Monday, September 29, 2008

Introducing CEGM Jeremy

The world has Curious George, Dora the Explorer and Go Diego Go, I'm not jealous because I have the one and only CEGM Jeremy (Curious, Explorer, Go, Master, Jeremy). Just in time for Christmas is the one and only life size action figure, this action figure comes complete with everything you need, no batteries required and ready for action and if you call within the next few days you get free delivery anywhere in Oklahoma. I'm telling you if you need to do any fall/spring cleaning the CEGM Jeremy is exactly what you need he can totally clear a cabinet in a minute or less. I woke up from a nap on Saturday afternoon only to walk into his room to find that everything was taken out of the top of his armoire and the canned foods in the kitchen floor were cleared from the cabinet. I don't have any pictures, I thought I was dreaming, a little in shock. I haven't had piles like this since Jeremy broke his leg so it's going to take me a while to get back into the routine of having the CEGM Jeremy back.

Thursday, September 25, 2008

No longer in a cast !!!!

HOORAY !!! Jeremy got his cast off yesterday. Bless his heart his leg was really dirty, sand poured out of the cast and somehow he managed to get a stick under his heel. He kept rubbing and scratching his leg but really glad to have it off. They told me it would take several days for him to start walking on his leg. He's been walking on his leg some. This is a video of Jeremy sitting on his bed with no cast playing "Pop Up Baseball" he was having so much fun with it.

Tuesday, September 23, 2008

OH What a Look !!!!!

What do you think this is about? I think it was time to come in and he wasn't ready or he did something he shouldn't and got caught, but either way he was having a good time.

Tomorrow we go see Dr. Holt in hopes of getting the cast removed, please pray for the healing of his leg and the removal of the cast. I am ready, it's tough carrying him around and yes I'm ready for my boy to be mobile again. I know Jeremy is ready.

Thursday, September 18, 2008

Jeremy in the news !!!!

We did an awareness story with Nicole Wiseman from KOTV, Channel 6. It was done so parents who have special needs children can learn about OFN and know that they are not alone. There are other families that want to help and have dealt with exactly what they are. For me as the Regional Coordinator what can I say, I LOVE the work I do with Oklahoma family network, GOD gave me a passion for families who have children with special needs. I love to visit with the families, learn about their children. I love being the hand that helps them across that bridge.

Here is the link if you didn't get to see it, you will probably have to copy it into your web browser.


Tuesday, September 16, 2008

He's mobile again and Chef boy O Jeremy !!!!!

Jeremy has cautiously walked around objects for a few weeks, but yesterday he got his confidence back. When I got him off the school bus they told me that he turned loose and started walking everywhere. I was surprised but when we get into the house, I sit him on the floor and he takes off like a race horse. It is a welcome site but it's funny to see him toddling around again. It's been almost 7 weeks since he has walked at all. We go back on September 24 and hope that he gets the cast removed completely.

I told Jeremy he could help me cook yesterday which he loves being in the kitchen when I'm there but it's more so he can put things in the microwave and it is not always food. I figure if I could start him early this will add to his ability when he is older to be independent. I was fixing okra yesterday evening for supper, it was cut up and in the frying pan. I buy Jeremy toddler puffs, they are soft, I don't have to worry about him getting choked and they have additional calcium. Jeremy decided that he wanted his banana puffs with his drinkable yogurt as a snack. He was happily drinking his yogurt and munching on banana puffs as I stepped into the other room for a minute (Jeremy can do lot of damage in just one minute). I come back to stir the okra only to find that Chef boy O Jeremy had created his own recipe called banana puff okra because he had poured the rest of the container in with the okra. Try picking soft puffs out of okra that is frying.

Wednesday, September 10, 2008

Sib shops and Extraordinary Connections !!!!!!!

I'm posting this on Jeremy's blog because it does pertain to him, he's been my inspiration for the past 9 years on the reason I am involved in the Oklahoma Family Network and other projects I've been involved in.

