How is Carson?

Services for our Sweet Carson

2012-02-10T15:52:00.002-06:00

Thank you for all the support, thoughts, and prayers. BELIEVE

Obituary for Carson Bowman

Penwell-Gabel Funeral Home (www.penwellgabel.com)

Visitation:

Monday, February 13, 2012 from 10:00 AM to 12:00 PM
Prince of Peace Catholic Church, Olathe, KS

Service:

Monday, February 13, 2012 at 12:00 PM
Prince of Peace Catholic Church, Olathe, KS

Interment:

Oaklawn Memorial Gardens
Olathe, Kansas

Rosary:

Monday, February 13, 2012 from 9:30 AM to 10:00 AM
Prince of Peace Catholic Church, Olathe, KS

Carson Thomas Bowman born on Aug. 11, 2007, earned his Angel Wings on Friday Feb. 10, 2012. He is the son of Jeff and Sarah Bowman, brother to Cameryn. He fought a long hard battle with Menkes disease. In lieu of flowers the family suggests donations to KC Hospice (Carousel Team) 9221 Ward Pkwy Suite 100 Kansas City, MO 64114 or the Menke’s Foundation 23397 Dahlia Circle California, MD 20619. Rest in Peace our sweet angel.

2-8-12 update for Carson

2012-02-08T14:52:00.002-06:00

I am not bringing good news today. In the last month and few weeks especially, Carson has been showing rapid digression of the disease process. Warning, tough words and thoughts to follow.

His brain damage is effecting his brain stem, the control center of your body. We are seeing this through the shutting down of bodily functions. His heart rate has been very low, with times of irregular beats. He has had decreased urine output and bowel movements. With this slowing down, naturally his body is unable to handle much fluid intake. Carson has been requiring more oxygen because he is breathing shallow and has had diminished lung sounds. There have been two days in the last week that we were very worried and could hear God calling our son, however Carson was not ready. We are treating Carson to be comfortable during these times. Please keep Carson in your prayers and that he may have a peaceful and quick journey home to God.

Blessings- Sarah and Jeff

2012-01-09T09:39:00.002-06:00

Carson's Crew has about 20 runners so far that will run in the Oz half marathon in Olathe Ks April 21st.
Want to support Carson's Crew but really don't want to run! No problem! The Crew have arranged for some great raffle prizes!

1. Week stay in lake Tahoe!

2. Two night Stay in Kiawah Island, Sc

3 Flip Camera

The goal is to raise $5000.00 for the Menkes Foundation
http://themenkesfoundation.org/about/mission.html

Tickets are being sold for these great prizes 1 ticket for $5.00 or 5 tickets for $20.00. You can either print your own tickets with the link below or write a check made out to the Menkes Foundation. Send to Sarah Bowman 15821 W. 150th Ter Olathe, KS 66062

Raffle Ticket Link-
https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B2lVBcBgnR2jMGM3Y2E1ZWItNTg1Mi00NzRkLWE5ZjMtYzY2ZDJjMzViZWY5&hl=en_US&pli=1

Week stay in Lake Tahoe Info-
https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B2lVBcBgnR2jNDRkZTUzOTUtNWY4OC00YTgzLTg1NjgtOTA1OTJmOTUyYWI3&hl=en_US

Kiawah Island 2 night stay in 2 bedroom villa info-
https://docs.google.com/document/d/13qUNqlmjxbixx8UwxZuinWH1QEqfwLANk6vU0J8XDaU/edit#

Carson's Crew 2012!

2011-12-27T21:39:00.002-06:00

Here are the details of Carson's Crew 2012! We are increasing the milage.... a 1/2 Marathon! 13.1 miles. Please let us know if you are interested in joining the run! Happy training's!

Dear Friends & Family,

We are writing this letter to share with you a commitment each of us has made. On April 21, 2012, Carson’s Crew will be joining approximately 1200 other runners and walkers in completing the OZ ½ Marathon in Olathe, Kansas. The purpose of this letter is to invite you to join us at this race and of course, the after party!

There are a variety of reasons people commit to the months of training. It could be the exercise, losing a few pounds, getting in shape, or the camaraderie of doing this with family and friends. Whatever the individual motivations for the months of commitment, as a group, we have decided to raise money for the Menkes Foundation. The foundation was formed to advocate awareness of children afflicted with Menkes disease and encourages prenatal genetic testing for neurological related diseases.

In the beginning of the letter, we invited all of you to join us on this marathon. We realize that some of you may not want to participate in the race but you can join us by helping us reach our goal, which is to raise $5000. We plan to raise this amount by having a raffle drawing. The raffle tickets will be sold 1 for $5 or 5 for $20. 1^st place will receive one week’s accommodations in Tahoe, 2^nd place will receive a 2 night stay at Kiawah Island Golf Resort and 3^rd place will receive a Flip Camera. To purchase raffle tickets use paypal on www.carsonbowman.blogspot.com or send a check made out to the Menkes Foundation and sent to Sarah Bowman, 15821 W 150^th Terrace, Olathe, KS 60062. The drawing will take place on April 21^st at noon at Jeff and Sarah’s house. Join us for the race after-party. You do not need to be present to win. The Menkes Foundation is exempt from federal income tax under section 501(c)3 as a non-profit educational organization. All of Carson’s Crew Participants will receive a Carson’s Crew running t-shirt to wear during the race. Extra shirts will be available for $8 during the event weekend. Each runner is responsible for registering for the race themselves at http://www.olathe.org/cvb/sports/Marathon/information_registatration.html.

We thank you in advance for your generosity and for joining us in this marathon to raise funding for the Menkes Foundation on Carson’s behalf.

Thank you and good luck with your training.

Carson’s Crew

Many Blessings

2011-12-27T20:09:00.002-06:00

We have so many blessings to count this year! Happy Birthday Jesus. God blessed us with another year with Carson and to be able to spend Christmas with him and our new addition, Cameryn, was amazing! So many joyful moments. Cameryn is a bundle on the move and you can tell Carson loves being an older brother!

We were also blessed to be able to spend this holiday with ALL of our families. Kari from SC, Becky and Marcos from FL, Jen, Jules, John from MO, the Olathe and the Iowa clan! Loved every minute we spent will all of them! Thanks so much for traveling here to see us!

I have finally joined the facebook world, please find me if you like, Sarah Latshaw Bowman.

We hope all of you had such an amazing Christmas as us! Please look for our New Years cards this year (Christmas cards didn't make it).

Love- Sarah, Jeff, Carson and Cameryn

12-7-2010

2011-12-07T10:46:00.002-06:00

Hello- We are looking forward to the holidays! Can't wait to celebrate with our new/bigger family. So many more firsts are to come. Here is a quick update...

Cameryn's first tooth popped threw yesterday! She loves pushing the kitchen chairs around...who needs a walker when there are chairs around. Carson continues to have his ups and downs. He is currently having 2-3 rough days a week. His digestive tract moves very slowly on these days and Carson can not tolerate any fluid intake, even getting all his meds in can be a challenge. Today is a good day, he is taking a nice nap right now.

God Bless everyone and for everyday we get to spend together!

11-16-2011

2011-11-17T14:20:00.002-06:00

8 months old already! Big brother Carson, all smiles!

WOW!

2011-11-04T19:55:00.005-05:00

It has been way too long from the last update! I guess you can say no news is good news! All has been well, we have continued to have our good days and our bad days. (More good than bad lately).

Thank you again for the amazing birthday party for Carson...each and everyone of you helped make it so very special. I would love to have pictures that you may have taken at the party, feel free to email (sarahn.bowman@yahoo.com) them to me, send them snail mail or just drop them by and say hi!

Carson has begun to react to us again! Smiling and just being wide awake (when he wants, after all he is a 4 year old boy!) His seizures are still down, he has not had any other kidney stones, and we have not had any sicknesses (knock on wood).

Cameryn is growing like a weed, She is 7.5 months! She is all over the place, walking along furniture and behind a walker. Not to mention crawling like a champ, she likes to keep up with all the other kids here. I have caught her looking up the steps wondering 'how do I get up there?' She has also tried to figure out how to climb on the fireplace. Cami is also eating everything, counting down the days to Thanksgiving! She likes eggs, toast and cheese for breakfast. She also likes spaghetti and meatballs! What a go getter...

Jeff and I just celebrated our 7th wedding anniversary! What an amazing 7 years, we have been so blessed and are excited for the future.

Please enjoy the pics!

Updates: June 25, 2011

2011-07-24T21:47:00.002-05:00

Carson’s 4^th Birthday Bash!!

Please help us celebrate Carson’s birthday.

Saturday August 13^th6:00 pm

Bowman House: 15821 w 150^th terr

Gifts not necessary, just help us celebrate.

Bring cold drinks, lawn chairs and cooler weather!

Carson: Follow up to the May 26^th update. Carson’s disease is progressing and over the last month we have had more changes. His urine has been very smelly but had not been coming back with bacteria. So we did some labs on his blood and urine and the results came proving Carson’s Doctor’s thoughts. The brain damage is now affecting his Pituitary gland. His Anti-diuretic Hormone is high making his ammonia levels also very high. The high ammonia levels are why his urine has been very smelly. To help get more ammonia out of his body we have increased his Miralax to increase his stools per day. We have also put a Foley Catheter in, which is a catheter that stays in and is hooked up to a bag so his bladder is able to drain all the time. In a “typical” person, high ammonia levels cause confusion, in Carson it causes him to be more lethargic and he sleeps most of the time. Since we put in the Foley and have increased his daily stools, Carson has seemed to feel much better. He has been awake and does not look uncomfortable. The Hospice nurse just put the Foley in on Friday morning, so we are still learning and adjusting to his new care routines. The blood labs also showed us that Carson has very high sodium levels. We have been able to cut some of the sodium out of his diet, one of his multivitamins had sodium in it and we have stopped giving him a daily dose. We again are taking one day at a time and adjusting to what we need to for Carson. Please keep us in your thoughts.

Cameryn: Our big 4 month old. Her check up went great and the Dr. is very impressed with her strength. The Dr thinks Cami will be on the move soon! We have also started rice cereal with her. She loves it and looks forward to eating two times a day… She continues to love to snuggle and kiss on her brother.

Father's Day 2011

2011-06-19T08:38:00.005-05:00

Happy Father's Day!!

Jeff is enjoying his day. He was up at the crack of dawn smoking ribs, and chicken for us today. Being a father of two is priceless!

The love and joy our children have brought to us has been amazing. Carson and Cameryn love each other so much, it shows how much love each of us is born with. Cami has even brought smiles to Carson's face. Please enjoy your day and hug your kids once more (even if they are not little any more)!

Late May update....

2011-05-26T18:36:00.002-05:00

As hard as this is to write, we wanted you all to know...

