update 5-31

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!!!!

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!!!

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.