Day 3: Austin, TX

We had such a great "spontaneous" adventure at the McDonald Observatory that on our drive from Van Horn to Austin we basically became "Historical Marker Chasers". No, not NEARLY as exciting as Storm-chasers. Our biggest bust added about 30 minutes to our trip and was so insignificant that there wasn't even a picture to take. We found this view on that detour, which I thought was pretty cool:

Timothy also pottied outside for the first time! This picture was taken right after he did it, and I seriously think he felt a little more grown up! I did take a picture of the actual act (behind that giant cactus right there), but I'll keep that embarrassment off of the world wide web!

On Day 3 we made it to our first stop to see people we love! We had a wonderful time with Josh, Sheila, Zoe, and Ben. Did I mention we had a wonderful time? It was so great! We went swimming that night at the coolest pool ever! The kids loved it so much we went again the next morning. I have pics, but I took those on Day 4...

Day 2: Van Horn, TX and McDonald Observatory

Welcome to TX!!! I was going to put this "Don't Mess with Texas" sticker on our car, and when Dan said, "Oh no you will not", I happily submitted because I am a loving Christian wife. Instead I stuck it to my chest. This picture was taken at Dairy Queen (oh, how we love thee). And while I'm embarrassed at my appearance, I am not in any way embarrassed about the sticker. If you can't understand why, then you're just not a Texan.

So we made really good time on day 2, and got to Van Horn early. We wanted to get a couple more hours down the highway, but we couldn't get a refund on our hotel. I had picked up a Visitor's Guide when we entered TX and found it to be really cool. That's where I read about the McDonald Observatory, which I had heard great things about from my mom but didn't know we were near it. We happened to be there on a night where they have "star parties", and what a great treat! If any of you are ever in Southeast TX or are making a trip to Big Bend, this is a must stop! We sat out in the amphitheatre, and it was like experiencing the planetarium, but all the stars were real!!! Our speaker even had a light-pointer thing, and I don't know how the illusion worked, but it looked like he was actually pointing at every star and constellation that he told us about. So cool!

The observatory is famous for the 3rd most powerful telescope in the world (not pictured), but the 2 telescopes above are quite powerful and were open for the star party. The second picture shows what it looked like inside the dome, and through that telescope we saw Saturn!!! There were even 4 moons of Saturn visible, but I was so excited I forgot to look for them (that doesn't sound like me at all, does it?). Dan saw Titan, Saturn's largest moon.

On our drive to the observatory (50 or so miles), the sun was setting and we saw tons of wildlife, even up close and personal.

CF Update

Today we had Sam's quarterly CF appt. It was pretty uneventful, which we like. In these for 4 months, Samatha has had her longest stretch of health, and she was more accepting of pokes and prods today than she usually is. She's growing up! She is not getting The Vest yet since it seems that CPT has been sufficient to keep her lungs clear so far. The Vest will make life a bit easier for us, but I can only express gratitude that Sam is as healthy as she is.

Weight continues to be a challenge, and while we didn't lose weight I think the road trip did level us off more than I would have wanted. She was 25th percentile height and 15th percentile weight. When we go back in 2 months, I am hoping for a chubby girl!!!

I am often asked, "So does Samantha have a milder form of the disease?" No and Yes...

No

Over 600 mutations have been identified, and Dan and I happen to carry the same one. It's been named "delta f508" and is the most common mutation. It accounts for 70% of the CF genes in the U.S. As Sam's dr gently reminded me today, those with the "508" do exhibit the standard characteristics of CF which are extreme digestion problems and lung infections. (Unlike some mutations that don't have the digestion problems or don't have many respiratory problems). He admitted (in his wonderfully cool and collected way) that he is a bit surprised that Samantha has not "even had IV antibiotics yet". So because she has 2 delta f508 she does NOT have a mild form of CF.

Yes

One thing we can hope for that could lessen the severity of Sam's CF is Modifier Genes. These are other genes that actually influence the CFTR gene and play a direct role in severity. They are actually starting identify these modifier genes in order to know which CF patients will have the hardest time in certain areas. I just read on a CF forum about a mom who has been awaiting test results. She knows her child got one delta f508, but she has been waiting for the results of the 2nd mutation for 11 months. They've now told her it could be up to 3 years because they are hoping to have identified the modifier genes as well. Science is wild!