We do not have any inspiring updates today, Carson's disease has been progressing. His body has started to require less fluid, we have decreased his water intake by half. With the decreased water he has had less secretions, so we have taken him completely off Robinul. We had been seeing pretty significant water retention. While his body is getting less water and we are seeing the retention go away, Carson has had dryer eyes, mouth and bowel movements. We have been using eye drops and brushing his teeth more to help keep hydrated, as well as more Miralax. Carson has also stopped responding to us, his sister and other stimuli. Although we can not know for sure, we (and the doctors) believe his brain damage is spreading to his brain stem effecting all the autonomic processes. These processes include: heart rate, urination and eye movements. He has not been urinating on his own for about 2 weeks now, we have been having to catheter him every six hours. Carson has pretty much slept this entire week, awake only for a few hours each day that we can tell. As with the last 3 1/2 years we do not know what the future will bring, we are just enjoying every moment. I am looking forward to a week off of work the first of June, I plan to stay at home and enjoy my children. Please continue your prayers that Carson will not suffer and for Jeff and I that we may remain strong as our journey with Carson continues.

More pics March and April

2011-04-28T09:39:00.013-05:00

Cameryn Nicole has arrived

2011-03-21T15:46:00.003-05:00

Here are some first pictures of Cameryn. More to come of Carson and Cameryn.

She arrived on Wed, March 16 at 12:47 pm. She was 7 lbs 6.5 ozs and 19 in long. With the exception of her hair, Cameryn looks just like Carson did! Mom and Baby are doing well and the boys are also adjusting well. Carson loves being a big brother.

Carson and Cameryn Pictures

2011-03-03T08:27:00.002-06:00

Here are the first pictures of Carson and Cameryn...more to come soon, she is due for arrival in just a few weeks!!

2-20-2011 update...

2011-02-20T16:44:00.002-06:00

I know finally an update!

Winter:

We have had a pretty good winter. Carson has been on antibiotics a few times for colds and a UTI. We have stayed out of the hospital!!! (please knock on wood for us) Carson's seizures have been up and down, we have changed meds and have them pretty controlled right now. Tegratol has been gone for a long time. We tried to get him off Keppra as well but got down to 1/2 ml 3xday and had to increase back to 1 ml 3xday, much better than 5 ml 3xday! We have also decreased Phenobarbitol and increased Sabril. We are currently holding strong waiting for warm weather to stay!

Beginning of spring:

We plan to get Carson back in school after spring break when the weather will stay warm also when the majority of germs are gone. All of his teachers and therapists have been coming to the house this winter. We made it to Coco Key Water Resort (in Independence MO) last weekend for Julianna's birthday...we had a blast. Carson went down his first water slide on his cousin's lap! We also enjoyed the lazy river. Carson's current weight is 19.2 kg (42.25 lbs) and 37 inches long. Our big growing boy!

Diapers:

Carson outgrew disposable children's diapers a long time ago. We switched to cloth diapers around Thanksgiving and they have been working much better. Carson holds his bladder until the last minute, so when he goes it is fast and a lot, the cloth diapers hold all it needs too and are bigger than disposable. The diapers we have him in are called FuzziBunz, we do have to add extra inserts in them also. I wash his diapers once a day, much better than the floods we would have several times a day in disposables.

Schedule on side:

We have changed Carson's schedule a while back. With updates in formula, water, meds and timings! Check it out, we have quite busy days! Thank goodness for Carson's nurses. We currently have a nurse 6 days a week, 12 hours at a time. We are looking to fill our Sunday shift.

Baby:

Baby Cameryn Nicole is expected around March 23. She and I are doing great and growing big. I have been told we need to add pictures. I plan to get pictures of Carson and my belly, I will add them as soon as I take them.

I will get some new pics up soon and try to update sooner than 4 months from now.... Thanks for thinking of us and hope to see all soon!

2010-12-07T13:41:00.003-06:00

Happy Halloween!

2010-11-03T12:47:00.005-05:00

Here are some long awaited new picures...we have had a busy start to the fall. We went to the Pumpkin Patch with his class, carved pumpkins, trick or treated, and even caught a few smiles on camera! Enjoy....we sure have been!

Carson gave use several smiles the other day, but of course not for the camera. What a gift...seeing your child smile...it melts my heart every time.
Carving pumpkins. Nurse David is helping!
Happy Halloween!

Roar, I'm a scary bear!
Seriously mom, do I have to....hurry up!
Our big brown bear.
At the KC Pumpkin Patch.
They had this awesome jumping pillow. He kept peeking at me wondering what I was making him do.
EWW this is gross!
Cool seeds.
What pumpkin should I choose?

BIG updates!

2010-09-16T12:08:00.004-05:00

Hello all, we have been working of quite a few changes over the last month with meds for Carson and our family.

First off, Carson's medicines.... we had a blood test a few months ago to check the levels of the medicines in his body. His Tegretol levels were very low, so low they were not doing any good, the Doctors and us decided to wean him off of it completely. Last sunday was our last day on Tegretol. It has been a very good choice for us, we saw no difference in his seizure activity due to the lack of Tegretol and we have seen a drop in his weight! Carson has not lost weight in a long time and very much needed to, as it turns out Tegretol is an antidiuretic (makes you retain water). We look forward to Carson loosing more weight and in turn helping him feel better.

Carson's Phenobartbitol levels were very very high, and concerning to us and his Doctors. We all decided to try and decrease the Phenobarbitol he is on. With in the last two weeks we have tried to decrease it but saw too many seizures. Our next plan is to add another drug called Vigabatrin while we decrease the Phenobarbitol. We hope to have the Vigabatrin started by the end of the week, we will see where that takes us.

With all of Carson's medicine changes we have been seeing him more alert and we have seen many smiles, almost everyday this week! What a blessing to get to see his smile more often.

Carson is doing good in school. One side effect of all the Phenobarbitol he is on is that it knocks him out and has a hard time waking up in school. We hope the new med will help with this as well. He just finished his first full week at school, due to sickness or holidays or Aunt being in town he had not completed a full week before today! Yeah Carson.

OK, and the change in our family..... We are expecting a healthy baby GIRL in March! Carson's going to be a big brother... we can't wait to meet her and let Carson get his hands on her! We did a first trimester testing called a CVS to check the baby's DNA. Eve though I am not a carrier of Menkes we wanted to make sure. The Doctor took some of the placenta and grew the cells for 2 weeks. The results were in yesterday... a baby girl with 46 chromosomes, the number of a healthy baby! We are very excited.

God Bless and thanks for all your continued support! We couldn't do it with out you!

Great Days!

2010-08-31T10:46:00.007-05:00

Here are some long awaited school pictures. Today is his 4th day at school but 1st day to ride the bus. We also went to Iowa this last weekend for a visit and a wedding...great pics with the bride and some new four generation pictures.

Bye Bye Momma and Daddy Loves you!
That is Carson in the 3rd window.
Oh Boy, what is this thing?
Fun ride up with David.
Here we go to the bus.
Waiting for the bus.
Mom and me on my 2nd day at school.
My Para, Angie at school.
What a big school!
Dad and me on my first day of school.
My teacher Joanna.
On my way to school for the first day.
Here we go to school on the first day.
The Bowman boys in front of the Bowman Farms semi.
Four generations!
Us with Grandpa Bowman.
The beautiful Bride, Amy and me!
Bowman family all dressed up!
I sure love my frozen paci! I am chewing on so my lip is popping out!
If feels so good on my teeth!

Update 8-23

2010-08-23T20:50:00.003-05:00

Hello All!!!

We are all good news. Carson is doing great, he had an awesome birthday and enjoyed the cup cakes! (I will have pics up soon) Carson was not able to start school last week because of incomplete paperwork. However, he will start tomorrow...Jeff will take him to school and pick him up this week. (The bus is not ready yet) Our boy is so big! We of course will take pictures of this also! Carson is still enjoying the hot tub it has helped relax him and loosen tense muscles. (Pictures below) We are looking forward to the cooler weather coming. Hope all of you are well also. We will have another update in a soon with more pictures. Aunt Kari is coming in to visit this weekend and Aunt Becky is coming in for Labor Day weekend....oh how they have missed their big boy! They will be so surprised to see how big he actually is!

Happy # 3 bud!

2010-08-11T20:40:00.003-05:00

We celebrated Carson's 3 year birthday today! What a big boy. We did not do anything special, just hung out and snuggled a lot. We did share some frozen yogurt with him tonight, he really liked the blueberry and mango flavors. We will update soon with picts from the party as well as others.

Our big news is that Carson got a hot tub from Make-A-Wish Foundation and Recreation Wholesale for water therapy. We have had it up for a little over a week, but has really been too hot to get Carson in it. He did take a dip with Dad one night. The outside heat is just keeping the water too hot!

We hope to see you all on Saturday for the big party!

Love The Bowman's

Carson's Third Birthday!

2010-07-31T12:46:00.003-05:00

3 =

Carson’s turning the big 3 on August 11! We will celebrate in our usual big way on August 14 at 5:00 pm. Place is in the Bowman’s backyard. Dinner and games will be provided, bring your own drinks.

Please, in lieu of gifts consider (but not necessary) a monetary donation for diapers for Carson. Thank you again and hope to see you soon!

Please RSVP to Sarah at 913-707-7395 or sarahn.bowman@yahoo.com

Happy almost August!!

2010-07-25T19:18:00.002-05:00

Hello All-

Carson is doing well, he got over his cold/allergies. After his extra secretions were gone he had a slight asthma attack and needed some prednisone to get over it. All is great.

Carson has been gaining one pound every two weeks for the last two months. With a little twisting of Carson's Doctors' arms, they prescribed Lasix for one week. This was going to tell us if his weight gain was from water retention or too many calories. With in the one week of being on the diuretic, Carson lost a few ounces as well as cm from his feet and ankles! It was working, so he is now on Lasix twice a day. We will see were we go from here.

We are also getting ready for school, yes that is right, school. Carson will be going to Harmony Early Childhood Center starting in the middle of August. As Carson is getting close to becoming 3 his current therapy services he will age out off, they stop at 3 years old. Carson will be in a classroom with other kids and will get all of his therapies at school. His nurse, David, from here at home, will go with him to take care of him. They will go on the bus to and from school, hours are Mon thru Thurs, 820 to 1120. We feel we owe Carson and the school district the chance to see if this works for all parties. If it does not, the therapists from the school will come to the home to work with him. I am very nervous about letting Carson out of the house and sending him to school, but we have to give him a chance....

We will be updating this blog again this week with Carson's birthday party details!!! FYI Sat, August 14 at 500 pm. More to come.

Happy Fourth of July!

2010-07-06T09:45:00.006-05:00

We had a great weekend. The Bowman's were in town and we all went to the T-bones baseball game on Saturday night and had a blast. Carson was very awake with his eyes wide open, he also loved the fireworks are the end. What a great outing, it was well worth it. Although now we are paying for it, Carson is very cruddy and wheezing. On Sunday night we did some sparklers in the back yard until the rain finally pushed us inside.

Carson has been good the last month, holding is own, he has been back on top of the roller coaster. We hope to get over this cold/allergies soon and be back on top.

Enjoy the pictures and videos.

Happy Memorial day, too many pictures and an update...

