of you so often!

So far we plan to leave Saturday morning for Fargo. We need to finish cleaning our room, wash linens and pack up the car that morning. Then we're on our way. There is a benefit supper and dance for Carson in Fargo on Saturday night and one of us would like to get to it. It'll be fun to see some familiar faces!

Well, I should run. Will update again on Friday. We have a check up with Dr. Baker, Carson's cardiologist tomorrow. Carson is a different color than the last time he saw him (mid-November). Can't wait to show him off!

Love, Carson, Mommy and Daddy

Sunday January 20, 2002 9:19 PM CST

It's been a great weekend. We've all had quite a bit of rest and had some fun play time with Carson as well. He is starting to enjoy some of his Christmas presents!

So far our only "after discharge" crisis was not being able to flush one port on his Hickman IV catheter. We tried positioning him different ways and no-go. So, we waited for home health, since Mommy was a bit chicken on how much pressure to use (and especially after the other port exploded on us when a radiologist was trying to flush it in late November!). Fortunately, the home health nurse got it and it's been fine since. A bit sluggish, but it works. (And no trip back to the hospital).

On a very sad note, another one of Carson's old roommates passed away last night. We had gotten quite close to the mother of the baby. He was almost 2 months old. We just know that he is sitting on Jesus' lap right now and not hurting at all! Their family is in our constant thoughts and prayers.

More labs tomorrow. We are preparing for another week of rest and hopefully home on Saturday!

Love, Carson, Mommy and Daddy

Friday January 18, 2002 4:22 PM CST

Sorry there hasn't been an update since discharge. We have been busy enjoying Carson!

The last few days have been busy ones. We have a home health visit daily and have had visits from PT and OT as well. We are also trying to squeeze lots of naps in (for Carson and us)! We've been playing lots with Carson as well and he is enjoying life on the outside!

We had a check-up with our surgeon today. Everything looks great! Bili is down to 0.8. We have another check up a week from today. If all looks good, we can likely go home after that! We are targeting next Saturday as a possibility to head back home.

Carson is adjusting to life outside a hospital. He has been pretty happy overall, but cries when he wakes up from a nap. We think he's scared because he doesn't know where he is. Hopefully that will change when we get home!

We are celebrating the miracle of Baptism tomorrow for our Godchild. Emily Gillette will be baptized tomorrow here in the Cities. Travis will go to the baptism, and I will stay with Carson. Wish we could all be there, but Carson needs to stay away from other people for awhile! God's special blessings to you on this joyous day, Emily!

I'm going to get back to Carson and Daddy now. Thanks for all of your wishes. We can't even describe how wonderful it feels to be out of the hospital. It was fun to bundle Carson up for the first time in winter duds and take pictures of him with snow. We'll have lots of fun and exciting "firsts" coming soon as well.

Have a great weekend. God's Blessings to each of you!

Love, Carson, Mommy and Daddy

Wednesday January 16, 2002 11:17 AM CST

We will be discharged within the hour! Carson has a special outfit on for the occasion. He has no idea what a big day this is for him--in the hospital since October 23, 2001!

Gotta run and go through the discharge orders! We are on cloud nine!!! Thanks to God for all He has given us! We are so fortunate!

Love, Carson, Mommy and Daddy

Tuesday, January 15, 2002 at 10:11 am(CST)

We're on a roll...if all goes well, Carson should be discharged by noon tomorrow!!!

He had a great night of rest and is smiling almost all of the time. Our Carson is back to being himself.

We will be at the Ronald McDonald House (RMH) for a week or two, then we can go HOME!

We will have access to a computer at RMH so we will continue to do updates.

We're working on getting all of the arrangements made for PT, OT, home health, etc. Actually many other people are working on the arrangements and we really appreciate it. We're just working on when we will have everyone come in.

Gotta run. I don't want to miss any docs!

Love, Carson, Daddy and Mommy

Monday, January 14, 2002 10:54 am

Another great day. The cholangiogram was bright and early this morning and everything looks great. The biliary tree looks good. So, Carson's t-tube will likely be capped off today.

Total bili is 1.1. :-)

Special thanks to our friends Michele and Pam Hussey. They stopped by yesterday for a fun visit. Pam and Carson were in the PICU at Children's in October. You look great, Pam! They brought their digital camera and took lots of pics of Carson and left us a disk full. So, check them out on the Caring Bridge photo album as well as the webshots link: http://community.webshots.com/user/rkkitch There are lots of smiles!

Carson had his best day yesterday since before heart surgery on October 23rd. We had a fun day. Daddy made it back safely and reports that Carson slept some last night. Hopefully the trend will continue!

Love, Carson, Daddy and Mommy

Sunday, January 13, 2002 at 11:06 AM (CST)

Carson lost another tube yesterday--his JP drainage tube. He is also done with IV nutrition (TPN and lipids). He is much more mobile and easier to pick up! We have the hickman, which he will have for months, a feeding tube, and a t-tube, which collects bile.

Today's labs look great--total bili is 1.2! It continues to drop, much to our delight.

He has been smiling, cooing, squealing and kicking up a storm. He is so happy. He flirts with all of his nurses, physical therapist and occupational therapist. He cries when he sees doctors (white coat!) but who can blame him. He spent some time on his tummy with the physical therapist today and he almost fell asleep. He has always hated being on his tummy, since it was so big. I'm sure it was very uncomfortable. Hard to believe that he feels well enough to lay on it 2 weeks after transplant. :-) Just shows how quickly kids bounce back (and what wusses adults can be!).

Daddy went to Fargo yesterday to get the house in some sense of order. With any luck we will be HOME in two weeks! Daddy hopes to get on the road soon and be back within a few hours. We sure miss him!

Special thanks to our visitors the past few days: Pastor Tim Stoa, Steve, Dolly and Ryan Bollig, Marisa McFate, & Fuzz and his mom, Jill. Good to see all of you!

There seems to be some confusion regarding the pictures that are posted on Carson's website. We want to be sure that everyone is finding them. There are three pictures on the "photo album" link. There is a limit of three pictures, so we've added another web page. The link for it is under the "Links" section at the bottom of Carson's web page. It's address is http://community.webshots.com/user/rkkitch
Currently there are almost 250 pictures on the page. You can click on an "album" to see all of the pictures in the album. Right now there are 15 albums. We will continue to add to the photo gallery. Can you tell this is a very loved little boy? :-)

Gotta get back to Mr. Carson. It's snuggle time!

Love, Carson, Daddy and Mommy

Friday, January 11, 2002 at 04:18 PM (CST)

Carson is having a better day, thanks to methadone. He really had a rough night so early this morning they gave him methadone to counter some of the narcotic withdrawl symptoms. Since then he has slept some and been more content. We will continue with the methadone every 6 hours and begin weaning the dosage amount tomorrow. What a ride!

Total Bili is down to 1.8!!! Very exciting! The rest of his labs look great.

Our big news is that the word "discharge" is in our vocabulary!!! If all goes well, Carson could be discharged the middle of next week. We would stay here for about a week and a half at the Ronald McDonald House. Two weeks from today we'd be in clinic and if all looks good, we would be cleared to go HOME! That sounds so incredible. We don't want to get our hopes up, but so far all looks good. Carson has a cholangiogram on Monday and will probably get his t-tube capped after that.

Got to run. Have a great weekend!

Love, Carson, Daddy and Mommy

Thursday, January 10, 2002 at 10:39 PM (CST)

Once again sorry for the late post...another busy day. Now that Carson is VERY awake, he is keeping us busy.

He slept a few hours last night but is still quite wired. So, after a pain consult today, it is thought that it could be some of the prednisone and partly Carson going through withdrawl from the Fentanyl (narcotic). FUN, FUN, FUN! So, if it is withdrawl, hopefully it passes in the next few days. He has been weaned off of it since Monday and it was shut off this morning. Quite the little junkie...

His hunger is returning. He is still tube fed, and will be for awhile, but he nursed very well today. Also took some from a bottle. We're on our way.

Our hickman class went fine today. Now we have a feeding pump class tomorrow and probably one on how to run an IV pump early next week. We know how to hit the "silence" button really well, but we should probably learn more than that! Maybe by the end of this we'll have some college credits!?!

There are new pictures under the "webshots" link below. They're in the January album. Some cute pictures of our little peanut!

Travis may head home this weekend to take some stuff back and put some stuff away in the house. Need to get it ready for us!!! No official word on when discharge will be yet.

Well, time for bed for me and time for Daddy to stay up all night with Carson. Some day our lives won't be in shifts anymore. :-)

Love, Carson, Daddy and Mommy

Wednesday, January 09, 2002 at 07:59 PM (CST)

Late entry tonight...so don't panic! It just means we've had a busy day.

Carson is being worked hard by PT (physical therapy), OT (occupational therapy) and a speech therapist. Busy and popular guy. Plus, lots of docs popping in as well. Everyone is pleased with how well he's doing.

Papa Chip left today. He has been here for the most part since November 26th; took a trip home for about 9 days, but other than that has been our "gofer". Now how will we get supper? Just kidding!

Mommy joined a Fairview Parents Advisory Committee tonight. It will be very interesting.

Carson is still not sleeping, thanks to the prednisone. We think he's had about 9 hours of sleep since Saturday morning. We keep thinking he will just crash and sleep but it doesn't seem to happen. At least most of the time he is content. Today he really started talking more again and is back to making some fun baby noises.

We learn to take care of his hickman tomorrow and will have instructions on the feeding pump on Friday (although we've already learned). Tonight Mommy changed Carson's t-tube and JP dressings. Nurse Kate said it looked super-duper. We'll see if it is Carson-proof as he likes to play with his dressings.

More tomorrow! Special thanks to all of our visitors the past few days!!!

Love, Carson, Mommy and Daddy

Tuesday, January 08, 2002 at 12:06 PM (CST)

Today is overall MUCH better than yesterday. His morning meds were in him by 9 am, rather than noon. He even slept 5-6 hours in the night and LAUGHED at Daddy twice! He hasn't laughed since October. It was fun for Daddy.

Carson still doesn't have much of an appetite, so he will gain a tube today...a feeding tube. He just hates them, so we're not really excited. He just needs a nudge in the nutrition department and really needs to put some fat on those arms and legs. The good news is that we can finally start using the gallons of breast milk that is frozen in the freezer!!! With the feeding tube in place he can get off of the TPN and lipids, which is really a positive step.

He is having some problems sucking. Since he has had so many invasive things for the past 11 weeks down his throat, he is apprehensive. So we will start working with a speech therapist on relearning how to suck.

After his morning bath he got clothes on for the first time in weeks. He looks so good.

Today's bili is down to 2.4. It continues to creep down, which we are all thrilled to see.

Gotta run. Sorry for the late updates the last few days, Carson has kept us hopping!

Love, Carson, Daddy and Mommy

Monday, January 07, 2002 at 06:26 PM (CST)

Carson had a rough morning. It started with the fact that he is not sleeping much (2-3 hours in 24). We think it is just one of the yucky side effects of prednisone. Oh well, we can deal with it. Soon he will adjust and some of it will be tapered down.

Then he got into a vomiting cycle. Not fun. We finally got the Zantac, CellCept and Prograf in on the third try. After a few hours of letting his tummy settle, he has been fine ever since. He is eating a little too, which is great!

They are weaning his narcotic and it is going well so far. He should be off of it by tomorrow. That will help his gut and tummy out as well.

Carson looks so great. For the first time in a VERY long time, there isn't any tape on his face. We've kissed his cheeks a million times today. He also is no longer on a cardiac monitor, which is a first in 11 weeks. He will really miss pulling the leads off!

Carson went on a wagon ride today--his first in weeks! He liked it at first, but the sleepiness got the best of him. He was pretty popular as we walked around the transplant floor.

So, we are now transitioning into getting Carson used to the meds and taking them orally. Overall it is going well. We remember back to June and how we struggled and struggled to get them down him. We've learned lots of tricks since then!

The docs are very encouraged by how Carson is doing. Bili is down to 2.8 today. He starts Occupational Therapy again tomorrow and physical therapy later tomorrow or the next day. We need to get him strong again.

Going to grab supper and spend more time with Carson. :-)

Love, Carson, Daddy and Mommy

Sunday, January 06, 2002 at 03:12 PM (CST)

Oh boy! It's been a wild couple of days. We will try to fill you in!

Carson has lost more tubes. Last night they took out the NG. This afternoon he lost the foot IV. He is off of oxygen as well!

We love being on the floor (no offense to the PICU...just nice to make progress).

Both Mommy and Daddy got to hold Carson yesterday for the first time since transplant. It was incredible. More snuggles today as well. Today we might even go for a wagon ride.

He is taking his new meds like a champ. It's going VERY well and we are working on the time schedule. Luckily some are bubble gum flavored, so they are going down quite well. The only one he doesn't really care for is Zantac. It's kinda stinky. :-)

We got a refresher course in infant CPR this morning. Hopefully we never have to use it, but it is good information to know.

His bili was 2.9 this morning, and the rest of his labs look great as well. We are starting to see yellow poop again, which is very exciting!

We said "see you later" to Grammy Ruthie this morning as well.

We also want to say "thanks" to all of our visitors the last few days. We'll try to include everyone: Gretchen, Doug, Parker, Grace, Marisa, Dolly, Ryan, Pastor Hal Stoa, & Amy. Thanks for stopping by.

We will save the best for last: Carson smiled at Mommy last night. It was his first smile post-transplant! It was beautiful (actually he had several smiles!). Grammy tried to get a picture, but we don't think we captured it. There will be more smiles though.

We still can't believe that we are one week post-tx. WOW! What a week.

Love, Carson Noah, Mommy and Daddy

Saturday, January 05, 2002 at 12:53 PM (CST)

Yet another productive day - one more tube was taken out (the right JP tube)! Sometime this pm we will be moved to our new room on the transplant floor and Carson has been given the go to nurse from Mommy (when he feels like it, that is). Yippee!

Many thanks to Nana and Papa for all their love and support as they drive the long drive home today (how many oil changes lately?). Carson has kept them busy a couple of nights this past week.

We have moved from room to room many times since we got here but our upcoming move will be the sweetest so far.

Cason Noah, Mommy, and Daddy

Friday, January 04, 2002 at 05:35 PM (CST)

What a day! Carson is showing the surgeons and docs that somebody can go through a transplant without major complications. He has spiked two temps post-transplant and the one today is slowly coming down. Yet another one of Carson's mystery temps.

The great news is that Carson lost 5 of his 11 tubes, with the big one being extubation at 11:30 this morning. The other lines include a peripheral IV in his right hand, the two IV lines in his groin, and (drum roll please) his foley cath! They plan on taking at least one more out tomorrow.

The other bigs news is that maybe we can be transfered off the ICU tomorrow and moved to the transplant floor (5D). We would probably get our own room and it also means one step closer to going home.

On a sad note we watched a family lose their little baby today. He was Carson's roommate and our hearts are absolutely breaking for them. It could easily have been us in their situation. Spending so long in the ICU has given us a new perspective on life. We invite everyone reading this to spend even one day in a pediatric ICU (maybe as a volunteer). I promise you will leave with a new attitude. The courage and strength of these children and their families will change you forever. Maybe your job won't seem so crummy...maybe money won't be so important...whatever little complaints you may have will pale in comparison to a child's in an ICU. You will realize that all that matters is the life of a child.

Anyhow, something to think about as we rejoice in Carson's excellent progress.

Carson Noah, Mommy, and Daddy

Thursday, January 03, 2002 at 10:33 AM (CST)

Carson has been a busy little boy! He is busy healing and is very busy peeing! In 24 hours he peed 1200 cc's!!! (That's over a liter!) He lost 2.2 pounds in 24 hours as well! Looks like the diuretics worked quite well. Now maybe we can start thinking about getting some REAL weight on Carson.

The docs are very pleased with Carson's progress. We've made it so far without a trip to the OR, which is wonderful as well.

They have started weaning him from the vent and ---maybe--- he will be extubated by or on the weekend. We don't want to get our hopes up yet.

We have added some pictures to the webshots link. Pictures of pre-transplant and some from post. There are some impressive differences. Daddy and Mommy are very proud of their pink little boy!

We want to send out our congrats to Munchie, one of Carson's liver buddies. If all goes well, Munchie will be discharged and is going home today! Yah, Munchie!!!

Thanks for all of the love and prayers! Miracles do happen!

Love, Daddy, Mommy and Carson Noah

Wednesday, January 02, 2002 at 04:36 PM (CST)

Carson is doing beautifully. He is peeing very well, his belly is getting smaller, and he is resting well (well...thanks to the meds).

His liver profiles are slowly improving, except for his bilirubin, which improved very quickly (22 pre-transplant down to less than 4 post-transplant).

Mommy and Daddy began to attend classes today dealing with life away from the hospital and how to deal with Carson's special needs...blood work, medications, etc.

All the Grandparents have been spending time with Carson allowing Mommy and Daddy to get some sleep every now and then and to plan a "date" (Applebee's) tonight. Thanks all.

Needless to say we are very relieved to report that Carson is doing very well.

Mommy and Daddy

P.S. thanks Marylin and Ervin

Tuesday, January 01, 2002 at 12:44 PM (CST)

Happy New Year to all!!!! Best wishes to you for a happy and healthy 2002!

We rang in the new year last night with Carson and gave him lots of kisses. I felt pretty lucky to be able to kiss the TWO cute guys in my life at midnight. :-)

Carson is still overall doing pretty well. He is hanging on to a lot of fluid. He is up 700 cc's since surgery. So, they are really giving him lots of diuretics and they seem to have helped a little. The next few hours are big and if he doesn't start dumping, they may do hemodialysis. From what we've heard Fairview is a world-wide leader in hemodialysis, so that makes us feel good if we have to head down that road.

There is a little concern over one of the veins. The blood flow is a little more sluggish than yesterday, but it could be in part due to the extra pressure from all of the fluid. Hopefully if he gets rid of some of the fluid, the flow will improve as well. Overall, the daily ultrasound looked good and so far it doesn't look like we'll be heading back to the OR today.

We got to kinda see his incision today. It's under steri-strips. It looks great!

That's about all for now. Have a happy and safe new year!

Love, Mommy

Monday, December 31, 2001 at 09:54 PM (CST)

All in all a great day. Carson has opened his eyes a lot and is moving around a lot too. He seems a bit ticked at times...who can blame him?

His abdomen got a little bigger as the day went on and there was some concern over the possibility of bleeding. After some labs and an exam they are going to continue to keep a close eye on him. (Like they weren't already!)

He looks better and better with each passing hour. I have taken lots of pictures of his "pinkening" and will post them soon. Hopefully I can find a one-hour photo processing place on New Year's Day.

I think it's finally starting to sink in that Carson has a new liver. After the rollercoaster ride, it just seems unreal that we have passed such a big hurdle!

I'm going to bed soon; my nap wasn't long enough today! Hopefully Carson will sleep tight as well. A nurse gave us hot chocolate with winter wonderland marshmallows to celebrate the new year. Not sure if my eyes will stay open that long to sip it!

Happy New Year's Eve to all!

Love, Mommy

Monday, December 31, 2001 at 09:35 AM (CST)

OH BOY! Carson had a fantastic night and continues to get rave reviews from all of the doctors (and we have seen a bunch of them today). He opened his eyes several times in the night and at about 3:30 am they had to put restraints on his little arms so he wouldn't pull out the ventilator tube. We hate to see him restrained, but we're sure glad he is continuting to fight every step of the way, rather than just lying there and taking all of this without a fuss.