Extraordinary Connections- Genetics have always interested me, we searched for many years to find out Jeremy has FG syndrome, then a "significant" change on his L1cam gene to find out I've got the same change on my L1cam gene. When I visit the Children's hospital I always ask them for any family that has been admitted that has a genetic syndrome, unknown genetic syndrome or anything metabolic. I love speaking to the families, I have learned of many syndromes that I had never heard of and I always will research them to find out information. We have so much in common even though we have different diagnoses. I called our Executive director and told her I have a passion to start a support group. I visited with another mother who was excited, we met for breakfast one Saturday morning and brainstormed. By Monday Extraordinary Connections was born with a logo that Melissa and David Ramirez came up with. Extraordinary Connections is for families of children with rare Genetic or Metabolic disorders. Extraordinary connections meetings are a safe environment for the parents of children with rare genetic or metabolic disorders to find support, resources and truly empathetic companionship. For purposes of this group, we defined "rare" as impacting five or fewer children with the state of Oklahoma or families without a diagnose for their child's condition. My purpose will be that this group will be to help the families find similar experiences. Our first meeting is,Saturday, September 20, Hardesty Regional Library, Maple room, from 10am to noon.

Sib shops- talking to families or visiting them in the hospital they would voice how hard it is for their other children who doesn't have special needs. Often times these children feel left out. If their sibling with special medical needs they are so demanding and require many appointments, hospitalizations. If their sibling has developmental or behavior, they are demanding and require therapy appointments or often times when they are in public the child will be embarrassed by their sibling's action or while they are at school they gets lots of questions about their siblings special needs. Jeremy has no siblings but I am totally emphatic with families who has a child with special needs and other children. Sib shops is a fun place where school age children who have siblings with special needs can interact with other children their age who have siblings with special needs, and get the emotional support and build relationships with their peers. I am going to be the coordinator of the project and worked with Juanita from Oklahoma City who has had successful sib shops for the past several years. Juanita did a planning meeting with me and 2 women who grew up with a sibling who had special needs and child life specialist from St. Francis Children's Hospital. We are going to have them at St. Francis Education Center, Classroom #2, starting October 4 for the 6-9 age group, Nov 1 is the 10-12 age group and they rotate each month and will go for 4 sessions. I'm also working on attending a 2 day Sib shop workshop in Salt Lake City, UT for November 13 and 14, so I can be better equipped to coordinate and make sure our Tulsa sib shop is a success.

Monday, September 8, 2008

Jeremy's version of playing Perfection

I don't know how many remember or played the game perfection but it is actually one of my favorite. The goal of the game is to get all the shapes in their place before the timer goes off and it pops up the board and you loose everything. I had bought the game for Jeremy many years ago (ok I probably bought it for myself). I knew Jeremy would get a kick out of it especially when the timer ran out and the board pops up. I also thought this would be educational so I attempted to teach him how to play. The below video is Jeremy's way of how you play perfection, no explanations will be needed. (the video is sorta dark, I didn't have the light on in our living room so I hope that you can view it)

Friday, September 5, 2008

We are on the mend....

Yesterday we went in for a 4 week check on J's broken leg and the leg is healing very well. We were able to get rid of the full leg cast and Jeremy is now in a walking cast. I really expected when they cut the cast off that it would stand up and walk away by itself and was surprised to find that Jeremy's leg wasn't all that dirty. Everyone couldn't believe that he had worn a hole in the knee and was working on one in the heel of the cast. We go back in 3 weeks and Dr. Holt gave me the impression that at that time there is a good chance that Jeremy will get rid of the cast. Dr. Holt's medical assistant put on Jeremy's walking cast, he was funny and had Jeremy laughing. Jeremy was exhausted when we got home and took a really long nap.
School is going good and on Monday Jeremy will start going to his typical 3rd grade classroom, they will assign him a buddy.

Monday, September 1, 2008

The lazy days of summer are gone...

I can't believe summer is almost gone, don't get me wrong I am so glad. Fall and spring are my favorite seasons. This past weekend was my mom's reunion and we've had one for the past 19 years. I was going to take Jeremy down and let him experience a night of camping in a tent but that was before broken leg. Here is a picture of Jeremy trying to help his Uncle James cook.
Jeremy has done a bang up job of destroying his cast and "officially" wore a hole in the knee. He finally started on Friday walking on it so we should be close to a mend. We went in Friday to see Dr. Cyrus to do a check on our ADHD medicine and Jeremy actually gained a few ounces and grew a little bit since last year. Here is a picture of Jeremy with Dr. Cyrus. Jeremy really does well in his office, Dr. Cyrus is so much fun, plays with Jeremy. Jeremy never likes to have his ears looked at but this visit Dr. Cyrus tried to clean some wax out and Jeremy was pretty mad.