The Brady Bunch

Memorial Day Weekend - Saturday

HEY! It was finally my family's turn to take a trip! Over the long weekend we took the trailer and headed to Vernal. I wanted to go somewhere I had never been and not somewhere too hot or too cold, so it was off to Vernal. It would have been a little better if it weren't raining the entire weekend and I hadn't forgot to pack all of Hailey's special foods, but we still had fun.

Saturday we went to the Dinosaur National Monument. I don't' know where the camera was or what I was thinking, but I never took any pictures of any of the actual Dinosaur fossils we saw while we where there. We went on a hike by the closed quarry building and there was a tour guide on the trails to point out all the fossils you could see in the rocks. It was actually pretty cool. Then we drove back to Josie's cabin, and along the way passed quite a few petryglyphs. At the cabin we took a hike into Box Canyon, and then went back to the cabin for lunch. Then we went to one of the campgrounds so the kids could fish the Green River (which is actually very brown!) Afterwards, the kids finished all of their booklets so they could become Junior rangers.

Field Day

Every year the student's at St. Paul go down to Salt Lake and compete against all the other Lutheran private school's in various competitive events. Last year I was not able to go since I was working, but I went this year. It was a long hot day in the sun, but the kids have a blast. Even though we were at this huge park with tons of events to compete in all they really wanted to do was play at the playground. Go figure! Ethan came home with four ribbons. He won first place in jump roping. He jumped 155 times in a minute. He also got ribbons for shirt exchange relay, ball throw and crab crawl. Hailey got three ribbons. She got second place in jump rope for 84 jumps in a minute and third in tug-a-war and sack race. The cool part about Hailey's day was being the only girl in her class. Most of the events were divided between boys and girls, so every time she went to compete she had all eleven boys in her class rooting for her. Her teacher told her to savor the moment because she might not ever have 11 boys cheering just for her ever again! It really was cool. Hayden had four ribbons. One for tug-a-war, sack race, class relay, and crab crawl. In the end it was neat to see everyone walking around with all their ribbons hanging all over them.

End of year program

All three kids are in the picture, see if you can find them...

We have finally come to the end of another school year. There are times when I can't believe how quickly it has gone by and there are others when it has seemed to drag on, but one way or another it is finally over. In order to celebrate the end of the year, the 1st through 4th graders presented a program entitled, "I am a Promise." I really enjoyed the catchy music and inspirational theme. It was hard not for everyone in the house to walk around singing it the whole time. "I am a promise, I am a possibility..." Since I have been subbing a lot this year, I was able to attend a practice or two and the run throughs were great, but the night of the final performance things didn't quite gel. One of the mic's quit working and I don't know what Ethan was looking at the whole time, but it wasn't the audience! Although Hailey has been the one with a year of singing lessons under her belt, you couldn't tell. Hayden was singing loud and proud and Hailey looked scared to death. What will I do with this girl? She's the one perfect pitch!

Cub Scout Graduation

So we made it all the way through an entire year of Cub Scouts. I don't think I ever missed a meeting - Shocking! In fact, the attendance was so good in my den, that we actually earned the National Den Award. Ethan moved up into Bears (which we are going to try to get him through this summer so he can be with his classmates as a Webalo next year.) Hayden moved to be a wolf, and I have agreed to be the den leader again next year. WOO-HOO! What am I thinking?

Seriously, I have a great time with the scouts and really enjoy it. I will be sad when they kick me out in a few years when they only want male leaders, but for now I'll have fun!

Andrew's 3rd Birthday

I thought it was funny when I looked at Andrew's 2nd year birthday picture and his 3rd year birthday picture how similar they were! He is wearing the same color shirt and his cake is similarly themed -- trucks and cars! The only real difference is his cheeks are a little less chubby! But they are still way cute! This year Andrew's birthday was on a Friday and I had to work that day, so the next door neighbors were watching him for me and took him to a school carnival and picnic. Then when the kids were out of school we took him to the Treehouse Museum. The next day was Hailey's recital day, so we didn't really have his family party until the next day. He got a remote controlled car and a bubble lawn mower and some Hot Wheels cars. I think he had a lot of fun!

525600 minutes

The picture is from Andrew's Second Birthday.

"525,600 minutes, 525,000 moments so dear.525,600 minutes - how do you measure, measure a year?In daylights, in sunsets, in midnights, in cups of coffee.In inches, in miles, in laughter, in strife.In 525,600 minutes - how do you measure a year in the life?How about love?" -- Seasons of Love from the musical Rent.

Last year at this time there was a potential that both of our son's were incredibly ill. We were awaiting the results from both biopsies the boys had under gone. Hayden had just gotten his tonsils and adenoids out and were checking for why his lymph nodes seemed so enlarged. Luckily, his test results came back normal. Andrew was awaiting the results of the definitive test to tell whether or not he had San Filippo's Syndrome (or MPS 3) -- which would have been a deteriorating, terminal diagnosis. He had already had one test come back positive. While others in the family were convinced he was fine, I was not so optimistic. The stress and the fear were almost overwhelming. I quit my job before the end of the year and had no intention of going back to work. We wanted to keep me home to be with kids, and although Andrew did get sick RSV again this year, we were able to keep him out of the hospital (barely).

At the appointment where they told us Andrew didn't have MPS, they were still stumped by his symptoms. At one point they asked if he had "freckles" on his penis. I thought that was a weird question, but every weirder, I guess is the fact that he did. The doctor left the room and came back with three other doctors and a camera. They wanted to take a picture of my son's private parts. They suggested that those freckles were an indication for Banyan Riley Rubaclava Syndrome, and they did a preliminary test for it.

I went home and read the symptoms list, I thought it seemed to match pretty well. I printed out the information and took it to my next Dr's. appointment (which wasn't my normal Dr.) He said he deferred all those matters to the Dr's at Primary's. Well, the test came back negative so I sort of wrote it off. But then he started to develop these strange bumps on his tummy. (When you do a search for BRR - a picture comes up of a little boy's parts and his tummy with the little bumps just like Andrews). After my normal Dr saw them she left the room and came back with a medical book earmarked to the page about BRR. She suggested that we finally have a diagnosis. So now we have to back to Primary's for confirmation testing. BRR is so rare they can't even tell you how many people in the world have had it. They just say it's "extremely rare". Basically is it the deletion of a tumor suppressing gene, so the bottom line is that he is way more susceptible to developing tumors and cancers. But we haven't had our formal meeting yet with the Dr's about it, so we'll see how that goes...

It it amazing what can happen in a year...