Basically, Carson has taken his new liver and ran with it. HIS BILIRUBIN DROPPED FROM 20.3 YESTERDAY MORNING TO 3.3 THIS MORNING!!! The color change is absolutely amazing...truly a miracle to watch. It is likely that it will take a bit to clear some of the rest, since his skin is even stained from the long-term high bilirubin and his numbers will fluctuate some in the coming days. We're prepared for that. Our transplant fellow's exact words regarding Carson's labs this morning were "perfect"! We grinned from ear to ear.

So far no bleeding or clotting issues. They are keeping his blood thin as it's easier to deal with bleeding than a clot.

It's been 24 hours since we found out about a possible liver...it feels soooo good to be post-transplant! Just incredible.

Prayers have also been answered regarding Carson's care. I prayed that there would be 2 nurses that would be here for the first critical days and we have one of those two for the next three day shifts for 12 hours/day! Katie is like family to us and we are so thankful that she is with us today. She is just one of Carson's "honorary" aunties! (Not a girlfriend--he'd have too many with all of the nurses he's been in contact with!)

Well, I'm going to sleep for a bit. Thanks again for all of your love and prayers!

Love, Mommy

Monday, December 31, 2001 at 12:33 AM (CST)

Oh the tears that have flowed today...but right now we have tears of JOY! We got to kiss and talk to Carson over two hours ago and he looks great. EVERYONE is very pleased with how he is doing, which makes us very, very happy. He is making good bile in his T tube, which is fantastic. It shows us that his liver is working.

He is full of "flare": an NG tube in his nose, he is on the ventilator, has his hickman in his chest, an IV in each groin, an IV in his right foot, a foley catheter, the T tube, and two JP drainage tubes. Plus the incision, which is stapled together. It's under gauze, so we haven't seen it yet. Through all of this, he looks so good! (Never thought I'd say that about my baby full of so many tubes!)

We have started to witness first-hand the amazing clearing of Carson's system. "Mr. Bili-Rubin" is packing up and leaving...at least getting down some. Don't know what his bili is right now, but the proof is watching Carson. His fingers and toes are PINK!!!! The last time I looked his palms were starting to get pink as well. It is just incredible. It just brings tears to my eyes thinking about how he could look in a few days...we could see white eyes again!

So, we are just in awe at what the last 15 hours have been. What an amazing journey. We left home 10 weeks ago today too...another journey! We know we aren't through the woods yet, but we sure have a lot of hope.

We are so thankful for the love and support from so many people...family and friends alike. Grammy Ruthie, Papa Chip, Uncle Chris, Uncle Corey, Auntie Bree, Jody Maanum, Marisa McFate, Ryan Bollig and his aunt Audrey and our good buddy Fuzz and his mom, Jill, all kept us company during the waiting hours. THANK YOU! It's also so fun and uplifting to see all those messages pour in...Carson can just feel all of that love.

Travis kept telling me after Thursday's "excitement" that God has a plan, and that this all happened for a reason. It was so hard for me to believe at first, because all I could think about is that we were going to have to go through all of the emotions again...but I knew there was a reason. It was between God and Carson and it certainly came out today what the plan was. Although I would have done it in a heartbeat, I'm also thankful that I was able to be a part of this experience today and will be an active part of his recovery.

Well, I will close for tonight. Nana and Papa should be arriving any minute.

I'm sure we will have many updates in the days to come. We will post pictures as soon as we get some developed.

God Bless to our donor family. They are never far from our thoughts and prayers.

Love, Mommy

Sunday, December 30, 2001 at 08:58 PM (CST)

YIPPEE! Carson is out of the OR and is doing well. We should be able to see him soon. (We've actually taken a peek in his room and saw him from a distance--he looks great!) There are still a lot of people around him and they are getting him settled in so we should be able to see him soon.

Overall, the surgery went very well and without any complications. Our first hurdle is over, the next is to watch for bleeding and clotting the next few days. They will be big days for us.

They did not have to cut down the liver and Carson was able to keep his spleen. All in all, it went so well!

We will update more later! Love to all!!!

Love, Mommy

Sunday, December 30, 2001 at 06:58 PM (CST)

Carson would like everyone to know that his new liver is inside of him now. The vascular system is hooked up and they are beginning to work on the bile system. A nurse from the surgical floor visited us and told us that there is blood flowing through his beautiful pink liver. The labs all look great and in three or so hours all should be said and done.

For the first time in a long time Rhonda and I have images of taking Carson home.

Once again, if you didn't believe it before, believe it now - ORGAN DONATION SAVES LIVES!

Thanks for all the thoughts and prayers!

Daddy

Sunday, December 30, 2001 at 05:32 PM (CST)

The update just came in...Carson is doing GREAT! The new liver has arrived and they are still working on taking his old liver out. All is going well, as reported from one of the surgeon's (Dr. Humar). We are absolutely thrilled.

That's all for now...will update when we know more. We have open access to the computer at all hours, so keep checking!!!

Love, Mommy

Sunday, December 30, 2001 at 01:42 PM (CST)

Carson is off to the OR. He went in about 45 minutes ago. He was so calm and content. He is so ready for his new liver. Now God is holding him in His arms and Jesus is holding Carson's hand as they remove his old liver and prepare for the new one. Drs. Humar and Payne are performing the transplant. They are brilliant people.

The new liver should be here by 4 or 5 pm. It will take that long for the removal...then the process of placing the new one begins. Sounds like the earliest Carson will be out is 8 or 9 pm. Could be as long as 12 to 16 hours.

Corey and Bree are here. Chris, Grammy and Papa Chip should be here within minutes. Nana and Papa are on the way. We will be filling up the family waiting room today!!!

My mind is certainly with Carson, but I weep for the mother and father of the young child that is giving this precious gift of life to Carson. Will they ever know our deepest gratitude? Will they realize how they have given Carson a new birth? I pray that they find some comfort during this time of their awful loss.

Will update here as we have updates from the OR.

Thanks for all the notes in the guestbook...they will keep us going today and in the coming days!!!

Love, Mommy

Sunday, December 30, 2001 at 11:09 AM (CST)

Well, Carson knew what to do all along. He did not want his Mommy's liver because he is GETTING ONE TODAY!

We are pretty much bowled over and our heads are swimming.

Our excitement is tempered by the fact that a three old child who recently passed on. Our deepest condolensces to the family and our heart-felt gratitude for them making the choice to donate. If you didn't believe it before, believe it now...organ donation saves lives.

Daddy

Saturday, December 29, 2001 at 06:36 PM (CST)

MARK YOUR CALENDAR!!! Our new date is January 7, 2002. So far, Carson's temp is behaving and all cultures are coming back negative for growth, although it will be awhile before we know anything about the viral ones. We will once again be scheduled for first thing in the morning. We hope and pray that Carson stays stable and even gets stronger in the next week and a half!

Thanks for all of your love and prayers!

Love, Mommy

Saturday, December 29, 2001 at 12:58 PM (CST)

Looks to be a quiet day today. We need one of those!

Everyone left today...Uncle Chris, Nana & Papa, Grammy Ruthie, & Papa Chip. Chris and Papa Chip went to Fargo for a day or two. So, it REALLY got quiet today.

We had a visit from our Pastor, Tim, from Bethlehem Lutheran in Fargo this morning. It was soooo good to see you! Thanks for stopping by and offering such heartfelt words.

Our friend, Amber is doing pretty well with her new heart. We are so thrilled for her. She continues to improve each day. We are just a few doors down from her. We get updates from her Grandma and Mom and all reports look good so far!!!

I'm still feeling pretty groggy and lightheaded (some would say what's new about that!). Still don't feel like eating much...hopefully that changes soon.

Carson shared more smiles this morning. Travis caught them on video! They are so sweet!!!

That's all for today. 'Til tomorrow!

Love, Mommy

Friday, December 28, 2001 at 02:54 PM (CST)

Carson is 8 months old today! It's hard to believe that it's already been 8 months since our little miracle arrived!

Carson continues to run a low grade temp. All cultures have come back looking fine, so they are wondering if it is a GI infection, which they can't culture for. He is on all sorts of antibiotics.

On a very positive note, his chest x-ray taken today looks better than yesterday and much better than 4 days ago. So, his lungs are really clearing up. Also, an ultrasound of his kidneys yesterday showed that they look pretty good, there is an improvement from the last scan. Seem to be out of the woods on those (at least for now!).

To try to track all of this fever business down, they are going to run some viral cultures. Maybe that will show something and provide some answerers. Hopefully, Carson will just clear up and not give us these not-so-little scares.

Dr. Humar was in and he is already looking for another open transplant date in the OR. No word on when yet, but will post immediately when we find out. If we need to he will book it on an emergency basis. He is also very thankful that I hadn't been cut into yet!!! (We were about 20 minutes away from that, apparently.)

Well, I'm going to run. 'Til tomorrow!

Love, Mommy

Thursday, December 27, 2001 at 08:52 PM (CST)

How can I summarize today? Lots of disappointment and questioning, but in all we know that God has a plan and it's between Him and Carson. Hopefully someday soon they will let us in on all of it!!!

Well, our "dress rehearsal" went quite well. Since I've never been under before, they always watch for problems. Good to know that I will be okay with that. That's our silver lining of the day!

I had so much fear when I woke up in recovery. I found out it was 9 AM and I wasn't told much. I kept asking if Carson was okay and finally someone told me he was fine and still up in his room. Then, I worried that my liver wasn't suitable, so I worked my hand down to my tummy--no incision!?! Then I really started asking questions. Soon my surgeon was there and told me that Carson had spiked a temp. He told me some other stuff, but I don't remember most of it. Will talk to him tomorrow. I got to see Travis and my Mom fairly quickly and they told me everything. I had a good nap this afternoon and am feeling pretty good, except for a sore throat. Not to shabby! I had IV's in both arms and a central line in my neck and was intubated when the PICU docs called the OR stat. I'm so thankful that they hadn't opened me up yet. The Lord intervened at just the right time.

Now, Carson's temp is down to normal, which is great. His dialysis fluid (which is tested daily) came back with a high white count. They are waiting for the cell breakdown, but that may be the culprit. If so, at least we have an answer and can go from there.

We appreciate all of the support we continue to recieve. It was good to see you, Jody, Dolly, Steve, Bill, & Kim! (Hope I didn't miss anyone!) We sure needed those hugs today! It is also wonderful to have so much family here. That means so much to us.

More tomorrow!

P.S. Carson gave us more SMILES today--they were great! I caught some on video and hopefully some on film!!! That's our sign of Carson telling us that he is going to be okay!!!

Love, Mommy

Thursday, December 27, 2001 at 09:05 AM (CST)

Yet another low in our rollercoaster ride. Rhonda was happily under sedation less than 1/2 an hour away from being opened up and Carson spiked a temp...big time (102.6 F). Our tx day has yet again been postponed because of a temperature.

Carson has spiked a little bit of a temp almost every day but as quickly as they come, they go away. This one just had bad timing and the distinction of being his highest reading yet.

Dr. Humar is proceding with caution. There will be blood cultures, urine cultures, and PD (dialysis) fluid cultures. This may postpone things days or weeks, depending on what the cultures show.

The fortunate thing is that they had not yet opened up Rhonda. If they had taken her liver by the time Carson spiked then our live-donor option would be gone. Needless to say Rhonda will be devastated. We were so close.

Nana and Papa showed up bright and early this morning after driving the whole 15 hours straight. Jody M. showed up just in time for all the excitement.

Thanks for all the thoughts and prayers. I am going to go bang my head against a wall now.

Daddy

Quick update - 11:17 am. Rhonda is pretty much fully awake now. She is pretty devastated as she was ready, willing, and able to donate today. Carson's temp is going down.

Wednesday, December 26, 2001 at 04:09 PM (CST)

As of now, we are ON for tomorrow. Carson's fever is down and since it wasn't high today, that is good. Everything will depend on what Carson decides to do through the night. The final decision will be made tomorrow morning. I report to surgery admission at 5:30 AM and we go from there.

Just some information: I will go into surgery first. They will open me up and check out my liver. If it looks great and is "transplantable" they will bring Carson down and begin to remove his current liver. We have been told that my surgery is typically 6-8 hours and Carson's could be 10-16 hours. These are some averages. Hopefully that will prepare you for what the wait of tomorrow holds. The website will be updated as info is learned.

Carson is considered very high risk...we've known that from the start. After transplant our biggest risks tend to be clotting and bleeding. I'm sure there will be many other issues as well, as time will tell.

Grammy Ruthie arrived a few hours ago and Nana and Papa are on their way. We appreciate everyone's support. Tomorrow will be a very anxiety-filled day and will be extremely difficult for everyone. Travis isn't quite sure yet how he will get through the day.

We will post any more information that we find out today. Hugs to all of you! God bless!

Love, Mommy

Wednesday, December 26, 2001 at 01:16 PM (CST)

Well, we might be off for tomorrow. We're waiting to see. Carson had a temp yesterday, then it came back down in the night. BUT, today it is up again a little bit (100.3 under his arm). So, we haven't heard for sure, but we're thinking that tomorrow is off. We've heard he needs to be fever-free for 48 hours before. We need to ask our surgeon about that. They are checking EVERYTHING on him and so far all cultures have come back negative for growth. He is such a mystery!!!

I went through clinic this morning and got more labs, had my liver checked and got instructions on washing my tummy. I'm on clear liquids now (nothing after midnight) and will progress like tomorrow is "on", until I hear otherwise.

On a GREAT note, our friend, Amber, is getting her heart today!!!!! Please keep her in your prayers. She went down about an hour ago; the tx will start in an hour or two. We are so excited for her and her family! Please also keep the donor's family in your prayers, as they obviously had a very sad and difficult Christmas holiday. Our thoughts and prayers are with them.

As soon as we know something on Carson or Amber, we will post more info. We are waiting on pins and needles here!

Love, Mommy

Tuesday, December 25, 2001 at 12:47 PM (CST)

Merry Christmas to all! What a beautiful day!!! We had a wonderful Christmas Eve...Carson opened (with Mommy's help) lots of presents. Daddy, Uncle Chris and Mommy went to 11:00 pm Christmas Eve services at Grace Lutheran, right next door. It was very peaceful and moving and we left with images of the candles burning, giving us hope that there is truly light at the end of all darkness.

When we arrived back at the Ronald McDonald House, Santa had arrived!!! There was a huge bag full of gifts in front of our door...17 presents to be exact!!! About 3 weeks ago the manager of the house had asked us to fill out "wish lists" for all of us. Well, we were truly blessed as we opened turtlenecks, sweaters, sweatpants, socks, flannel shirts for us...and Carson...Carson must have been a VERY good boy this year as he got toys, books, an ornament, stuffed animals...and much more. I am determined to make a list of everything Carson has received for Christmas and it will take me awhile. :-)

We had a home-cooked breakfast at the house this morning. Great group of people and wish we could have visited longer. I wanted to get here to wish a special someone "Merry Christmas!". We have Christmas Day dinner tonight at 5:30 at the house. Uncle Corey and Auntie Bree are stopping by this afternoon as well!

It seems that the greatest Christmas gift of all was yet to come. Earlier this morning our transplant surgeon stopped by. He is extremely pleased with Carson's progress. In fact, Carson is probably the most stable now than he has been in the past 9 weeks (heart surgery was 9 weeks ago today!). He is exploring OR times and if a donor doesn't come in by Thursday, we may do the live donor transplant this Thursday!!!!! It seems that even though there are obvious risks (as with any transplant) they feel quite optimistic since he is doing so well. Although I am still scared, a huge sense of relief filled me upon hearing the news. I truly believe everything will be ok with Carson. All of the events, especially in the last 9 weeks happened for a reason and the fact that we didn't transplant on December 5 was a good thing. Carson is bigger and much stronger now. (I think I forgot to mention this, but Carson has grown over 2 inches in the last month!!! We have a long, but skinny, baby boy!)

So, as soon as we find anything else out, we will post it. All of this is provided that Carson stays very stable and doesn't throw us any "snow" balls.

We hope and pray that this finds all of you enjoying and treasuring the true meaning of Christmas. We are continually reminded of God's power to work miracles and everytime we look at Carson we see God working in wonderful ways. Merry Christmas to you and your family!

Love, Mommy, Daddy, and especially Carson Noah

Monday, December 24, 2001 at 10:01 AM (CST)

Today started on several positive notes. First of all, Carson has been sleeping very well the last day and a half. He still has a lot of catch up to do, so sleep away.

His PD tube was drained again early this morning because more fluid was accumulating in his belly. They pulled off over 400 cc since 1am. Wow.

The renal docs were in today. The plan is to pull his foley (this makes me, Daddy, very happy. Its a guy thing!). They will also start him back on dialysis. His kidneys are fine but this is an excellent way to draw excess fluid off. Another plus is that since the dialysis draws off toxins they will be able to pump Carson full of protein with no risk of poisoning his system.

Dr. Humar (the tx doc and one of our heroes) also dropped by. He noticed that Carson was getting chunkier and was amazed that his bilirubin dropped to 16! He is pleased that Carson is holding steady, which adds time to our side.

Carson's first Christmas is fast approaching. We are not exactly where we expected to be now but these tough times will make us appreciate every day, not just Christmas, that much more. Happy holidays, peace, and good health are sincerely wished for all.

Daddy

P.S. Today will be a good day.

Sunday, December 23, 2001 at 03:35 PM (CST)

Better day than yesterday. They drained off around 600 cc's total from Carson's PD catheter. The chest x-ray that was taken in the middle of the night looked great, so that is a relief. They capped off the drain and are watching him very closely. He is on Bumex, a diuretic, every two hours to try to control the fluid.

Carson's temp is down--YAH! His respirations are still rapid, but a little better than yesterday. He had a very restful night, without the aid of much medication. He has had a few brief wakeful periods today, but all in all has been resting a lot.

Uncle Chris, Uncle Corey and Auntie Bree made it safely to Fargo. It was so fun to see them. Uncle Chris will be back here tomorrow and Corey and Bree will stop by again on Tuesday.

I wrapped Christmas presents last night. It was fun! We have 3 laundry baskets full of presents to bring to the hospital tomorrow. (Can you guess who most of them are for???) I think we will drive them over. :-) Looks like the snow is here to stay...no more walks on green grass back and forth to the Ronald McDonald House!

Today especially I feel a sense of peace and that God is reassuring us that everything will be okay with Carson. I am continually repeating Philippians 4:13 "I can do all things through Christ who strengthens me." That verse gives us hope and peace to go on and face what each hour brings.

'Til tomorrow!
Love, Mommy

Saturday, December 22, 2001 at 06:21 PM (CST)

Well, another one of those days that we can term "it's been quite the day".

Carson's abdominal girth went up 4 cm in about 12 hours. The docs watched him very carefully (so did we...I just kept the tape measure under him and measured every 1/2 hour) and when his breathing became very labored, they opened up the PD catheter that is still in his abdomen and drained off the fluid. They got 350 cc's in 20 minutes. They also checked his chest and abdomen by x-ray and there was a little fluid on his lungs. So, after some bloodwork, they determined he could be starting some infection. Once again, they are culturing EVERYTHING...urine, PD fluid, and blood to see if anything grows. They are starting him on yet another antibiotic to get a jump start. They are also calling in renal again to do some checking if they should start dialysis again. The docs are being very proactive and want to get things going before he really would go downhill. He is also running a bit of a temp again. :-(

Uncle Corey and Auntie Bree arrived from Des Moines via rainy and snowy roads. They stayed for a few hours and we opened some presents. They are going to TRY to make it to Fargo tonight with Uncle Chris, but they are checking out the road situation as I type. They got to get in on the "excitement" of the afternoon.

