Friday night Rachel and Boston had a sleepover at Granny’s because Boston is POTTY TRAINED! We promised him a sleepover as a reward and he had THE BEST time. I took advantage of being “half off” from kid duty and took Julie and London to dinner at Barefoot Bobs Friday night and then to the dollar store on Saturday. We managed a playdate and met a HUGE dog called MayDay and ran some errands.

Sunday I took John and the kiddos to the MFA and everyone had a good time. Karen, our tour guide, gave us gloves so we could TOUCH some of the exhibits. AMAZING! Even Boston had a good time.

Julie has spent the last week telling everyone she knows and then immediately following it up with “don’t worry, I’m not worried.”

She is such a good girl. I’m looking forward to having a few hours alone with her. Will update later.

But we are.

Living a nightmare.

This is so unfair.

She barely got started living.

The nausea / nightmare feeling hasn’t gone away since July and it never, ever will.

EVER

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>

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).

Directions
1. Place the potatoes in a cheesecloth and wring, extracting as much moisture as possible.

2. In a medium bowl stir the potatoes, onion, eggs, flour and salt together.

3. In a large heavy-bottomed skillet over medium-high heat, heat the oil until hot,. Place large spoonfuls of the potato mixture into the hot oil, pressing down on them to form 1/4 to 1/2 inch thick patties. Brown on one side, turn and brown on the other. Let drain on paper towels. Serve hot!

But this week when I was setting up 529 Savings accounts (through Upromise) for 3 out of 4 of my children, I became really, really depressed.

Her new meds are working well so right now I am focusing on TODAY and enjoying TODAY. Tomorrow might suck but as long as today is good I can handle the distant future.

What are you doing this week (or weekend) to enjoy the TODAY? You might not have a tomorrow so make sure TODAY counts.

London has the sniffles and Boston is grouchy so I’ve kept all 3 of them home today. It was a half day for all of them today anyways (Rachel is the only one @ school today… weird change).

I went to look at a house for rent nearby, one that is all one level with no steps to get into it. I am going back tomorrow with some measurements to see if our stuff will fit (mainly our couches and king size bed). Its a small house but would be great for us as Rachel slows down and starts having more mobility issues. Not knowing when mobility issues are going to become a real problem is really hard because I’m a planner. She is already needing help to get up and down the stairs to get into our house (but she goes up to the second floor by herself).

Updated Entry at 5pm
Julie and I just made some cupcakes, London is playing Webkinz and Boston has been begging to look on amazon for toys all day. I made several donation runs of clothing (etc) today and did a good house clean out. I’ve started recycling but looking for free ways to recycle. So far I’ve found where to recycle clothes, paper, soda cans and plastic bags for free. And I’m trying to compost but haven’t bought an indoor composter (New England isn’t the best place to compost in the winter, I guess).

Do you compost? Share some info with me because I’d like to be better at it.

Rachel is off the stimulant medication because I wasn’t seeing any difference. We’ve been waiting to see a NCL specialist neurologist in boston for quite a while but have just been informed that this neuro has gone on an immediate medical leave and Rachel’s appointment has been rescheduled for the end of april. I was telling our primary care all of this on Wednesday at Rachel’s follow up (which was also the same night that I had apparently scheduled Julie’s physical) and the primary care doctor agreed to let me give risperdal a shot. Quite a different medication than adderal but I am really hopeful that this medication will increase her quality of life and place Batten Disease on the back burner where it belongs!

Julie’s physical went well, she is absolutely perfect. She got her first shot (since she was about 4 months old) – the MMR, and had a lead test. The doctor heard a heart murmur that we had never heard before and has referred us out to a pediatric cardiologist so we can have it checked out. Its statistically going to be nothing but the doc and myself both agree that it needs to be checked out.

Last but not least, Rachel and Julie are selling girl scout cookies. If anyone wants to buy some, let me know!!!!!! Feel free to email me @ mrskatvon@gmail.com and you can either buy some boxes or sponsor some boxes and I’ll donate them to the next school function for the kiddos / teachers. Its up to you. The girls are excited to sell a couple of boxes, I am NOT excited because I cannot control myself near the caramel delights.