2010-05-31T17:28:00.010-05:00

Thank you to all those out there who have and still are fighting for our freedom.

We are all enjoying an extra day at home and just relaxing.

Carson has been well lately. We have seen a few extra seizures with this last full moon, but seem to be back to normal now. Last week we had several tests run on his blood to check all kinds of things. We were mainly worried about his extra water retention, edema. Carson had gained another pound in 2 weeks and seemed to be more puffy. Checking his blood was able to tell us if he needed a diuretic (to make him pee more) or to add more protein (sometimes if the body doesn't have enough protein the water does not move like it should). While we were taking some blood we decided to run all the tests we could. CBC, BMP, Chem 7, liver and kidney function. So any way, to our surprise all his tests came back normal! His bilirubin was a little low, but nothing to be concerned with right now. No meds are needed for his extra fluid, to help get rid of it we are going to do more movement and massaging. We are so happy to hear this great news!!

Just me and my dad.
These kids wear me out!
But I love them.

Cool dinosaur, thanks for sharing with me.

Matthew helping brush my teeth.
Look how big I am!
Me and my new shoes.
I am catching up to my mom.
So cute.
These are my new Crocs...
Look out, they may bite!
Wow, look at these rolls.
Big yawn.
Hair cut with Aunt Jen.
First time using the buzzer, no too sure of this.
But all is good when all said and done.
I was telling Aunt Jen all about it.

Me and my cousins.
Yea, that is the spot.

Happy Memorial Day

2010-05-31T16:09:00.002-05:00

Thank you to all those out there who have and still are fighting for our freedom.

We are all enjoying an extra day at home and just relaxing.

More ups and downs continue...

2010-05-04T17:18:00.003-05:00

The ups and downs have been continuing for Carson and us. The first 4 weeks of April were very rough, he had a hard time getting used to the increased Phenobarbital. He slept pretty much all of those 4 weeks, he had a few hours a day when he was awake. The last week of April Carson was awake the majority of the days, alert and talkative. It was great to play with him! Carson's body temp has been staying pretty close to the 97 mark, our new normal.(very different from last year, when he would get hot very easily) Carson has also had two episodes of very low bradycardia (heart rate). One episode was in the middle of April, his heart rate went to 38 beats per minute, yes 38. This was a very scary moment, but as soon as he was aroused his heart rate came right back up. The second episode was last Saturday (May 1), it dropped to 48 and again as soon as we aroused him, it came back up. All we can attribute this to is he disease and body weakness (due to inactivity and meds), his heart beat has gotten weaker and runs normally in the 80's. To give you a point of reference, a typical boy child his age runs 125 beats per minute. We are still living a day at a time, and loving every minute we have.

OK, OK, take a deep breath....on a lighter note here is a funny story that happened to me over the weekend.

I was doing my usual grocery shopping at a local grocery store. As I was waiting in line, the woman in front of me was paying, the checker being a young boy bent down to wipe/pick his nose with a little piece of paper towel (clearly too small for the job). I was waiting for what a 'normal' person would do, use hand sanitizer! But he did not, all I could think about was that he was then going to touch all my groceries...oh no he was not. I quickly go the sanitizer out of my purse and asked, "Did you use some hand sanitizer (waving mine in the air) after what you just did (gesturing picking my nose)?" The pore boy got all embarrassed and flustered, he had no sanitizer at his check out station, he had the ask the next checker for some. All the while, the sacker, clearly a friend, trying to contain his laughter! I then went on to say that I had a fragile boy at home and I do not need to take any more germs home than I needed. So moral of the story, where have your grocery checkers hands been before they touch all your groceries?

Have a great day and keep us in your prayers...keep looking at the bright side, Carson was sent to us for a reason and has been our blessing!

Happy Easter 2010

2010-04-10T11:58:00.004-05:00

Here are some pictures from Easter. We went to Nana and Papa's for a few hours to visit with family and have an Easter feast.

The Bowman family.

Carson with Great Aunt Stephanie and Great Uncle Ruben.
Carson with Great Grandma Latshaw.
Carson with Great Aunt Karen.
Carson with Great Aunt Karen and Great Uncle Sam.
Carson with Great Grandma Latshaw.
Carson with Aunt Jen.
Here are the original day care kids... all getting so big!!

Addy, Henry, Carson and Matthew.

Rough month....

2010-03-17T19:04:00.002-05:00

Carson has really been keeping us guessing a lot the past month, and not the good kind of guessing.

The first situation is that Carson's body temperature dropped, there were two days where he went down to 93-94 degrees. (Normal is 98.9. 93 borders on Hypothermia). We were very scared. Jeff came home from work to hold him, we had his stocking hat on, and several blankets from the dryer to warm him up. He has since been holding steady around 97. From what the doctors can tell us, the reason for this temperature drop is that his disease is progressing....

The second situation has been with in the past few days. He has been having a lot of seizures, they have been clusters of 'little' seizures and the clusters have been back to back. We don't think he got any sleep on Sunday night, so on Monday night we gave him Roxicet (pain med) to help him sleep and try to break the cycle of his seizures. Tuesday morning he was a little better but by the afternoon he was bad again and we had to give him two doses of Diastat (Valium). We were expecting for that to knock him out...nope....he did not go to sleep until 10:00 pm when we all got in bed. (Yes you can say it, he is SPOILED! But well deserved.) Today, Wednesday, Carson has still been having a lot of seizures, but have not been all back to back. We are not sure if we will need another Diastat tonight, will have to see how it goes....

The third situation is not about Carson. There is another family going through what we did 2 years ago. There 4 month old son was diagnosed with Menkes two weeks ago, they live less than 5 miles away. Jeff and I have been in contact with them, actually they came over to our house a week and a half ago. We are glad that we are available to help support them and help with questions they have. We will be seeing them in the future again and hope to become friends....

That is about all I have right now...I am sure I am forgetting something.

Carson's Crew is back again in 2010

2010-02-12T14:41:00.002-06:00

It is that time again...Carson's Crew is back again in 2010 for the Trolley Run to support The Children's Center for the Visually Impaired (CCVI). Please register under our team, Carson's Crew, and the shirt you will receive will have the team name on the back.

www.trolleyrun.org

You can also visit our fundraising site at:

http://public.mysportsnetwork.com/kcsc/sabateseyecentersTrolleyrun2010/TeamFundraising.aspx?tid=4175

Happy Half Birthday Carson...2 1/2!!!

2010-02-11T09:41:00.004-06:00

Carson is getting to be such a big boy. I can not believe he is 2 1/2 already. We have been talking about getting him in school...when he turns three he will be transitioned from our at home therapies to the school district. I am both excited and scared about this! I know it will be great for him, but I don't want him to leave...

Our tonsil and adenoid ectomy was much more of a success then we had thought possible. He is off oxygen at night completely. We are still keeping track of his numbers and so far he has not dropped below 91% O2 saturation's at night. This is an amazing feet! We are so proud and excited that the surgery helped so much!

Carson just keeps growing and growing. He was just over 35 pounds when we in for surgery. So when we in the hospital after surgery, the dietitian reduced his feeding by 10%. So he was getting 160 mL 5 times a day, reduced to 150 mL 5 times a day. We just recently had to reduce his feedings again. We reduced him to 140 mL 5 times a day. Because he had gained another pound in one week. Carson now weighs 37.2 pounds and is 35 inches long. What a big boy. As we have been reducing his formula feedings we have also been increasing his water intake...we do not want him to get dehydrated.

With all of this growing, Carson has had more seizures...it make sense though, he has out grown his previous medicine dosing. The end of last week we increased his Phenobarbital, Carson is still getting used to the increased amount and sleeps most of the time. However during his awake times he has less seizures, big and small ones!

All is well and we are looking forward to getting out of this winter time and into spring time so we can get outside. Jeff and I are also well, we are very happy with Carson's progress and excited for what is to come in the future. We have been making Friday nights our family dinner and movie nights, we make dinner and eat it on the couch with a movie. Carson also enjoys these movie nights, he gets lots of snuggling!!

Complete Recovery

2010-01-24T18:29:00.003-06:00

Already we can see (and hear) a difference in Carson. After just 10 days Carson is breathing so much better and is requiring less oxygen. We are going to give him one more week of oxygen all night long, then start monitoring him off of oxygen to see if he can go without. We believe that the scabs are gone, and Carson has healed completely. Having his tonsils and adenoids removed was the right decision for us, it was worth the worrying.

Carson is much more alert during the day and seems to feel better, than before surgery when he was well. Most of the pictures below were taken today...enjoy, we sure are!!!! Thanks for all your support and prayers.

Carson's 1/2 birthday is next month (Feb. 11), he will be 2 1/2, he is so big, I can hardly believe it! We are so proud if Carson....

The whole Latshaw family was together this weekend. Got some good pics.

Resting at home

2010-01-17T16:53:00.003-06:00

We came home from the hospital Friday afternoon about 2:00. Carson has been resting ever sense. He has been in pain, even on Tylenol with Codeine every four hours, but sleeping through most of it. Today Carson was awake a little bit more and feeling better, but is having more pain now and also has a pretty high fever. We are planning to give him a bath to reduce the fever...if that does not help we will call the Doctors. Will keep you posted. Not too worried at this point.

UPDATE

Carson is doing just fine. We got his fever under control here at home, it ended up that we were not giving him enough pain meds. We all feel terrible... Carson is well and having no pain (it seems). Carson has been awake the majority of today playing and talking with us. :)

resting comfortably

2010-01-14T19:07:00.003-06:00

Surgery went great. It took about 20 minutes, the surgeon said it went as well as she would have wanted for her children. Carson came through surgery and recovery just fine. We have been resting in our hospital room all day, Carson has been sleeping the majority of the day. We are on a strict schedule of pain meds every 4 hours. If all goes well tonight, after rounds in the morning we will be discharged and should be home by lunch. Below are current pics of him resting.

Not so fun in the snow...

2010-01-08T17:05:00.003-06:00

2010-01-08T16:02:00.002-06:00

like father like son
family christmas pics

merry christmas

tonsils and adenoids...

2010-01-06T19:35:00.002-06:00

We are going to have Carson's tonsils and adenoids out. The surgery is scheduled for January 14. I know that is next week, I am getting a little nervous. At this point with the results of the sleep study (see below), we, along with the Drs, feel the benefits out weigh the risks. Please give us extra prayers and send us extra love. We do have extra home nursing approved for after surgery, we will have a nurse here for 22 hours a day for 10 days after surgery.

The sleep study results were:

Carson is in deep sleep 85% of the time. This is how newborns and premies sleep, he gets very little REM sleep. This is all very typical of neurological patients. Because he is in a very deep sleep he has very little apnea episodes. Although the apnea episodes were difficult to distinguish, the Dr counted 8 apneas total, all night. This again is typical of neuro patients, having one episode an hour, this is a very low rate. The Dr also noticed some upper airway resistance: his tonsils and adenoids are large, also his floppy muscles play a role in this. Carson's breathing is very shallow and is considered a paradoxical breather (a tummy breather). The best thing we can do for Carson right now is what we are doing, keep him on oxygen when he is sleeping. We are also hoping that the tonsil and adenoid ectomy will help.