So, it appears Carson wanted to make sure he stayed at Status 1...no messing around for this kid. If you're going to do something, do it in a BIG way, right??? We teased our resident that Carson was missing her and just wanted more attention from her. :-)

So, we hope and pray that Carson improves during the rest of the evening and through the night. Looks like his prayer day will come just in time!

God's Peace to you this Holiday season!
Love, Mommy

Friday, December 21, 2001 at 12:27 PM (CST)

Another good day. We had some big news this morning...they stopped Carson's dialysis. In some ways it was a surprise move, but renal thinks he is doing very well. So, the catheter is still in and they will leave it for a few days just to be safe. If they have to start it back up, it is very easy to do.

Our big fear was if Carson got off dialysis he would shift and not be Status 1 anymore. To our relief, they are planning on keeping him here in the PICU, which automatically makes him Status 1. Whew! If the PICU fills up with more critical cases, we might have to move to 5A (back to the floor), but for now we're here.

We played this morning with the musical card from my Uncle Grady and Auntie Susie. He kept opening and closing it to make the music start and stop. He certainly had the "cause and effect" thing down. It was really cute. Thank you for the cute card!

Uncle Chris arrived last night from Atlanta (he had work meetings there). Papa Chip will be here in a few hours. Uncle Corey and Auntie Bree will swing through tomorrow for a few hours as well.

We would like to send out Happy Birthday greetings to our wonderful friend, Marisa. Hope you have an awesome day, Marisa!

I hope to scan and download some pictures today--lots of "Elf Carson" shots. They will be on the webshots link below, so just keep checking.

Happy and safe travels to all of you on the road this weekend. We wish everyone a very Merry Christmas. May God Bless you and all of your loved ones and you have a Happy and Healthy 2002!

'Til tomorrow!

Love, Mommy

Thursday, December 20, 2001 at 03:28 PM (CST)

What an awesome day. No, we don't have a liver yet. Hopefully soon!!!

But, CARSON SMILED AT MOMMY FOR 20+ MINUTES THIS MORNING!!!!! He gave me huge ear-to-ear smiles. I cried and enjoyed every second. I got out the camera and snapped 15 pictures and took 8 minutes of video. It was incredible. I would have called Daddy (since he was sleeping at Ronald McDonald House), but I knew Carson would probably stop as soon as I called. I'm so glad I captured it on video though. I'll have to go back and look at the times, but I just wonder if it didn't coincide with the raffle drawing in Bainville.

So, as soon as we finish this roll and get it developed, I will post some very precious pictures.

Congrats to the winners of the raffle...thank you to all of you for the hard work you put in. It's really hard for me to comment on everyone's generosity, because it is so overwhelming. It always brings tears to my eyes. It is just so meaningful to have so many people thinking and praying for Carson.

All docs are very pleased with how Carson is doing today...renal, PICU, neurology, GI, transplant, ...no wonder the days are so busy!

Child Family Life was by today and we made two imprints in some denal goop and plaster of paris of Carson's hand. On one, he is holding my finger. They are so neat--you can see the tiny lines in his hands. We'll take pictures of them to put on the web, but it won't be like the real thing.

Carson has really been resting a lot, which is great. I keep telling him he needs his sleep because he has a big day coming up!

Well, I'm going to go and enjoy the rest of the afternoon. I'll put on my Bing Crosby Christmas CD and watch beautiful Carson sleep.

Until tomorrow! Love, Mommy

Wednesday, December 19, 2001 at 06:17 PM (CST)

GREAT NEWS! The MRI revealed that all looks great in Carson's brain & head. Still doesn't explain why he has a full soft spot, but they think it could be due to fluid fluctuations, since he has had a lot of fluid shifting in the last few weeks, especially since dialysis. His soft spot was full before dialysis, but likely since he was on fluid overload then.

We are sooooo relieved and thrilled. He has had a pretty sleepy day. It's nice to see him resting.

Well, someone is going to get a sponge bath now. Can't wait until we can do "tub time" again--Carson loves making splashes.

'Til tomorrow!

Love, Mommy

Wednesday, December 19, 2001 at 12:32 PM (CST)

It's been a quiet day...just lots of doctors and residents coming in and out.

Carson had a fairly good night; he continues to be bothered when his dialysis drains (which is every hour). They bumped up his pain meds so he can at least be a little "comfier".

His MRI has been pushed back to 3 pm for some scheduling reasons. That's okay. Nice to not be an emergency case.

We continue to be amazed at the response to Carson. Thank you to all of you who stop and pray for Carson so often. Thank you too for the precious messages you leave. We've always known Carson was a special miracle from God and it looks like many of you know this as well! He has such an extended network of precious family and friends!

I'm going to go and snuggle with Carson. We'll snuggle until our trip down for the MRI. :-)

Love, Mommy

Tuesday, December 18, 2001 at 12:33 PM (CST)

Today is MUCH better than yesterday--for Mommy, Daddy and especially Carson!

The spinal tap this morning looked good...the pressure reading was at the high end of normal, but still in the normal range. Also, the fluid was not cloudy and lab tests have shown it's not meningitis (spelling?). So, whew! Big sigh of relief.

The swelling on his soft spot is actually down today too. Could be just some fluid shifting around. The neurologist wants a day of rest for Carson (she ordered that the bare minimum be done to him today, just snuggles!) Unless a liver comes along!!! We will have an MRI tomorrow to further investigate the swelling and fluid issue.

He is still shaking, especially when he reaches out to toys or us. The neurologist thinks the tremors could be in part to his weakened status. He has been pretty fragile for 8 weeks now. Hard to believe that heart surgery was 8 weeks ago today.

Last night he started getting more playful, which was great to see. He played a lot through the night with Daddy too. He even smiled a few times last night! It was so beautiful to see!!!

Carson just had a visit from 4 Minnesota Vikings. We donned him in his elf hat and he kept staring at them. He liked their purple jerseys. They brought him a t-shirt, Furby and Vikings picture. That was pretty cool. I'll post the picture as soon as I get it.

Carson is keeping Uncles Derwin and Ian busy. They are loving every minute!

I'm going to go snuggle with Carson and say one of many prayers of thankfulness over the good news of the day! God Bless!

Love, Mommy

Monday, December 17, 2001 at 04:56 PM (CST)

Another tough day.

First of all, Carson's kidneys are still spilling out protein. Even though he is still peeing well this is a cause for concern. We are still not out of the woods with the kidneys.

Secondly, Carson's hands have been trembling quite a bit lately and the soft spot on his head is really puffy. Neurology came in today and looked Carson over. There is definitely something going but what it is they are not sure. They are planning a spinal tap this evening to (hopefully) rule out any infection such as meningitis. The neurologist was very reassuring and gave several examples of positives: he is reaching out and playing with his toys and our glasses, and he will follow you with his eyes. She said that most kids in Carson's situation would not be nearly this alert.

They tx surgeons still prefer a cadaveric liver as opposed to using Rhonda as the live donor. We didn't know this before but for whatever reason Carson's high bilirubin levels would make the live donor option trickier. Size is still the main concern.

So, more to think about and more to worry about. It is tough to stay optimistic that a liver will come in. We are not hoping someone else dies, but we are hoping that if a family does lose a loved one that they make the decision to be a donor. We have been told that being a donor family is the only good thing to come out of losing a loved one. It is also reassuring to the donor family to know that part of their loved one has saved a life and still lives on in someone else. So please spread the word about the importance of organ/tissue donation. With all the suffering going on in the world right now it is nice to think that organ donation ultimately means life.

Uncle Derwin and Uncle Ian arrived from Swan River today. Its great to see them and they have yet to beat Carson in many games of tug of war.

Here's hoping tomorrow is a better day.

Daddy

Sunday, December 16, 2001 at 07:35 PM (CST)

Carson had a rough night last night...was pretty upset. So, we got him some "I don't care" medicine today and he had a good morning. The afternoon was a little rough, as has been the evening. Hopefully it will be a good night.

Carson started running a bit of a temp tonight...100.3. :-( This makes us super-scared and frustrated. So, is it an infection? If so, from the blood, dialysis, or where? They are checking urine, blood, dialysis output, stool and everything they can think of to rule things out. The wild thing is that one of his top teeth looks ready to pop out and maybe it's from teething!?!?! No way to test for that! So, the roller coaster continues.

We had a wonderful day of visitors: Grammy Ruthie (who left for Fargo this afternoon), Dolly and Ryan Bollig (thanks for the cookies and Comet reindeer!), Uncle Chris, and Doug, Gretchen, Parker and Grace Milbrath (thanks for the book and great videos!) Ryan and Parker are just two of our liver transplant inspirations. Ryan was transplanted the end of May and Parker about 8 weeks ago. Both look wonderful! Visits from you give us so much HOPE!

I was really down today when Carson started running a fever again. I took a walk to the Children's Center, specifically 5A, where we were a week ago. There is a young woman named Amber there. She is 13 and a very sweet person. She is waiting for a heart. We sat and talked for awhile and she once again (as she has done before) offered part of her liver to Carson. I began to cry at her willingness to give. We hugged and she patted me and said "Baby Carson will be ok, he will!" I felt so guilty being comforted and finding strength from someone who herself has been through so much. She is so strong and we admire her so much. Please keep her in your prayers.

Fuzz is another young man waiting for a heart. He tie-dyed t-shirts for all three of us yesterday. As soon as we get them back, I will post pictures of them. He is a hoot! He has been here since July. Pray for Fuzz too!

Our buddy Munchie is doing very well! He is keeping his folks (and docs and nurses) on their toes. We are so thankful that his recovery is going so smoothly. Way to go, Munchie! Continue to keep his family in your prayers!

Well, Carson just woke up and isn't fussing...Travis says he's content, so I want to enjoy every moment! 'Til tomorrow!

Love, Mommy

Saturday, December 15, 2001 at 01:52 PM (CST)

Looks to be a quiet day today...has been so far.

There is more tinkle flowing than yesterday. Yah for pee! It's amazing how obsessed we become over bodily fluids!

Nana and Papa left today...they had a good visit here.

Pretty much just a sleepy and lazy day! Hope it continues. :-)

Love, Mommy

Friday, December 14, 2001 at 11:50 AM (CST)

Great day! The tinkle is flowing a little more today than yesterday. By 10:00 AM this morning he had already put out more than he did all day yesterday. It's still not at all what it needs to be, but it's a big start! What a big relief!

No big changes for today. I got to watch a procedure on Carson this morning. A surgeon added a few stitches to the dialysis tunnel site, since Carson was leaking so much ascites fluid from it. We didn't want to increase any chances for infection, which is why it got stitched up. It'll be lots easier to hold him now too--he won't get so soggy so quickly! :-)

Grammy Ruthie arrived a while ago. She thought Carson looked puffy. She should have seen him Monday night!

That's all for now. We are so thankful to God that our little miracle baby keeps fighting and overcoming each of the battles he is presented with. He is so strong!

Love, Mommy

PS We added some new pictures to the "Webshots" link below.

Thursday, December 13, 2001 at 11:55 AM (CST)

Good day so far! We've noticed that good days always follow really bad days! :-)

Renal and GI have been in so far. We're basically on status quo. The ultrasound yesterday showed enlarged kidneys (no surprise). They will do another ultrasound today to check the blood vessels around the kidneys. Everyone is still optimistic. That feels good!

Carson had a great night with lots of rest and 7 poops! They weren't huge, but the main thing is that things are moving. Dr. Humar (tx surgeon) told us that if the bowels stop, that's a bad sign. Looks like Carson is A-O-K in that department!

Daddy got to hold Carson for awhile this morning and it was wonderful for him. It was great to see.

I'm working on our Christmas cards...hope to get them out in the next few days.

Ta-ta-for-now!

Love, Mommy

Wednesday, December 12, 2001 at 03:29 PM (CST)

We just recieved optimistic news...the tx surgeon is not considering the kidney tx at this point. He and the renal docs are in agreement about this. (It was our GI that originally mentioned it this morning.) We understand why it was brought up, basically a "worst-case scenario". We appreciate the fact that they are not sugar-coating everything, even though it has made for a day from absolute hell. Thankfully, Carson has slept through it all.

I was able to hold him for about 2 1/2 hours...it was wonderful. The ONLY reason I gave him up was because ultrasound came to check his kidneys over. We don't know results yet.

So, we have a small sigh of relief, but we're still guarded. Papa Chip went home today to check on a few things and will be back in a few days.

Gotta go...KEEP PRAYING! God Bless.

Love, Mommy

6:00 pm

UPDATE: The news keeps getting better. Dr. Kim was just by (renal doc) and he is quite optimistic about Carson's kidneys. The fact that his kidney failure was so acute and also that he is making some urine (only about 50 cc's since midnight, but at least there is some!) makes him think that Carson's kidneys are just kinda sleeping right now. He thinks they will do just fine post-liver tx. Of course, that is as long as Carson stays the same or improves. We will wait to see the results of the ultrasound.

What a day!

Wednesday, December 12, 2001 at 12:00 PM (CST)

Devastating day.

The docs are considering the possibility of transplanting one (just one) of Carson's kidneys as well. If a cadaveric liver were to come they might take a kidney from the same donor.

Their concern is that the kidneys won't rebound and having functioning kidneys is vital after a liver transplant.

Keep in mind, this is not written in stone. We are hoping beyond hope that his kidneys do respond in the next few days and this bump in the road will just be a bad memory.

On a positive note, Carson did smile twice throughout the night. That shows just how strong he is.

Please pray for Carson Noah.

Daddy

P.S. Now more than ever we need to get the word out about the importance of promoting organ & tissue donation. This is not only for Carson but we have also come to know two wonderful youngsters who are awaiting hearts. We would love more than anything for Carson and our two new friends to go home soon. If you are interested in helping to promote organ & tissue donation go to www.transplantawareness.org. They have some wonderful things you can order at reasonable prices to help get this vitally important message out.

P.P.S. Rhonda is holding Carson right now. It is a beautiful thing.

Daddy

Tuesday, December 11, 2001 at 02:36 PM (CST)

Wow...a busy day.

Carson has not peed since I last posted, so it might have been a fluke. We continue to "pray for pee"! At least his kidneys did make some urine. Anyway, the dialysis process continues. He gets it every 30 minutes for 3 minutes. They pull it back out and measure and he is consistently dumping out more than they put in, which is great.

We're all praying for a liver, since a child donor liver seems the best case scenario for Carson right now. Santa was by and we had a picture of Carson and Santa. Carson asked Santa for a liver (type O please). Well, I guess Mommy and Daddy asked Santa for a liver for Carson! Then Snoopy Santa was by a little later--we had the same request!

The renal docs are pleased with Carson's progress since last night. The tx docs are very closely monitoring everything that happens to him and working hard to keep everything else in tip-top shape.

That's all for now. I'm going to try to get a nap. God's Blessings to all of you helping us get through this!

Love, Mommy

Tuesday, December 11, 2001 at 10:59 AM (CST)

BIG NEWS...Carson just peed!!!! The funny thing was he peed into a diaper, even though he has a foley catheter in...pretty talented little guy. It was 40 cc's, which is a good start. There was a tiny bit of poop too, but not much. That's okay...one thing at a time. Urine is a lot more important right now!

GI was by, and they are really hoping for a cadaver liver...better for Carson because of the recent issues. Since he is at Status 1, that could come sooner than later, but you never know. We don't have a magical "cut-off" of when they would use my liver...it's up to Carson and God right now.

The scary part about a tx now, is that with the kidney issues, he is at an even higher risk. So, the fact that he is making pee gives us hope that he is heading in the right direction. That's what all the docs are saying too...he is heading in the right direction.

His temp remains normal, so we pray that that stays down--we don't need another infection!!!

Will update when we know more.

Love, Mommy

Tuesday, December 11, 2001 at 09:08 AM (CST)

Carson was extubated an hour ago! He is breathing well on his own. He is much happier with that yucky tube out. He has been resting fairly well through all of this.

The dialysis continues, as it likely will for several days. He isn't peeing on his own a whole lot, at least nothing to get really excited about. :-( Much to Carson's delight when he is older, we will be sure to broadcast when it starts to pick up.

Papa Chip and I arrived back to the hospital at 1 am...I was in Fargo for about 5 hours and actually at our house for a little over 2!!! I teased Carson that if he didn't want me to leave, that's fine. He didn't have to be SO dramatic about it. I enjoyed my chiropractic adjustment A LOT and it was wonderful to see all of you in Bison-land (that's NDSU for all of you non-natives!). I really needed the hugs--thanks so much.

Papa and Nana are on their way. We should see them before noon!

Well, I see the docs are making rounds soon. Will update when we know more.

Love, Mommy

Monday, December 10, 2001 at 02:39 PM (CST)

Carson has had a pretty tough day so far. He is retaining a lot of fluid and has not peed even with added diuretics. His belly is big and his face is also quite puffy. His respirations are quite high as well. It got to a point where he was so uncomfortable and irritable that they gave him some morphine. Uncle Chris suggested running the faucet in the bathroom to help him pee.

Rhonda, Grandpa Chip, and Nana and Papa are all on their way to Fargo, although from two different directions, as I type this. Rhonda is going back to visit her friendly chiropractor, check in on the cats and the house, and to touch base with the NDSU folks. Grandpa Chip is heading back to Williston for a few days. Nana and Papa will stay the night in Fargo with Rhonda and all three will make the trip to Mpls tomorrow. That leaves Carson and Daddy here to get into trouble together!

Here's hoping for a quiet day and a diaper full of pee!

Daddy

8:15 pm UPDATE

Well, you can flush our quiet day straight down the crapper. Carson's potassium was beginning to creep up into the dangerous level (fatal if high enough) and he was not peeing. They moved us back to the ICU and they hooked Carson up to a dialysis machine because now his kidneys are not functioning properly.

Why is this? Well, as the liver goes, so go the other organs. Because of the extra pressure in Carson's abdomen, blood flow was restricted to the kidneys, causing them to turn off. This is not a permanent condition and there is a 99% probability that his kidneys will recover fully.

Rhonda and Grandpa Chip are returning to Mpls this evening. We continue to wait. It could be several days before the kidneys return to normal. Since we are back in the ICU Carson is once again listed as status 1.

Carson is resting comfortably right now and they expect to take him off the vent shortly (if you are keeping track, this is the fourth time he has been vented).

Here is (again) hoping for a quiet night and a foley tube full of pee.

Daddy

Sunday, December 09, 2001 at 01:53 PM (CST)

Wow! What a fun weekend! We are so thankful for the gift of friends! Where would we be without all of you?!?!?

Yesterday afternoon we were surprised with visitors from Fargo-Moorhead! Jamin & Tanya Tauer and Dana Cossette and company travelled here to bring us a whole lot of cheer (complete with Christmas goodies, a tree, chocolate, fuzzy blanket for Carson that Mommy has already used, snacks, holiday bib, snowman bear and a musical toy for Carson)! Megan Tauer is 4 and is on the liver tx list here at Fairview. She is such a doll and is doing very well. Brandon Cossette is 7 (I think...maybe 8--sorry Brandon if I got this wrong!) and had a transplant 2 years ago in Madison, WI and looks great. He likes his picture taken, right Brandon? We visited lots and they took us to Planet Hollywood for supper. YUM! It felt great to talk to folks who know what we're going through. THANK YOU SO MUCH FOR THE VISIT!

