Picnic Pictures

Bobo the Clown! He kept loosing his strap and the kids thought this was hysterical!
Cody was totally into Bobo. It surprised me because I didn't think they would be.
Bobo doing a wand trick. Cody later told me this was his favorite point.
Dylan hanging 10. See his scratch on his forehead (Alli we sort of sympothized with you - hope yours is better)....He had a fight with a tree branch and the tree one. Started getting a black and blue spot on the side of his head - we will see what morning brings.
A little added bonus. In the park across from the pavilion this hot air balloon went off. As it went over head Brett asked them if they found our smiley face balloons to send them back! :)

Video of Bobo doing his first 'act' with us. Thanks so much to Bobo for donating his time to our event!

Lucky Smiles Picnic

Today we hosted our 2nd family fun day for our local craniofacial families. We had a fantastic day and everyone had a great time. This event was much smaller than last year. Last year we had it at a zoo in Syracuse and we had almost 150 people. This year we had 50 but still had fun. I think the location is what did it in for most. Being in Binghamton and almost all of our invites went to Syracuse families - the drive was just to much for them. So you live and learn. This picnic was a challenge for me this year as it was my first one of it's kind and I had so much other personal stuff going on. Between vacations, other parties and my mind pre-occupied with things going on with Cody, not to mention lining up donations and getting people to return a phone call - but the day went off without a hitch (or close to it). The whole event was sponsored by cleftAdvocate and thanks to Debbie we couldn't have done it without them. So a huge thank you to them. We also had two local guys donate their time and services to provide our entertainment to the kids. We had BoBo the Clown. A HUGE hit with the kids. He had them up and helping, throwing their magic dust around and everyone was in stitches. We also had a balloon artist that came and made all sorts of balloon figures for the kids. They loved this. If one popped, out came another. My neighbor came and did our face painting. The kids all looked so cute - of course though my 3 weren't impressed. A co-worker of mine came and took all of our pictures. He does it on the side and it was just so nice to have an event photographer. I saw lots of families mingling and it was so nice to see old faces and meet new ones. Its also amazing that when you get talking with other parents how much our kids do have in common. I personally came away from today with some great connections.

A big thank you to my family for helping and supporting me. I couldn't do all that I do without them. Today went seamless. My mom came to the house to watch the kids while Brett and I went to the park to set up. So much easier than having them under foot. After getting to the park, I realized that the pavilion wasn't where I thought, so I frantically called my brother-in-law and he came to my rescue with a sign to put at the end of the drive to let families know where to come. Also thanks to my sister who just steps up with setting things up, she knows what I want and where to do it without asking and mingles right in with the families. And to my husband, who sometimes I never get to thank and sometimes we seem to be at each others throats........he was my run man. He ran to get balloons filled, pick up pizza, call me from the party store as I send him all over the isles to get things that I just have to have, never complained - well until the balloons escaped from the Explorer and floated high into the sky! Yah, he was kind of ticked. He was tying smiley face ones around the park so people knew where to go, had gotten 2 up and left the windows open and out they went. So.......he's not in charge of balloons again! :) .

And of course a big thank you to my Cody, who would of ever thought that 4 years ago when you came into my world we would be where we are today. You are my inspiration to help other families on our journey. It's not an easy one and I don't doubt we will have lots of bumps but your smile lights up my life, to hear you giggle sends a shiver down my spine and to see you interact at an event in your honor (because without you I wouldn't be doing what I am doing) puts a huge smile on my face. I love you!

What a week!

It has been a very busy week. Getting used to the time change again and then heading back to work after a week off and finding out that NOTHING got done while I was gone has kept me busy. Monday my head was in the clouds all day as I was wishing I was still on vacation.

Tuesday I slowly started to come out of it. We took Cody back to the hospital to have another round of blood drawn so they can test his thyroid more. He was funny. As I was talking with him about it he told me that he would do it but wasn't going to be happy. I completely agreed. He doesn't have to be happy about any of it.

Today Tyler went to the doctor for his 3 year physical. He did great. He's right on track and growing up. He weighed 32 lbs and is 35 1/2" tall. For weight he is in the 50th percent tile but for height he's in the 5th. Stop laughing - my kids aren't going to be tall. Only chance of that is if they take after their Uncle Kevin.

The doctor and I also discussed Cody's blood work. It appears that his TSH level has come down from a 9.4 to a 6.something. Which I guess is good but the normal range is 0.4 to 4.0 - so he is still above normal - just not as far. So the doctor said he would talk it over with the pediatric endocrinologist and see what he says. He said they might just recommend re-testing in 6 months. Here is where I have a problem with this all. The TSH is the Thyroid Simulating Hormone that is produced by the pituitary gland. In Cody the gland is having a hard time pushing this hormone. My question is why? Why is Cody having a hard time? Most other 4 year olds don't have this problem. Then why wait 6 months. How about 2 or 3. While I love our pediatricians, this is the same doctor that had me keep Tyler on antibiotics for 3 months while Tyler had constant fluid on his ears - which then has caused him to have severe articulation problems. So - a part of me does not want to wait. And knowing me, I will probably call the endocrinologist and see about getting in to him for a consult. Because in the mean time Cody keeps complaining about being tired all the time. His constant complaint is not normal for his age.

