→ BATTEN DISEASE

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 up!

 

This Saturday I am taking the kids (with the help of my Mom) to the Make-A-Wish Christmas party at Boston’s Logan Airport.  Apparently they have the party *IN* the Delta Airlines Hangar so I am really excited for the kids to see that.

 

Merry Christmas. 🙂  Today’s picture is the kids with Santa, taken at the Hull MA Carousel Shop.  I’ve put this picture in our yearly business Christmas card.  🙂

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

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

And tonight I went out to coffee with some great friends. I’m waiting on my girls to email me some of their pictures but I did have one I felt was good enough to post. Here is JJ and Mel (Marie and Susan came too!)!!!!!

Coffee with my girls

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 some things to our bucket list because we are crossing them off left and right this week. Kids had a great day and we even swam in the hotel pool for a few minutes before (yet another) storm rolled through and the lightning kicked us out.

A special mention goes to my great friend Melissa who printed out the cog railway coupon for us. We love you!

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

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 out here.

Total Miles: 399

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

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

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

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!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

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).

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

The Drive: Today we drove from Somerset, PA to Terre Haute, IN.

Total Miles: 485

The hotel in Terre Haute was the worst I have EVER stayed in. It was 90 something degrees and too hot to even consider using the outside pool. The IHOP, however, was splendid!

Terre Haute hotel

Terre Haute hotel

The drive: Today we drove from Danbury, CT to Hershey PA and then to Somerset, PA

Total miles: 382

We got up fairly early and bought gas before heading on the road down I-84 and went straight to Hershey Park. After spending about 3.5 hours in the park and having lunch we headed another 2.5 hours to Somerset, PA where we stayed in a hotel for the night.

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

The night before last I put up our new tent so the kids and I could have a dry run for camping. John’s back has been bothering him so we gave him a pass to sleep indoors (the house was 10 feet from our camp site). When me and the kids finally got settled, Rachel decided she had her fill and we got her tucked into bed. London, Boston, Julie and I all survived the dry run! I think if the weather is a little cooler the next time we try and I get Rachel a sleeping mat or something to cushion her, she will stay with us the whole night! Here are some pictures, the last one is my cot (yes, I cheated)….

This is another item on our bucket list and we’re in progress. Rachel has to complete a night with us, preferably at a real camp site and then we can cross it off the list! I’ll probably stop at a KOA site on the way home on our road trip.

Let the record state that it is a royal pain in the ass for one adult to try and put up a tent without the help of another adult. I was ready to pass out and would not have been able to put it up without the help of Rachel (who is very strong) and Julie. Thank you girls!

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

So if you follow Rachel’s facebook page or know me “in real life” you’ll probably know that the idea of a Bucket List has been the topic of several conversations between me and the kiddos. They don’t understand that this has ANYTHING to do with death so please don’t comment or email me worried that I have a doom and gloom attitude that is negatively affecting them. My positivity is borderline disgusting. LOL

I’ve put “The Bucket List” on the top right of the blog and plan to add many, many more things to the list as the weeks go by. The plan is to take a very long (nearly) cross country trip stretching from Boston up north to Maine and all the way West to Kansas City then Colorado and back. We have free access to several amusement parks through September and I’d like to take advantage of this gift from “Give Kids the World” (the place we stayed in Florida on our Make A Wish trip).

I’m also setting up a FLICKR account to link our pictures from all of these successful missions to show the world that life is too short to wait on the important things in life. Life is too short, people. It’s a fact. Batten Disease is such a shit disease, I refuse to let it steal my Rachel until she has had the chance to use up her body and slides into home base covered in fattening food and exhausted from life.

The more afternoons I can get my children sticky with ice cream this summer, the better! I’ll leave you with a picture from Summer 2009 (the extra 9 year old boy in the picture is my nephew Ryan).

You keep that thumb in the up position, baby. Hold on tight because I’m going to drag you all over this country!!! 🙂

For the unaware, “The Bucket List” was a movie that came out in 2007. < link to IMDB>

I scooped John and the kids up and took them to Maine for the weekend. We had a great time although I had promised to tray and do some sledding or snow tubing. We met a family of chickens and a herd of alpacas, went swimming and hot tubbing and took the kiddos into a sauna for the first time. We even brought home 3 dozen farm fresh eggs which have already begun the transformation into baked goods. 🙂

Here are some of the pictures which I will directly share from facebook (you don’t need a facebook account to see ’em).

http://www.facebook.com/album.php?aid=374918&id=266424125552

We had THE BEST time! Here is my favorite picture of Rachel from the weekend. Just goes to show that you don’t have to see well to have a fun and full life. Experiences like this are more valuable to Rachel than to a sighted child because of her tactile senses.

I think I think I did a sufficient job at flipping Batten Disease off this weekend. Tomorrow morning we’re going ice skating for an hour. Can’t wait! Gotta get them into a swimming pool more often. They love the water (just like their Momma) and love the hottub (just like their Daddy).

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