Then, we returned to have a great visit with good friends Joel and Jody Maanum. Lacee and Jaden kept us company too. They brought Carson reindeer slippers and the Mark Schultz CD with the song "He's My Son". We all cried as we listened to the song. (the lyrics are on page two of Carson's link below...incredible song.) It was great to see all of you too, as it always is.

Carson gained a lot of weight in the night...not good. Big belly again. So, more albumin with lasix chasers to get him trimmed down again. His temp seems to be bopping around too. Little stinker!

We have learned that he doesn't have a blood infection...due to some confusion. Long story. Anyway, it does seem the antibiotics he's on are working, so that's what counts. We know it's an infection, just don't know where exactly. (just a note, this is common not to know exactly where an infection is!)

Looks like I might be heading back to Fargo-Moorhead tomorrow! We did some talking this morning and one of us would like to get back to check on things before the big day. So, I will ride back with my dad tomorrow and come back here with Trav's folks on Tuesday. That's the preliminary plan for now. I really need to see my chiropractor!!!!!

That's all for now. Thanks for all of your love and prayers!

Love, Mommy

P.S. Check out the added pics under his photo link below!

Friday, December 07, 2001 at 04:46 PM (CST)

It's been a fairly quiet day. We like those! Carson's temp continues to drop. YAH! Maybe we can get rid of the cool washcloth off of the top of his head soon. (He really seems to like it though.)

His NG tube has been causing problems so we are waiting to go and get an NJ placed. Not fun...Carson hates being tied down. Who can blame him. We get into a radiology room and he sees big white machines and he starts to cry. Poor guy.

Travis and I went Christmas shopping last night. It was fun! We hit Target, Toys R Us and Babies R Us. We'll own stock in batteries after this! :-)

Uncle Chris moves to Stevens Point, WI tomorrow. He'll still be here every now and then. That's good...Carson loves to grab his glasses. Oh, and we like to see him too!

Hopefully it will be a quiet weekend. Maybe we can get some good naps in. Will update tomorrow.

Love, Mommy

Thursday, December 06, 2001 at 06:38 PM (CST)

It's been somewhat of a busy day...

Carson had a CT scan this morning to check his adrenal glands. They were a bit enlarged previously and they wanted to re-check. They are still enlarged, about the same as last time. They think it is from the stress his body is under, but they are running more tests. Hopefully all will be okay! We really don't need something else to worry about.

Carson had a port clot on his Hickman, so we got the roto-rooter job done on it tonight (at least that's what I call it!). It worked. Sounds like we will get a new Hickman soon, since this one has been nothing but trouble!

Fever is down...runs around 100. Still is warm, but not too bad.

The lasix did the trick and his abdominal girth dropped 3 cm in 12 hours! Mr. Slim! At least he can sit up a little easier and breathe better now.

Sounds like at least another week of antibiotics and then a few days to see if he will grow anymore or not. (Very unlikely he will grow in the next week or so if he is fighting an infection.) So, I think the earliest we would be scheduled is 2-3 weeks from now. Who knows?!?!?

I went to the liver tx Holiday party today--it was so fun! Daddy was sleeping, so he missed it. It was great to get some real food and see so many success stories! Can't wait for the picnic next summer. We will be chasing Carson around, trying to keep up with him, I hope!

We are going to try to sneak away to go Christmas shopping for Carson tonight...Papa Chip will stay with Carson. Hopefully they won't get into too much trouble!

Sorry the updates have been so late in the day. Trav has nights and I have days so it's hard to get down here. Thank you for being patient!

God Bless! Love, Mommy

Wednesday, December 05, 2001 at 12:55 PM (CST)

Even though today was not THE day, it has been busy thus far.

So far:

*Carson's NJ tube got plugged and subsequently pulled. An NG (into the stomach) was put in instead.

*The NG will be used for meds only. No more special formula.

*We found out Carson has a blood infection. Scary but now we know what we are dealing with and it can be treated appropriately.

*His TPN (total parental nutrition) will be boosted to make up for discontinuing the special formula, which is tough on a body when there is an infection issue. Rhonda will continue to nurse of course.

It was a pretty unhappy morning for Carson with all the tubes going in and out of his nose. He has been much happier since he got a chance to nurse from Mommy.

With new info hitting us almost every day I am reminded of some lyrics John Lennon wrote in a song dedicated to his son: "Life is what happens to you when you're busy making other plans." How true...how true. What will tomorrow bring?

Here's hoping the rest of the day will be quiet.

There are new pictures on the link below...in the October 2001, Children's and Fairview albums. Enjoy!
Daddy

Monday, December 03, 2001 at 05:30 PM (CST)

Well, Wednesday is off. Since Carson has a fever, the team decided it's too big of a risk to head into tx with the fever. They are still working to isolate the source, but they are going to pump him full of antibiotics to try to get rid of the source of infection. He has has so many things done to him in the past 6 weeks that it's not uncommon for this to happen apparently. It's still so hard. If he is tx'ed with an infection, it would likely blow up into a very big problem, so this is the safe thing to do.

Once again, the waiting continues. I pray that the Lord continues to carry us through this time of waiting.

Love, Mommy

Monday, December 03, 2001 at 05:09 PM (CST)

Still no news...the waiting continues. We hope we hear from the tx team yet tonight!!!

On a very positive note, Carson's temp is dropping. It's around 100, but at least it's dropping.

We will update as soon as we know something!

Love, Mommy

Monday, December 03, 2001 at 09:38 AM (CST)

Oh boy! Wild few days...Carson has his days and nights completely mixed up and no drug so far seems to make him sleepy at night! Hate to keep him up during the day right now just to get him to sleep at night, because he needs his rest so much.

Our big worry is his temp. It's up to 102 this morning. So, cool cloths on his head and soon I will put them in his diaper. They are testing everything they can (they tapped his abdomen yesterday to test his ascites fluid and this morning they are doing a blood culture) to try to figure out if there is an infection. We CAN NOT head into the OR Wednesday if he has an infection. So, we pray that an answer is found soon! At first we thought it was a temp from teething, but now we're not so sure!

So, I have to get back to his room. Will update as soon as we can!

Love, Mommy

Saturday, December 01, 2001 at 03:40 PM (CST)

Carson has had a tough day...he is pretty miserable. We're trying a new sedative to get him some rest. It seems our little guy has built up a tolerance! Great--a junkie! Just kidding.

The GI doc and tx surgeon were both in this morning...they are meeting on Monday to decide about our big day. I just feel so strongly in my heart that Carson will get his new gift of life on Wednesday. I am just so thankful that God is allowing me to be a part of providing him life twice! Not many Moms get to do that!!!!

We continue to hear so many stories of praying and giving and sharing for Carson. Each time we hear one we are brought to tears. From a class in Minitonas, Manitoba that had a hot dog sale for Carson to my cousin, Renae, raising funds at Scheels in Fargo to the Grandma that left a message in Carson's guestbook last night. You are all such incredible people!

God Bless,
Mommy and Daddy

Friday, November 30, 2001 at 01:51 PM (CST)

Busy day!

CV Radiology was able to unclot Carson's good Hickman port--wonderful! He will get a new Hickman soon, but at least it can hold off a bit.

My workup went well. I asked the tx surgeon LOTS of questions. He was honest about the possible complications. #1 is Carson's size, or rather lack of it. It is also very likely that even when Carson is out of tx he will have to go back into the OR several times after that in the following days. It's very common for tx, so don't be too alarmed if you see a posting that he is back in surgery.

I go back in on Tuesday for some typing and crossmatching. We may know as early as Monday if we are going for it on Wednesday. The good news is that Carson is stable enough now, we could wait. It is likely the only way we will wait is if he starts to pack it on and shows signs of growth. Then we have the hope of getting him a little bigger. However, if Wednesday were cancelled and a few weeks from now he starts to slip, they would book an OR immediately.

We had another awesome visit from a liver tx family--Parker had a tx six weeks ago. He was discharged after 11 days! He looks fabulous! What a bundle of energy! Another story that gives us so much HOPE!

Also, thanks to Carson's liver buddy, Marisa. She brought us a delicious supper last night!!! It was great to meet your mom too!

Well, gotta run! Will update tomorrow!

Love, Mommy

Thursday, November 29, 2001 at 03:58 PM (CST)

Daddy got to come and see Carson today! He was so excited. Carson was confused because of the mask, but we aren't taking any chances.

The hickman saga continues...the "good" port clotted in the night so we are using the repaired port from yesterday to give him his lipids and TPN. We're hoping it functions until next Wednesday.

We celebrated Carson's 7 month birthday yesterday with "Birthday Bananas". He hated them and we switched to applesauce after 4 bites and all of the banana baby food ending up on me! Still loves his applesauce!

Some Minnesota Vikings were by to see Carson (and all the other kids too). He was sleeping, so we didn't take his picture. He did get a signed pennant. Don't ask me who they were--didn't recognize them. They were big though!!! :-)

It is very likely we will not know if the tx is a "go" or a "no" until Tuesday. They want to hold on until the last minute to see what Carson plans on doing.

His weight was down today, which completely freaked me out. However, after realizing that he is on some new diuretics, he is actually losing some of his ascites fluid. So, we may be seeing a truer picture of what his weight really is. Docs were pleased about it, so I guess I need to be too! Nothing like a little morning stress to get the blood pressure going!

An update on our buddy, Munchie. He is doing okay...had to go back into the OR to stop some bleeding. He is stable today. I talked to his mom last night and it sounds like he is holding his own. He, like Carson will soon, will have a long recovery road ahead of him.

Had some visitors today--Amy and Carly. Thank you for stopping by. Carly is a bundle of energy and I can't wait to see Carson bouncing off of the walls like that. It was so fun to meet both of you!!!

I'm going to run. Thanks for all of continued love and prayers.

Love, Mommy

Wednesday, November 28, 2001 at 07:00 PM (CST)

I'm FINALLY able to update...

Travis is feeling better. YAH! Still keeping him away just to be safe. Maybe he can see Carson tomorrow if he gowns and masks up. We'll see.

One of Carson's ports on his Hickman clotted up in the night. :-( Went to CV radiology to "liquid plumber" it this afternoon. When they were trying to flush it, the tubing blew apart. What an ordeal. So, they cut the port off and basically glued one back on. A temporary fix and he will now need a new Hickman sooner than later. :-( Hopefully it can hold on one more week. I got to watch the whole thing and it was very interesting. No plans to change careers, but it was still interesting!

It's official...Carson is gaining weight!!!!! All of those calories are finally going to his legs, thighs, face and arms. Yippee! Tx team is still debating on next week. He should be 7 kg by next Wednesday, if he continues his current trend. So, lots bigger than the 5.6 we were admitted here with almost 2 weeks ago. Anyway, the tx surgeons think it might be best to tx while he is "healthy". If they wait to get him to 10 kg, that could take 5-7 weeks and it's hard to say if he will keep gaining at this rate. So, the waiting continues.

I will finish my workup on Friday--EKG, physical and a fasting check of my cholesterol. Glad I've cut back on my french toast every morning.

We are still taken back with the outpouring of support for Carson from so many people and places. When we see people sign the guestbook that don't know us, but yet are praying for Carson, well, it's just incredible. This boy already has an amazing story to tell and we think he is so special. It's an awesome feeling to know that so many others share this feeling with us! God Bless each of you!

Gotta run! Love, Mommy

Tuesday, November 27, 2001 at 07:14 PM (CST)

Quiet day. Daddy is feeling a little better, but will be away from hospital for a bit yet.

We're out on a red wagon ride! Papa Chip is pushing the IV pole and I have the wagon. Lots of fun and Carson loves to flirt with everyone (especially blondes...should I be worried?)

'Til tomorrow!

Love, Mommy

Monday, November 26, 2001 at 10:41 PM (CST)

Well, prayers are needed for another member of the Kitch family...Travis has the flu! He is back at the Ronald McDonald House and is so sick. He is so scared that Carson will have gotten the bugs too. So far, we're in the clear! I guess after 5+ weeks in the hospital, one of us was bound to get something. So, we hope it's the 12 or 24 hour variety!

So, Papa Chip arrived just in time! He is staying at the hospital with Carson and me tonight. He lets Carson grab his glasses from his face over and over...Carson just loves it. Carson did that with Uncle Chris' glasses on Sunday too. Both Carson and Chris were laughing!

Our thoughts are with Munchie (aka Anthony Padila-Purnell). He is a sweet little boy from Florida who also has Biliary Atresia. He is 6 months old. He and Carson have such similar stories. His family got the call at 10:20 this morning that a liver was ready for him. We are praying and praying that the transplant is a success and that Munchie will be back home soon. We're thinking of you, Katie and Gabe!

We've added another link below...still some kinks to work out, but it's a start!

Love to all! Time for bed. Mommy

Monday, November 26, 2001 at 12:00 PM (CST)

Quite the day. Carson is starting to get the concept of sleeping at night back...he and daddy were only up from 3 am - 6 am last night (with a couple of small snack breaks before that).

Our big news is that Carson MIGHT be gaining some weight. He has added a little bit in the last few days...to early to tell if we are on an actual increase, or if it's fluid. But we are crossing our fingers. If he continues to gain, the tx on December 5th will be postponed until he is bigger. He is 6.4 kg this morning and they would like him 10. So, we would shoot for however fat we can get him before his liver starts really going downhill. It's obviously very damaged, but maybe it can hang on a little longer.

This kid is going to have therapy to get over his oral fixation later in life. Almost every time he opens it there is some form of food going into it!!! He LOVES applesauce. :-)

So, the surgeon and GI docs continue to tell us to wait and see. Nothing new!

We are so overwhelmed by all of the support we are feeling--from family, friends, and now the media has really picked up on Carson's story. WOW! It's incredible. Thank you so much. Each time there is something new in the guestbook, tears fall!

Papa Chip is going to be here in an hour or so. We're getting some snow here, and there is a possibility that we will be getting dumped on later today. Carson's first snow. Maybe we will sneak him out to make snow angels!

We're going for a wagon ride soon. Nice to have a change of scenery. Love to all.

God Bless, Mommy

Sunday, November 25, 2001 at 10:59 AM (CST)

It's been a quiet weekend. Carson seems to have his days and nights mixed up though. He was up until 2:30 AM last night and 4 AM the night before. Daddy is pretty tired! So, we're trying to get Carson a better sense of day and night by keeping the room light on during the day, even if he is napping. :-)

He ate some rice cereal with applesauce this morning and loved it. He had been starting to refuse the rice cereal, even though he was hungry. Guess we needed to sweeten it up a little bit.

Still waiting to see if he will put on any weight. Not much of a change since we got to Fairview almost a week and a half ago. So hard to tell if any gain is from ascites or not.

His abdominal girth has been really fluctuating. Yesterday morning it was 44 cm, last night 45 and this morning 47 1/2. As long as it doesn't hit 50 again. He is so uncomfortable then.

Papa Chip will be in town tomorrow--he can't wait! Neither can we!

I am getting lots of rest at the Ronald McDonald House each night...I feel like Sleeping Beauty getting 6 hours of sleep! I want to be in tip-top shape to give Carson a very healthy liver.

I have been working on the photo link and have added a bunch of snapshots of Carson to it. Enjoy our sweetie!

That's all for now!

Love, Mommy

Friday, November 23, 2001 at 05:47 PM (CST)

Sorry we have not updated in awhile but things have been kind of slow...which is actually fine with us. Carson had a CT scan yesterday and a new NJ tube put in today. The CT scan is routine just to see how things are looking liver wise and the new tube was needed to make feeds and meds go down easier.

Carson's second Thanksgiving (his first was Canadian Thanksgiving in October) was not how we envisioned it but was nontheless pleasant. A very generous family cooked 6 turkeys and the fixings for the Ronald McDonald House families. So Rhonda, Nana, Pop Pop, Uncles Ian and Chris, and myself pretty much gorged ourselves. Probably our best meal since we got to Mpls.

We were hoping to meet with the tx team today but have not seen them yet. We know December 5 will probably be the day but we are anxious for more details as to the procedures.

As usual we sit and wait...wait and sit. Nana, Pop Pop, and Uncle Ian left for Swan River this morning. Uncle Chris is still hanging around and Grandpa Chip should be here on Monday. Its nice to have family around for support and to help pass the time.

We have decided that I will be staying the nights with Carson and bottle feeding him. Rhonda is exhausted and will be staying at the Ronald McDonald House from now on. We cannot afford for her to get run down and sick.

That's all for now.

Daddy

Wednesday, November 21, 2001 at 10:53 AM (CST)

Wow! Another awesome day! We just got moved off of PICU and to a children's floor--first time in 3+ weeks that we're not on ICU (and in the past 4 weeks we've only spent 2 nights off of a PICU). So, BIG day.

Carson has a great room. It's very spacious and there is even a chair/bed that I can sleep in. I've been on a loveseat in the family lounge the past few nights, so it will be great to bunk with Carson again.

GI was just in and said the big goal for Mr. Carson is to GROW. He is napping now but more rice cereal when he wakes up! We are starting to think Carson might have a dairy allergy as well. The tube feedings he has been getting has been breastmilk. Recently they upped it to 24 calories/ounce with some formula (breast milk is typically 20 calories an ounce). Carson did not tolerate the Pregestimil or Enfamil supplements, so now they are trying Isomil (soy) and he seems to be doing okay. A little gassy, but not bad. The allergy can be common in BA kids, from what we've heard. It could also be a hereditary thing. Uncle Ian has lots of allergies and the Horob side has some dairy intolerance as well. We hope it's not the sensitive "Horob" tummy!!! Oh no!!! :-)

We may try to sneak some turkey, mashed potatoes and gravy in to Carson tomorrow. Just kidding. Maybe he needs some of my Grandma Brager's good home cooking. EVERYTHING she makes is delicious and with cream!

So, we're getting settled in nicely. We're going to celebrate turkey day tomorrow at the Ronald McDonald house. We have LOTS to be thankful for...Carson...modern medicine...wonderful doctors, nurses and caregivers at Children's and Fairview and back in Fargo...family...friends...and much, much more. Hope all of you have a great Thanksgiving as well. God Bless!

Love, Mommy

Tuesday, November 20, 2001 at 03:43 PM (CST)

Woo-hoo! What a great day! Carson did very well with the OR procedures this morning and now he has a new piece of "flare" (this is what we are calling all of his accessories...watch "Office Space" to see exactly what we're talking about!) The Hickman is in and working. His central line is out. He has a new NJ--they decided to switch it to the other nostril just to ward off any potential sinus problems. During the scope they did detect Grade 1 varices and some stomach irritation, but they are not worried at all at this point--some are to be expected with liver failure. The docs are pleased that they are as mild as they are.

So, we were very relieved that all went well. We got to see him right away in recovery and he was hungry! It was so good to feed him again, since he was NPO since 2 am.

Our other BIG excitement of the day was that Carson just had an echo. They expected there to be a little fluid around the heart, but likely not enough to warrent placing the tube back (that was lost on Sunday). Well, there is NO fluid--it's dry! Better yet!!!!! We were thrilled.