NEW YEARS:

Jeff and I were able to take a short vacation over new years to help de-stress. We went to South Carolina, where Jeff's sister, Kari, is. Our Friends Steve and Christy Anthofer met us there. We had a blast. Jeff and Steve were able to play golf on the ocean course while Christy and I spent a few hours at a spa. We were also able to close some bars down a few nights in a row, something we had not done in a few years. We were ready to come home and see our baby, but not ready to get back to the snow.

We love you all and will keep you updated as much as we can.

December...

2009-12-16T15:26:00.003-06:00

We have celebrated one Christmas already, with the Latshaw's. The first weekend in December Aunt Becky came in from Florida (we missed Marcos, wish he could have made it.) and Cousin Julianna came in from Wichita. We had a great time with all our family. We also had an unannounced visitor, Santa Claus came to our house on Sunday, 12-6. We are celebrating another Christmas this weekend, with the Bowman's. Aunt Kari is coming in from South Carolina. And the Bowman crew from Carroll. We are so very lucky to have a family that will come to us, as it is not easy for us to travel.

We have had a lot happen, to make a long story short, we are going in for a sleep study tonight at Children's Mercy South. This will give the ENT much information about his obstructive sleep apnea and how many time he de-sats (oxygen decreases) during the night. We already have a tonsil and adenoid ectomy surgery on January 14 at Children's Mercy Downtown. His tonsils are very swollen, hindering his breathing. With this surgery our goals are to help Carson breath better (obviously) and to decrease our need for oxygen while he is sleeping.

We will keep you updated as we learn more....

Love The Bowman's, Happy Holidays to all!!!

We made Ginger Bread Houses this year. Carson was very proud of him self (I was also proud!)

A Santa Claus blessing.

Just settled in for a long winters nap....

Happy Thanksgiving....

2009-11-30T16:13:00.002-06:00

We had a great Thanksgiving. Here are my three things I am thankful for....

For my Husband, Jeff, and for his love to me. I could not do what I do with out it.

For my family, friends and complete strangers who give us there love, affection, thoughts and prayers each and every day.

And most of all for my Son, Carson, he has taught us so much and for each and every day we get to love and cherish him here on Earth.

We spent Thursday at Aunt Jen's house, of course stuffing our bellies with amazing food. Friday afternoon the Bowman's came in from Iowa (G-ma and G-pa Bowman, Rob, Arica, Bryce, Brynn, Bailey). We had another Thanksgiving feast on Saturday. It was great to see and spend time with everyone.

On Friday, we took Carson to the Dr. he has tonsillitis again, and an ear infection. So we are on antibiotics again. We are scheduled to see an ENT on Dec 9 to talk about tonsillectomy. This would be more for his Obstructive Sleep Apnea (Carson will have episodes where he is trying to breathe, but his airways are closed. His air ways usually open up pretty quickly.). This will be a big decision for us....we are definitely going to do all our research first and see if we absolutely need this surgery.

We are very much looking forward to this weekend as well. Aunt Becky is flying in from Florida (we hope Uncle Marcos can also make it). We will celebrate Christmas with all the Latshaw's!!

A long awaited update...

2009-11-22T12:13:00.008-06:00

The last 2 months have been very challenging as Carson has been sick for the majority of it. Soon after my last post Carson started having crying spells. He is a kid who never cries, so when he does, there is something terribly wrong. We went through the list of what could be hurting, making him cry: pain with seizures, teeth pain, stomach pain, H1N1, C-dif (bacterial intestinal infection).... Mortin and Tylenol would not even touch the pain he was feeling, we had to give him Tylenol with Codine and Roxicet to give him a few hours of relief. We ended up at Children's Mercy ER on Halloween morning and was diagnosed with Tonsillitis, we were sent home with nothing they could do. A week later, Carson's pediatrician gave us some antibiotics, helped the throat, but gave him terrible gas, the kind with double you over cramps. We stuck it out and finished the antibiotics while also giving him extra strength Gaviscon for the gas. Just this last Wednesday Carson started getting back to his old self!!! (During the last 2 months, we had to stop playing and pretty much moving him because his pain was so high, or he just felt like crud and did not want to move). Carson has been playing with his bubbles and other toys again. What a relief to have our 'old' Carson back. Our stress level was getting pretty high!

Friday (11-20) we had our annual check up with the neurologist. Dr. Graf and his nurse Courtney was very pleased to see how well Carson has been growing and how he looks. However, they of course still conflicted, as we can not get all of Carson's seizures to go away. We have decided not to change anything at this time. We do still have plenty of growing room with the Neurontin.

Today he has been smiling a lot for us, we caught one with the camera so far. So great to have Carson back and feeling well!!

We love you all and are thankful for every one of you!!!

Funny Carson

2009-10-26T10:08:00.002-05:00

Our routine in the morning is to get up at 5:45 am and start his meds and bottle and change his diaper, on the weekends we then go back to sleep. Saturday morning Carson did not even stir during this routine, except when I went to change his diaper. With out even a blink of the eye or a movement, Carson let out this loud sound, EEEEEEEEEEEEEEEEE. You know that sound the sound your kid or spouse gives you when they are sleeping and do not want to be bothered. Carson's sound clearly said, "Leave me the h*ll alone!" I could do nothing but laugh. :)

Tent fun

2009-10-22T15:05:00.005-05:00

It has been rainy today. We got out the tents to play with, here are some pics of Carson and the kids playing together. Carson is doing better each day, today was a great day, lots of playing and has been wide awake and enjoying the fun.

We talked to the Neurologist today about Carson's increased seizures. He has been having at least 6, what we call Grande Mal seizures, a day. During these seizures, Carson is shaking, holding his breath and turning blue, the duration on each individual seizure is an average of 20 seconds. These seizures wipe him out. Carson's neurologist would like to add a drug called Neurontin, this will help with seizures, nerve pain and his stiffness. Please pray that this is a good drug for Carson and that it works well. We will be starting it tonight.

New Schedule

2009-10-19T08:02:00.002-05:00

I have updated the schedule on the side.

We have decreased his formula and increased his water, he was getting too big too fast. We have also increased his breathing and shaker vest treatments.

I am always available for questions if you have any....sarahn.bowman@yahoo.com

Still recovering...

2009-10-18T10:35:00.004-05:00

We have been taking it as easy as we can the last few weeks. Carson is getting better but very slowly. We are still using oxygen every night, it helps us get better sleep, because Carson's O2 saturation does drop down when he sleeps. We are still on breathing and shaker vest treatments 4 times a day. Carson had his last doses of antibiotics today...thank goodness because the diarrhea is getting pretty bad (we have been doing a lot of laundry). Carson is still very cruddy at times and needs suction a lot. He has been coughing up white mucus, we had a thought that it could be his formula, that is fundoplycation was failing and he was refluxing and aspirating his formula. With doctors approval we did an experiment, we colored his formula for 24 hours a bright blue. So if he were refluxing and aspirating, his mucus would have been blue. Great news!!! his mucus stayed white, his fundo is still in tact and no reflux!

We had family pictures taken yesterday at the Overland Park Arboretum. It was a bit chilly but all in all a beautiful day. The pictures will be back in a few weeks and will post them so you can see just how big our little boy is getting.

Thank you for all the thoughts and prayers, please keep them coming, winter is only beginning. We are of course hoping for a very healthy winter and to stay out of the hospitals and doctors offices until spring (at the earliest).

Love the Bowman's

A touching story.

2009-10-10T16:24:00.004-05:00

Past-

If you can remember when Carson was first diagnosed, we had an amazing team who help diagnose Carson. Now also remember, Children's Mercy is a teaching hospital, so the team consisted of students, interns, attendings and Dr's. Due to our emotional situation, diagnosis and new life ahead of us, we made some special bonds with the team. One in particular, Jessica a student (at that time), wrote a very nice thank you to us for letting her be part of our story. So we were sent home, said good bye to the team and only had a few thoughts of those who helped us and how special they were. (We also had just a few other things on our minds)

Present-

On Saturday as we were in transit from Olathe Med to Children's Mercy DT, a room and bed was getting ready for Carson. As the hospital was assigning Carson to a team, a Dr heard that a boy with Menkes was coming in. That Dr immediately asked if it was Carson, it was!! Carson was going to be put on a different team, but this Dr said oh no, that boy is mine, I want him on my team. As I am sure you know where I am going with this....the Dr's name was Jessica. That is amazing in itself but the story goes on.

(We knew nothing of the above story)

As Carson, Jeff, Nana and I were walking into Carson's room, a Dr walked in behind us, nothing unusual, but upon second glance we recognized her, Jessica. With eyes turning red and starting to tear, we shared a hug and a rush of emotions from the past. As we caught up a little she informed us that she had just asked about Carson the day before...it is amazing how those Drs know.

Jessica also told us that when we had first met her as a student she was in line to become a surgeon (no where near pediatrics). It was after she met and helped to diagnose Carson that her life changed completely, she knew then her calling was pediatrics. She finished schooling for peds and was asked to write an entrance paper when applying for a job at Children's Mercy DT. Jessica's paper what about Carson and how he changed her life.

As a mom with a special needs son, and a rare disease, I hope that we do change peoples lives. I know that we do, but to hear about it and to see it, is a whole new level of emotions. It was great to see Jessica, how successful she is and to work with her again, we knew from the beginning she was an amazing woman. We will not lose contact this time....

At home

2009-10-06T13:09:00.003-05:00

We got home today at about 12, noon. Carson has not stopped talking since, it is great to hear him just a blabbering away...I can only imagine what he is telling us.

Will give more of an update later. We have got an inspiring and touching story for you!!!!

home ward bound

2009-10-05T16:07:00.004-05:00

The doctors agree that Carson needs to go home, all children recover better at home, especially since we have everything at home we need. Carson is going to finish out today and tonight in the hospital and as long as he does not require any more oxygen, they will send us home tomorrow morning. He is still needing 3/4 of a liter of oxygen, everyone is comfortable with Carson going home on oxygen. Will keep you posted.

Just resting

2009-10-05T08:31:00.003-05:00

We are still downtown at Mercy. Carson is improving, little by little. His fever is down. He is still on oxygen and is in need of the strong IV antibiotics for another day to a day and half. I am going to do my best to talk them into sending us home, even if he is on oxygen (we have it at home). Carson is no longer coughing up blood, and is breathing much easier. He asthma is under control. It is just a waiting game at this point....

Home from vacation straight to hospital

2009-10-04T11:21:00.003-05:00

Well we made it home from vacation, Saturday afternoon. When we got home, Carson started coughing up a little bit of blood. That was all I needed to take him to the hospital again. We went to Olathe Medical ER to start (easier to be transferred to Children's Mercy than walk in).

We checked into Children's Mercy downtown Saturday evening. They are saying right now Carson has 'Complicated Pneumonia' they want to keep him for a few days to do some strong IV antibiotics and get his asthma and breathing under control.

