Friday, October 31, 2008

The Last Week

The last week of October was a busy one. We had Elizabeth's birthday, Nathaniel had his cross-over ceremony from Cubs to Boy Scouts, and then it was Halloween.

First, Elizabeth's birthday. Can't believe she is six now. Because she was so small for so long I was able to maintain the illusion of her being a baby for longer then usual. She definitely is not a baby anymore :) She is a very bright little girl who is trying to be more grown up then she is. I'm grateful for every birthday we do get to be with her and that every birthday has seen her happy and healthy.
Here are some photos from her small family party:

Before this party, we had the cross-over ceremony for Nathaniel. He finished up his Cub Scout years with his Webelos rank and his Arrow of Light. Two other boys, Luke and Jonathan C., also received their rank and arrows and I'm very proud of them all. I wish I could take some credit but that goes to their moms who have been amazing working with them at home :) Steve Willoughby did a great job leading the ceremony. He always does :) I know he very much enjoys being with these boys and seeing them advance and that shows at every pack meeting. Thank you, Steve, for always trying to make pack meetings special for the Cubs!
I have to admit I almost shed a tear when Nathaniel walked across the bridge to his new leader, Brother Campbell. I get way too emotional. To me it wasn't just Nate walking across a small wooden bridge on the stage. I saw it as one more step in his life that he takes away from me towards independence and growing up. Sigh, like I said, too emotional :)

And, last of all, our week ended with Halloween, our family's favorite holiday. Only because all of us are candy junkies :)I guess it didn't take Seth long to figure out the process. After three houses Rob said he was running to the next door to get more candy.
Have to show Lori's costume, Bride of Frankenstein. Can't believe she had enough hair to style it like that!! And to use her words, she looked "fabulous"! She was good enough to stay with me and hand out candy as I wasn't feeling too hot last night.

Sunday, October 26, 2008

Award, for what I'm not sure :)

Well, a dear friend sent me an award, for what I'm not exactly sure. These are new to me. But hey! Nice to know someone is thinking about me :) Thanks, Quawana!!
This one comes with a requirement. I have to post 6 things I value and 6 things I don't value then pass it on to 6 other bloggers.

6 things I value (in no particular order)
1. Family
2. Good friends
3. Chocolate
4. My religion
5. Sleep
6. Quiet

6 things I don't value
1. Expensive cars
2. Conformity
3. The world's definition of success
4. An immaculate house
5. Martha Stuart
6. Pedicures

Ok now the award goes too:

Unmask the Cure

Friday night Rob and I had the chance to get our feet wet in the pool of volunteering for the CF Foundation with the Portland chapter. We signed up to help with the yearly dinner/auction. We were instructed to dress in all black and given these vague assignments. Vague only because we had never attended one of these. So needless to say we were a bit nervous as we had no idea what to expect.

We didn't have a great start to the evening as we left Aloha at 4:15 and barely got to the Marriot in downtown by our expected arrival time of 5:30. Grrrrr. One wrong turn in Portland completely threw us off. But we made it with a few minutes to spare. The theme this year was "Unmask the Cure", it was a masquerade. They had fun masks for sale and everyone started showing up in ritzy black suits and dresses. Talk about feeling uncomfortable. Rob and I come from hick roots and have never been comfortable around glamour. However, it was fun to sit back and watch just how the rich behave :) Haha! Pretty much like "normal" folks just with fancy clothes on LOL! I wish I had grabbed my camera out of my purse. One lady, I found out later is one of the head haunchos for the Portland Chapter, was completely decked out in masquerade attire. A gorgeous Elizabethan type dress with this elaborate mask. She was very pretty.

Rob and I were in charge with a couple others to walk around the silent auction tables and keep on eye on the bids. At the close we were to grab the bid sheets and run them to the front desk. It was disheartening to see that at least 1/2 of the items offered received no bid at all. The ones that did, those people received some awesome deals as no one tried to outbid anyone. It's hard not to take that personal as this is the money that is being raised to find the cure for my daughter.

Following the silent auction was the live auction. That got better. Still, I'm sure after recent economic events, people were feeling a bit less rich :) At one point they stopped the auction to let three families come forward and talk about how CF has affected their life. I was not prepared for that. Not only am I super emotional when it comes to this stuff but I was stuck right up front. During the live auction it was my job to run the bid sheet to the highest bidder and have them sign it so I had to be right in front so I could pay attention. I had to bite my tongue the entire time they were speaking to keep the tears from rolling down my cheeks. It's so heartwrenching listening to how others have learned and then dealt with their child being diagnosed with CF. One family lost their daughter just a few years ago. She was only 25. A rant for a later post is the fact that all these families discovered their child had CF during the first few months of life. We waited 2 1/2 years before we found out what was wrong with Elizabeth. But like I said, I'll rant about that later.

