Friday, April 25, 2008

Our Night Time Routine...

I've been doing all this for so long that it is "Normal" to me. The other night, I started the nighttime routine while I had a friend visiting. At first, she pretended not to notice all the medical supplies I was hauling out and lining up on the table. After a couple of minutes of watching me, she finally stopped mid conversation and said " Do you do this EVERY NIGHT?"
I was kind of surprised that she was so shocked when I answered yes to her question, then I got thinking about it... This is what it takes to keep David, Ben and Caroline healthy, so of course I do it every night... I don't even think about it... but it is far from a normal bedtime routine!

David gets 2 pills and his Growth Hormone shot... his is purple. Then I give him the bottle of Eucerin to give his scars and skin graft sites a good coating so they don't get dry.. the burn scars and graft scars don't have oil glands so they get very dry if they aren't moisturized 2 times a day.
Ben gets 1 pill and his Growth Hormone shot... his is yellow. Then he gets Nasonex spray in his nose, his albuterol inhaler, and just before he gets into bed he gets hooked up to his C-Pap machine... I usually don't have this out on the table, I brought it out for the picture though because it is part of the nightly ritual.
Caroline is my easy one... she gets 1 pill and her Growth Hormone Shot... hers is green.

When we are done with all of this, it's time for the rest of the bedtime routine.. showers, PJ's, brushing teeth, etc.

It got me thinking last night as I got their meds ready, how nice it would be for all of us if we didn't have to do this every single night of their lives.. if bedtime could just be filled with end of the day things like bedtime stories and evening prayers. But as I tucked my little girl into bed last night, she wrapped her arms around my neck like she does every night and said
"Love you Mom"... That makes it all worth it.

Wednesday, April 23, 2008

Wednesday Photo Day....

Good Morning!
I have been promising pictures for over a week now, so scroll through and enjoy the photo's from the last week or so!

Celebrating Caroline's 7th Birthday at the zoo with her birthfamily

Ben in his catchers gear at baseball practice

Ben at Bat

Jake #56 at a Lacrosse Game

East Lyme Wins!!! 6-1

Caroline this morning before school in her new dress that Googrie and Pappa got her for her Birthday and the pocketbook that Bea sent her

Last but not least... the Germany crew!! Alex and Dave got home from an 11 day trip to Germany on Saturday night... they had such an awesome trip. Stay tuned for more photo's in upcoming days!

Sunday, April 13, 2008

Another busy week...

I had all kinds of intentions of posting earlier this week, but my computer got jammed up with some kind of mal-ware this week thanks to one of my little darlings clicking on a link they shouldn't have. So 5 days and $300 later I have my computer back.

On Monday, I drove Dave and Alex to the airport for an 11 day trip to Germany with the German Club at the High School. Dave called yesterday and said that the trip has been amazing.
Here's where they are visiting:
Dachau (this is one of the concentration camps.. and Dave said there just aren't words to explain it.. he said it was very overwhelming)
Salzburg Austria (he was there yesterday when he called me)
Through the Black Forrest in Bavaria to Heidelberg

I can't wait to hear all about their travels when they return.

Until then, the kids are on spring break this week, so I am planning some day trips to keep them occupied, Jake has Lacrosse practice, Ben has Baseball, we have Special Olympics... so as you can see, there is no shortage of activities to keep us busy until they return next Saturday.

Stay tuned for some new pictures later this week!


Saturday, April 5, 2008

The Strength of the Huddle

I stumbled across the quote yesterday and it has been ringing in my ears ever since. I keep thinking of all the supports we as a family have... of course there is our immediate family, Dave's Mom and Dad, his brother & sister and their families, my sister... my dear friend Regina who might as well be my sister!
Then there is Ben and Caroline's birth families... both important parts of our family.
Reaching out into the community we have a wonderful support system of very dear friends, many of them we consider "family" to us. These are friends who "get it" when it comes to PWS and my kids... these are friends who are happy and capable of watching my kids when I need help, friends who are an extra set of eyes when we are at a function and David is in seek mode.
Then there is my PWS family... they are spread out all over the world... but are a huge part of our "huddle", at the click of the mouse I have 100s of people who I can get direction, support, and correction so that I can regroup for the next phase of the battle.
Many I have never met in person, others I have met a few times at conference, but yet we share the common bond of PWS and we are there to help eachother win.

Without this support network that is our "Huddle" we could not do what we do.

I encourage all of you to take a look today at your own "Huddle" to build a strong support network around yourselves, to surround yourselves with people who love you and your family and are willing to go the extra mile to help, and above all... know that you are not alone in this journey.


The Strength of the Huddle

When I asked Mike what he missed most about pro football, I was surprised by his answer.

He said it was getting into the huddle. You felt safe there, he said. It was where you could get direction, support, and correction. It was where you could regroup for the next phase of the battle, knowing 10 other guys were there to help you win.
Mike said the huddle was a real refuge during away-games in hostile stadiums, when, besides the team, they were fighting a negative environment.

It was a place where they could return to for encouragement to keep going.

Every man needs a safe place to get what he needs to enter into life's conflict. If a man's going to survive—no, win—the battles of life, he must have a huddle of good men around him to cheer him on and bandage his wounds. He needs men who will celebrate with him in the good times and do whatever it takes to bring help and healing in the bad times.
-Rodney L. Cooper in Shoulder to Shoulder

Friday, April 4, 2008

Pop Top Tabs...

David has been a patient at Shriners Hospital in Boston for the past 4 years. Caroline is a patient at Shriners Hospital in Springfield where her scoliosis is followed.
When David was in Boston after his last surgery, I asked our patient care specialist what we could do as a family to Give Back to Shriners for all the wonderful care they have given us. She explained that the Shriners collect the little aluminum tabs from soda cans and cash them in for money that is used to make purchases for the hospital. It is an easy thing to do and raises lots of money for the hospital.

We came home and I was telling Dave about it. Jake was listening and had the idea of organizing a drive at school to get the whole school to collect tabs. He approached his teacher, got his friends involved in making posters and a flyer that went out to everyone in the school. Each of the classrooms has a collection can and in the first week they have already collected an impressive amount.
I told my Mother-in-law about it and she contacted Shriners on her own and got the information to begin collecting. She made up cans with David's story on them and both her and my Father-in-law are collecting them at their churches (they are both Pastors) and around the community.

I am really excited to see my family so energized to do this... I am proud of Jake for thinking big enough to get the whole school involved and thrilled that my in-laws want to help too!

If anyone out there wants to join us... you can mail them to us and we will add them to our collection. Our plan is to have a huge delivery of them when we go back for Davids follow-up in June.