Sunday morning, Carson is still coughing up some blood, and is having a hard time breathing. Carson slept very well last night and most of the morning. He has been on a little bit of oxygen all night and today. We are just hanging tight, trying to relax and getting Carson better so we can take him home.

Will keep you updated as much as possible.

Sick update

2009-10-02T20:36:00.002-05:00

The tests results from Thursday are in (some of them) H1N1 came back negative. Blood cultures were clear also. We are still waiting on the stool test to come back. So we thought we were all good to go on vacation.

All was well until Wednesday, Carson woke up with a slight fever, 101. We nursed it and waited for 24 hours hoping it would go away (we talked with the pediatrician also). Thursday he woke up worse, very close to 105, hard time breathing. After talking to our doctor in KC again, we decided to take him to the local ER. There he had more blood tests, his white blood count was up again, to 14. He also had another chest x-ray, came back negative. What the ER Dr, pediatrician and us decided was that the Amoxacillin was just not working. Carson was given another Rocephine shot. We also started him on Prednisone, he has been having asthma attacks. On Friday we went back to the ER for another Rocephine shot, we also got Tylenol with codeine for him (he has been just miserable). He of course is wiped now and we will get home tomorrow just fine. We will see how he is tomorrow and go from there, if we need to check in with the pediatrician or go to Children's mercy or are fine and will stay home.

Please keep up all the prayers, we can use as many as possible at this point. It is too early in the winter season to be having these health issues.

Thursday and Friday at the Doctors...

2009-09-26T21:13:00.002-05:00

Thursday morning (9-24) Carson woke up with no (I mean absolutely no) color in his face, not even his lips, he was chalky white...very scary. The first thing we checked was his O2 levels, they were fine, he was at about 93%. We took his temp. 102 axillary, pretty high. He had also been having diarrhea the last few days. (We did not think much of it as we had been giving him pear juice.) We called his pediatrician, she of course wanted to see him. We spent 2.5 hours there, checking blood and flu. His white blood count was sky high, normal is between 5-7 Carson's was 31!! He has a major infection of some kind in his body. The pediatrician wanted to admit him to the hospital right away. We of course did not want to do this, so we opted for some tests at Children's Mercy. They tested him for N1H1, did a stool test, blood cultures and chest x-ray. The chest x-ray came back negative for pneumonia. We do not have the results from other tests. They gave him a Rocephin shot at the dr, and put him on Tamiflu and Amoxicilin. Carson's white blood count was down to 10 on Friday. Thank the Lord, we did not have to be admitted and he recovered as fast as it came on. Though we are not sure what the infection was. I will post what the other test results were when we get them.

more fun

2009-09-21T12:44:00.003-05:00

Painting with the boys. Carson had a blast!!!

Carson at The Berry Patch, picking blackberries with mom, and friends Becky and Selia.

update

2009-09-18T20:05:00.006-05:00

We have been busy...here are some updates.

Last Saturday, Nana, Jen, Carson and I made the trip to Wichita to cheer Julianna on in her volleyball games. Here are some pics, we had a great time, Carson was very vocal and loved cheering his cousin on. He did have ear plugs in because as you know, the gym gets very loud.

The nutritionist came to check on Carson and how he was doing with the increased food. He is growing and a lot...he know weighs 31 pounds 8 ounces and is 34 inches tall. He is doing great!!! We also got a new chair for Carson. It is called a Versa Form, it starts as a square bean bag and you form it how you want and suck out the air so the beans then do not move.

We took Carson to the dentist today to see if they could help us with his teething. Since Carson does not use his teeth he is having a very difficult time cutting teeth. He has been trying to cut his K-9 teeth for over 6 months know. They are swollen to larger than peas and black and blue. So painful, the dentist said that all looks normal, he said what we are doing is all we can. We are going to use the frozen teething rings more, this will help break the teeth sooner.

Labor Day Outing...

2009-09-07T14:50:00.003-05:00

We had no kids to watch for the Labor Day. So we decided to get a group together and go to the Overland Park Arboretum and Botanical Gardens. There were 4 total families and Carson's nurse, Jen, in our party. We had a great time...when we first arrived the fog was just beginning to clear and things were still covered in dew. So beautiful!! Carson did awesome and we even caught him opening his eyes behind his glasses. He felt many new textures, heard new noises, and smelled new smells. He had so much new stimuli that you would think he would have had extra seizures, in fact it was just opposite...he did not have one seizure while we were in the Arboretum!!! Maybe on the days we are at home and he has many seizures, he is just bored?!? In the pictures below see the beautiful wild life; frog, flowers, web. Also see if you can pick Carson out of the jungle. We had an amazing morning!!!

Love- The Bowman's

Fun Times...

2009-09-04T10:55:00.003-05:00

We are having fun today!!! Carson woke up in the best mood, just talking and looking around and his Bowman smirk smiles!!

pics

2009-09-03T13:26:00.004-05:00

Feed me....

2009-08-31T15:39:00.002-05:00

Carson has been telling us to feed him more!!! OK, so it was actually the pediatrician and nutritionist that said Carson needed more calories. Carson used to get 25 total ounces all day and now he gets 32 total ounces. He is taking the change well, he is not having any tummy aches. He actually seems to be more aware...like the nutritionist said, "calories are energy." (Carson's updated schedule is on the side of the page.)

Carson went on a run with me last night, in his Jeep stroller. I put his MP3 player in with him and it seemed that he was singing with it, most of the ride. I also asked him how he was doing and he answered in his own way telling me he was having fun. Who would have imagined that on August 30 at 5:30 in the evening Carson would need long pants, a sweatshirt and a blanket to go on a run. It was such a beautiful evening.

His seizures have been ok. We are still having 20+ a day. He has started this new thing that we are calling episodes right now, we are not sure what they are, if seizure or if he is trying to tell us something. He will go into a whole body extension then holler at us, it is not a cry or scream, just a holler like he really wants us to know something. There is not a jerk or shake that proceeds or follows this, that would be a sure sign to us that he episodes were seizures. Carson's neuro (Dr. Graff) has increased his Clonazepam temporarily to see it it helps his episodes. So far it has not helped.

Carson is sleeping through the night, and likes to sleep in on the weekends. We have been having to wake him up at 8:30am to get his shaker vest and breathing treatment going before the 9:00 bottle.

2 years of precious moments...

2009-08-13T08:56:00.004-05:00

1rst day of life.
365th day of life.

730th day of life.

Happy Birthday!!!

2009-08-11T08:09:00.003-05:00

Carson has been such a blessing in our lives, he is definitely the love of our life!!! Here are some pictures of the Birthday boy this morning in his pajamas. Cheers to the first two years and many more to come with our big boy.

We will update you later with pictures of our birthday celebrations!

Best Video in months!

2009-08-02T11:46:00.005-05:00

Its been a very, very long time since we have seen Carson laughing. We were trying to figure out the last time he laughed and were thinking well over 7 months ago!!!

Enjoy the video!

Mom was outa town and came back with a few gifts and Carson loved the dolphin and started smiling. Notice Dad spiked up his hair after his bath.

update 7-29

2009-07-29T15:08:00.004-05:00

OK so we have had some interesting few days lately.

Last Thursday July, 23, we took Carson to the Urgent Care at Children's Mercy. He woke up with a 103 degree fever, very green mucus and was having difficulties breathing. They took blood and ran many tests on it, they did a chest x-ray on him and all they were able to conclude was that his white blood cell count was high. The chest x-ray showed viral with out pneumonia, so they diagnosed him with a lower respiratory infection. They gave him a 20 minute IV of Rocephin (very high antibiotic) and sent us home with Amoxicillin. Both of course these gave Carson really bad diarrhea. His poor tush was really red, we seem to have it under control now, we used Aquaphor by Eucerin. With all the extra congestion, Carson's pediatrian and Nuero wanted to start him on Robinul. Jeff and I are skeptical of this drug, we also tried this drug in early Dec, which we think helped send us into a large asthma attack and started the hospital stay and the NG tube. But we are going to try it again, we know he will not get dehydrated this time because of the Mickey button.

Friday July, 24, we took him to the pediatrician for a follow up. His white blood cell count had decreased by half! This right there told us it was not viral. The rest of Friday, Saturday, Sunday and Monday were uneventful. We gave him more Probiotics to help with the diarrhea and made two of his bottle with Pedialyte instead of water, to prevent dehydration. We decreased the Robinul because he was coughing with a lot of crud, but nothing was coming out.

Tuesday July, 28, Carson woke up cruddy and was wheezing again. We stayed home and did what we could here. We started the Orapred (asthma steroid) and gave him extra breathing treatments. Diarrhea is finally getting better.

Wednesday July, 29, he is still cruddy and wheezy, but the steroid is starting to help. Carson has been coughing a lot out on his own! The Robinul getting out of his system might also be helping.

We are hanging in there...

July 22 update

2009-07-22T20:07:00.005-05:00

This is Mom updating. We have had some good times and some not so good times. Carson is always getting loved by someone. (I think sometimes, he just wants to say enough, get away. He is such a good sport.) We have really been giving Carson a lot of textures to feel and play with lately. We got some real fur samples (Alaskan Fur donated them, THANK YOU!!) I do not have a picture of it yet, but he really likes how soft they are. I have also bought him fishing worms, they are bright green! Miss Kim, Carson's vision teacher, was playing with him with the worms and Carson would not let go! He was playing tug of war with Kim...it was hilarious. I will work on getting pictures of these this week.

Last friday, Carson had an asthma attack, we got his breathing under control with an extra breathing treatment and a few hours of oxygen. He spent the rest of the night coughing up flemn every 5 minutes. Carson has also been having more seizures. They have been waking him up at night, making him cry as he can feel them come on. We have also been seeing grande mal seizures, his limbs shake and he holds his breath threw them. Talking with the Dr today, we have decided to increase his Keppra.

The Dr said that Carson's Keppra levels are low compared to how much he is taking. He is wondering if Carson's body is just not absorbing it or if we need to increase his doses. So we are going to try the later. We are very hopeful that this will work so we do not have to add a 5th seizure med.

Carson is still growing like a weed!!! He is so close to 29 pounds. He grew 8.5 ounces in just 2 weeks! We are looking forward to him growing taller in the next month! He is currently in 2T clothes and we are looking at 3T clothes this late fall and winter. He is also in size 5 diapers...what a big boy!!!

Henry loves to read to Carson. He also likes to make sure Carson sees the pictures. Handsome boys...they could be brothers, does anyone else see it?

Who said slobber isn't cool?
I am such a big boy. Look at me holding my head up!!!

Henry loves Carson so much. He is making sure all is well with Carson.

Update

2009-06-29T14:25:00.003-05:00

Wow have we sure had some hot weather here. Several days of a heat index of 110 as well as ozone warnings. With all of this weather Carson has been battling with more congestion in his chest. This weather is not good for any one, especially with asthma. We have been giving him extra breathing treatments and ordered a Shaker Vest. The vest was actually delivered today. We are hoping that this vest will help him clear his lungs easier and better. We will keep you posted!

