Monday, October 27, 2014

Expectancy vs Expectations

Happy Happy Birthday to the sweetest, happiest and cuddliest little boys on the planet!!!  We are so grateful to celebrate Dorian and Wynn's 6th birthday!  Wynnie was so excited that it's his birthday today that he didn't sleep a single wink last night (I'm attributing it to his zeal for his birthday, not the fact that he is finishing out his steroid course of therapy that makes him wide awake for days).  Dorian has been singing happy birthday to himself all weekend so today is just another day where he thinks everything is awesome.

Wow.... six is A BIG deal!  When they were first born we were told they would have an average life expectancy of 4-8 years.  We had no idea what to expect when faced with the news we had 2 terminally ill children that God had entrusted to our care.  By all means and measures, Dorian and Wynn have blown all expectations out of the water and continue to surpass any expectations we could have ever had for them.  Life EXPECTANCY is very different from our EXPECTATIONS.  Expectancy is based on numbers.  Expectations are based on hope.  Dorian and Wynn have always given us hope through their smiles, laughs, snuggles and love.  Even in their worse days, they have always managed to show us their warrior spirit.  We are so proud of all the lives they have touched and all the people their bravery has inspired.

Since their grandparents come into town later this week we'll be having a "My Little Prince" themed party for them.  Royalty, not rhythmic curly haired short guy, but (note to future self) a Purple Rain theme would totally be right up Dori's alley as well.

We "adults" had a great time at our annual Halloween Spooktacular -- we had our biggest turnout ever and look forward to sending all the donations over to the National MPS Society.  Dorian and Wynn get recognition for all the money they help raise for the National MPS Society for ML2 research so we love showing them their names in their newsletter and all the thank you cards they receive.  They are hard working little fellas!!

Two weekends ago we went to Chicago ... I had a business trip out there and then Chris, Ben and Alex met me out there for the Husker/Northwestern game.  The boys LOVED Chicago and we had a blast with them!

We're looking forward to having a great week celebrating Dori and Wynnie... thanks for all that continue to follow us and we challenge you to do SIX fun things this week in honor of Dori and Wynnie. Woo hoo!!!!

Thursday, October 9, 2014

All about Dori (and others)

We If you didn't already know, Dori is kinda a big deal (as is Wynnie) and if you didn't know-- he'll be happy to let you know. 
Today Dori had his new "eye gaze communication device". He has it for a 30 day trial to see if insurance will approve it (fingers crossed). What's it do? It has lots of boxes on the screen and he launches the boxes by just looking at them. Then he can ask for things or ask to do things based on the friendly voice commands from his gaze. So if he wants a bath, is hungry or wants to watch videos-- this is another way of him telling us. My only hope is that Chris doesn't sneak away with it and all day long on the weekends I hear "make me a sandwich, someone get the newspaper, change the channel to the Husker game"... Ha ha ha!! 😆

We are looking forward to Dorian using it and maybe even Wynnie will want to get into the action. 
Hers also a brief little video of running amuck at school. He loves the freedom of walking the halls and this past week was his school's book fair so he was excited to scoot to the library to see all the action. He's such a social butterfly. 

Last week Dori was his classroom's student of the week. Ben and Alex helped him jazz up his biography poster. Dori was extremely proud of himself

Alex keeps wow'ing us with his culinary delights and vast knowledge of American and world history, Ben keeps busy going to friends house, and Wynnie has done fantastically with home-bound school. 

Wynnie originally started with twice weekly 2 hour sessions, but that proved to be exhausting for him. State law requires 4 hours minimum per week. So now we've broken it into 3 days per week and his teacher Miss Deborah has fallen hard for sweet little Wynner. Can you blame her? 
Humbled and thankful that on October 27th we'll be celebrating SIX amazing years with Dorian and Wynn. We love them so much, I only wish they truly knew how much better people they have shaped us to be. 💝💝💝