20 Hour Benefit Crop

We are asking all of our frinds and family to please help our family raise money for the Uncompensated Care Fund at Seattle Children’s Hospital.

Seattle Children's serves families in four states—Washington, Idaho, Montana, and Alaska. The uncompensated care fund at Seattle Children’s is supported in part by the largest guild association of any hospital in the nation. The uncompensated care fund insures that no child goes with out care simply because a family can't afford it. In 2008, $86.2 million in uncompensated care was provided—double 2006 amounts. In 2009, it is projected to increase to over $100 million.

Evan has spent some time at Children’s Hospital—-seven weeks shortly after birth, and he has periodically returned because of illness or for surgical procedures. Our family has received financial assistance through this uncompensated care fund. Mostly it has helped with Evan's home medical supplies, which we have exceeded our insurance’s $5,000 yearly maximum every single year. But financial assistance also helps us with co-payments, co-insurance, and things our insurance does not cover (Evan's hearing aids are a big example). Seattle Children's is an incredible hospital, and they have taken care of our family in many ways. While we are not able to return the favor dollar-for-dollar, we still want to give back.

So how can you help? Please sponsor me! On April 17th, I will be participating in a 20-hour benefit crop (scrapbook lingo for a time and place to sit down, spread out your stuff, and put together some pages!). This benefit is in it's 6th year, and is organized by my favorite scrapbook supply store of all time, Treasury of Memories. For more information about the event itself, go to

http://treasuryofmemories.typepad.com/my_weblog/2009/02/ready-to-have-a-ton-of-fun-and-help-children.html

I have set a personal fundraising goal of $2000. I know times are tight, but every little bit helps and no donation is too small. Checks can be made out to “The Mighty Maxwell Guild.” (Please leave a comment if you don't have my address, and I'll be sure to get it to you)

Thank you in advance for your generous support!


Storrs Family

March for Babies

March for Babies 2009 will be held on April 25th at Sarge Hubbard Park in Yakima.


This year, Evan's CHARGErs will be walking in honor of Levi and Judah Nelson, who were born on March 14, 2009, at 33 weeks gestation. Both boys are healthy and strong and now are learning to eat and starting to gain weight! Levi weighed 4 lbs 11 oz and Judah weighed 4 lbs 6 oz at birth...both a good size for identical twins. These new Nelson boys join big brother Burke, ex-31 weeker, and a friend of ours who happens to also have CHARGE Syndrome.

I have added a link to the blog sidebar. Donations to the March of Dimes in honor of Levi and Judah are welcome (please do not feel like you need to donate to both the Crop for Kids and March for Babies). Walkers joining our team on walk day are welcome also.

Bubbles

Evan and I had some fun earlier this afternoon blowing bubbles. If I had any doubts about his vision, they disappeared today...along with those fleeting little bubbles.

I was blowing the bubbles up in the air, so they would stay lofted up long enough for me to grab the camera and take pictures with Evan still looking upwards. He would find a bubble and watch it drift down to his level, and then he would reach out and pop it. These bubbles were a "long lasting" formulation, and if a bubble happened to stay air born long enough, when it popped it would leave a little white wisp of dried soap film (it looked like a piece of cobweb). I saw Evan focused in on one of these "old" bubbles, and when it popped I watched him follow the little cobweb down to the ground. Those were hard to see, and he definitely saw it!

Busy + Tired = No Posts

I have not kept Evan's blog updated the way I would like. We have a lot going on right now (ASL Class, daddy's doing some jobs on the weekends and evenings, mommy is trying to hire some new staff at work).

Evan is doing great. He is on spring break this week. We just received his most recent progress report from school--he's accomplished a few of his goals and is making progress on many more of them. We still do not have a signing aid for him yet, but his "substitute" aid has been with him for two months now and just loves him. We are about ready to make the suggestion that the school should invest in ASL classes for her, because Evan really likes her also.