As I've been writing this, I've caught myself wanting to say, "God has really blessed us." And while that's true, I don't believe Sam's health is necessarily an example of it. God has blessed us in thousands of ways, but if Sam gets really sick tomorrow and stays sick, that will not mean that He has just removed a portion of His blessings from us. I am thankful that health is not the apex of His blessings. In fact, I would venture to say after reading Matthew 5 that there are blessings those who are sick receive that none of the rest of us can fathom. What I can say is how grateful I am for Sam's health and humbly thank the Lord that today she has it.

"If Only"

I'm sure I've said it before, but if you haven't checked out Prodigal John's blog Stuff Christian's Like, then you're missing out on a good laugh and a good look in the mirror! I'm loving this recent post about how we Christians often find ourselves saying If Only.

Day 1: Tucson, AZ

If you see the word "Day" in the title followed by a number then you know I'm typing about our recent trip. Expect 15 of these! Most will have minimal words and a possible interesting pic or two, but I'm not making promises. One great thing about road trips is you get to see random cool stuff going down the freeway-like the back of this F18:Welcome to Arizona!

We stopped in Tucson at an Davis Monthan AFB that has cheap and roomy lodging. The kids were introduced to a sleeper sofa. Timothy was really a little in awe. This base has multiple planes set up as a mini-museum, so we took some pics.

Timothy was getting hot so he used the airplane as shade.

Timothy and Samantha Napping

This is a first...both of my children sleeping in the middle of the day, at the same time, without any prompting from me. Sweetness!

My baby boy is 5

I have such a unique relationship with Timothy, birthed from continually trying to understand him and connect with him emotionally. He's a bright boy, but so many things (everything socially) he has done a year to 2 years behind anyone his own age. Even though he is quite independent (aka strong willed), this "delay" has allowed me to have him as a baby longer than I normally would have been able to. Things are changing, though, and he is reminding us daily that he is maturing. It's painful and beautiful all at the same time.

He turned 5 yesterday, and since he just promoted to the school-aged SS class we decided to get him a Bible for his birthday. Kid's Bibles are so cool nowadays! When I was a girl we had Precious Moments, but not all the hundreds of options they have now. Anyway, I got him the Super Heroes Bible, along with some Bible Hero action figures that he asks for every time we go to Berean. His b-day party with friends won't be for a couple of weeks, so you'll see more pics then.

Wordless Wednesday

Northern New Mexico and Arizona are beautiful!

We're home

Didn't you like that great play by play I gave you of our trip? Boy that didn't work out as planned! We had virtually no cell reception, and even less Internet access. I am determined to do it, though! Once I get everything unpacked, I'm going to start typing up every day of our trip so you can feel like you were there because I know a trip to TX & KS is what you're dreaming about! We really had a wonderful time and are actually calling this trip a vacation. I missed all of you, though!

P.S. Once you have over 1000 unread blogs in your Google reader, Google just says you have 1000+. I'm sure there are amazing deals that I missed out on and funny posts from BooMama that would have had me in stitches, but unfortunately I must click "mark all as read" for all of them. I'm starting over. If Google doesn't think it's worth the time to keep counting them, then I need to take a hint and not read them.

Heading Out...

So we leave for vacation tomorrow (actually, later today since it's 1:30 in the morning). I never can sleep the night before a big trip, and I have had the car packed up for hours. A month ago I wasn't looking forward to this trip at all, but as it has approached my mind has totally changed. I am so excited! And so is Timothy. Tonight he asked me why I was taking his cars from his room. I told him it was to pack them in our car for our big trip. His eyes got huge, and he said, "Because it's almost FRIDAY?" Oh he is SO cute sometimes.

He is happy for the same reasons I am happy. We are about to see a lot of people we care about. Tons of family (not just immediate family, but as far out as 3rd cousins). We're also seeing family from New Hampshire that we LOVE and haven't seen in 4 years. And as if that weren't enough, we get to see 3 dear friends of mine: Sheila, Tonya, and Christi. Oh, I can't wait.

So I'm making a commitment to have a daily summary of the next 16 days. You don't want to miss how exciting of a drive it is through AZ, NM, and West TX, do you? I may not get to a computer every day in order to upload it, but I'll write the old fashioned way and then post 2-3 days worth if I have to.

Texas or Bust!

CATS

My roomie was in town last weekend on business, so I had the brilliant idea to go see the musical CATS. I now feel like it is my responsibility to stop people from going. It was awful, and how in the world that beautiful song "Memories" is in it is beyond me. I commented out loud to Gindi that the worst part of the musical is this word they keep using "jellicle". So there's my warning to avoid CATS. Go see "Les Mis" or "Wicked" instead.

