WE NEED YOUR HELP!!!

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

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!!!

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

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

The Loves of my life....

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

What a memorable event!

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

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