However, we have not let all of this stop us...we are still having plenty of fun! Enjoy the pics, he is getting big. Carson's dietitian came today, he weighs 28#5oz, is 33 in tall, and his height/weight proportion is 90%. Carson is definitely on his way to being bigger than his mom.

We are staying busy!

2009-06-21T18:19:00.005-05:00

What a busy start to our summer! We have loved every minute of it. We made a trip up to Iowa to visit with family and friends. We have played in the sprinkler and have gone swimming. We participated in my sisters wedding. And of course we celebrated Fathers day! Please see all the pictures below....

A day off...and out of the house!!!

2009-06-05T07:23:00.006-05:00

On Wed we had the day off, no other kiddos in the house. So we went for an outing.... Mom (me), Carson, and Jen (nurse) went to the local petting farm, it was amazing! Carson was so alert and just soaking everything in, you can see this in the pictures. Look at his eyes and his mouth, he was talking to me in some of the pictures. I hope you enjoy the pictures as much as we enjoyed our outing. Deanna Rose petting farm was made with all children in mind, they have signs in braille and many other textures available for feeling. It was great exposure for Carson.

Feeling a deer antler.

The Native American hut were we got to feel many new textures. His favorite was the rabbit skin, you can see him talking to me about it, it was so soft.

Feeling the rabbit skin.

Feeling the bison horn that was hollowed out to be a spoon.
We went inside the goat pin and they were all over Carson. The goats were chewing on his pants and trying to eat everything in his kid cart. It was hilarious!!!
We had a blast feeding the goats, I was putting the food on Carson's knuckles and the goats were eating it off. Carson did not pull his hand away, he loved it.

update 5-31

2009-05-31T09:22:00.005-05:00

Hello all-

Thought we would give you an update. Carson just cut his 5th tooth yesterday! He now has 3 teeth on the bottom and 2 on top. (The new one is on bottom right.) We are very glad that nice weather is here. We have been getting Carson out at least once a day. We have been using the allergen blocker (gel you rub on nostrils and upper lip) it seems to help. He has been having more seizures lately, we are working on medicines to get them under control a little more. We have noticed that he has been having seizures all night long and we think that lack of good sleep at night is creating more seizures during the day. We have been giving him a dose of Mortin and 2 mls of extra Clonazepam right before bed, hoping it will help him relax and sleep better. It seems to be working a little but really the change is too early to tell if it is working. We are also getting excited for Aunt Becky and Uncle Marcos' wedding coming up in a few weeks! We love you all and hope that the start to your summer has been wonderful! Please keep us in your prayers.

PS- All of his blood work came back normal! (from May 1 update)

BUBBLES!!!!

2009-05-14T15:29:00.013-05:00

The trouble makers of the day care...everyone is getting so big!!!

(from left to right, Matthew, Henry, Carson, Addyson)

We all love the bubbles.

Finally got the bubble machine on video. It is a long video but worth it...

WE NEED YOUR HELP!!!

2009-05-12T19:26:00.004-05:00

We need your help to save Carson's services. We need you to all come together again to help us. As you know the economy is not doing so well, the state of Kansas is cutting the funding for special education. This includes cutting funding to Infant Toddler Services (ITS), they supply all of Carson's services; this includes: occupational therapy twice a week, vision once a week, nutrition twice a month and family service advocates. This not only affects Carson, but many other families as well. All you need to do is write a letter to the Kansas Legislature and tell them how Infant Toddler Services of Johnson County has affected your life. Below is the postcard I received from ITS, it helps explain a little more and gives the email address to send your letters to. PLEASE HELP US AND MANY OTHER FAMILIES BY WRITING A SIMPLE LETTER.

________(letter from ITS)

I received an email on April 28, 2009 that the funding for special education may be cut once again. This cut will impact our FY 2010 budget with over $500,000 reduction. General education funds for public schools are also being cut. I ask that you contact your legislator and share your story of how Infant Toddler Services has made a difference in the life of your family and your child. We, at Infant Toddler Services, are committed to providing quality service to the families we serve despite the cut to our budget.

Log onto http://www.kslegislature.org/ to locate your representative and senator. Things are changing on a daily basis so we ask that you contact them immediately.
Thank you for your help and support.
Sincerely,
Amy Owens, OTR/L
Executive Director

________(contact info)

Kansas State Board of Education
John W Bacon

Kansas Senate
Senator Karin Brownlee

Kansas Legislative Hotline
in-state 1-800-432-3924
out-of-state 785-296-2149

Kansas State Capitol
300 SW 10th Street
Topeka, Kansas 66612

THANK YOU!!!!!

Quick update

2009-05-01T17:20:00.010-05:00

Carson is growing so much lately. He is starting to have more seizures, which are lasting a little bit longer then normal. Dr. Graf would like him to come in to Children's Mercy for some blood work to check on levels. Luckily the hospice team will be able to come out to the house and do this for him so we don't have to take him anywhere. This will also keep him from getting any unwanted sickness in the hospital.

Carson has also had some great days. He is smiling and responding more...especially to his mama. Today (May 1) I was giving him big bear hugs and he would respond by smiling and cooing...so great to hear and see this. He has also been playing with his bubble machine (Easter present) we hooked it up to his big mac button, so he can turn the bubble machine on by him self. He does know that he is in control of it because when the other kids ask him for more bubbles, he will push the button. He will also push the button when the machine is off to turn it back on. Very cool, we are working on getting this on video.

Last weekend. We had a very busy weekend. Aunt Becky came in for her wedding shower and other parties. Aunt Sue, Grandma Moranz, Grandma and pa Bowman, Uncle Rob, Aunt Arica and cousins Bryce, Brynn, Bailey Were also here this weekend. After all the parties were over we all went on the Trolley run/walk on Sun. There were some 10,000 people there! Thanks for helping support CCVI. What a weekend, it was great to see everyone...we are still recovering from the sleep deprivation. Oh well it was fabulous.

Trolley Run/Walk, Carson's team!!!

2009-04-06T19:28:00.007-05:00

We have created a team for this run/walk to help support The Children's Center for the Visually Impaired (CCVI), a phenomenal facility and service. We have personal ties to CCVI, Carson gets weekly visits from them for vision therapy. Below is the information to sign up for the run/walk under Carson's team. We are signed up for the last wave, the stroller walk, and hope to see you beside us!

All proceeds will go to The Children's Center for the Visually Impaired.

You can register to run or donate to CCVI on the website link below--
www.trolleyrun.org

Team Leader: Sarah Bowman
Team Name: Carson's Crew
Family Number: 503 (which is located on the on the bottom of the registration page)

Thanks again for your support and prayers!!!

new pics and an update

2009-04-02T20:50:00.007-05:00

Sacked out boys.
Ornery boys.

Cool boys.

WOW, look at all the bubbles!

This is so cool.

Just a few pictures to update you of all the fun we have been having.

Carson had a rough month in March. We had to hook him up to oxygen several days for only a few hours a day...he was having a tough time breathing and his O2 sat dropped to 84, that was the lowest we saw. However, because we have O2 tanks at home, we did not have to go to the hospital...this helped a lot. Jeff took Carson to the pediatrician on March 31, we had to use O2 several days in a row and Carson was not getting better on his own. The Dr. put him on a steroid called Predisolone for 5 days to help him clear out his lungs. He was not ordered to have a chest ex-ray at this time (to look for pneumonia and RSV) as he had not been running a fever. We are watching this very carefully, Carson is getting better by the day, we did not use any O2 today (4-2).

Carson also had some bad seizure days in March, we think this was due to switching his Phenobarbital from a compounded liquid to pill form. The body can metabolize them differently. We are in the process of switching back to the compounded liquid form. In the mean time we have increased his Clonazepam to control the seizures a little better. This seems to be working for the time being. For a while his seizures would wake him up about 3:45 every morning...needless to say, Mom and Dad did not get much sleep during this time...we are still trying to catch up.

We have also had some very awesome days...he loves to play with the bubbles and to feel them pop on him. Carson also still enjoys his baths. The boys that I watch during the day are beginning to interact with him more and to bring him toys and play with him. Carson very much enjoys this. We were all playing with bells, musical bells in different pitches, and Henry and Carson were sharing the bells and just talking back and forth to each other. Carson was getting so excited that he was trying to stand up in his kid cart...so wonderful to see. During that moment of that day time just stood still. A time to cherish forever.

We believe Carson is teething again, so he was chewing on a frozen teething ring (we were helping hold it in his mouth) when he began to suck on it! I quickly got a little bottle of apple juice and gave it to Carson. Carson also sucked on the bottle, to give you perspective of this amazing feet, he has not sucked sense the beginning of December. Wouldn't you know...it made me cry. I do also have to say that we were very careful while doing this, his nurse was there keeping a close eye, listening, feeling and watching him swallow so he would not aspirate. It was just amazing.

Well that is enough for now. We continue to take care of each other and live day to day. I will end with a new prayer we received and now say every night before bed.

Enjoying a Life of

Health and Healing

Lord, because You have instructed us in Your

Word that we are to pray for one another so that we

may be healed. I pray for healing and wholeness for

Carson. I pray that sickness and infirmity

will have no place or power in his life.

I pray for protection against any disease coming

into his body. Your Word says, "He sent His

word and healed them, and delivered them from

their destructions" (Psalm 107:20)

Wherever there is disease, illness, or infirmity in

his body, I pray that You, Lord, would touch

him with Your healing power and restore him to total health.

___________________

Confess you trespasses to one another, and pray

for one another, that you may be healed. The

effective, fervent prayer of a righteous man

avails much.

James 5:16

GOD BLESS and AMEN

Big Boy

2009-03-12T19:30:00.002-05:00

The Loves of my life....

Cousin Bryce's hand me down clothes....I'm a big boy!

What a memorable event!

2009-03-06T21:35:00.004-06:00

Nap time...covered in his prayer blanket....prayer at work!
Great Gma and Gpa Moranz with Carson
Dr. Graf speaking at the event
Julianna and Carson...just precious!
Carson and a watchful Brynn...just checking in on her buddy!

Aunt Becky updating...WOW what a fabulous event for Carson and his parents and everyone there! We can't thank everyone enough for showing your love and support for the Bowman's. It is truly a blessing to have such wonderful family, friends and those we don't even know care so much! It was a great evening to spread awareness about Menkes and that is exactly what everyone did. A big shout out to Jamie and Drew and to Dr. Graf for sharing their stories and information!

Thanks again everyone...words just can't express how much we appreciate all your love, prayers and support!

And to quote a dear friends thoughts after the event..."God knew exactly what he was doing when he gave Carson to Sarah and Jeff...without a doubt. I am so PROUD of them!"

God bless and keep BELIEVING.....WE BELIEVE!