Evan's newest sign of affection is the chin pinch. We think maybe it started because of daddy's beard??? Regardless of it's origins, Evan will reach up and grab your chin and either try to push on it or pinch you--hard, with fingernails. If you make a face and say/sign "No, that hurts" he laughs and tries to do it again. Avoidance seems to be the best way to deal with it. Not reacting is also an option, but it's really hard when the pinch is bringing tears to your eyes. I say this is his way of expressing affection because he only does it to people he knows really well and likes.

Evan's appropriate use of shaking his head for "NO" is rapidly improving. Pretty much any request is met with a vigorous round of shaking no. PJ time Evan! (Shake, shake, shake) Let's change your diaper! (Shake, shake, shake) Time for milk! (Shake, shake, shake) Pretty typical behavior for a 3 year old.

Evan continues to express himself primarily by leading behavior or by different non-verbal vocalizations. It is very apparent if he does or doesn't like/want to do something. He likes to wear blue jeans and will help you put these on by stepping into the legs if he's standing up or pushing his bottom up off the ground so we can slide the pants on (other colored pants, sweats, and PJ bottoms he fights by kicking his legs or taking them off after you've put them on). He does not like sweatshirts or button-up shirts. He likes long-sleeved t-shirts and has a favorite red shirt he always wants to wear. If you take his shirt off, and don't have another to put right back on he will go find one for you. Sometimes it is actually one of his shirts, but more often than not it's one of mom or dad's from the clean clothes "pile" in our room--there is usually a 1-2 day "layover" for clean laundry, from the dryer to being folded and put away.

Evan's Art

This is the "Blarney Stone" Evan made at Preschool (I think he had some help).



Evan made this picture all by himself. I think he has a really good sense of design. I love how he balanced the strong horizontal lines with the dots and rounder edges, and how each color has it's own presence on the page. It's a keeper.



This was a collabortive effort. I made the shamrocks with three dots, thinking he would add the "stems" with his fingers. Not quite...



Obviously another one we worked on together. Evan stuck most of the "snow flakes" onto the paper (I crumpled them up and helped him with the glue stick). Considering our first attempt with the tissue paper he picked every piece I glued down off the paper, I thought this was pretty decent progress. And yes, it was snowing here this morning.

Evan and the Mini-pack

February Feeding Landmarks

Last week, I made a batch of blendarized food with the very last Flintstone from Evan's first BIG bottle of vitamins. There were 150 vitamins in the bottle, and every batch of food I make for him contains one vitamin. This means I have blended him approximately 180 liters (or 47 1/2 gallons if you don't think metric) so far.

We started the blendarized diet with Evan in July 2007, and once we got going have never looked back. I think it's one of the best decisions for him we've ever made. Evan is down to 1 can of Pediasure per day, which he takes with the feeding pump over night. During the day he takes approximately 600 mL of blended food mixed with 8 oz of whole milk. While combinations like "spinach-apple-acorn squash" or "vanilla bean" (green bean-pea-sweet potato mixed with vanilla flavored rice milk because the store was out of plain) don't really do much for my palate, Evan has done really well with them. And we do feed him tasty blends as well..."strawberry-peach-banana" is one of my personal favorites.

Our other milestone for the month was Evan's feeding pump biting the dust. The Kangaroo Pet pump has been with us since Evan came home from the hospital. I was trying to calculate how much that little pump pumped while we had it (we started out renting it from Keeler's medical supply, so it wasn't brand new). It's not the easiest math because the total volume per day has changed as Evan's gotten older (and as he's been able to take the bulk of his volume during the day). I would estimate the average volume that pump has delivered per day would be about 500 ml, times 3.5 years is approximately 640 L (169 gallons)!

The Kangaroo Pet is no longer made, so Evan's new pump is a Zevex Infinity. Of course the new pump uses totally different bags (if anyone wants any of the Pet pump bags, we have about 30 we can't return). It's a much quieter pump. It's smaller and sleeker. It doesn't have to be hung upright, so we were able to take the IV stand out of Evan's room. And the new pump came with an absolutely adorable tiny backpack that Evan will actually wear (pictures to follow--it's really cute).