EB AWARENESS WEEK

When Ben was 3 months old we made the transition from sleeping in the bassinet beside our bed to sleeping in his crib on the other side of the house. I suffered severe insomnia during that transition :) One night while up in the middle of the night I came across a picture of a baby who had bandages all over his body and head. I couldn't stop wondering what had happened to him. My first thought was he had to have been burned. I started googling the name of the baby and his dad (who I knew from high school.) I came across an article talking about a Benefit Golf Tournament in honour of Tripp Roth. Also in the article was a link to his Caring Bridge website where his mother wrote and updated about her son's disease.


After reading a couple posts I found out that when Tripp was born he was diagnosed with a rare genetic skin disease called Epidermolysis Bullosa "EB." Any type of friction on his skin or mucous membranes causes severe blistering. After seeing a specialist they were told Tripp would not live to see his first birthday and that he was 1 in 2 million! Read Tripp's story here. (Next month Tripp will be 1 1/2 years old :)


One evening I was so tired and when Bo got home from work I said 1 2 3 Not It! on who had to give Ben a bath that night well of course I won and Bo bathed Ben and put him to bed. That night when the insomnia kicked in I got up to read Courtney's post and was horrified when she had wrote a post saying how Tripp screamed in pain during his bath that night. The post was heart wrenching. I bawled the whole time reading it. Here I am with a baby that LOVES his baths and I was too tired to enjoy it! From that night on my life had changed I would no longer take for granted the little things in life. As a mother I could not begin to understand how Courtney must have felt seeing her child in so much pain during a simple daily ritual that I had taken for granted


Today starts EB AWARENESS WEEK so I thought I would write a post on how I first learned about EB and give my readers the opportunity to learn about it and the chance to fall in love :) Since Ben was 3 months old I have been following Tripp's incredible journey! I'm so in LOVE with that boy! He is such an INSPIRATION! His mother Courtney is my HERO! She cares for Tripp so selflessly. Courtney and Tripp have become an important part of my life. Everyday when Ben is napping I have to check on Tripp :) OK so maybe it is more then once a day :) but when Courtney writes a post on Tripp not feeling well I feel the pain and when she writes a post of him showing off his tricks or pictures of him smiling I feel the JOY! I am a better mom because of her and think everyone should read about her journey caring for her son with EB. To start following Courtney click here

 This week Courtney is going to try and write posts answering her blog readers questions about EB.

To learn more about EB go to DebRA.org 

Happy Friday!

Memory Lane

These pictures are of Ben Parker ONE YEAR AGO at the Dallas Arboretum....they make me so so SO Sad but oh so HAPPY and PROUD at what an incredible lil guy he has become. He makes my heart so full!

Wasn't he so stinkin cute in his lil corduroy blazer

See next post at what a difference a year makes

Last Thursday we went to the Dallas Arboretum with Minnie and Cousin Brooklynn. We had so much fun running through the pumpkins and playing in the pumpkin houses!

Of course first thing first....SNACKS!

 Ben pushing baby Madison :)

Don't they look like a little family pushing their baby and picking out pumpkins for the front porch :) 



Minnie and Brooklynn

 Benny liked picking up and throwing the pumpkins

 

"Who's child is that?!?!"

Now when I talk about Ben doing the back arching this is what I'm talking about and that is a 35lbs boy

Ok so he might kind of be a Monster. But he is a really Cute Monster!

They had a lil Oktoberfest going on so Ben had a Root beer float!

 

Brooklynn watching herself eat guacamole in the mirror. She is so funny!

Sweet Sleeping Benny :)
What a fun day we had! Thanks Minnie and Brooklynn!

Dallas Zoo

Yesterday Ben and I went to the Dallas Zoo with our playgroup. I was worried because Ben thinks he is to big for the stroller and thought we might fight all day but he was SO good. He LOVED the ZOO! His room is decorated with animals so every night he points to his animals on the wall and we say night night elephant, night giraffe...etc. So I'm pretty sure when we left the giraffe's he said "night night raffe" The giraffe's would come right up to you and you could feed them the Zookeeper came up to Ben and gave him some lettuce to feed the giraffe because he could tell that Ben really liked them :) Also every new exhibit we came to Ben would say "WOW" Love that Guy :)

Also I AM THAT MOTHER. While we stopped to picnic all the OTHER moms pulled out their healthy lunches packed from home while me and Ben went to the Sahara Grill for chicken nuggets and fries! 

(thats a whole other post on my son's eating habits)

Ben looking at the penguins

 

Ben hangin with the younger ladies

"WOW"

Ben LOVES watching the big kids. After this picture ben tried reaching up and kicking up his feet!

Ben's Bud William

Pumba is back there in the mud

They explored All day together

They were so cute together

He was always trying to pick through

WOW....RAFFES

 

My favorite things are the Gorillas and Monkeys I laugh just looking at this picture

OUCH that is what you call "eatin dirt" Ben was scared not interested in the fake alligator so he took off running and face planted. He stood up spit out the dirt and kept running.

Ben and William at the Children's Zoo. I am so PROUD to say that while the OTHER kids were struggling and needing to go home, Ben and William got to stay longer and visit the other half of the zoo! William fell asleep  about 5 minutes later but no Ben he wasn't going to miss out. But he crashed before we left the zoo parking lot.

It was such a fun day!

Kid Kingdom

Yesterday we went to park in Rowlett called Kid Kingdom. We finally have PERFECT park weather! Ben had Fun running around and eating ice cream from the Ice Cream Man! Wearing one of his 6 halloween shirts...(Last year I bought several for 25cents on clearance, and grandma and minnie have both bought one.)

 I Love Halloween!