Now the fun part of the night was being giggly with my roomie from college!!! For those of you who know Gindi, you know she is WAY more proper than I am (being a prestigious lawyer and all). Outside the theater there were 2 "cats" that everyone could get their picture taken with. When Gindi flatly denied my request to get our picture taken with them, I kept trying to get their picture. Unfortunately, person after person kept stepping in, and I didn't want a picture of total strangers (except the cats of course). I was about to give in and let G take one of just me with the cats (I was in a particularly silly mood) when my hero "Troy" stepped in...

"Why don't I take a picture of both of you with the CATS?"

I don't know if he had heard all our banter or not, but he saved the day! I gave him my camera quickly, and G had no option but to acquiesce. But as you can see by the picture, she wasn't happy about it...


Because the musical was not the theatrical experience we were hoping for, we got a little loopy during intermission. I even pulled the whole "stick my arm out straight and take an unfocused picture of ourselves" bit. We kind of look like we belong back in college, don't we?


And I even caught her doing this. Some day when she is running for office, these pictures will resurface I'm sure.


And we got one normal picture before the night was over. We have known each other for 17 years! I'm so glad she's my friend.

Traveling with CF

I'm 3 days late typing my monthly CF post! We are going on a 2 week trip to TX & KS, so I thought I would post about traveling & CF:

1. Nebulizer & Allergy medication-This is part of her daily routine, but will be a little more critical as we travel. We will be traveling to places with new allergens that could cause a flare up. Also, we will be in different humidity levels. San Diego is more humid than AZ (we're going to the Grand Canyon on our way back), but much less humid than TX.

2. Gatorade-We live where it's 80 degrees is a hot day, and in TX and KS right now that would be a relief. Those with Cystic Fibrosis lose salt quickly and therefore get dehydrated quickly. Have you tasted Gatorade? Yuck. But we have to have plenty on hand and make sure Samantha is getting plenty in her! Yes we call it juice.

3. Enzymes-This is probably the trickiest part of traveling. Right now we have an easy routine. She takes her enzymes with yogurt. For those who don't know, we dump the contents of 3 capsules into her yogurt to eat before each meal or snack. Only the food she gets for the 1st hour after her enzymes actually benefits her. She is finally doing great with weight, and we don't want this trip to set us back. We've purchased a ton of applesauce containers (since they don't have to be cold). We've also scheduled sit down meals instead of eating on the road. This way she'll be good and hungry (not that she's not always hungry) when it's meal time.

On an food note (completely unrelated to CF), we will have no crackers in the car the whole trip! This is going to be quite radical for us, so please pray for all these details!

Update: Steph & Natasha both asked me good questions that I want to address. No crackers in the car because they are just so entirely messy. I want to get to TX with a semi-clean car and that's my best chance. Our plan is fresh fruit each day (which even convenient stores carry now!) Samantha will love this as she is a fruit FREAK, but she is normally supposed to eat things with higher fat content. In Timothy's limited diet, he'll eat bananas and he has taken bites of grapes, oranges, and apples.

Smoke is a continual concern with Samantha. This is another area we feel blessed here in San Diego because California is a smoke-free state (indoors, that is). The one ironic thing I find is that employee smoke areas are always at the doors entering places (grocery stores especially), so often we have to walk through the smoke to get inside. I digress. The major cities we're traveling to are smoke-free, and most of the small towns we're going to...okay, I just realized I haven't thought about Podunk, New Mexico! I had been thinking about our destinations with family, but not the small towns on the road trip. We may just have to buy the fast food, and then go find a park to eat it in. We've done that in the past when we travelled here with our dog. Thank you, Steph, for helping me think about that!

Graduation Day

I can't believe it's been 10 days since I blogged! I have been so busy both having fun (I'll blog on that later) and getting things squared away before we leave for our trip this Friday that blogging has just been last on my list! I haven't even been able to read blogs-only one or two a few days ago!

We just got home from Timothy's preschool graduation, which was a little more emotional than I thought it would be. And on the subject of school, I got a call this morning from my first elementary school choice, and Timothy has been officially enrolled. I can't believe we're starting kindergarten in 3 months! He and Samantha will be going to a Christian preschool this summer for 2 mornings a week. Yes, it's pretty much for my sanity, but it will be great for Timothy. And Samantha is such a sponge-I can't wait to see what all she will soak up in her first school setting.