Covey Run!

Last Saturday was the "Run for Children's" Covey Run over in Woodinville...Team Maddie Moomer's ended up with a team of 32 runners!!! The run raised money for Seattle Children's Hospital. It was so much fun and I think we were the biggest team there! Here's our 5K run/walk team (minus a couple of people). Thanks to everyone who came and participated with us. You guys are just awesome. The boys stayed with Grandma and Pa Allred and had a fabulous little overnight vacation with them. Miss Moom's slept through most of the race. I jogged and pushed her...a great 37 minute workout!
We had some "over-achievers" (aka our pro's) on the team as well who ran the 10K race. That's over 6 miles! They had already started by the time we took that first big group picture. Way to go and thanks for running your hearts out!
Teagan's family had a team there as well but we didn't get a group picture together...just the sweet little half-heart sisters posed for one :)
Maddie enjoyed stealing everyone's popsicles after the race.
Here's Bryan, Maddie & I after our run. It was a gorgeous day and we were able to catch up with a few other heart families who attended the event as well. Always a bonus to meet other families going through similar situations.
We also were able to meet the ambassadors for the run...Team Noah. Noah is 1 1/2 and was born with cystic hygroma, or lymphatic malformation, on his neck. They live in Wenatchee (east siders like us) and he's been in and out of Children's all of his life. His mama was so sweet to chat with, just a really great family! He'd about had it with pictures I think, lots of paparazzi following him around this day :)
Thank you, thank you, thank you to everyone who supported our team! We are leading the "Top Individual Fundraisers" right now with $3550.00 donated, the fundraising ends on Friday. If you didn't get around to it and would like to still support our efforts of raising money for Children's Heart Research...you can click here. Thanks again for your support to our family and for Children's Hospital! We love you and feel so blessed!

somebody's seven...

Our toothless, happy, lego-loving, cheerful boy turned seven yesterday! Of course, he wanted a Lego party and we enjoyed two fun celebrations, all in one day. My version of the lego cake was a cake wreck. Oh well, the kid's didn't care and I learned that following the directions is probably a pretty good idea....no more short cuts for me! Yes, they're supposed to look like legos :)
The boys after making their "lego masterpieces"...what a creative, fun and giggly group! "Boys, boys, boys" is all I need to say. They enjoyed the games but had a better time just getting to play with one another...soon these guys will be heading to 1st grade. It's hard to believe!Last night, we had over the family for pizza and more cake. Having the space for our family birthday bash was SO NICE! I usually stress out during my kid's birthdays since we used to be all squeezed in together at our old house but having room to breathe and space for all of the cousins to play downstairs was just delightful :) The adults could actually visit!
Lego goody bags filled with a small bag of legos, candy, crayons and a lego coloring book. I love putting treat bags together.

Happy 7th Birthday Jacers! Thank you for being such a joy to raise. Your smile and silly little jokes and antics never get old. You sure have a gift of making those around you happy. We love you so much and are so proud of you!

Time

"Nothing is worth more than this day." ~by Goethe

One of the biggest lessons I've learned through having a child with a broken heart has been the value of time. Since we began this journey almost 2 1/2 years ago, time has become more precious to me than it ever was. I've learned to relish my everyday routine as a mom and wife and all of the little, ordinary moments that I used to take for granted. My ideal day is just being home with my kids and Bryan, with nothing planned and just b-e-i-n-g. This is when my heart is filled with so much gratitude and thanksgiving. None of us know how much time we'll have here, and when your child is in a high-risk category, you value the time even more.

But with my awareness of the quick passing of time, I feel like it can't pass quick enough sometimes. I dread Maddie's next surgery but want it over with. I pray that researchers and doctors can find an "easier" more long-term fix for my daughter. But for now, a gortex conduit and usage of only 1/2 of her existing heart has to suffice. I read a quote from the Funky Heart blog today that was titled "Fontan" and the last line of his post struck me... a 2008 article stated “this imperfect circulation would still be the only surgical option for this difficult patient population.” Maddie fits in this population with her imperfect heart and imperfect circulation. And this deeply saddens me. They are still using the same surgical "idea" for this population of kids born with single ventricle anomalies since 1971. Although it's been revised many times over, it's not a fix or cure, it's not the best and in the end, it's just a Fontan. It's all they can do for her. And if her Fontan fails, her only recourse will be a heart transplant.

So where am I going with this? Last week, Bryan and I took a trip over to the Children's Research Institute for a tour of the Tissue and Cell Sciences Lab as well as attended a meeting with Dr. Majesky, you can read about him here. Our Heart Research Guild presented Dr. Majesky with a check of $10,000.00 raised from heart families across the state over the past couple of years. Fundraisers like the 2009 Summerfest Fun Run and donations given at our families' Christmas parties were a big contribution of the total gifted. We were proud.

These funds were raised for research from families like ours who want something better for their heart child. We learned that they'll be using this money as the funding to instigate a project, prior to ever submitting their proposals to the NIH, where major funding can be attained. We learned that only 10% of research projects actually get funding from the NIH so groups like our guild have a very important mission because before they even submit the grant, the project must almost be completed and show proof of its validity. And this takes time and money. Dr. Majesky was thankful for the funds raised and it will help with their Zebra fish research. This tiny Ganges River fish may be the key to understanding cardiac tissue regeneration and transplantation. Click here to read more about this. Seattle Children's Research Institute joins several other research facilities across the nation that have Zebra fish Aquarium labs to study and manipulate the Zebra fish genes. Incredible isn't it? It sounds promising but will Maddie benefit from what they learn with these tiny transparent fish in her lifetime? Again, it all lies on time. So for now, we will do our best to help raise money to fund this amazing research, in hope that it will speed along.

So for this day, I'm going to let my anxiety, frustrations, desperation and fear rest in God's hands. Only He knows what lies ahead for us and for our Maddie's life. It's in His time when she'll need her next surgery, it's in His time of when/if discoveries are made to fix cell mutations that cause CHD's and it's in His time when heart defects will no longer be the problem that they are today. And since I'm letting it rest with my Savior, I'm going to simply enjoy the fact that Maddie went poo on the toilet yesterday (her idea for the first time), and during dinner last night, she was antagonizing Cade by pulling his hair and pouring her apple juice on him, that she asked Jace to give her a "wedgie" last night while they were rough-housing, and that she actually went up and down our stairs today 4 times, the most that she's ever tried!!!, and that she tagged along on the butterfly catching expedition with her big brothers last evening.

Time is a gracious and miraculous healer and it's out of our hands. Enjoy today. I am.