Wednesday, March 31, 2010

My cup is overflowing…

I just can't stop braging about my kids.

Yesterday I had the privilege of watching Regan and her classmates put on a violin recital for Bubba and his sweet little classmates. It was so fun to watch their faces light up as the music started to play. No, the music was not perfect and often times wasn’t in key as the beginning musicians did their very best. I do not think anyone in the audience noticed it though. They stared in amazement as the sweet five and six year olds played their instruments. Regan stood right in front of her Bubba and played just for him. It was so sweet to see. I love that Regan and her friends have so many opportunities in their school to reach out to their special friends.

And just in case you were wondering..... no, Bubba can not stand on his own now. He is leaning on the door and his sweet big/little sister his holding him up. :) She holds him up alot..... in so many ways.
If that wasn't enough today I went to their school for an awards assembly. Both of my wonderful children were honored. Regan was recognized for her good grades and behavior. Collin was awared for amazing attitude and effort in everything he does. Needless to say I was one VERY proud Mommy.
Regan was first....

Can we say proud????.... Oh, she is so cute!!!

Then it was Bubba's turn....
This is Collin and his Best Buddy. Best Buddies is a program were fifth graders come in and read, play and are friends with children in the special day classes. This sweet friend is SOOO good with Collin.

If you are ever feeling sorry for yourself come and spend a day with Bubba and his friends. They will teach you about courage, strength, and endless love for life. You will be inspired. 
Thanks for listening as this Mommy went on and on about how wonderful her kids are..... until next time! wink!

Tuesday, March 30, 2010

Our first attempt {and good news!}

Let me start off with the good news... NO TUMOR!!!! Can you see me dancing...because I am! After TONS of second opinions and consults the doctors don’t feel that there is a need for a second MRI!! WOOT WOOT! What's going on with Bubba is progression of the illness. :( it is a bummer.... B*U*T is it slower and "better" than a tumor.... I mean none of it is good but it is the better of the two. Bubba will loose the vision in his left eye eventually and we wait for it to effect the right eye. Yes, at the end of the day this is good news! Can I just say that Trichothiodystrophy (TTD) really and I mean REALLY stinks!! Wink!

Yesterday I decided to try to get some of Regan’s six year pictures done. Well, it didn’t go quit like I had hoped… wink!!!

It started out ok....

and then I got a lot of this.....
                                                      and even some of this....
                                                      and then it just got SILLY...

YES, we will be re-shooting her six year pictures. wink!

Sunday, March 28, 2010

Dramatic B&W photo challenge

Week 13 - “Dramatic B&W” Photo Challenge!

I love this picture of Bubba for so many reasons.
It reminds me of the long and hard road he has to face daily.
No matter how hard the night was before, he wakes up with a smile.
 He faces what ever comes at him head on.  
He truly is my hero and my inspiration in life.

Thursday, March 25, 2010

Keeping my head up

We knew when we went in for Collin’s MRI it could most likely be one of two things…. Either progressions of the demyelization or tumor. Well, the MRI came back and there has been no progression of the demyelization. Needless to say I am scared… not knowing what is going on with my sweet, sweet, sweet boy is the hardest part. He will most likely have to go in for another MRI. We have a lot of appointments with doctors coming up and are consulting with his team of doctors back east.

I am not sure who needed a Disneyland day more, Mommy or Collin. It was Daddy’s day off and after the kids got out of school we went and had a blast at one of our favorite places in the world. We were lucky enough to have our good friends meet us. I agree with Bubba….there is something magical about Disney that just makes you forget. He smiled all afternoon and we lived in the moment. Now, I have to just keep reminding myself to keep my head up….

OH, and can I just brag for a second....thanks. Do you see the pictures of Collin with the lolipop? Well, that is kind of a BIG deal. Bubba has a HUGE issue with textures and swallowing. I was excited when he licked the lolipop when I was holding it BUT then he held it and licked it all on his own!!! That was huge. I am sure that everyone on the tram thought we were crazy getting so excited about Collin licking a lolipop. :)

Tuesday, March 23, 2010


Hi Friends!! It is that time of year agian! We are raising money for Ability First for the fourth year!! We are so excited and proud to be doing this for such an amazing organization. They provide a safe and fun place for Collin to go in the HOT, Sunny summer moths. They have an indoor pool that he LOVES! The staff are wonderful and truly give so much to children and adults living with disabilities. Please support Team Collin by donating to this very worthy cause.  By doing small acts of kindness we can do great things!!!!

OH, and if you are looking to be inspired come and join TEAM COLLIN on Sat. April 3rd!!!
It is a  fun and easy 5K at Sana Anita race track!

Monday, March 22, 2010

“Focusing on Angles” I heart faces challenge

Week 12 - “Focusing on Angles” Photo Challenge!

I was not going to enter this week.... BUT ..... I changed my mind after setting Bubba's cars up for him.  I looked over and  saw him laying on the groud and LOVING every second of watching his little cars  drive by him. He might not be able to go out and play t-ball and other things that nine year old boys do BUT when it comes to cars he LOVES them just as much, if not more than most boys. :) It is truly the little things that mean the most!!!! :)

Sunday, March 21, 2010

So very proud!

I am one proud Mommy. This week I was able to see my little girl in her very first violin recital. She was wonderful. I didn't even hear her violin screach once!! So proud I tell ya! Give her another ten years and she will be in the Symphony. Oh, how her Bubba would LOVE that!

When I was volunteering in Regan's class this week I was so proud when the teacher called me over to read Regan's work. Regan's class went on a field trip to the farm (the day of Collin's MRI.. I missed it) and they were asked to write a couple of sentences about the bus ride. Most kids were writing things like..the bus was bumpy... the bus was yellow. No, not my girl ... she wrote the following. We saw Ikea on the way to the farm. I love to shop at Ikea.  :) Wow, what can I say.... I was so proud. wink!

Friday, March 19, 2010


Regan has been looking forward to kite day at school for weeks. On Monday she made a kite out of paper and practiced flying it in the backyard. Her sweet little home made kite never did much BUT she was so excited running back and forth.
Collin LOVED watching her run!

Regan is always looking for new fashion trends.... hmmmm.... I am not sure if this one will catch on or not. What do you think? wink!
Yesterday the big day came and it was time for Jason and I to go to the kid's school and help them fly kites. We brought three with us just in case. Regan wanted us to bring her big Tinker Bell kite but I was afraid that it was to big for the tiny bit of wind we had. So, I ran  to the dollar store and picked up a couple little cheap ones.... just in case!

We got Regan (after her violin recital) and then found our little man in the hall waiting for us!!

The big kite just wasn't working so we pulled out the cheap ones. Rega and Daddy didn't have much luck BUT did manage to get it up a couple of times. The extra kite was given to a classmate of Collin's who was sad that his kite had broke. WOOOWH was I glad I ran to the store for the cheap ones.
Collin enjoyed watching and we played with Bubbles. :)
Regan sure tried OVER and OVER. She was determined to get that kite to fly HIGH but despite her best efforts it just didn't happen. All the pratice in the backyard didn't pay off because there just wan't enough wind. So, Daddy and Regan have a date to wake up early Saturday morning, buy a kite, and fly it just the two of them. I don't think either of them will give up until they get it to go HIGH. :)