PICS

Adjusting to our new routine.

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...

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...

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.....

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

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....

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

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.

more play time videos

I have uploaded 2 more videos of Carson playing on U-Tube. The link is on his web site under favorite links. http://www.carsonbowman.net/

Enjoy!!

Smiles

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

More teeth pics....

Morning of playing

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

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!!!!

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.....

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

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!

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!!!

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!

Happy Birthday to Daddy!

It's Daddy's birthday today! Happy Birthday, Happy Birthday!

Carson has two teeth down...the top tooth has finally broken through so hopefully he will have a break before any others start coming in. His ear infection and strep on his bottom are on the mend and his antibiotics are almost done! Thanks for all the prayers!

Carson gets to see his cousin Julianna this weekend and is super excited as it has been a long time! Other than that things are just pretty low key. I know Carson has been off in his sleep patterns lately...waking up at 3am and staying up for a few hours then going back to sleep. Prayers for his sleep pattern and rest would be great! I know Sarah and Jeff would appreciate it too!

Thanks again. Have a great rest of the week and weekend!

WE BELIEVE

A rough day

We had a little bit of a scare today. We woke up this morning and Carson had close to a 104 degree fever. He was very lethargic and would not eat or drink anything. We took him to Children's Mercy South urgent care. The nurses and drs took very good care of us. We actually had one who shared her experience with us, she lost her little one less then a year ago at 3 weeks of age, he had a rare genetic syndrome called Door syndrome. To learn more about this please visit their web site www.colinsugarbears.com. (I do not think she would mind me passing this info along) It turns out Carson just has some 'normal' child sickness. He has an ear infection in his right ear and a strep infection on his tush. We gave him some mortin in the hospital and he perked up, he did eat his bottle, cereal and meds there also. After his fever went down, we came home with a prescription for amoxicillin. Carson had a pretty crabby afternoon and evening, I think his tush hurts. He has finally calmed down a little tonight after eating like a pig!!! We are headed to bed shortly and hope to have a much better day tomorrow.

Thanks for Praying!!!

Teething...

More teething...Another tooth is about to come through on the top this time (and maybe another soon to follow)...so as you can imagine Carson has been a bit cranky and he has every reason to be that way. Sarah and Jeff keep up with the tylenol and cold wash clothes with ice and oragel...they are pros at this! He enjoys having his gums massaged and I was caught off guard one day at how strong Carson's jaws are and how his "bite" can hurt even without a mouth full of teeth. I'll be more attentive next time. :)

Things have been pretty low key overall...Carson had a visit from his Grandma and Grandpa from Iowa this weekend and also got to see his Great-Grandma from Topeka. He even talked to his cousin Julianna on the phone and although he wasn't too talkative at the moment he definitely was listening intently on what Julianna had to tell him. :)

Continue the prayers for the teething process and for his seizures to go away...

WE BELIEVE

Love,
Aunt Becky

Update.....

Carson has been doing ok with all that he is going through. During our 12 month check up at the pediatrician, the Dr. heard some wheezing, so we have started him on Pulmicort, an asthma steroid. Carson gets two breathing treatments a day, two with Albuterol and one with Pulmicort. He still pulls at the mask, but is getting used to them. The breathing treatments are seeming to help, he is coughing a lot more of the crud up, so in return we are having to use the suction machine more also. Carson is still eating well, three solid meals a day consisting of rice/oatmeal and fruit/veggie/meat, on top of five, 6-8 oz bottles. Carson is completely off of formula and is drinking soy milk, doing just fine with the switch. He has been hurting with his teeth coming in so sometimes is not in the mood to eat and has trouble sleeping. With all of these new things Carson has had increased seizure activity, we have increased his Phenobarbitol, it has helped a little. We continue to have occupational therapy twice a week, vision once a week and nutrition once a month visiting. Carson is doing well with these, although we have seen decreases and increases in activity levels due to all the changes he is experiencing.

Please continue to pray for all of us. We need continued strength and support. We are still praying for another miracle. Our first miracle was being given Carson in the first place, our second miracle we are asking for is to heal him so he can stay on earth with us for a very long time. We want to see him play with his friends, laughing, riding bikes and just doing what boys do. We want to see him yell at his mom for doing something he did not like, and talk to his dad about girls. We want to see him go off the collage and get married and have kids of his own. Please pray that all of this and more will happen for Carson and for us. He has a lot more life to live. WE DO BELIEVE!!!

That is all I have for now. Thank you for your support and continued interest in Carson and our family.


PS. Jeff and I are also doing great together. We have grown closer through this ordeal, and our love and faith in each other is very strong. We have grown up a lot and realize that life is to precious to fight and pick at the little stuff that does not matter. God brought us together and gave us Carson for a reason...we love each other very much.

Many firsts in our house lately!

Carson's first birthday....

We had a blast. Thanks everyone for coming!!!

Carson's first tooth....

His tooth just started popping through on the 18th. It is still bearly there, so there are no pictures of it yet.

Carson's first hair cut....

Carson's Aunt Jen gave him his first hair cut.

He still has is mohawk, she just took a little off the top.

One Year Slide Show

Aunt Jennifer and Aunt Becky put this picture slide show together for Carson's first birthday. Click the link below to view the slide show (it is about 10 minutes long). It has fun pictures from this past year! Enjoy...we are still working on getting the birthday party pictures up. Coming soon!

http://www.onetruemedia.com/share_view_player?p=68d2575ffb9fbc83d5a346

Carson is doing well and is still growing like a weed! Keep up the prayers for Carson's healing and strength! And also for Sarah and Jeff to continue to be strong!

WE BELIEVE!!!

Big Birthday THANKS!!!

There will be birthday pictures up soon...sorry for the delay.

What a blast we had at Carson's one year blast...thanks to everyone who came to help celebrate!!! and those of you who wished to have been there. We thank you very much for your continued generosity in gifts and donations. Words can not describe enough how much we feel blessed to have wonderful, supportive, loving....people surrounding us!

Love always - The Bowman's

CARSON'S B-DAY!!!!!

Birthday Excitement!!!

A whole year...that is hard to believe, it has gone so fast.

The past year has been amazing, becoming a mother and caring for your very own child is priceless. Yes, the last year has taken us on many rides, some in which we wish would have never come, but it is still priceless. Thank you to all who have supported us with your actions, thoughts, prayers, gifts, etc...this last year would not have gone like it did without ALL of you! We are very thankful to have amazing family, friends, medical staff, and strangers who have given a little bit of their heart to Carson and our family. We are living day to day and cherishing every moment. All life is in God's hands and all we can do is pray for many, many more years with Carson. Please continue to pray and support us, as we need it everyday!

We have been preparing and anticipating Carson's big birthday bash coming up in 2 days!! An overwhelming amount of people have already RSVP, I think the count is currently over 100 people. What a party this is going to be! I can not even begin to describe my feeling of joy and pride for the support and love so many have given to my son. Thank you all again (I can not say "thank you" enough), we can not wait to see you at the big bash!!

Sarah

Pictures

A few pictures of Carson over the last year...more to come...