A long-neglected Rachel Update

Friends

This little video is over a month old, and just fell into that pile of "things we need to post" before getting lost in Daniel's birthday.

Rachel, like her brother, has an amazing vocabulary, and has started to say some really funny things. The other day, Anida turned on the radio and the commentators were talking:

"Dat's a talking Song!"

Most of the time, she's easy to understand. She substitutes "s" for "f" at the beginning of words, so that "Firefighter" becomes "SiAH sitAH". "L" or "R" at the start of a word becomes "W" (I like it is I wike it and I ripped the book becomes "I wipped it"). We understand 99.9% of what she says, but occasionally, she'll rip out one that has us scratching our heads. "I wanna cosa cousins" turned out to be "I would like to close the curtains".

Rachel LOVES to read books, and one of her favorite activities (if not the top one) is to have books read to her. Dora and Diego are good standbyes, but she's recently discovered the Gruffalo books. She gets a kick out of painting, and now really knows her colors (the much earlier post on colors turned out to be a fluke, but we forgot to tell everyone that, which in turn caused our friends to think that their son of the same age as Rachel was a slow learner. Sorry, Sean).

Most of the time, she plays well with her brother, but when they got into it (usually Daniel's fault for getting in her face), Rachel had this nasty habit of biting him - hard. Thankfully, that seems to have diminished. A few weeks ago, Anida witnessed Rachel getting so provoked by Daniel that she grabbed a (clean) diaper from the pile in the bathroom and screamed "I hit you with a diaper" while actually swatting him with it. It's funny what constitutes progress these days.

Rachel has inherited Daniel's old tricycle, and has just figured out how to pedal it. She's not shown the same enthusiasm that Daniel did yet, but that might change. The swing is still her favorite. She'll hold on tight and as that you "Push me Hi-ah, please"

And that's about all for the Rachel-specific update. A more general posting coming momentarily.

Love, ADRE.

Daniel turns 4

Friends

Daniel turned 4 today, and the celebrations capped what has been about a week of birthday-related things.

The video is from his party at the park. In addition to our close friends, we also invited all of the kids in Daniel's preschool class, and quite a number of them turned out. So it was a bit of a madhouse, with roughly 25 children and and the same number of adults.














Everyone had fun running around, and we have some video of that too. When it was time for sandwiches and cake, the temperatures fell pretty quickly, and we had a bunch of cold little boys and girls. So the party ended pretty quickly after the cake was served and consumed.


Today began with the rest of us waking up Daniel with breakfast and presents in bed. Then Daniel made us all dinner (Shrimp and Mac'n'Cheese) before we all wandered down to the ice cream store for some dessert. All in all, a very pleasant way to celebrate a birthday.

Daniel got some really cool presents, and we'll talk more about those in a later posting, as it's getting late.



Happy Birthday, Daniel. We love you.

A.D.R.E.

I'd like you to meet Bennett

Friends

Through reading a friend's blog, I learned of the passing of Madeline Spohr, a little girl with hundreds of friends who never met her, but knew her through the blogosphere.

Like so many of the bloggers who linked to Maddie's page, I know this boy that I've never met, but I feel like his story needs to be told and shared. He's not my kid, but I want to use the little soapbox that is our blog to tell you about Bennett and what he means to me.

This is Bennett's page and story - the short version is that he's 5 years old and needs a new kidney.

I've never met this boy, nor have I ever met his family, but - well - in a way, he saved my son's life.

Bennett has ARPKD, which is a genetic condition which causes failure of the kidneys. It's a death sentence if it happens before birth.

Without kidneys, there's no amniotic fluid, without amniotic fluid, the lungs don't develop, without lungs, well - it'd be like stopping development at 20 weeks - it's universally fatal if it happens in utero. Except that Bennett's mother wouldn't accept that. She underwent a series of injections of saline into her uterus during the pregnancy, and despite being told by every doctor but one that it was hopeless, Bennett survived and today he's 5.

He's the only one.

He's a miracle.

Our first son, John Connor, also had ARPKD, and the input we got from the medical profession was unanimous - he was not going to survive.

I found the ARPKD support group on Yahoo, and through it met Bennett's mother who told me her story. Armed with that, we found a doctor who was willing to try the amniotic fluid injections on Anida. Did it work? Up to a point. In the first couple of weeks, we saw his lungs grow significantly. But you're not really supposed to stick needles into the amniotic sac, and in our case, the weakening caused it to rupture.

Still, the help he got for those couple of weeks gave John Connor a fighting chance at life, and when he was born at 29 weeks old, he fought valiantly for 29 hours before he just couldn't do it anymore. I owe those 29 hours to Bennett.

I can't give Bennett a kidney. He needs someone with blood type O. What I can do is to help spread his story, and that's where I'm asking for your help. I am not asking that you make my cause yours, but the more people that know Bennett, the greater the chance that a kidney donor will be identified. If you would, please take a moment to read Bennett's story, and then consider if you have a way of helping or passing it onto others.

Thank you.

Eric

A series of random updates

Friends

You could think, looking at the pictures on this entry, that we've had 4 seasons in 2 weeks. There was a blizzard and a heatwave, and that's just Colorado for you.

It took until late March, but we finally got enough snow to go sledding in the neighborhood. Daniel was a huge fan - Rachel a little less so.

Farmor and Grandpa have gone back to Norway after almost 2 weeks here. The kids got very used to having them around, and as usual, the days after they left were a little unbalanced. As Rachel would say "Dat not wight" (that is not right).

Daniel broke from his firefighter routine briefly, so that he could be a pirate wandering around Roxborough State Park, and impressed with his skills on the Razor. Rachel showed her artistic side on the deck and went for the nightly "family walk" with Grandpa.

First Daniel got a cold, then Rachel (and farmor), so we've been coughing a bit around here.

Daniel went to the Denver Auto show with Eric and the boys (Harrison, Harrison, Stu and Eli) and you know that your brand is in trouble when a 3-year-old says "These are all rental cars" as he approaches the Chrysler booth.

Finally, Daniel had an awesome swim lesson today. He was a great listener, and swam about 1/2 of the pool length with no assistance, and about 1/3 of the length on his back. His new teacher was very impressed. Oh, and he's been doing a heck of a Manfred Mann impression. We should have better video, but here is what we have.

Until next time.

Love,

ADRE.