Wednesday

Posted by in Batten, Boston, Julie, Kat, London, Rachel, Summer

I’ve spent the last few days writing a “paper” of sorts for my Biology Class. We had to select three diseases of the organelles and discuss the cause, symptoms and treatment for each. I selected Batten Disease (Disease of the Lysosome), Diamond-Blackfan Anemia (Disease of the Ribosome) and Leigh Disease (Disease of the Mitochondria).

It absolutely kills me that so few people have heard of any of these, know nothing about all of the rare diseases out there. If we don’t have awareness, we won’t be able to cure any of them. As selfish as I know it is, my disease of choice is Juvenile Batten Disease because my daughter suffers from it. I want to do so much for this disease but I just don’t know where to start. The science behind it is extremely interesting to me but it will take me years of school to be in a professional position to do any research. I have this child 3 feet from me listening to Star Wars Clone Wars and I need to do something to help her.

Here are some pictures from yesterday. The last picture is historical proof that my Mom (in her late sixties) will still climb into a gokart. :)


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So much to say, little baby!

Posted by in Kat, Life, Rachel, Summer

Alright. I’m here to blog but don’t freak out by the title and think I’m pregnant. I’m definitely not pregnant. LOL It’s the combined parts of very last part of a song done by the Dave Matthews Band. Sounded like a good enough title (even if I cut up a perfectly good song to do it).

Where I’m at. The kids are all out of school for the summer and the first week has gone really well. We’re hanging out inside in the mornings and going in the backyard for swimming / playing in the afternoon. I am determined to have the most memorable summer on record with them (for them). We have a lot of day trips planned and are even taking a long road trip as far as Kansas City and Colorado in August. My class finishes next week so I can really let loose after that.

Still in disbelief of what is to come, still very upset about the new signs of her disease popping up. Watching her struggle breaks my heart. I’d trade places with her a thousand times over. We have some good memories to make and I won’t let this stupid disease take her chances away, even if we have to shove a lot into this short time.

I’ll blog as I have more good things to say, some memories to share with you. You don’t need to see what kind of mess I am inside so I’ll show you the good stuff. We’re going to the carnival on Friday night and I promise to bring my camera. I’ll get some pool shots up later this week.

Click here to Watch So Much to Say – DMB

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Happy 10th Birthday, Rachel!!

Posted by in Birthday, Rachel

I hope you have a great day today and don’t explode while waiting for your party on Sunday. :) I love you so much and I know so many other people love you, too!

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We’re back from the cruise

Posted by in Life, Vacation

Its been over a month since I’ve updated this blog, can’t believe it has been so long. We just spent 7 days on the Norwegian Spirit and went from Boston to Bermuda. John, myself, the children and my Mom all went and split two rooms.

Here is a link to the ship info

Here are a few of the pictures, most of you who read my blog know who the people are.

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

Cruise Pictures

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Julie’s 6th Birthday

Posted by in Birthday, Boston, Good Stuff, John, Kat, Pictures, Rachel

We had the best time. Can’t believe Bean is 6!

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Julie turns 6

Posted by in Birthday, Julie

Today is her friend party and tomorrow is her actual birthday. Can’t believe my “little” girl is 6!!!! Pictures to follow…

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Daylight Savings

Posted by in Kat

I hate switching back and forth, especially in these last (nearly) 10 years since being a mom. It screws everything up.

I was pretty proud of Rachel for getting ready to completion (medicine, nasal spray, hair, teeth, GREEN clothes) in about 10 minutes. I guess the dude (or people) who thought of this time change thing had no children.

Spring is coming! Loving the warmer weather today (although I am definitely a big fan of the snow).

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Yogurt Cream Pie

Posted by in Food

1 Graham cracker lined pie dish from supermarket.
2 cartons of strawberry yogurt
1 large carton of cool whip
1 container of strawberries to match yoghurt .

Directions

Remove plastic cover of pie dish and keep handy. Fold all ingredients together and scoop into pie crust Replace plastic cover and freeze. Yummy desert and ready when you need one in a hurry. because it will keep for months. Defrost for 1 hour before ready to serve.

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Sunday

Posted by in Kat

Boston is playing with his toys, Rachel is laying on the couch listening to Toy Story and talking with Boston. Julie and London are in the other room playing “Batman Legos” together. We have a pretty intense storm rolling through and lots of wind blowing around the house. John is sleeping in our bed upstairs and my brother (Adrian) is a floor above him sleeping in our guest bed.

We went to BJs last night and got piles of fruit and veggies which I can’t wait to dig into today. My brother promised to make us breakfast this morning and I’m trying to balance waking him up vs. letting him sleep. Kids will be starving soon. Maybe one of the kiddos will have to go up one flight and make a lot of noise at the bottom of the stairs leading up to the floor he is sleeping on.

I’ve been spending a lot of time thinking about how to handle childcare this summer and what to do. I definitely have several trips planned with this summer, several of them will take us to amusement parks. Sometimes I wish I were a child again so these heavy things wouldn’t be hanging over my head.

Bills. Parent/Teacher Conferences. IEPs. Marriage. Familial Responsibility. Playdates. Volunteering. Childcare. Fundraisers. Boatloads of Laundry. Dishes. Pets. I’d like to escape from reality for just one day and enjoy the freedom of not always having to put on a “happy face”. Trust me, I know that isn’t going to happen but it is certainly nice to daydream….

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I forgot to update

Posted by in Batten, Rachel

Rachel did not have the surgery yesterday, I cancelled it at the last minute. I couldn’t get over how terrifying the post-operative clean out appointments would be for her. I tried very hard to get her a Valium type medication from both the ENT and our Primary Care but no one felt comfortable prescribing that for her because they are respiratory suppressants.

I am going to push harder for her to use saline and maybe try to pin her down and use a neti pot on her. Increase the humidity in her room and possible get her a hospital type bed so she can sleep reclined. I’m also going to see if I can get our primary care Dr. to prescribe a steroid nasal spray to try and decrease her inflammation that way.

I have no doubt that the end result of the surgery would have improved her breathing but I couldn’t get past how terrified she would be every time I took her back for another “clean-out.”

I feel good about my decision.

My brother comes out to visit next week…. better get the lobster order ready.

I promise a “non Rachel & Batten disease” entry later today.

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