Carson is sleeping now. He looks so peaceful. When he wakes up it's bath time. Then I'm sure he will be hungry again. :-) More rice cereal is on the menu for later tonight.

Nana, Pop-Pop and Uncle Ian arrived about the time Carson was heading to the recovery room. Uncle says Carson has grown a lot (since May)! We're so glad you're all here. Uncle Chris arrives back tomorrow and we will all have a big turkey dinner at the Ronald McDonald House on Thursday. A family is bringing it in. The kindness of strangers is so incredible.

Well, I want to get back to our cutie pie.

Love, Mommy

Monday, November 19, 2001 at 08:09 PM (CST)

Today was pretty quiet for all of us, which was nice! Carson rested a lot on his own today. The fewer drug-induced naps the better!

His chest x-ray this morning showed that his heart is a little bit bigger than yesterday so we will be doing an echo to check it out. The concern is that fluid is beginning to reaccumulate around the heart requiring another drainage tube. Hopefully it will not come to that. It will be something they will continue to watch.

Tomorrow morning will be hectic. Carson is scheduled for the insertion of a Hickman line into his neck and chest. This is a permanent IV line that he will have for many months to come. The doctors here just pulled a Hickman from a person who had it for 15 years! They will also scope Carson to check for varices. These procedures are relatively minor yet it is O.R. stop number 4. (Still all on Tuesdays, mind you!)

Dr. Humar (our main transplant surgeon) dropped by today and said that if a matching child's liver came in tomorrow, we would do the tx. They would like him to be bigger for the live donor tx from me, so the next week is pretty important to see if Carson grows!

Speaking of growing, he had his third try at rice cereal today. He has done well each time and took 2 ounces of cereal today. He grabs the spoon and really does a great job of getting it all over his face (but most of it ends up in his tummy). He knew he was being silly tonight as he kept laughing while he was eating. What spirit!

Nana, Pop-Pop, and Uncle Ian are on the road from Swan River as I write this. They will be here tomorrow afternoon. :-)

My weekend project was adding many of Carson's digital photos to the web. Below you will see the new link. Hopefully I can add some of our many snapshots soon as well. It's fun to see how he has grown and changed but he is still our little Carson.

Well, that's all for today. We can't wait to see the video from the news last night. Sounds like our little guy was quite the star! What's new? :-)

Love, Mommy

Sunday, November 18, 2001 at 04:47 PM (CST)

I know I've said it before, but what a day.

The morning started off with Carson's chest tube popping out on its own. With his abdominal drainage holes healed up and no longer draining everyone was concerned if even more fluid would build up in Carson's body. The hole where the chest tube was continues to drain, which is good.

Carson's increased irritability was also a concern. In people experiencing liver failure toxins begin to build up in the body, ammonia being one of them. This was scary as ammonia can cause what is called hepatic encephalopathy, or swelling of the brain. Crap, yet another organ to worry about.

Fortunately, our day was to improve. An echocardiogram was done and it showed that there was no fluid around the heart, even without the chest tube. They will continue to monitor the heart but initial test show we may (and I stress MAY) be free and clear with the heart. It seems that Carson knew it was time for that chest (pericardial) tube to come out. Gave us quite the scare, but it seems that all is fine now. Ironically that was one of the big questions for pre-transplant: How to get the tube out and not have it effect his heart negatively. Guess that is one that Carson answered for all!!!!!

We were also visited by a nuerologist regarding the hepatic encephalopathy. He said that Carson looked great and that his crying, good eye movement, body movement, and general good grasp of his environment indicated that there were no neurological problems with him. They checked his ammonia levels and they were fine. Severe hepatic encephalopathy can result in coma, so you can understand why we were scared.

Sooooooooooooooooooooo...nothing has really changed other than having one less tube in Carson. If fluid does reaccumulate then they will go in and put another one in. Another near-future procedure will be to put in a more permanent port (a hickman) into Carson. The central line in his neck is not designed for long-term use and is succeptable to infection if left in too long. He will have this new port for easy blood draws and medication injections and will have it long after being transplanted.

They now have Carson on all the medications he can possibly be on to at least keep his liver stable. He is on TPN (total parental nutrition) and IV lipids to help fatten him up.

Right now both Carson and Rhonda are relaxed enough to sleep. Let's hope their nap lasts a little bit longer.

Now that my blood pressure has returned to normal I will sign off.

Daddy

P.S. Congratulations to great friends Kim, Bill, and Kari on the birth of a baby girl. You were right Kari, you have a sister!

Saturday, November 17, 2001 at 10:17 PM (CST)

Yesterday was Carson's best day post heart surgery. Today, however, he was pretty cranky. Those darn teeth still have not come though. Poor guy! Hopefully soon.

His abdomen is also growing. The site that was drained on Monday stopped oozing last night and his abdomen is up 5 cm since then. So, we'll have to see what they do about that either through the night or tomorrow. He looks so uncomfortable.

The big excitement of the day was that Carson ate his first cereal!!! Good ol' rice cereal. He did very well, actually and most of it ended up in his tummy. He was pretty insistant that he help guide the spoon into his mouth, which was really cute. This is all a part of our "bulk up Carson program". If he tolerates cereals well, we wil maybe move on to fruit and veggies soon. Travis thinks we should just put a steak in the crib with him. :-) Might feel good on those gums!

The TV crew from Channel 4 KXJB in Fargo was awesome. Wonderful women! The segment will likely air tomorrow night (Sunday) at the 10 pm broadcast. We are excited to get the word out about organ donation. Thanks to Channel 4 for letting us spread the news!

I'm positive Carson's bili will shoot up tomorrow...he has that pumpkin glow again. Now that he's not draining as much, the bili builds up more. Quite the cycle.

Well, it's time for bed. Will chat more tomorrow!

Love, Mommy, Daddy and Carson Noah

Friday, November 16, 2001 at 02:55 PM (CST)

Another day brings more news. Two surgeons have come in today and they both expressed that they want Carson bigger before a tx; at least 10 kg if possible. He is 5.6 kg right now. The key is to keep his liver stable and working relatively well so he can grow. His bilirubin has dropped to 16.6 (amazingly) and his other liver numbers are relatively stable. The bilirubin drop may be an artificial drop as he is draining fluid (and bili) from three holes. Its yet another "wait and see" thing.

We will be meeting with a nutritionist to see what strategies we can employ to beef Carson up. We may try introducing solid foods.

In about an hour the news crew from Channel 4 in Fargo will be here to shoot a piece on Carson and to promote the importance of organ/tissue donation. He is fussing now. We are hoping he is saving up his smiles for the camera. We were told the piece would air Sunday evening, but we're not sure. Keep a lookout Fargo/Moorhead folks!

So, as usual, we wait. There is some speculation that is Carson's liver stabilizes we could go home and get him bigger there. We are not too optimistic about that. Otherwise, we could be here even longer than expected IF his liver holds up long enough to get him closer to the 10 kg mark. Hitting the 10 kg mark really decreases the risk of complications and increases the chance of success. Needless to say we will do whatever it takes.

December 5 is still tentively scheduled for Rhonda being a live donor. We are not sure what would happen if a matching cadaveric liver came in. "Wait and see."

Off to get Carson ready for lights, camera, action.

Daddy

Thursday, November 15, 2001 at 04:37 PM (CST)

Whew! What a day.

Well, as scheduled, we left the hallowed halls of the Children's Hospital PICU promptly at 9am. There were tears shed as we said goodbye to some of the nurses who have been taking such wonderful care of Carson. We had to promise to bring him back after the tx to show him off. It is impossible to express in words the gratitude we feel towards Mpls Children's hospital for all they have done for Carson so I will not even try.

Rhonda rode with Carson in the ambulance over to Fairview and I followed (not quite at the legally posted speed limit) in our car.

Our transition here has been phenomenal! Our new nurse Katie got us set up in Carson's room, got us in touch with a chaplain, physical and occupational therapists, a lactation consultant for Rhonda, and has basically kept us from getting lost. Thanks Katie!

Several docs have been by to see Carson. We answered many questions regarding Carson's history. He has already won over many hearts with his smile that just won't go away! He had an ultrasound earlier and more bloodwork. What else is new!?!?!?!

Rhonda still needs to get an EKG to help finalize her status as a donor. We are optimistic.

We got checked into the Ronald McDonald house just two blocks away from the hospital. An incredible place with lots to offer. Thanks Paula for setting us up. I, however, can still not bring myself to eat McDonald's food, although I will collect pop tops to support the House.

Grammy Ruthie pulled safely into town earlier. Thanks for bringing the rest of Carson's breastmilk from Fargo. Marisa McFate is visiting Carson right now. Marisa is Carson's kindred spirit (biliary atresia and liver tx) and is an absolutely wonderful person. We love you lots Marisa!

Other people to thank are Jody M. who is heading up the overall fundraising campaign and Rhonda K. (no, no, no...the OTHER Rhonda K.) who is heading things on the Swan River, MB end. If I left anyone out I apologize. Thanks all.

I'm sure there is more but my mind is spinning! There is a parent's computer one door down from Carson's room so updates will come fast and furious.

From the bottom of our hearts, thank you.

Mommy, Daddy, and Carson

Wednesday, November 14, 2001 at 12:04 PM (CST)

Quite the day. The care conference this morning went very well...Carson's cardiologist, cardiac surgeon, and GI docs from Children's were there. Fairview brought Dr. Humar (tx surgeon) and Dr. Sharpe (GI doc). Carson's nurse and a chaplain were also with us. We were in a room with very brilliant people!

We mainly discussed Carson's cardiac and liver functions and what concerns and risks there are. Carson will have some more testing to go through once we get to Fairview to check more things out.

The options are to get a small child cadaver liver (pretty unlikely in the next few weeks), a small-adult cadaver liver that they could split or to take 25% of my liver. To use my liver is the last option, as even though I'm not big, 25% of my liver is still big for Carson. So, it is with much relief that we know Carson will get a new liver. The date is set for the transplant between Carson and myself...Wednesday, December 5th. Three weeks from today!!! If another suitable liver comes up before then, he will obviously be transplanted.

It's been an emotional morning, but we feel very optimistic.

We will be transferred to Fairview University Hospital tomorrow morning and get settled in their PICU. More docs and nurses to meet! Our goal is to have the chest tube stop draining so we can remove it before tx. We also want to get Carson at his best before tx with nutrition and overall function. He will be 6 weeks out from heart surgery at the time, so that is a plus too (cardiac surgeon had said we would need a minimum of 2 weeks, so 6 feels much better).

Grammy Ruthie is making another trip down tomorrow to spend a few days. Papa Chip will be here in about a week and a half. Nana, Papa and Uncle Ian are also planning a trip soon too. Can't wait to see everyone!

Travis and I went to an NHL Minnesota Wild hockey game last night; tickets were donated to the PICU to use as they saw fit. They thought of us! It was a good time. We only stayed to the end of the second period though because we wanted to get back to Carson. The Wild still won. :-)

We are sad to leave Children's; we have met so many wonderful people here--doctors, nurses and other parents. They have given Carson so much love and care. That has meant so much to us.

Soon we will be posting information about some fundraising efforts that are underway for Carson. We are overwhelmed with the outpouring of support to help us out and our very close friend Jody Maanum is leading the charge. THANK YOU, JODY! We are so fortunate to have such wonderful family and friends.

We also hope to have another web page for Carson soon, one that will link off of this one to another page with more pictures. We are currently limited to posting only 3 at a time and we have so many to share. Will keep you posted!

Well, I need to eat! As my tears hit the keyboard I am reminded of all of the love and support from everyone and am so thankful for God's love as he as helped us through this journey. God Bless!

Love, Mommy (and Daddy and Carson too!)

4:21 pm: new update--just found out we will be transferred at 9 am tomorrow. Probably won't get to post tomorrow. We WILL have computer access at Fairview. Might be a block or two from the hospital, but that's okay! Mommy

Monday, November 12, 2001 at 04:25 PM (CST)

What a day! Dr. Ferenci had a busy morning with us. He made a several calls and a tx surgeon and GI doc from Fairview are coming on Wednesday morning at 9 for a care conference and to evaluate Carson. It sounds very likely like Carson will be at Status 1 after that point, or shortly after. He thinks we will also be transferred to Fairview at about that point. We will know lots more on Wednesday.

He also ordered that his ascites (the fluid in his abdomen) be drained to make Carson a little more comfortable. It just happened about an hour ago. His abdominal girth went from 50 cm to 43!!!! The surgeon drained off about 600-700 cc's (hard to measure what got in the sheets, etc.) That's about 20+ ounces. I couldn't believe it. As soon as it was done Carson was all smiles. :-) Hopefully the fluid doesn't reaccumulate too quickly.

Dr. Baker, our cardiologist, also checked on Carson. Another echo of the heart and all looks great...cardiac status is "excellent". Woo-hoo! As my husband says "One less organ to worry about!"

My workup at Fairview went well on Friday. Will know results of the CT later today or tomorrow. I pray that I am a donor for Carson. My bloodwork looks good except my cholesterol is a little high (the tx coordinator asked my husband what types of food we have been eating the last 3 weeks--perhaps fast food. She was laughing, of course!) Doesn't sound like they're worried...if we do a fasting check, it will probably be fine. So, I skipped the mayo on my Sub today! LOL! :-)

Well, I'm heading back down for more snuggles. Will try to update tomorrow.

Love, Mommy

Tuesday, November 13 Update:
Thanks to the generosity of a family that once spent many days in the PICU Rhonda and I will be attending a Minnesota Wild hockey game this evening.
There is a new picture of Carson in the photo album.

Daddy

Monday, November 12, 2001 at 04:25 PM (CST)

What a day! Dr. Ferenci had a busy morning with us. He made a several calls and a tx surgeon and GI doc from Fairview are coming on Wednesday morning at 9 for a care conference and to evaluate Carson. It sounds very likely like Carson will be at Status 1 after that point, or shortly after. He thinks we will also be transferred to Fairview at about that point. We will know lots more on Wednesday.

He also ordered that his ascites (the fluid in his abdomen) be drained to make Carson a little more comfortable. It just happened about an hour ago. His abdominal girth went from 50 cm to 43!!!! The surgeon drained off about 600-700 cc's (hard to measure what got in the sheets, etc.) That's about 20+ ounces. I couldn't believe it. As soon as it was done Carson was all smiles. :-) Hopefully the fluid doesn't reaccumulate too quickly.

Dr. Baker, our cardiologist, also checked on Carson. Another echo of the heart and all looks great...cardiac status is "excellent". Woo-hoo! As Travis says "One less organ to worry about!"

My workup at Fairview went well on Friday. Will know results of the CT later today or tomorrow. I pray that I am a donor for Carson. My bloodwork looks good except my cholesterol is a little high (the tx coordinator asked Travis what types of food we have been eating the last 3 weeks--perhaps fast food. She was laughing, of course!) Doesn't sound like they're worried...if we do a fasting check, it will probably be fine. So, I skipped the mayo on my Sub today! LOL! :-)

Well, I'm heading back down for more snuggles. Will try to update tomorrow.

Love, Mommy

Sunday, November 11, 2001 at 04:51 PM (CST)

Well, where to begin...?

To make a long story short we will not be going home until Carson gets a new liver. This comes as both a shock and a relief to us. We were hoping to get discharged and spend some time at home and have Carson older and bigger before the tx. On the other hand his liver disease is not getting any better and a tx is inevitable, so why not sooner than later.

The next couple of days will prove to be busy. We expect visits from many doctors, both from Children's Hospital and the University. Our immediate goals are to get a definitive status for Carson and also to find out if Rhonda will be a donor match.

Also in question is the status of Carson's chest tube. It continues to drain and the next option may be to put a smaller drain in his abdomen. If that works they will be able to take out the chest tube.

Due to the liver disease Carson's belly is getting bigger. He is beginning to breathe with more shallow breaths and is only snacking when he eats. There is a lot of pressure on his diaphragm and stomach, which makes breathing and eating very tiring. Needless to say he sleeps a lot.

His bilirubin is in the mid 30s yet he continues to poop yellow. With the tx coming sooner than later we have decided not to pay too much attention to liver numbers or poops.

Carson has treated us to several smiles and is playing with his toys again. We know that this is his way of saying, "I will be OK."

The next time many of you see Carson he will have a new liver. Thanks for all of your thoughts and prayers.

Mommy, Daddy, & Carson

Friday, November 09, 2001 at 12:12 PM (CST)

Some good news, some troubling news...as usual. Carson's total bilirubin went down a few points and his direct bilirubin (the number that indicates that the liver is stressed) dropped by around 5. That's good.

Carson had a so-so night. He fussed for over an hour. The good news on that front is that the nurses were nice enough to wheel in a chair/bed. Now Rhonda sleeps in the PICU room with Carson. Much easier for nursing.

His potassium, sodium, hemoglobin, and albumin levels continue to fluctuate and they suppliment him when necessary.

The chest tube has stopped draining blood but the serous fluid continues. Mommy and Daddy are interpreting that as a good sign. Even the serous fluid (from his belly) is beginning to slow down a bit. Overman (the surgeon) is contemplating how to correct the communication between the chest and the belly "sometime next week".

A test did come back positive for blood in Carson's stool. There cannot be very much as no blood is visible in the diapers. Dr. Baker (cardiologist) thinks it may be the result of some irritation from the NJ tube. This small loss of blood may be an explanation for why Carson's hemoglobin levels plummeted yesterday. Dr. Baker will ultimately leave this up the Dr. Kennedy (one of Ferenci's GI partners and a very nice lady indeed). If that is not the case it is scary to think of what else it could be.

So the waiting continues. Carson is still sleeping and eating well, which is excellent.

They took alot of blood from Carson through the night. The U of MN. needs alot of labs to begin the transplant procedure.

Today is the day Rhonda begins testing for being a live donor for Carson. It sounds as if they will take alot of blood from Rhonda as well. Wish her luck.

It is appropriate that I end this update on a positive note. Dr. Baker wrote a letter to the U of MN. informing them about Carson from a cardiac standpoint. His words on the letter were, "cardiac status is excellent". Dealing with the liver disease is scary now but just a few weeks ago we had a baby boy with liver disease and a hole in his heart. At least that is over with now.

Daddy

Thursday, November 08, 2001 at 11:44 AM (CST)

Carson had another good night. His appetite is returning and so is Rhonda's need to get up every couple of hours to feed him.

On a sour note his bilirubin went up a little since yesterday: total of 28, direct of 23. He was a canary yellow for awhile and is now back a little bit to his pumpkin orange.

Fluid is still draining from his tube but does not appear to be draining from around his tube as his gauze is still dry. Does this mean things are starting to dry up...? The surgeon is still planning the surgical procedure to block off the chest cavity from the belly.

On a positive note his hemoglobin is up without any help from the doctors. All we can do now is make sure Carson gets good sleep and good nutrition (which is what everybody needs). This will help the healing process.

Both Carson and Rhonda are sleeping now. Carson is sleeping without the aid of narcotics!

This is going to be a sleepy day.

Daddy

Wednesday, November 07, 2001 at 10:46 AM (CST)

Carson had another good night. Rhonda got to snuggle with him from 2am on.

His bilirubin stayed at 25 overnight. That is good; it did not rise. His albumin (a liver protein) and potassium levels continue to jump around. Fortunately these are items they can give him through the IV whenever he needs them.