And to top it all off - my poor sister has 2 sick kids. Guess they have the virus hand-foot-mouth. So both Connor and Karly are sick and really not feeling good. Then my mom calls me today and says that Cody is running a fever and is on the couch. Hoping it's not that as it will run through the other 2. Time will tell. (Tash, how is Rae feeling?)

And on all of this - I have been swamped preparing for our Lucky Smiles picnic. OMG - this is like throwing a wedding all over again. I have 400 invitations to stuff tonight. Guess I should probably go do that. The worst part is waiting to hear back from people. The people that have responded the quickest are those that can't come. So I hope the fire department and Shriners get back to me ASAP as my mind is whirling. More to vent on that later - off to stuff!

Meetings

I had a CPSE meeting for Tyler today. With his third birthday next week, he will transition our of EI into CPSE. He passed - no problems. He is delayed in speech and while he is making tremendous progress he is still not where he should be. He practices great - although the little devil will not work with me. So unlike Cody ever was.

It sort of strikes me as odd though - I had no problem what-so-ever with getting Tyler services. Cody on the other hand - I had to call and fight for. And Cody was the one born with a hole in his mouth. Just is bazare in my book.

I also meet with the hospital where we are holding our training event for families in August. They have a great sized conference room for us, a seperate room for the kids, they will provide a light breakfast and lunch for us. All is well there. Only frustrating moment was when I learned the clinic coordinator never sent out the save-the-date cards to local families. UGH. Our team sent over 400 out and I can't get my local team to send 100. I am a little PO'd about that. Supposedly she is getting them out this week but imagine my frustration when I learned they hadn't been sent. They are always wondering why I do more in Syr. and that is because Bing. doesn't support me like Syr. does. It will all work out. So now I have to get moving on a few more activities for the kids, try to get more sponsors for the food. Plus I need to get some things lined up for the kids to do while we are in training. If anybody is interesting in sending whatever for the kids to do (coloring books, crayons, whatever) - please email me.

Happy Friday

TGIF!!! That says it all. Actually was a pretty good day. It was a quite day at work so I got some things taken care of.

On Monday, I had gotten a call from Dr. Kerr. He called home and said he would call me back. I hadn't heard from him and thought it was interesting that the doctor was calling me personally. So I called him today. I should mention he is the PS of the Craniofacial team I am on. He wanted to call and thank me for all that I do. Wow - wasn't expecting that! I guess he had just been at a conference and heard from another parent advocate and realized what they were saying is what we already do. So he wanted to let me know that they were thinking of me. I apologized for not being at the past few meetings. I explained my work schedule has picked up and between that and the boys I just haven't gotten away for a few hours on the day of meetings. He said if there was anything he could ever do about that to let him know. Hmm.. gets my wheels turning because if I could get paid doing what I am doing, I would! So I thought that was so nice and I took the 'atta girl' to heart!

Then I called Debbie and she and I had a nice chat! She gives atta girl comments all the time but it's really her that deserves them. I wouldn't be where I am at without her. I really can't wait for my family to meet her in August.

Yesterday in the mail I got a letter from the school district. It was for Tyler and transitioning him to CPSE. He's approved! Great....however, I find it very odd that I never had to go to a meeting with the committee. With Cody I had to go to 3 to get him in and keep his services. And Cody, was the one born with a birth defect - not Tyler. It does not make sense to me. To me it seems I should have to fight for Tyler - not for Cody.

Also got news today that it looks like Tyler will get to go to preschool in September. Cody and Dylan's teacher said that it was in the budget to accept 3 year olds and the budget was passed. He'll most likely go in the afternoon, and C&D will stay going in the morning. So it will be a lot of running but Brett's schedule allows that. Nothing is permanent yet...we should know a 100% by June.

To end Friday - we all met the Smith family out for dinner and then hit the bike trail. The kids all got to ride their bikes and then play on a really nice playground that is off of it. They had a blast! It sprinkled for a minute but then it turned out to be a great night.

Lucky Smiles Event

So it's that time again to start planning the Lucky Smiles summer event for families. With the huge help and contributions from cleftAdvocate - our families will have a great gathering at our local park. I have a lot of work to do to get this done but don't doubt it will happen. I have many wonderful volunteers who will help. So far we have secured a venue, have booked a great comedian (www.wackychad.com) and best yet - Debbie Oliver is coming for it. We will provide a training class to families and then have a picnic in the afternoon.

I have many thoughts for the event. The comedian, the local fire station to stop by with a truck, maybe the sheriff's office to come and do some finger printing. Or if that can't happen maybe my brother will bring Tacko up. I need to get some things donated - like food/beverage, conference space, all sorts of things.

One of the greatest things is my family will get to meet Debbie. She has been a huge role model to me. Her entire family is great. She is such an inspiration to families and while she can be super sympathetic to me, she can tell me how it is. She was the first one to pick up the phone and talk to me when Cody and I had his first "booboo talk".

Now I reflect back and realize that I won't be doing any of this if it weren't for Cody. He truly inspires me.

More to come....I've got lots to do! For anyone with big pockets - contact me! Your donating to a great cause.