Carson's Crew 2012!

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

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

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

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

WOW!

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

Carson’s 4^th Birthday Bash!!

Please help us celebrate Carson’s birthday.

Saturday August 13^th 6:00 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

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....

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

Cameryn Nicole has arrived

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

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...

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!