Carson's chest tube continues to drain. They will leave him be for a week or so and if the drainage continues they will do a minor surgical procedure to hopefully stop it. The problem is that his abdominal fluid is draining up to his chest and then draining out the tube. The surgical procedure, if they need to do, will block off the abdominal cavity from the chest cavity. It is actually a good thing that the drainage continues because it is eliminating some bilirubin.

So we sit and wait...wait and sit. Nana and Pop-Pop are here to keep us company and sit with Carson while Mommy and Daddy go out for supper (like we did last night).

Everything is going pretty well. The liver disease is not getting any worse and from a heart standpoint everything is great.

Daddy

4:30 Update: Carson has slept most of the day away. He also ate very well when he woke up. This is good as good nutrition and plenty of rest is what he needs the most right now. He was officially listed on the transplant list yesterday. Rhonda is scheduled for some testing on Friday to see if she is an acceptable candidate for being a live donor.

Tuesday, November 06, 2001 at 11:11 AM (CST)

Carson had a wonderful night of much needed sleep. Rhonda got to nurse him again this morning.

For the sake of continual nutrition the nurse put a NJ tube down his nose that goes straight to his intestine. Non-stop food!

Carson's bilirubin level dropped again. Nearly 10 in two days. Wunderbar! Our next hurdle is for the chest tube to dry up (and for the bili to drop even more...it is still 25 after all).

The last two weeks has finally caught up to Rhonda. Exhaustion got the best of her and she is taking a well-deserved and well-needed nap.

Nana and Pop-Pop will be here soon after spending last night in Fargo with our cats.

This will be another good day.

Daddy

P.S. There are three new pictures in the photo album.

Monday, November 05, 2001 at 04:44 PM (CST)

What a day. First Carson is extubated and then we meet with a transplant coordinator and surgeon at the U of M. Out of the frying pan (recovering from heart surgery) and into the fire (liver transplant).

We were told to expect a necessary liver tx sooner than later, probably within the next year.

The process for getting listed on the tx list has already begun. Wow!

Our heads our really foggy right now so I will end this letter.

Daddy

Monday, November 05, 2001 at 12:12 PM (CST)

Carson was extibated 15 minutes ago. He is breathing beautifully on his own. Both Mommy & Daddy got a chance to hold him.

Today IS a good day.

Daddy

Monday, November 05, 2001 at 09:13 AM (CST)

After a long six days of having Carson hooked up to the ventilator they are finally baginning to ween him off of it. FINALLY!

Every time he opens his eyes there is a pained looked on his face and he can't understand why he has this tube down his throat. The goal is to have him free of the tube by noon today.

There has been a lot of frustration over this the past several days. Most of the docs would have preferred the vent pulled days ago. The surgeon is just being cautious, which we can appreciate.

On another positive note, Carson's bilirubin dropped to around 30. It is still high but the main point is that it dropped.

Rhonda was able to nap with and hold Carson yesterday. This time the tears were of joy!

We are waiting to hear from the transplant coordinator at the U. We will visit with them either later today or sometime tomorrow.

Today will be a good day.

Daddy

Quick Update--We will meet with a transplant surgeon at 3:00 this afternoon. Daddy

Saturday, November 03, 2001 at 12:57 PM (CST)

Carson had a good night--we snuggled all night! I'm not sure which one of us enjoyed it the most, but it was good medicine for both of us!

Daddy got back from Fargo a little bit ago. He was so excited to get back to the hospital to see us. We were happy too. We feel more comfortable being down here for awhile knowing all is fine back home.

We had good news this morning--his bili did not rise today!!! In fact it even dropped a fraction. Hopefully it has peaked and will start dropping now.

He is also finally moving along in the poop area (won't he love reading this when he is 16!) Since 10:30 pm last night he has had 4 good poops and lots of toots! So, maybe the bili will start heading out of his system in his poop too.

The surgeon thinks maybe we can shoot for Monday to get off the vent. We will hope and pray. He rests quite a bit, but is really having a lot of alert times too. This morning he was even looking a little playful as he checked out the glowing red pulse-ox on his hand. He seemed to think it looked pretty cool. He also played with one of his stuff animal's ears--his kangaroo. So, more steps to him looking like our Carson.

Grammy heads back to Fargo tomorrow and we will miss her lots.

We don't have computer access until Monday, so we will update then. We will update as soon as we can about our little miracle. We thank God for all he has done for Carson.

Hugs to all!

Love, Mommy

Friday, November 02, 2001 at 04:01 PM (CST)

It's been quite the day. The most wonderful part was that I got to get in Carson's bed and snuggle with him. We napped for almost 2 hours. It was incredible and of course, I cried! We have an awesome nurse that is willing to stand on her head to make things better for all of us! :-)

Ferenci (GI doc) was in this afternoon. He told Carson to start reading the textbooks because he's not following directions very well! He has a wonderful sense of humor, which is something we need.

Carson is starting to itch from the high levels of bili. So, he's on some meds to help. The cardiac team thinks Carson has ascites, so Ferenci ordered an abdominal ultrasound. He thinks there might be mild ascites, but doesn't seem too concerned. The results will be back soon so we will see.

Ferenci thinks to be very very safe it would be wise to have Fairview (U of M) come to us at Children's and evaluate Carson for transplant listing. He is making the call as I type, so we'll probably see them on Monday. It's actually a relief and feels like a safety net. He kept stressing that in no way does he feel Carson is in liver failure, but he just thinks it's a good plan. So, another journey begins...

Daddy is back in Fargo getting some stuff taken care of. Grammy has been here, which has been so great.

I want to get back down to my sweetie! Will update tomorrow.

Love, Mommy

Friday, November 02, 2001 at 11:59 AM (CST)

Daddy is on the road to Fargo to check on things and return either this evening or first thing in the morning. I, Grammy Ruthie, arrived back in MPLS last evening, after taking the scenic route through downtown MPLS (exited I-94 one exit too early)...it only slowed my arrival by about 15 minutes, and my Honda had somehow made the trip in very good time, so it evened out! Carson's roller-coaster ride (and ours) continues; The cardiologist hoped to get him off the ventilator today, but the cardiac surgeon says "no". The echocardiogram looked good today...no significant fluid around the heart, but the chest tube continues to put out a fair amount; the surgeon thinks it is his ascites (fluid in the abdominal cavity from his liver disease) that is shifting upwards and coming out through his chest tube. Now we'll wait to see what the GI Doc (liver man) says. On another downside note, his Bilirubin was even higher today...33. We didn't like that. Carson is well-medicated, but wakes to look around, squirm, rub his eyes and kick his darling legs with the bunny slippers on his feet. Mommy is giving him his bath at this moment and then will crawl into bed with him for a much-needed snuggle. Uncle Chris and Grammy sat with Carson last evening so Rhonda and Trav could make use of a nice gift from Rhonda's co-workers...a gift certificate to a nice Italian restaurant about 2 miles from the hospital...the first outdoor experience for Rhonda in 9 days, I believe.
Grammy Ruthie

Thursday, November 01, 2001 at 11:20 AM (CST)

Another discouraging morning. Carson will be in the ICU and on the vent for several more days. His little body has been under a lot of stress the past week and the docs want him stronger before we move ahead with pulling tubes.

He is back on his liver meds. Our big concern still is that all of this does not put any more (and there is quite a bit already) stress on his liver. His bili level from this morning is 29.6.

Despite all of this Carson continues to heal. He is beginning to wiggle around and, with my apologies for being blunt, is starting to get pissed off. You would too with all those tubes sticking into you.

Grammy is probably going to make the drive here from Fargo for a couple of days. I (Daddy) will head to Fargo tomorrow just for the day to catch up on paying bills and check in on the home front.

Will keep in touch.

Daddy

Wednesday, October 31, 2001 at 03:39 PM (CST)

It's been a pretty quiet day in PICU. Carson's tube feedings continue to be upped, and he should be at full feedings by tomorrow morning. That is great.

It could be a couple more days on the vent. Surgeon wants him really rested and to get stronger before letting him breathe on his own.

I took a 2 hour nap--it was wonderful! I'm still tired, but at least a little more clear-headed.

Uncle Chris returns to Minneapolis tonight. We're excited to see him again. We have asked him to sit with Carson tomorrow night (if all is still going well) so we can go out for a meal together.

We'll update again after the docs make rounds in the morning!

Love, Mommy

Wednesday, October 31, 2001 at 10:18 AM (CST)

Carson had an ok night. He really started bleeding through his chest tubes, which surprised the docs. His heart did all the right things though and he compensated well (as he usually does!).

So, he has gotten some blood to replenish and give him a boost. He will remain on the vent and everything else probably through at least tomorrow.

This morning they began tube feedings. He is getting some of my breast milk through a tube in his nose that goes to his stomach. That should help keep the intestines moving along and we shouldn't have the cramps and gas that he did over the weekend. Plus, he is getting nutrition!

His bili shot up to an all time high yesterday of 25.9. Not good. Today it has dropped to 21. So, it's apparent that the heart failure he was experiencing certainly affected his liver the past week or so. Hopefully the bili levels will continue to go down.

We are exhausted and hope to trade off with each other and get some naps in today.

Carson is resting comfortably and is quite sedated. He will be pretty drugged up for his first Halloween. We got him a little pumpkin hat, so we'll put that on him later and take his picture. Next year we'll get a costume for him...maybe he'll be a pediatric cardiac surgeon! :-)

We continue to wonder what God's plan is for Carson. Guess we'll have to wait and see! We continue to be amazed at how Carson has affected so many peoples' lives. Thank you for all of your love, prayers and support!

Love, Mommy, Daddy and Carson Noah

Tuesday, October 30, 2001 at 03:14 PM (CST)

Carson is out of surgery. All went well. The surgeon drained a lot of fluid from around his heart, so it was good they went in to do it. Now we just hope and pray that it doesn't reaccumulate and that it helps his liver.

We just got to see him. Back to lots of tubes--a chest tube, back on the ventilator, another IV (this time in the foot), a catheter and still the central line in his neck. During the surgery the surgeon removed his pacemaker wires.

So, we just wait to see how things go. We had originally hoped to be discharged today, but now we'll be here for awhile yet.

Thanks to all of Carson's prayer warriors for getting us through another very difficult day! We thought of this too: this is Carson's third surgery and all have happened on Tuesdays.

Will post again soon!

Love, Mommy

Tuesday, October 30, 2001 at 11:13 AM (CST)

We had another setback today. After a morning of labs, chest x-ray, and echo it appears that the fluid continues to build up around Carson's heart. That means back to the O.R. again to re-insert a chest tube. The procedures is only about 20 minutes long but this puts him back in the PICU for another 2-3 days.

His bilirubin also hit an all-time high of 25. They are hoping that once the heart stress is relieved the bili will drop.

This fluid buildup is not life threatening, at least not yet. They docs don't want to try to solve this problem with steroids since it is stressing his liver so much.

Needless to say this was a setback we weren't expecting. Nothing really surprises us anymore and we find it hard to get excited over good news as it is usually followed by some bad.

Surgery is at 1:00 pm today (October 30)

Daddy

Monday, October 29, 2001 at 09:35 AM (CST)

Well, things have been kind of rough for Carson the last couple of days. He has been really fussy and cranky and has not slept much at all. An echo revealed he had some fluid build up around the heart. His case is not very severe; a diuretic and steroid were prescribed. He has also been somewhat constipated; good old fashioned milk of magnesia seems to be doing the trick.

He began settling down yesterday evening a bit. Both he and Rhonda have had very little sleep. We gave Carson a mild sedative last night and that zonked him out for quite a while.

Dr. Baker was in earlier this morning. Everything looks and sounds good and as long as the fluid around the heart goes in the right direction discharge could be in the next day or two.

We wheeled Carson up from ICU in the wagon Grandpa Chip bought him. He really enjoyed the ride and even gave us a smile!

Dr. Ferenci was in yesterday. Carson's liver feels about the same as it did before heart surgery. Carson is back on all his liver medications after a little hiatus. Slowly getting back to our routine.

After discharge we will stay in Mpls for a few days. One reason is to stay close to the hospital in case any issues arise with the heart. The second reason is to meet with transplant surgeons at the U of Minn.

Nana, Pop Pop, Uncle Derwin, and Aunt Dana left for home earlier today. Grammy Ruthie leaves within the hour. Their love and support were appreciated enormously! Thanks all.

When I left our room Carson was sleeping. I will sign off to see if he still is.

Thanks for all of your support.
Daddy

Saturday, October 27, 2001 at 02:05 PM (CDT)

Mommy asked me to update Carson's page: Carson is still in PICU, but hopefully only until Sunday. They would have sent him to 7th floor today, but due to the fact that he has a liver disorder in addition to the heart surgery, they want to watch him one more day.
He is nursing, though the first time he urped quite a bit (darned drugs mess up the digestive system). I hear he smiled this morning, but I missed it. When all the drugs and soreness from that big chest incision get out of his system, I'm sure we'll see much more of those smiles, like before!
He still has his Central IV line in his neck plus the wires through his chest that are available in case he needs to be connected to an external pacemaker, but other than that, NO TUBES! (His IV line is "locked" so not hooked up to IV fluids). He is taking his medications by mouth now! His liver studies are pretty much the same as before surgery, so no better, but no worse.
We can't updtate the website on Sunday, as the Family Resource Room is closed, so watch for updates on Monday.
Grammy Ruthie

Saturday, October 27, 2001 at 11:10 AM (CDT)

Carson had a pretty good night. He took to the bottle a couple of times and began nursing off of Rhonda this morning. He was very anxious to eat and swallowed a lot of air, making him throw up. Oh well. His system is still adjusting to food after three days of not eating.

The only tube he has left in him is the central line in his neck. Yippee!

We will probably be transfered up to seventh floor tomorrow and if chest x-rays look good and liver functions look relatively stable we may be discharged Monday or Tuesday.

Thanks all,
Daddy

Friday, October 26, 2001 at 01:43 PM (CDT)

Carson continues to do very well. Rhonda got a chance to hold him and there were a few happy tears shed.

Nana, Pop-Pop, Uncle D (Derwin, that is), and Aunt D (Dana, that is) showed up a little while ago after many time zones. They are all well and happy to see Carson.

Keep in touch and thanks for all the support.

Daddy

Friday, October 26, 2001 at 11:45 AM (CDT)

As I type this Mommy is holding Carson in her arms. It's a beautiful sight.

Daddy

Friday, October 26, 2001 at 10:25 AM (CDT)

Wonderful News

They pulled Carson's vent and NG tubes. He is breathing on his own and we can see his beautiful face!

Mommy & Daddy are very happy, to say the least.

Daddy

Friday, October 26, 2001 at 09:29 AM (CDT)

Carson had another good night and has had a very busy morning. They are in the process of weening him off his respirator. As of now the machine breathes 8 times for him and the other 8-12 times/minutes are on his own. Once he wakes up more and starts to REALLY hate the tubes in his nose and down his throat, they will pull the tubes.

They pulled the catheter out earlier this morning. Carson will soon be close to being "tube free". The central line in his neck will be with him until we are discharged.

He is resting well now but could begin to stir at any time. That means I've got to go.

Daddy

Thursday, October 25, 2001 at 04:06 PM (CDT)

It's been a quiet day (which means it's been a GOOD day!). The echo went well and the repair looks good. We found out that Carson's tricuspid valve is a little off--some blockage and some leakage. IF it is ever an issue, the most he would need is a valve replaced and that would be definitely be in adulthood. Dr. Baker thinks it may never even be an issue. We got worried...here's one more thing...but sounds like it won't be a problem any time in the near future.

Carson continues to be weaned off the vent more and more and if all goes well it will be pulled in the morning. That will be wonderful. We know the vent helps him not work so hard, but we still don't like it.

Dr. Ferenci just stopped by and said that Carson's synthetic functions look wonderful and the liver functions are okay. We just have to ride those out for a bit and see where they settle at. We'll be concentrating on those more next week.

Sounds like we aren't missing much back in Fargo--SNOW! Hmmm...maybe this is a way to get out of shoveling. No, we would much rather be back home and snuggling on the couch. Soon enough though.

We have lots of excitement tomorrow--Nana, Papa, Uncle Derwin and Auntie Dana arrive!!! Good friends Jody, Tony and Angie are also stopping by. It will be fun to see everyone. We have lots of pictures taped up around Carson's bed so everyone can see what he looks like without tubes and drugs!

That's all for now. THANK YOU for all of your prayers, support and messages. We just love being connected to the outside world this way!

Love, Mommy, Daddy and Carson Noah

Thursday, October 25, 2001 at 09:34 AM (CDT)

A busy but very good morning. First of all, Dr. Baker (the cardiologist) dropped by and said all was looking good with Carson. He will do an echocardiogram later today just to check things out.

Then Dr. Ferenci (GI doc) dropped by. We discussed the four transplant centres we will be investigating as well as the letter he needs to write to them as the referring physician. The ball is rolling on that front now.

Finally, Dr. Overman (the surgeon) came by and pulled Carson's two chest tubes. Yay! It's wonderful to see him hooked up to fewer tubes. They will start to ween him off of the ventilator and probably pull that tomorrow morning. One little victory at a time.

Carson's urine output improved throughout the night. He is still puffy but with the new diuretic things are improving. The docs need to be cautious with the medications they give as many are metabolized through the liver.

Anyhow, we are in good spirits and relatively well rested. We are looking forward to seeing Nana and Pop-Pop from Swan River and Uncle Derwin and Aunt Dana from Lahore, Pakistan/Bangkok, Thailand/Avonlea, Saskatchewan (in case you were wondering, they were teaching in Pakistan until things got messy over there). Grammy, Papa Chip, and Uncle Chris are still around giving Mommy and Daddy a chance to sleep every now and then.

Thanks for all your support,
Daddy

Wednesday, October 24, 2001 at 10:07 AM (CDT)

Carson had a GREAT night. All of his docs are really happy with his progress. He needs to get a little more output (a.k.a. "tinkle"), as he is a little puffy and has quite a bit of fluid in his abdomen. His liver functions are all over the place too, which we're worried about. We know they are going to jump around though, so we have to wait and see.

If all goes well, his two chest tubes will come out tomorrow. Yah!

Daddy and I got quite a bit of rest through the night. Grammy Ruthie and Papa Chip split the night shift. Felt good to sleep. We were just down the hall in a sleep room, so it was nice to be so close.

We hope to do some transplant investigation today...make contact with U of M and finalize some of the questions we want to ask the four transplant centers.

He has had such great care. We recognize quite a few of the nurses from last time (and they recognize us!). In some ways, this time is a little easier than June because we know staff, routines, machines and terminology a little more. We're even giving some tips to some "first-time-in-the-hospital" parents. Kinda scary to be veterans at this stuff!

Check out the new pics in the photo album--they were taken on Monday.

We praise God for Carson's healing. He is such a little fighter!

Love, Mommy, Daddy and Carson Noah

Tuesday, October 23, 2001 at 03:13 PM (CDT)

Carson is now safely tucked away in the PICU for the next several days. The cardiologist, surgeon, and anasthesiologist all said the same thing: everything went as smoothly as could have possibly gone. There was some concern about how his liver would take the medications and that will be our main concern over the next 24 to 48 hours. Even during heart surgery our main concern is still that liver!

Carson did open his eyes a couple of times but he is so doped up he probably didn't even recognize Mommy and Daddy.

As of now, all is well from Mpls Children's Hospital.

