Rachel has been suffering from a nasty rash.  It started off slow around her shoulders and it has progressed down her body, leaving a whiteness in the pigmentation of her skin.  I’m concerned that it is an autoimmune rash and actually brought her to the doctor on Tuesday for an exam and blood work.  I asked the doctor to test her for Lupus markers and hopefully we’ll know in the next couple of days.  The rash is nasty and seemingly unrelated to medication or Batten Disease.  She is quite uncomfortable because its currently in her inner and outer thigh area so hopefully that will clear up or move soon. I’m also waiting on a Dermatology referral to Boston Medical Center.   Good News!  We are (me and the 4 kids) headed to Colorado for a quick trip to see the most AMAZING friends  and family in Kansas City and to cross The Flying W Christmas Round-Up from our Bucket List. Rachel has loved the Flying W since she was an infant so this should be a truly remarkable experience for her and for the other kids.  They are STOKED about going to the 8pm showing so they get to stay(read the rest)

Is wonderful and yet it sucks. I don’t think anyone has a truly blissful life like I thought possible when I was a child. I’m going to focus on the good things right now because I think they outweigh the bad at this moment. The Good We’re (I’m) selling lots of candles for the holidays to raise money for Batten Disease Research I’m taking the kids on another HUGE road trip in a few weeks and we’re going to see the Flying W The Good Geeks (our business) is about to open up another shop with another in the works Rachel’s medication seems to be helping without making her eat and eat and eat Julie can READ!!! Things are going well today and while they don’t go well a lot with a “sick child”, I wanted to write this one down to reflect on in a day or two when we’ve had a major catastrophe (relatively speaking, of course).

I’d say version 2.0 (since we took a trip in August) but I feel more comfortable adding a sub version to this trip since its still 2010 (and version 2.0 is planned for January 2011). I’m taking the kids back to Colorado next month for a week and can’t wait. We’re going to have an early Turkey Day with the best of friends and if we’re lucky we’ll get to see some snow. Also hoping to find somewhere that has snow tubing already going by then but won’t mention it to the kids until I get some good news. And we’re also hoping that the Flying W will have already started up their Christmas Show by then. Rachel loves their music.

The Drive: Today I drove the kids and I from the northern part of Colorado Springs to Cañon City (and back). We had free tickets through our Make-A-Wish trip and Give Kids the World and I thought it would be a great time for the kids. Yet another Bucket List item got crossed off today! The Royal Gorge is the proud home of America’s highest suspension bridge and is sure to scare the crap out of you if you, like me, are afraid of falling from heights. We didn’t make it all the way across the bridge because the “swaying” made me really uncomfortable and I didn’t want to scare the kids. I really enjoyed the incline railway (click here to see it) and I took a bunch of pictures of the kids at the bottom, next to the beautiful Arkansas river. There were a lot of stairs all over this place and it became quite difficult to manage for Rachel. I carried her (all 110 pounds) down 2.5 flights of extremely steep stairs to the bottom of the gorge, piggyback style. Worth. Every. Last. Step. Total Miles: About 100 And tonight I went out to coffee with some great(read the rest)

The drive: Not much of a drive today because we puttered around Colorado Springs. Checked out the camp grounds that I had found online and booked a couple of days in there for later this week. If you haven’t noticed yet I’m planning things out without really planning things. I find more flexibility for the children leads to more fun. Total miles: Maybe 25? Today we did two things on our Bucket List! First, we got to ride the Cog Railway and eat dinner during the trip. Second, we climbed at 14,110 feet in our cog rail car to the top of PIKES PEAK! Climbing Pikes Peak in a cog car is one of my most favorite experiences of my entire life. I am so glad we went and we had a great time. The summit of the mountain was very cold, about 30 degrees with who knows how much more taken off for wind chill. It was windy, it was in a driving rain with 4 scared and borderline soggy little cherubs. If I can put this trip in my top 3 list of favorite things ever you can guess how beautiful and amazing it was. We better add(read the rest)

The Drive: Hays, KS to Colorado Springs, CO to Pueblo, CO to Colorado Springs, CO. We drove down to Pueblo to have a BBQ with great friends then headed to our hotel in Colorado Springs late last night. London freaked out at night when a regular lightning storm rolled through, he was so upset! Our hotel is pretty nice and we’re staying here until Wednesday then will head to the campgrounds for a couple of nights. We had a little time in between getting to Colorado Springs (where we used to live) and having to leave for the bbq in Pueblo so I drove down memory lane. I was taken back at how emotional the ride was… driving past restaurants, parks and other places we used to go when Rachel was much more healthy/normal/sighted than she is now. Thinking back to then makes the losses more obvious and as you can imagine I was pretty upset for a short while. We also stopped at our old house and dropped in on our neighbor, Jacquie! We haven’t seen her in a few years when she came out to visit us!!! It has definitely been too long since I’ve seen my friends(read the rest)

The drive: Today we drove from Lee’s Summit, MO to Pleasanton, KS and back to visit Skyview Farms. They generously invited us to come and milk cows with them. We spent a few hours on their farm and they were absolutely wonderful with Rachel and all of the kids. We got to meet cows, kitties and goats. We all had a great time and crossed “Milk a Cow” off of our Bucket List! Total miles: 144

The Drive: We’re staying in “Kansas City” for the next few days so we’re not really driving. We hung out at my brother’s house, went to Target in the morning and swimming in the afternoon. At night we went to the nearby ice cream shop called “Here’s Your Scoop” with my family, Adrian’s family and Sarah’s BFF (who I really like). PICTURES!

The Drive: Today we drove from Terre Haute, IN to Lee’s Summit, MO Total Miles: 405 Today was a bit easier on me to convince the kids that another day in the car was a “good thing.” (Thank you Martha Stewart). At the end of this leg we got to see Adrian, Linda, Sarah, Haley and Abby. (My brother, his wife and daughters).

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