This is the fun group at the breakfast.
Sunday, June 28, 2009
Family Fun part II (picture over load!!!)
This is continuing with the family fun. On Monday we met up with Aunt Nancy and Uncle Ray in the morning to start celebrating Nancy's Birthday. Regan thought that it was only appropriate that for her B-day we made her a "fancy Nancy" package complete with gloves, tiara, boa, and jewels!!!! We then headed off to a fun character breakfast! (Thank you for letting us tag along!!! wink!)
TTD stinks!!!!
TTD STINKS!!!!! (this is the g rated version of what I would really like to say.) There are many things about Trichothiodystrophy that I don't like but one of the hardest parts is having to watch my baby in pain ALL of the time. So, looking at these pictures, which do not do it justice, you might think... Hmmm.. was he in an accident? Did he fall? No, these injuries are 100% self inflicted. Collin is in so much pain at times that he wants to inflict pain in another area to take away from the pain that he is experiencing. For those of you wondering, yes, we do give him pain medications, LOTS of pain medications. There are times all to often that it just doesn't touch it. When this is happening we have to put Collin on watch. We can't leave him alone for one second (even to go to the bathroom) for fear that when we come back we will find this. My sweet and beautiful little boy teary eyed, bleeding, and grateful for any relief that he can find. Today there will be lots and lots of cuddles. I am not posting this to make you feel sorry for Collin or our family. I post this because I want the other TTD families that read this blog to know that they are not alone. This is a hard reality of this illness and it is no ones fault. TTD is an awful beast and if affects every aspect of their lives. These wonderful, brave, and courageous children living with TTD are my Hero's!!!!
Wednesday, June 24, 2009
I have neglected.....
I have neglected my blog....
I have neglected my work outs.....
I have neglected my laundry and house work....
I neglected making sure my son got to the first day of summer school.. (oops!)
BUT it was all for a good reason!!!!!!!!!
It was because I had my family in town!!!!!!!!!!
I Love, love, love any family time I get! I can not travel much because Collin can't handle it. So, I LOVE it when they come out to see me and play with me. First up was my beautiful sister Nancy, who also happened to be the birthday girl this trip!!! Aunt Nancy and Uncle Ray came into town from Oklahoma on Friday and the first place we went was Disney Land. We had LOTS of fun and Collin managed to hang in there for the light parade! It was a very fun night! Then on Saturday we went to Steakhouse 55 for dinner with Ray and Nancy for a VERY yummmmy birthday dinner date night!
Stay tuned.... lots more to come!
I have neglected my work outs.....
I have neglected my laundry and house work....
I neglected making sure my son got to the first day of summer school.. (oops!)
BUT it was all for a good reason!!!!!!!!!
It was because I had my family in town!!!!!!!!!!
I Love, love, love any family time I get! I can not travel much because Collin can't handle it. So, I LOVE it when they come out to see me and play with me. First up was my beautiful sister Nancy, who also happened to be the birthday girl this trip!!! Aunt Nancy and Uncle Ray came into town from Oklahoma on Friday and the first place we went was Disney Land. We had LOTS of fun and Collin managed to hang in there for the light parade! It was a very fun night! Then on Saturday we went to Steakhouse 55 for dinner with Ray and Nancy for a VERY yummmmy birthday dinner date night!
Stay tuned.... lots more to come!
We were very excited to see each other!!!!
Sunday, June 21, 2009
Happy Father's Day!!
Happy Father's Day to the best Daddy ever and my partner in crime. I am so grateful to have married such an amazing man that love our kids so much. When Collin was born it was very hard and there was no book or manual that could have prepared you on being a Daddy. You have stepped up to the plate and become the most loving, fun, sweet, crazy, and patient Daddy! I am so grateful for all of the things that teach our crazy kids. Thank you for walking this crazy, hard, and oh so fun road that is parenting with me! You are the best partner and friend anyone could ever ask for!!!!!!!!!!! HAPPY FATHERS DAY TO A SPECIAL DAD THAT......
That will hold your hand when you need a little help.
Can make you smile so matter what!!!
That will hold your hand when you need a little help.
That will carry you oh his shoulders the entire 5K
because it is a bad day for you.
That will let you tackle him and play monster!
Thursday, June 18, 2009
Super Regan...
SUPER REGAN!!!!!...... She can leap tall buildings in a single bound, faster than a speeding bullet, prettier than any Super Hero, and can clean small rooms in no time. Ever since I made the "K" Super Hero cape Regan has been begging me to make a Super Diva Hero cape for her. So, I look at what I had around the house and came up with this fun number complete with jewels and fur collar. Is is sad that I have fur and bling just lying around????? When I walked into Regan play in her room I asked her what her super power was and she replied "I can clean small rooms!" as she was holding up the broom. Now if only she will pull that cape out, put it on, and clean her room when asked....hmmmm.... if only it were that easy. Maybe my next project should be a Diva Singal.
SUPER REGAN!!!!
She looks so sweet BUT...
then she puts on her mask (Yes, isn't that the cutest thing
she told me she needed a mask and came out with her
princess sleeping mask on!!! Love her!!)
She is off.....
and leaping through the air....
and even cleaning!!!!
Tuesday, June 16, 2009
Crafty Tuesday....
This week I made a custom Super Hero cape for a new family member. Well, since hair bows and princess dresses are out of the picture I asked Regan what we should make for him and she said.... a super hero! I thought what a great idea!!! I hope "K" (name will come later) will have a blast in his fun custom cape from his aunt Ju Ju. Regan felt the need to test it out for him in the front yard.... and yes it really does make you fly!wink!!! It was super easy to make and if you haven't noticed I used some of the sock Monkey fabric from my last project on it! Too fun! (Now Regan wants me to make her a princess super hero cape) Who needs to be batman or super man when you can be Super K!!!!
Monday, June 15, 2009
A day not lived to its fullest is a day waisted.
I LOVE, LOVE, LOVE being a stay at home Mommy. I LOVE being Collin and Regan's Mommy. There isn't anything else in the world that I would rather do. It is a hard and tiring job BUT so amazing in the same breath. One second I can be in tears and the next I can't stop laughing. Motherhood is such a wonderful journey. Collin and Regan have taught me so much. I have learned not take one day for granted. I realize that is quality of life rather than quantity with Collin. With that said, each good day I want it to be the best kind of day that I can give him as a mother. I truly feel that a day not lived to its fullest is a day waisted. I love to do fun things with my kidos. We live in a great area and have so many fun things close to us. I will only have them little for a short time.... I don't want to miss a moment of it. I want to make memories that will last a life time. Regan is getting so big so fast. She is becoming such a little young lady. My baby has disappeared and it her place is this beautiful, thoughtful, full of life, and amazing little girl. Collin is also growing so much. He will always be my baby in many ways, I call him my little peter pan, but there will be a time when I can't manage him by myself in public. There will be day when lifting him, carrying him, or taking care of him will be hard for me to do on my own. Until that day comes I want to enjoy EVERY Mommy Monday that comes my way!
Today we headed to the zoo!
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