Friday, May 23, 2014

Meet our two new favorite people!!

We have some new people in our lives! And boy do we love them!!

Meet Stephanie and Krystal!!


Stephanie helping Benjamin work on his ipad
Potty time!! Not always our favorite thing, but we're working on it!! No potty yet just practicing!  (except at school he actually has gone twice!!)
Benjamin's favorite thing: TENTS!! and Stephanie builds them well!
Watching the Blazers!!
Krystal helping B with self feeding

 These two ladies have changed our lives!!! And most importantly, changed Benjamin's!! He has grown and changed so much over these last two months it is CRAZY!! If I didn't believe Benjamin thrived on a schedule before, I do now!! Even his teachers have noticed a huge improvement in almost every area at school. I am so thankful for these ladies!

And it's hard work! They go to doctor and therapy appointments with me. They help keep Benjamin on his afternoon schedule when Ben is just getting home from work and I'm leaving for my evening shift. They boldly walk beside me and help me with behavioral tantrums in public. They keep B's stuff clean and organized. They work with Benjamin on his physical therapy and his communication therapy... and put up with his grumpiness and tantrums! They've been officially trained by a nurse to handle B's seizures, g-tube and medications. And... Ben and I have gone on several date nights and it's been awesome!

One thing I am really loving: when Ben is working, I often will not do what I would like to, due to being by myself and feeling too overwhelmed to handle B and everything else without help. Well folks, I've got help now! And a couple weekends ago, Krystal and I braved the 2014 March of Dimes walk!                                

6 miles we walked!!!
And Benjamin thought he needed a piggy back most of the way!! And who can resist with that smile?


this boy loves stopping to watch the water!!!

First year "actually walking" the March of Dimes Walk!!! :)


Crossing the finish line!
Happy Dance cause we're finished!!!

So... we may have overdid it a bit!! We were EXHAUSTED!!! You can tell by my hair in the last photo... seriously... lugging around 36 pounds on my back for at least 3 miles was quite the work out! But I'm so glad we did it! And I couldn't and wouldn't have dare done it without Krystal!

 Thanks to all my family and friends who bought tulips and donated! We raised quite a few funds for those babies!!!

Here's a quick trip down memory lane:

Our first walk in 2009


Our second walk in 2010 We're sure all missing that cute boy in the duck blanket! Ryan we think about you every day! ox

2014 Team Picture! We joined another team this year!! Our team raised over $5,000!

I think sometimes people might wonder why the heck we're always fundraising!?! I'm just so thankful for the organizations and people we have met along this sometimes very hard and difficult journey and I never, ever want to stop giving back! I want to remember, and be grateful always... and I definitely want it to be there for the next family... maybe even better and improved for them!!






Tuesday, May 20, 2014

Happy Birthday #6!!

I can't believe I haven't blogged since March! I'm so mad at myself! So much has happened and I want to remember everything!! I'm going to try and do better. I've had this chronic sinus infection that is kicking my butt. After three treatments of antibiotics, a steroid treatment, cat scan and now headed to the ENT. Man oh man... I'm glad it's nothing worse, but it exhausts me... and I seriously feel like half of my brain is missing. How can you blog when you can't even think?? Hopefully we'll get this straightened out soon! ;)

I can't believe this boy is 6!! May 13th was his birthday!


I remember sitting in the cardiologist office at one of our first appointments and Dr. Carlson telling us that she didn't know how long Benjamin would be here with us. And I remember praying to God, "Just please let us have some time with him", and he is six years old now! And kicking life's bootie!  

Birthday at school (video below- may not show up on some devices)


After school, Benjamin had a surprise minion visit at home:

Benjamin with Krystal his caregiver
We went to the beach for our annual family reunion the day after B's birthday so we had a little celebration there too! I love having my sister be apart of his birthday and that's not always possible since she lives in CA. 


The other day we were leaving school, which has tended to be a really hard transition for Benjamin... lots of "complaining" and crying and resisting. He's been doing so much better but the other day he kept buckling his knees down to the ground but wasn't crying, just wasn't cooperating. I was like, "Quit, Benjamin! You need to stand up and walk to the car nicely please".  He did it again so I just left him on the ground to give him a minute to pull it together. He quickly found the perfect pine needle, grabbed it ever so nicely with his fine pincher fingers, looked up at me with a big smile, I grabbed his hand, he stood up, and walked to the car perfectly the rest of the way. Boy did I miss that one!!

How often in life do we misunderstand each other because of the lack of communication? This boy is teaching and reminding me daily to take two more seconds and try to understand the other person. It's not always the case of defiance, or a behavioral issue... or somebody out to tick me off. Sometimes it's just a second to stop and smell the roses... find the perfect stick, look at bird flying... and if I'm in too much of a hurry, I might miss the entire magical moment!