Seizure #4
On Monday at around 835am Rachel had her fourth seizure. This was a Grand Mal that lasted 3 minutes.
(I am blogging about this to track the dates and times to see if I can find a pattern). They all seem to be around the 20th of the month
Read More4/1/2011
Nothing too special to write today. I’ve promised John not to “get him” on April Fools Day today. Last year I had him believing the trash company wrote us a nasty letter and fired us because of the volume of our weekly garbage output. He was fuming and about to call the trash company and then I said to him “April Fools.” I’m not sure he has forgiven me for that. LOL
I started going back to the gym and have done a few Yoga classes (free child care, woohoo!) and its good to work out again but the kid free time is priceless.
Rachel and Julie have a father-daughter dance tonight for girl scouts, and Julie and London have Art class after school. I have a 10am yoga class today (the boys are going to childcare at the Gym) and all I want to do is stay home and watch the drizzle from my couch with a cup of coffee in hand.
Read MoreGrand Mal (Seizure #3)
At around 8am today Rachel had another seizure. She was taking her pills with John (had swallowed 2 of 3) and she went into a trance and started turning her head almost in rhythm with the gears of a clock’s “seconds” hand. Couldn’t get her to reply and we laid her on the couch on her side. Convulsions lasted for minutes and I administered the diastat rectally.
I’m sure some people read this blog and think that sucks and on some level think that this is normal and expected. Not a big deal. But this is my healthy kid and this is only the second seizure we’ve seen at home.
This is scary. It makes my stomach hurt. She might be terminally ill but she is healthy on the outside and seizures are harder for me to witness than the night I got her official diagnosis.
She is passed out on the couch missing a fun day of green. So unfair.
Read MoreWhat do people live for?
I took Rachel to her second appointment with her Pediatric Rheumatologist and he confirmed that she does have Lupus, also known as Systemic Lupus Erthymisomethingerother. How does a beautiful and innocent kid end up getting an early death sentence and Lupus? It’s total bullshit and rather than be angry this fine evening I would like to pose a question to those folks that still read my infrequently updated blog.
What do you live for?
Last year I spent many weeks living to cross off items on the bucket list, taking my kids to multiple states and experiencing all sorts of awesome things. Already this year I have driven my kids down to Florida and back and watched the miracle of Rachel and London learn how to swim. I have personally been living to make sure Rachel, Julie, London and Boston get to experience countless amazing days while Rachel can.
This year I want to continue this mission but maybe travel a little less (my new Jeep is not so good with gas mileage). Planning on sharpening our camping skills, maybe get a little sailboat. I’m looking for more adventuring ideas, things to enjoy, experience, to LIVE for.
So… What do you live for?
Took this picture of Rachel today. We clocked 100 miles with the Jeep’s top down today. It was 65 degrees in Massachusetts today!
January
Can’t believe it is January already. Julie started back to school a few weeks ago and is enjoying her social time, she is pretty overwhelmed with all of the stimulation but loves it overall. London is starting preschool next week in the afternoons and they are all going to Art Class again starting later this week. Rachel was kind of upset about not going but I said she could bring some art supplies to Granny’s house as she’ll be at my Mom’s for her regular Friday night “date.”
Rachel is about 95% blind. The other five includes a spec of vision (literally a spec) out of the corner of at least one eye and she still has “light / dark perception.” She is handling it as well as can be expected. I try to get her to talk about it and how she feels and if she has any questions about her blindness and for the most part she is as happy as can be expected (and then some). She and I are going to the University of Rochester next week for a “check in” to see how she is progressing as they are studying Juvenile Batten Disease. My fingers are crossed that her disease progression is considered slow for her age.
The day after we get back from NY I am driving down the kids to Florida to stay the week in a house I booked months ago with a heated pool in the back porch. One day at Disney (can’t believe how expensive it is) and another day at a petting zoo. Our Make a Wish trip was amazing yet difficult for Rachel (and us) because she wasn’t on the right medication and it was so hot. My brother, nephews and my other brother and his girlfriend (Andrea) are all planning on coming down during the week.
Get out your fine china (I am so not fancy enough to ever own any). Wear your best jewelry (I made Julie wear her new princess earrings today despite her fear she might lose them) and treat this day like its your last on earth. Some days are harder than others but you should try every single day.
Read MoreDecember Trip – Foul Ball
Let’s see. Me and the kids planned a Trip of a Lifetime from Boston to Colorado, stopping to see family in Kansas City. The goal of the trip was to see the Flying W Christmas Round-up (Bucket List item).
It didn’t quite happen that way.
My minivan broke down in PA (water pump died and overheating commenced).
Once the van was fixed we hit lots of snow.
We ended up getting to Kansas City and stayed a few days but saw more weather heading through Colorado and Kansas and I decided it was safer to drive home.
I will do this trip again next year (earlier in the Flying W Christmas Season) and we will GET THERE!!!!
Read MoreSunday Night
Just added a Christmas theme to Rachel’s site and updated on her rash. Check that out here.
I am taking the kids to Colorado again soon. It will be a quick trip before Christmas and I’m excited and nervous. Excited to see great friends and family, ecstatic to take the kids to see the Flying W Christmas Round-Up (its on THE list) but a bit nervous about the weather. I’ll definitely come back soon enough to not miss Christmas (KNOCK ON WOOD). If you see a tall geeky looking guy floating around Hull looking lost, buy him a coffee (medium regular please).
This weekend we have the Make A Wish Christmas Party which is being held in the Delta Hangar @ Boston Logan Airport. It will definitely be a once in a lifetime experience. 
We’re opening up a second shop on January 1. I have been so busy working on that, staying up extremely late with John. I’ll be glad to get that part over and I’m very excited to see how the new shop plays out in the first couple of months. Lots of good things to come in 2011! Let’s hope they have that drug trial, that Rachel is eligible and they see a slowdown in disease progress. If only…
Kids and Santa 2011
Life
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).
Read MoreBatten Disease Fundraiser
We didn’t get too many good pictures from the “Our Promise to Nicholas” Fundraiser last weekend because it was at night and I was chasing kids but I did get three pictures.
Saylor and Julie decorating pumpkins at the Batten Disease Fundraiser
Rachel decorating pumpkins at the Batten Disease Fundraiser
Boston (Buzz) and London) decorating pumpkins at the Batten Disease Fundraiser
It was freezing!!!!!!
Read MoreThis blog is getting an upgrade and a facelift
It needs to more look inviting to my (albeit small but wonderful) audience. (Hi Mom).
Read MoreDay 9 – Pikes Peak SUMMIT!
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!
Day 4
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).
Day 2
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.
Day 1 – Hanging out with Uncle Chris
We’ve completed the first day of our trip, driving from Hull (MA) to Danbury (CT). The kids and I spent the entire day with my brother and his family. We went to Dunkies for breakfast, went to Stew Leonards (yay) and had the most delicious pizza for dinner. We even got to pet cows! We’re off to Hershey, PA tomorrow.
What have YOU done to make today memorable?
Read MoreThey aren’t deadbeats!
John found these in our coop this morning. Good girls!!! They have laid their first eggs!!!
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
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