During this time we got to talking with a really cute couple. Lindsay and her husband Jon. Lindsay actually approached Rob at one point and asked if he was Elizabeth Beasley's father. They started chatting and then he brought her over to meet me. Come to find out our daughters were up at Doernbecher at the same time for a regular routine appointment. They both have the name Elizabeth. Pat, the nutritionist, had come into their room and got things confused with our daughter who she had just seen. That's when they found out our daughters have the same name of Elizabeth Rose. They both have red hair. They are a year apart but their birthdays are within weeks of each other. And they both have CF. Lindsay is on the committee for the walk that happens in the spring, Great Strides. I was wondering where I had seen her before. We went to help with the walk this year. Anyway, the biggest let down to all of this is the fact that these two little girls can't be friends. We could let them meet but they have to stay 3 ft away from each other. Of all the stupid things we have to go through with this disease this one saddends and angers me most of all. So, I'm hoping to get in contact with Lindsay again and maybe at least exchange pictures and keep in touch.

As the night progressed you could tell the alcohol was starting to loosen people and their wallets up :) LOL They restarted the live auction and there were a lot of funny moments. The auctioneer was ingenious. A set of car keys, Lexus, were left in the bathroom and then found. He actually started to auction them off and people started bidding on them!! The owner had to pay $100 to get his keys back!! He did that with several items later in the auction. Didn't even miss a beat, took advantage of every situation he could to raise money. All in all I think the Portland chapter did pretty good. I think I'll write Danielle and ask just how much was riased.

It was fun to go help out. I very much want to be more involved. Danielle had contacted me last year but I had just had a baby and didn't feel up to it. Now that everyone is a little older I'm feeling like I can be more involved and I'm looking forward to more chances to help. It is for my daughter after all :)

Saturday, October 25, 2008

Halloween Party

We decided this year we would have a Halloween party. I've been waiting for Elizabeth to get old enough for us to do one for all their friends. We had so much fun and I hope the kids that attended did also! We split the kids up into three age groups just to have smaller group sizes and to work with similar ages. Beth was wonderful as always and came to help us out. I love that she is always so ready to jump in on my crazy ideas and offer assisstance. The kids showed up in fun and scary costumes. I would have to give most creative to Riley Short. I am so sad I didn't get a picture of her in her costume. She ended up taking it off so she could participate. She had a "mom" figure starpped to her back and then a baby front carry on her front. She was the head to the baby and her legs were the "mom" legs. So it was supposed to look like a mom with a baby in a front carrier.

Getting ready for it was nuts but it was worth it to see the kids having so much fun together. I love doing parties for the kids :)

Now it's our turn. In just a little bit Rob and I get to attend an adult costume party. Gypsies is the theme. Should be interesting!! We get invited every year and this is the first year we were able to say we could make it! I am so excited :)

Tuesday, October 21, 2008

CF Woes

Elizabeth had her quarterly CF appointment this morning. Not a happy one. As many of you know Elizabeth is very skinny. Pat, the nutritionist, gets after us at almost every appointment about her weight. Half the time we don't know what to do because Elizabeth just doesn't like to eat. I know, weird. So we've tried a couple strategies and despite these her BMI has steadily made it's way down since December of last year. If it goes down again by the next appointment we get to look at having a feeding tube inserted into her stomach and she will be fed through that at night while she sleeps. Weight is so important with CF. They want as much fat as they can get on these kids not just for growth but when things go wrong and they get really sick they need fat to lose and not waste away. Elizabeth did get really sick just a few months ago and refused to eat for a week. By the end of one week we could see bones sticking out and she looked awful. We are STILL trying to gain that weight back. This is so incredibly frustrating. Most days we go about our day and don't even think about this stupid disease and then we have these days where we are reminded yet again we can't do that. At first I was thinking "OK, a feeding tube, can't be all that bad" until I asked Pat how long they have to keep them in. In most cases if one has to be inserted now at this age it stays in until they are 18-19. If she can't get a grip on eating now she won't as a teenager so they'll just keep it in. All I can think is lovely, one more way she has to be different. Elizabeth loves to swim and while I'm sure she can swim with the thing it will just poke out and others will always be asking what it is. Same with any cute tops that are tight fitting around her middle. And I know Elizabeth, she's going to hate it. She doesn't even like band-aids on her skin. The first thing she begs the doctors to take out after her sinus surgeries is the IV. She could care less that they just roto-rootered her nose and it's dripping blood, just get the darn IV out of her arm :) So yeah, let's add a permanent one to her stomach. I know the tube is better then wasting away from malnutrition but these added little bonuses sure get tiring to deal with. I can't imagine what other parents go through with children who are so much worse off. Elizabeth is very healthy, too skinny, but healthy lungs. We do a lot to keep her that way. And just when you get a handle on one thing something else pops up. Sigh. As always, we'll do what we have to. Doesn't mean we have to like it. As for the next three months we will be creating a chart that will help her count her calories. The poor girl has to eat 2340 calories a DAY to get back up to where she was last December. 75 g of fat and 50 g of protein. I figure we are doing good these days to get 1800 cal in her. So, counting calories to gain weight, never thought I'd have to deal with that :) She loves anything with numbers and loves to chart things so this is where we'll start and I'm keeping my fingers crossed that it works.