Daddy

Tuesday, October 23, 2001 at 09:40 AM (CDT)

After a little over two hours of surgery we can now report that all is going well. The surgeons have patched the ventricular septal defect (the hole in Carson's heart and one of the conditions associated with tetralogy of fallot). They had to cut through his right ventricle to get inside but that incision should heal up nicely.

Carson will be in surgery another hour or so and then another hour after that for observation. We should be able to see him in a couple of hours.

Thanks for all of your support.
Daddy

Monday, October 22, 2001 at 02:37 PM (CDT)

Pre-Op is finished and now the waiting begins. Everything is set for tomorrow and Dr. Baker (the cardiologist) is optimistic about how things will go.

We need to be at the hospital at 6:30 am. Surgery begins at 7:30 am and will last about 4 hours.

Today is Rhonda's birthday. We plan on celebrating tonight with a meal out but Rhonda will be getting her birthday wish one day late!

We will be updating Carson's page quite often so check in often.

Love,
Carson Noah, Mommy, & Daddy

Saturday, October 20, 2001 at 09:02 PM (CDT)

Our bags are almost packed, the car is full of gas, the garbage is out and the cats are fed and watered! We're almost ready to go tomorrow. We've had a busy day, but a good day. We had family pictures and Carson's 6 month pictures at Sears. They are wonderful! Can't wait to share them. He is such a flirt and so photogenic.

We plan to leave shortly after church tomorrow. Hopefully get to Uncle Chris' by about suppertime. We will even get to see him! What a treat!

That's all for now. Will update on Monday, along with some new pictures, hopefully!

Love and God Bless! Mommy, Daddy and Carson Noah

Monday, October 15, 2001 at 08:54 AM (CDT)

We're on the countdown...surgery is a week from tomorrow. Lots to do before then.

The BIG news is Carson has two teeth--bottom middle ones. He loves feeling his new teeth with his tongue. It's so cute to watch.

We had a great weekend with Nana and Papa. They came from Swan River to visit Carson (and mommy and daddy too). Tonight we get to see Uncle Corey. He hasn't seen Carson since the end of June. He'll sure notice a difference!

That's all for now!

Mommy, Daddy and Carson Noah

Monday, October 08, 2001 at 03:15 PM (CDT)

Some good news, some news to process...

First of all, Carson gained 7 ounces in 7 days! He's at 13 pounds 4 1/2 ounces. It's so fun to see chubby cheeks!

Secondly, Carson's latest labs don't look good. We're going ahead with heart surgery two weeks from tomorrow. It will be at Children's Hospital in Minneapolis. We want to get that fixed so his heart is strong for what lies ahead of us.

Because of Carson's labs our GI doc thinks it is a good idea to start visiting with transplant teams. As difficult as it was to hear it, I was not surprised. Parent's intution. It is likely we will check out Mayo, U of Minnesota and Madison. We are not in an emergency state, it's a matter of us meeting transplant teams and them meeting Carson.

So, on this day of Thanksgiving (it's Canadian Thanksgiving) we have so much to be thankful for. We have a beautiful and loving little boy. That's what we will concentrate on this evening.

Love to all of you! Mommy, Daddy and Carson Noah

Tuesday, September 25, 2001 at 04:27 PM (CDT)

After speaking to both Dr. Ferenci (ped GI doc) and Dr. Baker (ped cardiologist) today Carson's heart surgery has been bumped up to "sooner than later". Since Carson's liver is acting up a bit right now all the docs concerned want the heart fixed soon. To be exact, October 23. They don't want a potential liver transplant to be backed up because we are still waiting to heal from heart surgery. This is not to say that Carson will need a transplant anytime soon, but everyone is just playing it safe.

Rhonda and I have had heart surgery in the back of our minds up until now because we have been so concerned with the liver. This news hit us kind of hard. We were expecting it...just not so soon. Anyhow, a full recovery is expected.

Travis

Wednesday, September 19, 2001 at 11:49 AM (CDT)

We're still in a wait-and-see pattern. Carson has started his new meds and we hope to see improved labs when we go on Monday morning. Hopefully we will have the results by Monday afternoon.

On a very encouraging note, Carson continues to be so happy. The GI doc has repeatedly said that if his liver were causing problems, he wouldn't be cooing, laughing and smiling. If your liver is acting up, you feel pretty crummy.

He is such a funny little boy too--he knows when Mom should be home everyday. If I'm not back by 5:00, he refuses the bottle, starts to fuss and even get angry, and waits for the goods straight from Mom! Smart kid!

He is so alert and really is taking so much in. He rolls over well from front to back and almost rolls over from back to front. (His arm gets in the way.) He loves toys and has a few favorites. He also knows how to activate his "Smart Symphony" -- a piano-like toy. He presses the buttons to make the music start. He loves doing that. He has a favorite blankie too--so we have a little "Linus". He loves "blue blankie" and bunches it up and holds it in his hands. He love to suck on it too, so it gets washed A LOT! He giggles at himself in the mirror now too, which is fun to watch.

We also think he may be starting to teeth. He is really working on those gums. We'll have to see. We're excited for teeth, but there is also something so adorable about a toothless baby smile!

Just wanted to give an update about what Carson is doing. It's so fun to watch him grow and change.

That's all for now!

Love, Mommy, Daddy and Carson

Tuesday, September 18, 2001 at 08:09 AM (CDT)

We are back home, but not sure for how long. We got home on Saturday and Carson was much happier. He just smiled, cooed and kicked. He knew he was home.

Had labs yesterday morning. Carson weighs 12 pounds 9 ounces. So, his weight gain continues to be steady. We got the lab report yesterday afternoon and after conferring with his GI doc, we have more meds to get on. The doctor thinks it could be an inflamation of the bile ducts.

So, today Carson starts on a more powerful antibiotic than he is currently on. We also start a 5 day run of steroids. He will also be taking Duflucan to ward off any possibility of thrush from the antibiotic. We do labs again next Monday. If things don't look better, it's back to the Cities for a a visit with the GI doc and IV meds.

We continue to worry about Travis' brother and wife in Pakistan. We're hoping they are evacuated soon!

That's all for now!

Love, Mommy, Daddy and Carson Noah

Friday, September 14, 2001 at 02:48 PM (CDT)

Things are looking up. Met with the surgeon yesterday after the last nuclear scan pictures. Both he and the GI doc think that Carson's bile ducts got temporaily plugged up. (We asked Carson if he wanted some Liquid Plummer!) We are clear to go back home. We are going to wait until tomorrow (Saturday) and then if all looks good, we'll hit the road.

We have lab work on Monday and wait to see how the results look. If the same or better, wonderful. If worse, we come back to the Cities for some aggressive liver treatments.

Carson has been so happy today--first day in three that he hasn't been to a doctor or had to fast. What a sweetie pie!

Still praying for all across the world that are going through so much right now. May God wrap his loving arms around all of them through their hurt.

Will post more early next week.

Love, Mommy, Daddy and Carson Noah

Thursday, September 13, 2001 at 03:29 PM (CDT)

Potentially good news! Dr. Ferenci is aware of all that is going on even though he is working in St. Cloud, MN. Carson's labs look good and the ultrasound looked good. Not seeing any results from the nuclear test is typical in biliary atresia kids. He thinks that this might just be a blockage that is eventually going to resolve itself.

Anyhow, once nuclear medicine is done with us at 4 today there won't be any more testing. We will probably stay in Mpls until Saturday just in case. Then it will be back to Fargo and some more blood work on Monday just to check the liver enzymes.

The one thing that has kept our spirits and hope up is that kids with liver failure are not happy babies. Carson has been smiling through all of this (except when we can't feed him because of testing).

On another note, we are very concerned about my brother Derwin and his wife Dana who live and teach in Lahore, Pakistan. Despite the fact that they are Canadian they do teach at an American school and a 6 foot 5 white guy stands out pretty readily over there. The school is prepared to evacuate everyone to an undisclosed, yet much safer, location. We are hoping and praying that they will be OK in light of the recent terrorist attacks and possible US military action in neighbouring Afghanistan.

Travis

Thursday, September 13, 2001 at 02:37 PM (CDT)

Well, we still have no news. We've had to go back for pictures at noon, 2:00 and now again at 4:00. So far it looks like nothing is passing through, which is not good news. The surgeon we were supposed to meet with this morning was called into emergency surgery, so we haven't met with him yet.

It's been a very long day for all of us. Carson has managed to get in a few good naps though.

The resource center closes at 5:00 pm, so doubtful that we will get another post on today. Keep checking just in case though.

Love, Mommy, Daddy and Carson

Thursday, September 13, 2001 at 10:24 AM (CDT)

Well, what a day so far! The liver scan is basically still in progress. We had pictures for an hour and Carson was so angry--he wanted to eat and snuggle. Didn't want to be under a big machine! Finally he fell asleep.

We don't know too much yet...radiology wants us back in two hours for more pictures. Acutally it's at noon, so about an hour and a half from now. It doesn't look like anything is going through his liver now, so that is not good.

On a very positive note:

We had a VERY yellow poop this morning (which is what we want). It was beautiful! We haven't seen one like that since last Thursday. That little poopy diaper gave us lots of hope!!!

We've talked to the GI doc's patient coordinator. The report from the ultrasound yesterday is that everything looks normal. The labs look pretty good too that were drawn yesterday. His bilirubin is up some, but not much and all others look good. He is really confusing us!!!!

So, we are in a waiting pattern. Carson's tummy is full of num-num and we've had lots of smiles in the last 1/2 hour! That has meant so much to Mommy and Daddy!

Will post more when we know more!

Love, Mommy, Daddy and Carson Noah

Wednesday, September 12, 2001 at 03:19 PM (CDT)

We are in the Cities...good trip down. Carson couldn't eat from 10 am on because of the ultrasound. He was pretty angry the last 45 minutes. Ultrasound went well, then we did labs, which he took like a champ. Just found out that the surgeon that did Carson's Kasai, Dr. Rustad, will be waiting for us before the nulear scan tomorrow morning at 7:30 a.m. We're looking forward to meeting with him to see what his thoughts are.

Had a short night last night...packing and nerves!!! Then the alarm went off at 3:30 this morning. So, back to Uncle Chris' apartment for naps for all three of us.

Will try to post tomorrow as soon as we know something!

Love, Mommy, Daddy and Carson Noah

Tuesday, September 11, 2001 at 03:25 PM (CDT)

What a rollercoaster ride! I have just a few minutes to update, but Carson is having some problems. We had a white poop on Friday (that's not good--means no bile is getting through). Then another yesterday and one today. Have been consulting with the GI doc since Friday and we had an ultrasound today. Ultrasound showed that Carson's bile ducts are enlarged, which is actually a good thing, but appear to be clogged or blocked. Our GI doc has seen this before and it corrected itself, which would be wonderful. However, we need to be aggressive about this. We leave for the Cities in the morning for another ultrasound down there in the afternoon. Then lab work and on Thursday morning we have a HYDA scan (spelling?)--basically a radioactive liver scan. He's had that before. There are some surgical procedures available to unclog the ducts, if that is the problem. It's also possible the Kasai surgery will have to be redone, which would be awful. Anyway, we will be on an outpatient basis for now, staying at my brothers place in Bloomington. When we know more we will post on the web site.

We've come so far...this is so hard to be going through all of this again. We hope and pray that Carson is just giving us a little scare an that soon he will be pooping yellow again.

So, please keep us in your prayers! Thanks for all you've done so far!!!

Mommy, Daddy and Carson

Wednesday, September 05, 2001 at 08:54 AM (CDT)

We had an outstanding day yesterday. As mentioned in our post yesterday, Carson's GI doctor is thrilled with his progress and Carson is not in line for a liver transplant any time in the near future. He was so amazed at how great Carson looked. We can also switch to doing labs monthly now, instead of every two weeks. Yippee!

Next we visited with the cardiologist. He was also very happy with how Carson looked. Carson's oxygen levels were super--98%. He told us not to be concerned about the fact that we can feel his heart murmur now if we put our hand on his chest--it doesn't mean it's getting worse. Whew!

We see both GI and cardiac docs on Wednesday, October 24th. On that day we will likely set up a time for heart surgery--probably in November or December.

Next appointment was the Ear, nose and throat specialist to look at the little knot on Carson's neck. He hasn't seen Carson since June 6, so he was shocked at the fact that we didn't have a yellow baby anymore. He couldn't detect ANY lump and thought Carson's range of motion in his neck was wonderful. He discharged us from his care. We really liked Dr. Sidman but are happy that we have one less doc to work with!

Next on to a peds surgeon to look at Carson's hydrocele. He confirmed that he will need surgery to correct the hydroceles, but it can wait a bit. Probably a good idea to have it done before March or April. We'll talk with the cardiac team to see what is best for Carson's heart. So, more surgery, but this is minor. Carson will be in overnight for this one (typically only day surgery, but since he had an apnea spell after his last surgery, the surgeon thought it would be best to keep him overnight.)

So, that is the big update. We cried so much yesterday over the positive reports from four doctor visits. We have such a sense of relief, finally!

Be sure to check out the new pictures of our sleepy little bear. He was such a trooper yesterday...up early, in and out of the car seat many times, getting dressed and undressed umpteen times and then a trip home. He was so content through it all.

Thanks for all of your thoughts and prayers!

Love, Carson, Mommy and Daddy

Tuesday, September 04, 2001 at 09:58 AM (CDT)

We're in Minneapolis--one appointment down and three to go!

The visit with Dr. Ferenci (the GI doc) was WONDERFUL!!!!! Ferenci is very pleased with Carson's growth, how the liver felt and thought labs looked good. We need to up a few meds a little, but he was very pleased. He feels Carson's prognosis is great and will likely make it into childhood/early adulthood without any talk of transplant. Basically, if Carson's liver hadn't felt great, we would be talking to transplant teams soon. So, we are overjoyed and cried tears of happiness.

We meet with the cardiologist (Dr. Baker) at 10:45, Dr. Sidman (Ear, nose and throat) at 1:30. Then we are meeting with a peds surgeon at 2:15. Ferenci lined it up this morning. He wants Carson's hydrocele/hernia checked out just in case it is a surgical problem.

That pushes back our departure time, but that's okay. Better to get it all done in one day.

We are back to see Ferenci on October 24th.

That's all for now. Will update later (today or tomorrow) on how the rest of the appointments go.

Love, Carson, Mommy and Daddy

P.S. We're going to add some new pictures to the photo page!

Friday, August 31, 2001 at 04:39 PM (CDT)

Wonderful news! Last night Carson had his four month check up with our family doctor. He gained 11 ounces in 9 days!!!!! (A new record for him--he has typically done that in about 2 weeks.) We were thrilled and of course, Mommy cried!

He got his shots and handled those just fine.

We are looking forward to a relaxing weekend. On Monday we go back to the Cities for three check ups. Look for an update then!

Have a great weekend!

Mommy, Daddy and Carson

Wednesday, August 22, 2001 at 09:56 AM (CDT)

Another lab day yesterday--blood work went well and we had a weight gain of 10 ounces! Carson is up to 10 pounds 15 ounces. Almost to the 11 pound mark!

Carson has had a busy couple of weeks. He was baptised on August 12. It was so special and a joyous day. On the 15th he rolled over and on the 19th he laughed at Daddy! He is so much fun. He talks and coos a lot and is content much of the time.

We're still ajusting to Mommy going back to work; Daddy and Carson have lots of fun during the day.

Our next event is Minneapolis. We have three appointments on September 4--GI, cardiologist and Ear, Nose and Throat.

That's all for now! Thanks for all all of your thoughts and prayers still coming our way!

Love, Mommy, Daddy and especially Carson

Tuesday, August 07, 2001 at 07:06 PM (CDT)

Hi all,
We had another weigh in today. Another excellent weight gain...11 ounces. Carson now weighs a whopping 10 lbs. 5 oz. Yippey!

He cried during his blood draw but calmed down soon after. He is a tough little guy.

Since his thrush was not clearing up (and because he will be on antibiotics for a year or more we will probably have many more cases of thrush) we got his mouth painted purple, of all colors! We don't exactly know what this stuff is but it is supposed to take care of thrush in no time. Right now Carson's mouth is a deep purple!

All in all Carson is doing well. He smiles a lot, is eating a lot, and is a joy!

Mommy and Daddy, and Carson too!

Wednesday, August 01, 2001 at 01:11 PM (CDT)

Hello!

Today is Mommy's first day back to work. It was soooo hard leaving this morning. I am so thankful that Daddy is going to stay at home to care for Carson.

Carson is doing well. He is gaining weight. :-) We look forward to the weight check next Tuesday.

We had his pictures taken on Monday at Sears. I have added two to the photo album. If you would like to see all of his pictures, email me and I will send all 6 to you! (I'm not a proud Mommy or anything!) My email is rkitch@gwmail.nodak.edu

Carson's baptism is coming up...August 12. That will be a special day with family and friends.

That's all for now!

Love, Carson, Mommy and Daddy

Wednesday, July 25, 2001 at 04:32 PM (CDT)

Great news! Carson is gaining weight!!! We had a lab draw/weight check yesterday. In two weeks he gained 13 1/2 ounces (which is right on track for normal wieght gain.) We were thrilled. He is at 9 pounds 10 1/2 ounces now. We were hoping for 9 1/2 pounds, and he exceeded that. His GI doctor was hoping we would see about an 8 ounce gain in a two week span, so it looks like Carson is right on track!

We don't know results for the blood draw yet--maybe tomorrow. His color looks good and seems to improve every day.

On a downside, he has thrush. (FYI, thrush is basically a yeast infection of the mouth). The doctor said that the antibiotic he's taking can cause thrush. So, since we certainly need that antibiotic, we have to treat the thrush. So, more medicine! He is a good trooper about the mouth-swabbing we need to do with the Q-tip. Looks like we will only be on this med for a week or two.

We will do updates at least for every weight check--every two weeks right now. We'll also update if something big happens. It is so fun to watch him grow now. He smiles a lot, is cooing quite a bit, has discovered his hands are attached to his body and is interested in a few toys. He interacts more and more every day. He is such a sweet and wonderful little baby.

That's all for now.

Mommy, Daddy and Carson

Friday, July 13, 2001 at 10:34 AM (CDT)

We just finished the last of three appointments. Yesterday we met with Dr. Ferenci, the GI specialist. He was pleased with how Carson is doing.

This morning we met with Dr. Baker, the cardiologist. He is also pleased with how Carson is doing. His oxygen levels are very high and his heart is still in good enough shape that the soonest heart surgery will be is 3 1/5 months from now.

We also met with one of Dr. Rustad's partner, a pediatric surgeon. Carson's incision site is looking good. We will need to keep an eye on his bellybutton hernia. That will hopefully heal on its own. Carson will probably need another operation, to fix the hydroseal/hernia of his testicles. We didn't want to hear that but it is a minor procedures and we would be released from the hospital the same day as the operation.

We will be back in MPLS on September 4 for more checkups.

There are new pictures in Carson's photo album.

As soon as Carson's tummy is full we are heading home.

Carson, Rhonda, and Travis

Monday, July 09, 2001 at 02:54 PM (CDT)

Hello!

It feels so good to be home! Carson is doing fairly well--was fussy yesterday. Today is much better. Back to the doctor tomorrow for blood draw and weight check. Even though we see him daily, we think he is starting to add some size to his thighs!!!