Love Aunt Becky

Thanks

2009-03-04T06:50:00.006-06:00

Thanks! To everyone that made Carson's Fundraiser a success. We cant thank everyone enough. Kathy and the rest of the committee did a great job. We Thank You all for your support

Jeff, Sarah and Carson

Before and After Pictures

2009-02-19T13:43:00.003-06:00

We are doing well here at home, we are adjusting to our new normal. Here are some before and after pictures.

Can't to see you all at the fundraiser...remember to get your tickets early so we can count you in for dinner.

Happy Birthday

2009-02-11T15:24:00.003-06:00

Happy Birthday to Carson!!! What a big boy, 1 and a half...wow time flies.

We are out of surgery and in our room. The surgery went very smoothly and took only 90 minutes. He was in recovery for another 30. Still pretty groggy at this point. Will update more later with pics.

Thanks for all your extra thoughts.

quick update

2009-02-08T15:54:00.003-06:00

We will be heading to the Hospital on Wed, Feb 11 (Carson's 18 month birthday!!) for surgery to insert a G-Tube and have a Fundoplication done. We are looking forward to this, it will be helpful to Carson. Please say a few extra prayers that all goes as smoothly as planned.

Love The Bowman's

UPDATE on fundraiser Feb 28th

2009-01-23T12:46:00.018-06:00

Fudraiser is Feb 28th.

Slient Auction and Poker Tourney is looking good. Some great prizes are coming in like, T-Bones tickets and you get to throw out the first pitch of the baseball game, vacation packages, gift cards, and much more. Anthony Davis, Former Chief and Super Bowl winner with the Ravens will be helping with the silent auction with some of his sports memorabilia from Anthony Davis & Associates.

For a schedule of events click link below--
http://docs.google.com/Doc?id=dfrjxw52_4c3xndf6

We are asking if you can please pre order your tickets for $35.00 for dinner or $45.00 dinner and poker. We would like to get a count for how much food to order. Click on the below link to purchase tickets
http://docs.google.com/Doc?id=dfrjxw52_2ctkj3sgz&hl=en

If you have any questions please email

jbjk97@yahoo.com

kathimarieallen@yahoo.com

Thank you for your support!

New pics of our Big Boy!!!

2009-01-19T17:18:00.004-06:00

HELLO....

During OT, Carson was playing with his football (full of jingle bells) and talking to us.

So very tired...that is a kids breathe right strip on nose...helps when he is stuffed up.
Like father, like son...

Update 1-17-09

2009-01-17T19:05:00.002-06:00

There are so many things to update you all on...I am not sure where to start. We have been doing great the last few weeks.

We had a check up with Carson's pediatrician on January 8, she said, he was looking good and to keep on doing what we are doing!

Carson's nutritionist this week was very surprised...he gained 9 ounces and grew 1 1/4 inches in a week!!! I this explains why he slept until 2:00 pm a few Saturdays ago. This brings Carson to 24 pounds 13 ounces and 32 1/4 inches long! He is our big boy...

We have cancelled his swallow study, as this would have been a waist of time, we know that Carson will not go back to complete oral feeding. Carson still has his NG feeding tube (through the nose). We have a surgery consult on February 3 to begin the process of giving Carson a Mic-key button (through the stomach). We are also going to do a procedure called fundoplasty, this will help Carson's reflux from being aspirated.

We have a nurse come to the house 5 days a week to help take care of Carson, they are here from 8:00-4:00. We have Jen who is our Tues, Wed, Thurs nurse and we have Robin who is our Mon and Fri nurse. They have been a tramendous help! We have also been having volunteers come to the house a few times a week to give Jeff and I time to double team house work or what ever else needs to be done.

Well that is all the updates we have for now...

Don't forget to keep checking for updates on the fundraiser...we are getting very excited to see all of you, and have so much fun at the event! Good luck on winning the raffle...I know we would all like to get out of this cold and go to the beach.

Vacation Raffle

2009-01-12T12:07:00.008-06:00

Fundraiser Raffle Sat Feb. 28th 8pm
The winner of the raffle will enjoy a 2-Night Stay in a Scenic Villa at the beautiful Kiawah Island Golf Resort located on Kiawah Island, South Carolina. The package also includes one round of golf for 4 people at The Ocean Course, Kiawah’s award winning Pete Dye golf course. The Ocean Course is the future home of the 2012 PGA Championship and played host to the ’91 and ’97 Ryder Cup, ‘2003 World Cup and 2007 Senior PGA Tournaments.Check it out!
Check it out! http://www.kiawahresort.com/
http://www.kiawahresort.com/golf/the-ocean-course/

We hope to see everyone at the Fundraiser on Feb. 28th in Olathe, KS but we realize busy schedules don't always allow. We greatly appreciate your support by purchasing raffle tickets for Carson. Purchase Tickets on the right side of the blog. After you donate we will send you an email with confirmation. Thanks

Happy New Year!!! A year of reflections.

2009-01-01T16:24:00.002-06:00

We have definitely had our share of roller coasters this year. However, through it all we are blessed to have each other and support from all of you. In January of 2008 Carson was diagnosed with a rare genetic disease called Menkes. This is a copper deficiency that causes seizures, brain damage, lack of muscle control and will eventually result in death. Hearing this news was a huge blow to us, sense then we have been living day to day cherishing every moment we have together. We have made a web site with a blog for Carson to keep everyone updated on Carson through out the year. Please visit it, http://www.carsonbowman.net/.

This past year has also brought us many other events. One of the most exciting news is we moved into a new house in April! It is only a few blocks from our old house, but here we have much more room to spread out. Our new address is 15821 W 150th Terrace Olathe, KS 66062. We traveled to Maryland on Memorial weekend for the Menkes foundation Gala. There we met other families who had Menkes Babies as well as other Doctors who study Menkes. We had our first fundraiser for Carson in June at the Carroll American Legion. What a huge turn out and success!!! We celebrated Carson’s first birthday in August with a huge barbeque at Heritage Park. We have had only two hospital stays in 2008, each were a 6 night stay, one in January 2008 (our initial diagnosis) and the other in December 2008. We do feel pretty lucky that these were the only hospital stays of 2008 and we look forward to the same or even less hospital time in 2009. Please help us pray for this as well as a miracle for the good Lord to heal our Precious Carson. We are having Carson’s second fundraiser on February 28, 2009. You are all invited; please see his web site for more details. This one is going to be at the Holiday Inn in Olathe, KS on 151st. (Same place as our wedding reception.)

Sarah has been lucky and able to stay home with Carson. A great blessing in its self! She is providing childcare for 3 others currently and one more to come in April. This has had its challenges also, but it’s all for Carson. With Carson’s new machines we are lucky to have a full time nurse in the home to take care of him during the day. This greatly helps Sarah.

Jeff is still working with Olathe School District as a Supervisor in the Technology department. He also still has his cleaning business, but has been passing most of it off the Chad (who lives with us) so Jeff can be at home to help most evenings.

Jeff and Sarah are doing great; we have really come together more in the last year. We are working hard to take care of Carson and each other. I know with all of your help and support, it has made it easier on us!! Above all we are just living day by day and cherishing every moment we can with our precious son.

We do believe and ask the Lord everyday for a miracle to heal Carson so we can have him for years and years to come.

Have a happy and safe start to the New Year! We hope to see you all at the fundraiser in February!!!

more pics

2009-01-01T14:30:00.003-06:00

Carson got his new chair delivered this week. This is a Kid Cart, it has great support for him and allows him to be part of the fun much easier than before.

Carson is playing with his new Christmas presents, he loves to watch the fish swim by and listen to the ocean. He will every now and then try to hit the fish. There is a video of this on the U-tube link on the website.

PICS

2008-12-31T09:13:00.008-06:00

Adjusting to our new routine.

2008-12-13T11:47:00.007-06:00

We are all happy to be back at home!!! On Wed night while giving Carson a bath, he expressed how happy he was. (Remember he had not had a real bath in 7 nights.) During his bath he talked to us for about 15 min!!! it was fantastic to hear. We interpreted him telling us how happy he was to be home, how good his bath felt and how much better he was feeling. Carson has again been getting up between 3 and 4 am to have conversations with us. How can we turn that down? We love to hear it, even though we like very much to be sleeping.

We are getting adjusted to all of Carson's new machines. His new machines include: oxygen tank, O2 sat and heart rate monitor, feeding tube with pump. He is still requiring his 'old' machines as well: a suction machine and nebulizer. Below you can find a picture of his new set up in our living room, right along side of the Christmas decorations. He has not needed oxygen for the past 48 hours...this is fantastic!!! He is holding his own, keeping his O2 saturation level above 92. The tube coming out of his nose is his feeding tube, this goes into his stomach. He requires 5 feeds a day, 3 hours apart and a continuous drip of formula during the night. This gives Carson about 32 ounces in a 24 hour period. Both formula and his meds are given through the tube.

Carson has some follow up appointments. We saw his pediatrician on Fri, he is still wheezing, so he is still in the yellow zone for his asthma and will probably stay there for a few more weeks. We have a follow up with the OT at Children's Mercy on Dec 23, here she will say if we are still concerned with aspirations. If the OT is still concerned we hope to have a swallow study sooner than Feb 13. If she is not concerned we may be able to try feeding through the mouth again!! We have also been getting set up with more services here at home. With all of his new machines Carson qualifies to have a nurse here at home with us!!! What a help that will be with all the other kiddos here also.

We did open up one of his Christmas presents early...his Aunt Becky got him a Cubs bean bag. He is pretty comfortable in it. (Picture below)

The day care kids were very happy to have us home. They are also adjusting well to Carson's machines. At first they did not like them, they thought I was hurting Carson and would tell me 'all done' if I was doing something to Carson. You can see below the sympathy that they give Carson. Even though the kids are so young and can not comprehend what is going on, they know something is different with Carson and they have to be supper gentle with him. The kids give Carson plenty of kisses, hugs and compassion...it is wonderful to see.

That is all I can think of for now with the update. Just one more thing...We can not thank you enough for all of your support! As Jeff and I have been taking care of Carson, our family and friends have been taking care of us. We have had meals delivered, help with the extra kiddos, help with cleaning the house, laundry and snuggling with Carson. Thank you just does not say enough...we love you all!!!

We do believe in the good Lord and continue to ask Him for a miracle to cure Carson.

Enjoy the pics...

This is Mom updating...

2008-12-09T19:19:00.002-06:00

Today is Tues, it has been a pretty long day for us. We have been learning a lot about all the new care Carson is going to need at home. We have also been working on paper work and phone calls to get as much help as we can at home. CMH has had us in complete control over Carson's meds, feeds and care today...we have to prove to them that we are comfortable doing it all so we can take him home. You see, we are coming home with an oxygen machine, O2 sat machine, and a feeding tube. Carson has been requiring a little drip of oxygen most of the day, and could take weeks to a month to ween him off it. We have also been talking about the possibility that Carson has been aspirating (we have been thinking he has been micro aspirating for a few months, we have been thickening his formula to help this) his aspirations may have also contributed to his lung distress. With all of this up in the air we have decided not to feed him threw the mouth as it could make him worse. We do have a swallow study scheduled here in a few weeks to see for sure if he is aspirating, the outcome to this will bring more decisions Jeff and I will have to make.