Sunday, October 19, 2008

The Maize

We had a great day yesterday as a family. We took the kids to the Sauvie Island Maize at the Pumpkin Patch. It is a yearly tradition for us now. Lori, my friend from Idaho, has never been to something like this so of course we took her with us to show her the fun :) We all had a ball together! The weather was beautiful and the mud was managable in the Maize. Last year we got about 20 ft in and had to turn around and ask for our money back. We did get it back but we notice this year they have signs up stating no refunds. I'm guessing they had a lot of refunds to give out last year.

We usually let the kids lead the way. They are pretty good about finding their way around these things. I generally have no idea where we are at but the kids can usually guess which part of the "picture" we are in. Usually only takes us a 1/2 an hour to 45 minutes to get through the whole thing.

After we conquered the Maize we hopped on the hay ride that takes you out to the pumpkin patch. There we spent much time each looking for our perfect pumpkin. Lori found hers right away, a nice big green one! Green is her favorite color and she couldn't pass it up. Usually our rule is if you can't carry it yourself you can't have it. She heard us reminding the kids of this and at first wouldn't admit that maybe the pumpkin was too heavy for her to carry. But we could soon see it was a bit of chore to haul it back to the waiting area for the tractor back to the barn. She refused to let us help her carry, it was the rule after all :) She just makes me laugh. We ended up breaking our own rule anyway as the boys found their perfect pumpkins which just happened to be 3x larger then last year's!! How can you turn down a kid who has found his perfect pumpkin? So Rob and I helped them carry theirs back to the tractor.

Then it is usually customary to go in the store and buy some fresh corn. After that it's on to the refreshments stands where the kids get caramel apples and the adults get elephant ears. It was funny watching Elizabeth trying to eat hers as her mouth is so small. She was having a hard time getting a bite of apple.

We went home totally worn out and sore but we had so much fun. It's always worth it to see the kids out there having so much fun!

Thursday, October 16, 2008


Jonathan does not have school today due to parent/teacher conferences. I think he's a little bored as Nathaniel and Elizabeth still have to do school. I came down the stairs and saw Jonathan outside with this on his head.
I give him 10 points for imagination :) Maybe we could use this idea for some crazy Halloween costume.

Sunday, October 12, 2008

Another Happy Birthday!

Last week we celebrated another birthday! Nathaniel turned 11 on Thursday. We had a quiet evening at home with Grandpa and Uncle Shane joining us for pizza and presents. Nathaniel picked out a great bday cake with Indiana Jones on it.
Carniverous plants!! How cool!!
Happy to get another Wii game!
Seth was at it again. While Nathaniel was opening presents, Seth had gotten a hold of Elizabeth's enzymes and was putting them down the vent. Here Rob is trying to retrieve them.

We told Nathaniel he could have one friend over and he chose to have Noah over for a sleep over the following (Friday) night. Noah is a sweet kid. Always says "please" and "thank you". Always considerate of other people's feelings. He met Nathaniel in 1st grade when Nathaniel attended Errol Hassell. Ever since the two have stayed in contact by phone and seen each other pretty much once a year on Nathaniel's bday. I've decided we need to have him over more often as the two of them have such a good time together. We stayed up late watching the third Pirates movie as Noah hadn't seen that one yet. Saturday morning we all went to the bowling alley with Jonathan and while he bowled with his league the rest of us bowled down at the other end. The boys had a great time together and Nathaniel even managed to break 100!
Nathaniel and Noah at the bowling alley.
Seth getting really bored in his stroller. He's showing off a mouthful of grapes here.

Jonathan is having fun with the bowling. He liked doing it so much over the summer that he chose to drop gymnastics and continue on with bowling until spring. His team is pretty cute. It consists of Jonathan and two brothers named Jonathan and Jesse. They chose "The Three J's" as their team name.
With Nathaniel turning 11 he gets to move on to the next adventure in Scouting. He leaves my little group of Webelos and starts with the 11 year old scouts this week. I'm sad to think his cub scouting days are over :( It seems like such a short time. I know Nathaniel is going to have a great time though as Brother Campbell is his new scout leader and I don't know how anyone can not have fun with Brother Campbell around :) Turning 11 also leaves Nathaniel with only one more year in Primary. It is crazy to me to think that this time next year he will be a Deacon and helping to pass the sacrament at church. Ahhhhhh!!! Where has the time gone? It passes way too fast. And just around the corner is Elizabeth's birthday....