We go to Minneapolis on Thursday for doctor appointments. Should be home on Friday if all goes well.

Thanks again for all of your thoughts and prayers!!!

Love, Carson, Mommy and Daddy

Wednesday, July 04, 2001 at 05:08 PM (CDT)

Hi all,

It is a joy to be home with Carson! His recovery is going very well. He is getting into a routine of eating and sleeping and his many medications/vitamin supplements are going down well.

He was weighed yesterday and is approaching the 9 lb. mark: 8 lbs. 14 oz.

Immunizations will be on Friday. The bad news there will be four needles. The good news is Carson is used to being poked by now!

That's all for now.

Carson, Rhonda, and Travis

Saturday, June 30, 2001 at 03:07 PM (CDT)

We're home.

Thursday, June 28, 2001 at 12:38 PM (CDT)

Carson's discharge papers are in and we are ready to leave the hospital! Met with our main doctor and he gave us the OK. Carson's tummy continues to go down and is feeling softer now. His JP site is no longer draining.

Our next challenge is to get all of Carson's medications and vitamins set. All total: Vitamin E, Vitamin D, Multi-Vitamin, Actigall (for bile production), and an antibiotic. I think that is all but don't remember for sure.

Hope to be back in Fargo sometime this weekend.

New pictures in the photo album.

Daddy

Wednesday, June 27, 2001 at 01:10 PM (CDT)

Good afternoon!

Carson's drain site has stopped leaking. :-) Both of his main doctors want one more night here just to be safe for infection purposes. At this point, what is one more night!!! We are relieved, since they are being so cautious.

Carson scared Mommy this morning when he was weighed--he lost 6 ounces since yesterday. (May not sound like a lot, but it is when you are 9 pounds soaking wet.) Then the GI doc reassured us that that was probably all from the drain site, since he soaked through a lot of gauze. Whew!

We are starting to get a regimen for all the medicine. He only gags on one now!

We have been moved to another room--our roommate developed a fever. It's hospital policy that the patient be in a single room if they have a fever. So, our new room # is 7124 bed 2. Our new telephone number is 612-813-6488.

So, as of now it looks like we will get out tomorrow. Probably back to Fargo on Saturday, maybe Sunday. We'll wait and see how Carson is doing.

I guess it's hot and humid out! I'm going to try to have Trav and I take a walk today. I haven't been outside since Friday. Sounds like I haven't missed much!

Will update again for sure before we go!

Love, Mommy

Tuesday, June 26, 2001 at 01:50 PM (CDT)

Carson's blood work came back great. All that is keeping us in the hospital one more night is the JP drain site.

Daddy

Hi again,

As Rhonda was writing what is written below Carson had a bit of a setback up in his room. His JP tube incision on the side of his tummy started leaking. Chances are we won't be discharged today. Will keep everyone updated.

Daddy

Hello!

We have just finished visiting with Carson's surgeon and GI doc's. They are running some last minute bloodwork and if all looks good we will be discharged today!!! We are thrilled. They are very happy with Carson's progress, which makes us even happier. Right now it seems our lives revolve around liver enzyme and bilirubin numbers and his weight.

Carson is having an awful time adjusting to all of the new medication--one antibiotic, 4 or 5 vitamins and a bile stimulant plus Tylenol for pain control. Some of them he doesn't mind...others he pukes up everytime. We will have to strategize. He just screams and screams from how they make his little tummy feel. We are hoping that his body adjusts to them quickly.

We are going to stick around the Cities for a few days. The GI doctor is comfortable discharging him today if we stay in the area until Thursday. If he still doesn't have a fever by then, we can head home! Can't wait. :-)

That's all for now...Mommy

Monday, June 25, 2001 at 02:25 PM (CDT)

Sorry this update is so late today...have been waiting to see all of Carson's doctors. I didn't want to miss one.

The surgeons are pleased with how Carson is doing. He had a great day yesterday. He is only on Motrin and Tylenol for pain, and will likely stop Motrin soon.

The poops keep coming, so we are so pleased about that. We are always analyzing the color and amount (poop color is very important in biliary atresia...we don't want to see white poop)! Uncle Chris thinks we are crazy by how excited we get over a beautiful yellow poopy diaper!

No mention of when we will go home yet. I think tomorrow would be the absolute earliest, more likely Wednesday or Thursday. By later today he will have no more tubes--the last of the IV's will go. They are still going to keep the central line in his neck for blood draws and in case they have to hook up an IV again.

We have learned we will be here for checkups frequently--likely every 2 weeks for quite some time. Liver infection is the primary concern. We also will start exploring transplant issues. About 20% of biliary atresia kids never need a transplant. We would love to be in that group! But, we need to be prepared too. So, it is likely that we will visit with transplant teams in the upcoming months.

I am going to sign off and take a nap!!! Thanks to all of you for your thoughts and prayers!

Love, Mommy

Saturday, June 23, 2001 at 11:37 AM (CDT)

Good news update!
Just got Carson's bilirubin levels back. Total is down to 2.8. Direct is down to 1.8. These numbers show that Carson's liver is doing what it is supposed to. Happy day.

Daddy

Carson got to drink Pedialyte a little after noon yesterday...it went fine. Mommy got to nurse him around 4:30 pm...1st feeding went fine,but he nursed about 3 more times in the next several hours and at about 9:30, it all came back up. He did alright again until about 2:00 am, then was fussy til 5:00 A.M. He urped again this morning, so the digestive system is not quite up to par.
Uncle Corey and Uncle Chris both got to MPLS last evening. Chris left for a wedding in Fargo this morning; Corey will stay until Sunday morning. Grammy Ruthie will find out on Sunday if she has to leave or can stay until Monday...
We won't be able to update the website on Sunday as the computer library is closed.
Keep the prayers up for that little tummy, and all the other obstacles on the road ahead. Amazing to see over 2300 hits on his web site! We love it!
Grammy Ruthie
3:44 PM update, Saturday:
Carson's noon feeding went well and stayed down...he slept from noon until 3:15, and is eating again now; Grammy crosses her fingers and prays for each ounce to stay in his tummy.
Stay tuned for more on Monday.
Grammy Ruthie

Friday, June 22, 2001 at 10:48 AM (CDT)

Today has brought some more developments. It was a rough night with Carson's nose tube (it was plugged, had to be pulled and a new one inserted). Afterwards he slept well, pooped twice, and has had the nose tube pulled out for good! His poopy diapers show that his plumbing is starting to work again.

Carson's color has never been so good. His eyes are sparkling and he is very alert. He was put on a special IV formula that will pump him full of easily digestable fats, vitamins, and calories. His cheeks are plumper already.

Both Rhonda and I have had several chances to hold Carson. What a wonderful feeling. There is a good chance Rhonda will start feeding him again soon.

Nana and Papa Kitch left for Swan River this morning. After a 14 hour drive they should hit home around 11 tonight.

On a different note, condolences and love to our sister-in-law Dana and her family at the loss of her grandmother in Regina. Carson loves you and he can't wait to meet you.

Grandpa Chip and Grammy Ruthie are still here and we await the arrival of Uncles Corey and Chris this afternoon and evening.

It looks as if we will be here until the middle of next week. More updates as they occur. Check out some new pictures.

Daddy

Thursday, June 21, 2001 at 03:56 PM (CDT)

Carson is now on 7th floor...a step-down from PICU. He is about to be started on TPN (a high-nutrition type of IV...with calories and lipids, etc) His catheter is out and he has tinkled...isn't that exciting? Also, Grammy needs to find a soft place to do a summer-sault as she promised Carson she would do one as soon as he "tooted" and he just did! (Fellow nurses know how exciting it is when an abdominal surgical patient passes gas!)
Mommy got to carry him as they transported him from PICU to 7th floor...she cried tears of joy to get to hold him for the first time since Tuesday morning.
Please notice the room # and especially the new phone # on this page; the phone # is a direct line to his room, for those who need to call.
We are overjoyed by the response to Carson's web page...what a way to "feel the love"! It is awesome. We print out every message so everyone can read them; he will have quite a chapter in his baby book to look back at, and Mommy is the Master of Scrapbooking and journaling, so nothing will be forgotten in this chapter of his life!
Thank you again, from the bottom of our hearts...Please keep the prayers and warm fuzzies coming!
More tomorrow. (this computer center is open 9-5, shorter hours on Saturday, and closed on Sunday).
Grammy Ruthie

Thursday, June 21, 2001 at 10:10 AM (CDT)

Carson will be moved out of PICU today...probably this afternoon. That's progress! In other progress notes, we've gotten rid of two tubes. First was the arterial line in his arm. He was so happy to get his arm back (for those of you that don't know Carson, he LOVES to have his hands free and by his face). Next we got rid of oxygen. His oxygen levels have continued to be outstanding ever since. He will also likely get rid of his foley catheter today too. YAH!

It is possible that we may be able to try feeding tomorrow, since he is having a few bowel sounds. If not tomorrow, then Saturday. That will make Mommy extra-happy!

All of Carson's doctors are very encouraged by how he is doing. We had some great lab results this morning related to his liver. Hard to say if it is a fluke or a result of the surgery. Too early to tell. We were thrilled though, just the same.

We expect him to be on 7th floor and will update the page when we find out room number and phone number.

We have been taking shifts around the clock, so someone is with him all the time. It is so wonderful to have all of the grandparents here! They have been great. Some of the nurses didn't realize that Grammy Ruthie and Papa Chip were even divorced. That has been good humor!

Thank you everyone for all of your thoughts and prayers for us. They mean so much. Thank you too for the messages in the guestbook--keep leaving them. We love to see new additions. It makes us feel so connected with all of you!

Mommy

Wednesday, June 20, 2001 at 09:48 AM (CDT)

Carson had an ok night. A little problem with apnea, maybe due to the morphine. Gave Rhonda and Trav a scare, as at 11 pm they had to bag him for a little bit to get him to breath. He is quite puffy from all the fluids, so is getting albumin to see if he can get the fluid into his blood stream and then out through his little urinary catheter! He has IV, Arterial line, Central (IV) line, Nasal-gastric tube, foley catheter , and JP drain, plus his incision, of course...more tubes than baby!
He was quite aggitated last evening and having trouble settling down, but resting better this morning. Rhonda and Trav went to the "Wassii center" where Trav's folks motel-ed last night (attached to Abbot Northwest Hospital, which is attached to Children's Hospital) and are getting some much needed rest. Grandparents are taking turns sitting with Carson.
HIs cardiologist and Gastrointestinal Specialist have been in and are pleased with his progress. He will be in PICU for 1-2 more days.
Trav's two brothers and new sister in law will not be able to come down after all, as when his new sister-in-law got off the plane in Winnipeg, she found out her Grandmother, near Regina is very ill, so they went that direction instead. (Trav's brother, Derwin and his new wife both teach in Kuwait, and will now be teaching in Pakistan, but are on a month or so vacation back to Canada at this time).
Rhonda's two brothers will be in MPLS on Friday...Corey coming from Illinois, and Chris "who supposedly lives in MPLS" is in Kansas this week for his job...based out of MPLS, but rarely here. We are thankful for the use of his apartment in Bloomington, only about 15 minutes away from the hospital.
Keep checking the web site, pass the news on to others, and continue with all of your much appreciated prayers.
Love from Grammy Ruthie

P.S. Carson has some new pictures that were taken Monday afternoon--check them out on the "Photos" page! :-)

Tuesday, June 19, 2001 at 04:24 PM (CDT)

Carson is out of surgery and in PICU (Pediatric Intensive Care Unit). We just got to see him...Rhonda and Trav first and then 2 of us at a time with them, so Grandmas went first. He is getting a little morphine for pain, and is still groggy.
His surgery seemed to go fine; now it is more wait and see...will be several weeks before we know how successful this is, by watching his liver enzyme studies frequently.
His intestines were reversed, left to right, which will present no problem, but they removed his appendix as he would have pain on the wrong side if he had appendicitis and this would fool the Dr.'s so they removed it to prevent confusion. I had a 20-something year old patient once with the same thing...and his appendix did fool us for a while.
So far, the surgeon thought his liver looked to be in good shape; we are thankful for that.
Since I can read my e-mail from here, but my address book won't display, will everyone please pass the word to each other to check the web site.
Trav's brothers and new sister in law will be here Wednesday, and Rhonda's brothers on Friday. All Grandma's and Grandpa's are here now.
Thanks for all the love and prayers...keep them flowing!
Grammy Ruthie

Tuesday, June 19, 2001 at 12:32 PM (CDT)

Well, the news does not get better. Carson does have biliary atresia. They are now doing the Kasai procedure. Please keep praying that the procedure is successful.
He will be in surgery until 3 or 4 this afternoon. We'll try to update his page one more time after surgery today. The computer center at the hospital closes at 5:00 pm.
Grammy Ruthie

Tuesday, June 19, 2001 at 10:52 AM (CDT)

Carson is now in surgery. It was very hard for Rhonda and Travis to let him go and hand him over to the anesthesiologist. Carson was a trooper, not being able to eat from 6:30 this morning until he went to surgery about 10 minutes ago. He only fussed a few times, and was asleep as he went to surgery.
We know that Jesus is holding him in His arms, and we are holding on to the hope that God will perform His miracles.
They will first do exploratory surgery to find out what the problem is; also a cholangiogram to see if and how the bile ducts and gall bladder are working. If it is biliary atresia, they will then proceed with the Kasai (sp) procedure, joining the liver to the small intestine. The heartbreaking part of that is, we found out the majority of children with this condition still need a liver transplant in anywhere from 1 year to 20 years, depending on liver damage.
We expect to have a diagnosis by about 12:30 today, so please keep watching for updates, and of course, pray fervently.
Thank you all for all your prayers and comments on Cason's web page. The tremendous support means more than you'll ever know.

Monday, June 18, 2001 at 09:39 AM (CDT)

A quick update...Rhonda, Trav, Carson and Chip will be on the road later this morning, and I (Grammy Ruthie) will leave a few hours later. They just got a call that the surgery has been moved up to tomorrow, Tuesday, at 11:00 A.M. AND WITH THE SURGEON WE WANTED!...Dr. Rustad. Our prayer request includes to use his knowledge and skills to take care of our little fellow. We thank God for Dr. Ferenci who was on the ball first thing this morning to get the day and surgeon changed on Carson's behalf.
His surgery may take anywhere from 1 1/2 hours to 4+ hours; we will update the web page as soon as we have results.
Again, we thank you for all the prayers for Carson...please continue to keep him uplifted in your prayers. Grammy is asking Jesus to hold him in His arms during surgery.
Grammy Ruthie

Thursday, June 14, 2001 at 03:37 PM (CDT)

Carson's surgery has been rescheduled for Wednesday, June 20. This makes the wait even longer and harder. The reassuring thing is that if Carson's condition were really serious, they would have had us into Minneapolis on an emergency basis.

Nana, Papa, and Uncle Derwin left for Swan River today. They noticed that Carson was even less yellow than when they saw him last night.

As of now we are planning to go to Minneapolis on Sunday and rest up a few days before surgery.

We will continue to update this page as new information comes to us. Keep checking back. Thank you for all the kind words on Carson's guestbook. We are printing them off as they come in. We read them for comfort.

Carson, Mommy and Daddy

Tuesday, June 12, 2001 at 11:02 AM (CDT)

Wednesday, June 13
In speaking with our Doctor he is not entirely sure he can rule out bilial atresia. The only way to know is exploratory surgery. Carson's surgery has been scheduled for Tuesday, June 19. That is a long ways away and we are hoping for a cancellation that might bump us up to an earlier time.
We thought we had eliminated bilial atresia but the chance is still there. On a positive note Carson has put on quite a bit of weight and his skin and eyes aren't as yellow. These good signs point away from bilial atresia...but we won't know until surgery.

Daddy

Tuesday, June 05, 2001 at 02:46 PM (CDT)

Carson was born April 28th to Rhonda and Travis. Last week we noticed problems...jaundice and poor weight gain. He is going through many tests and seems to have more than one problem. One problem diagnosed today is a heart defect. He will need surgery in about 6 months but we are assured it is very fixable. The other problem, the jaundice is still a mystery and he likely will need surgery this Thursday, but we still lack a definite diagnosis. This liver problem may well be his biggest problem, and for this we ask for prayers for him and also for us, his family...Mom, Dad, and Grandparents as well as many others who love this precious little boy.

Update as of 10:30 Wednesday, June 6
The opthamologist just finished up with Carson. His eyes are perfectly normal. No cataracts. Great news.
Also, his kidneys are perfectly normal as is his spine. He is sleeping with Mommy right now and still gives us smiles. We are still awaiting the CT scan on his neck. Return often for more updates. Daddy

Update as of 4:30 pm Wednesday, June 6
Things are looking much more encouraging for Carson today. First of all he went through the CT scan like a pro. Based on Carson's lack of acholic (pure white) poop our Doctor is beginning to rule out biliary atresia. Another possibility was Aligilles Syndrome, another liver disorder, but based on his eyes and other things this one is also probably going to be ruled out. This is very good. His latest possible diagnosis is Alpha-1 Antitrypsin Deficiency. A1A is a protease (digestive enzyme) which protects tissues from the effects of a type of white blood which can ingest and kill bacteria. It is mainly produced in the liver. In this deficiency an abnormal protein is made by the body which can cause inflammation and damage to the liver. It is a genetic disorder.

Because only a small % of children develop liver disease, most children do not need any form of treatment (if you haven't already figured this out, this would be a wonderful diagnosis...MUCH better than biliary atresia). There is no specific treatment. Supportive treatment is given as necessary depending on the severity of liver damage (I think Carson's liver is still in pretty good shape...liver enzymes came back good). This support will include nutritional supplimentation, fat soluble vitamins and treatment for itch. In the case of advance liver a transplant would be necessary. All children and families MUST be advised of the dangers of cigarette smoking as emphyzema is problematic in adulthood.

We don't know if there will be surgery Thursday morning or not. Any surgery would definitely rule out biliary atresia and Aligilles Syndrome. We might just wait a week for the results to come back on A1AD. We don't want to do anything invasive if we don't have to.

The lump on his neck is muscular, requiring infant massage and physical therapy. It is benign and is likened to wry neck (a stiff neck). More good news.

We have met with a cardiologist and discussed some gameplans for the corrective heart surgery Carson will be having in 4-6 months.

Please leave a message for Carson and also check out the photo album. More updates are pending. Daddy

Friday, June 8
We are now out of the hospital. We just met with the genetic counselor.
Carson was discharged yesterday afternoon; we are staying at his Unlcle Chris' in Bloomington until Sunday for some "R and R"! Grandma Ruthie is leaving today for Fargo and then plans to take her trip to Williston as planned, only a day later than previously planned. Grandma and Grandpa Kitch left for Canada Thursday, and Carson is also awaiting a visit from Uncle Derwin flying in from Kuwait next week! That will be a very special visit!
Carson will see his Dr. in Fargo weekly for lab tests and monitoring his weight, and then return to Minneapolis in one month for a check-up with 3 of his specialists. He is on medication to increase his bile flow...it gives him a little tummy-ache sometimes, but he does pretty well otherwise...gives us all a lot of darling smiles!
We'll try to keep everyone informed via this web-site and/or e-mail and phone calls. Thank you all for your many prayers; We are all going home much more encouraged than when we arrived in Minneapolis, and we know the power of prayer gave us this miracle for Carson!
Love, Daddy and Grandma R.

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