Thank you for all of your prayers, support and help. I know there have been many to offer their help with dinners, and other miscellaneous help in the next few weeks as we get readjusted. We appreciate this VERY much, a few less things we have to worry about.

Love, Sarah, Jeff and Carson

Sunday at CMH update...

2008-12-07T15:57:00.003-06:00

Carson is continuing to improve but still needs a lot of rest. We are still here at CMH downtown but in a regular room. We have spent the day cuddling with family and just resting. We are working on getting him to eat with the bottle again. Today Carson has needed to have the oxygen again but we are weening him off. Keep the prayers coming for his healing and rest!

Thanks again for the prayers and support...WE BELIEVE!

A few pictures of the day are included.

Love,

The Bowman's

Mercy South Thurs then Downtown KC on Friday til.....

2008-12-06T12:24:00.007-06:00

We went to Children's Mercy South Thursday night. Carson was having difficulties breathing and had a fever. We stayed at south for the night then in the morning Carson was still having problems gasping for air. He has a viral infection that caused a asthma attack which is why we needed to bring him in. They transferred us to the Children's Mercy Downtown KC. After assessment they moved the little guy in the PICU. All night Friday they gave breathing treatments and used deep suction every 2 to 3 hours also had oxygen on him the entire time. At 11am Sat morning--Today--- We got the "ok" to move back up to the "normal" hospital rooms. The breathing treatments and O2 and suctions seem to be doing a great job. Sarah now is trying to feed him with a bottle while the rest of us wait in the Ronald Mcdonald House. Thanks for all your prayers! We hope to be out of the hospital soon.

I thought I would give a very quick heads up just in case someone was wondering.

Take care

December 1 update

2008-12-01T19:30:00.003-06:00

We cannot believe that it is already December, just last week it seemed like Halloween. How time flies.

Dana, our nutritionist came to visit the week before Thanksgiving. To our relief Carson had gained 11 ounces back (all that he had lost the month before) and had grown 1/2 inch!!! I can not tell you how happy I was to hear that. Needless to say, we are sticking with the formula...he needs all the extra calories he can get. (bring on the Thanksgiving feast)

Jeff and I are doing great. We get out as much as we can (in fact we went to my 10 year high school reunion on Sat night) and cherish every moment with our son. It was great to have 4 days off for the Thanksgiving holiday. Great family time together!

We took a trip to Iowa the weekend before Thanksgiving to meet Bailey, Rob and Arica's newest and to celebrate Thanksgiving with the Bowman's. We had a fabulous time and had our first snow of the season. On Sat it snowed about 1.5 inches.

Cousin Julianna was in town for the week of Thanksgiving and was able to spend two days at our house...what a help. And I know she and Carson enjoyed very much the time together!

For Thanksgiving day we went to Nana and Papa's house to have dinner with the Latshaw's. It was great to see everyone, but was a big day.

Part of our big day was that we had to take Carson to Children's Mercy for a follow up. On Wed Carson woke up with a 103.2 fever. Jeff took him to the pediatrician, there they ran a CBC on his blood and found his white blood cell count was 26 (pretty high). The Dr gave Carson a shot of meds and prescribed antibiotics, Jeff and Carson were then sent to Mercy for a chest x-ray to check for pneumonia. The follow up on Thurs was to make sure the white cell count went down...it did, back to 13 (normal range). We also learned that the chest x-ray was negative!!! What a relief. We have also increased his breathing treatments to 3 times a day. We go back to the pediatrician Tues for a follow up and his second flu shot.

Other than these outings, we pretty much keep Carson inside...the healthier he stays, the better!! I am sure I have forgotten to update you about something...but can not think of anything else at the moment.

We do miss everyone we do not get to see on a weekly basis, but especially Aunt Becky, she is now living in Florida enjoying the warm weather, and Cousin Julianna, who is living with her Dad in Newton, KS for this school year.

May God bless everyone!

Check all pictures in post below!

December 1rst already....

2008-12-01T18:37:00.007-06:00

Wow how time flies...there is so much to update you on. We will start with all the new pictures...

Possible future girl friend. Handsome eyes.

Silly boy. THEETH!! Getting ready to talk.

New cousin Bailey. Loves to snuggle with anything.

Look at me!!! All tuckered out after playing. BRRRR, winter is here.

Cousin Love. Where is my food?

We pray everyday for a Miricle. I love the sun. So tired, Becky wore me out.

Who me? I'm a big boy now!!! Christmas is coming...

Happy Halloween

2008-11-01T12:52:00.004-05:00

Carson was a little Lion last night for Halloween.

Quick update- Carson has had several seizures per hour lately so we have increased the meds. We are changing his diet because he has lost weight two months in a row and not getting bigger. We are putting him back on formula and adding butter and oil to his food. We hope this will add some fat to our little lion. We have not seen as many smiles lately...his last one was given to his Aunt Becky, Aunt Jen and Nana, right before Becky left (she has moved to Florida), we are excited for her, but also miss her.

That is all for now...we love you and thank you for the prayers and thoughts.

Smiles

2008-10-16T16:27:00.005-05:00

I caught him smiling again...this is close, but Monday's smile was a full open mouth smile.

More teeth pics....

Morning of playing

2008-10-16T11:59:00.006-05:00

Carson has been very alert this morning. Here are some videos of him playing. You can also hear him talking softly (there are also other kids in the back ground)...enjoy!!! Carson is cutting his 4th tooth today, you can see his big top one in one of the videos.

OUCH!!! Look at those teeth.

Two on bottom, one on top and working on another.

Sleeping with thumb in mouth.
Sleeping with Aunt Kari, right before smiles.

Early Morning Conversation

2008-10-15T06:54:00.003-05:00

We have not seen any more smiles, but Carson and Mom had a good conversation at 3 this morning. As we were getting up for our (seeming to be) normal 3am wake up call, we were talking about how it was still time to sleep. After I told him it was not time to get up, he protested and loudly...it was not a cry, more a sound that said "but Mom." So we talked a little while longer and tried to go back to bed. Of course you know who won that battle...we ended up downstairs in our rocking chair till 530am. I am not complaining...I love being with my little guy!

Thanks for always checking up on Carson, we love to hear and see how many people care about Carson and us...feel free to leave a comment back to us.

SMILING!!!!

2008-10-13T20:13:00.003-05:00

We were very blessed today. Today Carson gave his Aunt Kari and Mom 3 smiles!!! It was so sweet to see, it brought tears to our eyes. It was too quick though, so we did not get a picture of it (and neither of us wanted to walk away to get the camera). That is all the update we have for now.

Carson.....

2008-10-04T21:21:00.002-05:00

On Friday, September 26, we took a scheduled trip to Children's Mercy for a skin biopsy. This skin biopsy will be sent to Dr. Kaler in Maryland for research. Carson did not feel a thing during the procedure, but he sure did feel the shot of Novocaine before hand. Dr Graf, Carson's Neurologist took the biopsy. During this appointment, Dr Graf also got the chance to see Carson eat his lunch. Dr Graf thinks he might be micro-aspirating (inhaling his food into his lungs) as you can imagine, this is not a good thing. There are some tests we could do to check, but the majority of them would be inconclusive. The best thing we can do is watch for signs...the main one is infection like pneumonia. To help Carson drink easier, Dr Graf suggested adding Thick-It to his milk. This makes the milk thicker, making it easier to swallow and less likely to go into his lungs. We started this immediately and has helped Carson drink easier. Dr Graf is also changing up his medicine. Carson's body tone is always very tight, Dr Graf explained this to us, his brain just does not have the function that tells his muscles to relax. In order to help Carson relax his muscles, we are going up increase his Clonazepam (muscle relaxant and anti-anxiety). Dr Graf said we will really like this drug as it will help with seizure control and his tone. We are also going to decrease his Phenobarbital. We continue to pray that these changes will make Carson more comfortable and give him more seizure control. Please continue to pray with us.

We are still struggling through teething. Carson has two teeth in plain sight and a third the is just poking threw and working on a few more. His gums are so swollen and bleed when the tooth starts poking threw. As you can imagine, he is crying a lot. We are doing all we can to keep him comfortable...Tylenol, frozen wash clothes and pacifiers, and oral-gel. I just keep telling myself, it is a good thing he will not remember this when he grows up.

We have seen an increase in play from Carson. He has a light box (just that, a light box that we put transparencies on, colors and patterns) he also has a Big Mac, a button that plugs into the light box that he can push to turn on his lights. He has been pushing this button with his hand and/or foot to see his lights. It is great to see! He has also been playing in his 'play box', he has found his bag of jingle bells again and likes to hit them to hear the sounds. Also in his 'play box' he talks to his toys. He has such a sweet voice, I can not hear it enough. We will work very hard to get this on video and add it to the web site.

I think that is all for now...will let you know when videos are up.
Sarah

New Updated Pictures

2008-10-01T20:37:00.006-05:00

Teething sucks for all...
Just hanging out with Mom and Dad
With Dr. Graf, Carson's Neurologist and Courtney, Carson's nurse
Passed out just before his bath...so sleepy!
The Bowman's at the ISU vs Iowa party
Great Gma and Great Gpa Moranz with Carson
Sleeping so peacefully and just look at those arms...so cute!
Nap time in his cubs gear

Surpassed 10000 hits...WOW!

2008-09-29T11:58:00.003-05:00

Carson's site has surpassed the 10000 marker...WOW...that just blows me away! Thank you everyone for your thoughts and prayers!

Carson had a good weekend and was very tuckered out by Sunday evening. After a bath and barely getting his food down him before he passed out...he was out for the count. And he has started off the week with a great day! Sarah sent a text this morning saying "C is having a great day! Playing with toys!!!" What a blessed little boy and how blessed we are to have him in our lives.

I'll let Sarah update about this past Friday's appointment and a few changes they have made with Carson's medications...but all is well.

Have a great week!

Love,

Aunt Becky

WE BELIEVE

Great Monday!!!

2008-09-22T14:16:00.003-05:00

After having a rough weekend, we are having a great Monday. Carson was very, very fussy on Saturday, nothing would soothe him, nor was he eating his normal amounts. He also had a lot of mucus on Saturday, we had to use the suction machine many, many times. We did however make it out to his Aunt Jen and Uncle John's house on Saturday for a BBQ while Cousin Julianna was in town. Sunday we had a little better day, we slept a lot...catching up from Saturday and only a few hours on Saturday night. (Carson has been having an interesting sleep pattern. He has been waking up from around 3:00 to 5:30 am crying. We have tried everything to soothe him, nothing seems to work until he wears himself out.)

Today we are having a great day! He has eaten well, napped and worked hard...Carson has stretched his muscles, had tummy time, where he worked hard to lift his head and look at his game on the computer. Carson has also had a lot of floor time, playing with Addy (a new baby I watch). We hope all of this hard work and content boy will continue threw the week.

Thanks for checking up on Carson! Will write again soon and add some pics!