School, Work, Kids, LIFE

Posted by Kat in Kat

So it is official that I am going to be taking a couple of classes this fall at UMASS Boston to work towards my degree in biology.  From there I get to decide if I want to simply steer myself towards research or of I feel I am brave enough / young enough to try medical school on.  There is a bigger calling in my life and I am going to answer the call, I just have to figure out which direction to take on the way.

On June 14th I am taking a few weeks off of work (Website / Good Geeks) and taking the kids on our biggest road trip to date (Boston to Cali to Seattle to Boston) and am terrified (not really) and really, super excited.  I’ve switched entirely to vegan food to shed a little weight to be able to bear the heat of driving through Kansas, Nevada, etc in the summer in a TANK TOP!  No layers for me.

School is almost out, my calendar is PACKED for the next 10 weeks and I wouldn’t have it any other way.  :)

I am WIPED out.

Posted by Kat in Kat, Life

For several months now I have felt incredibly tired and the feeling is getting worse.  Does anyone know any good “energy boosting” techniques?

I am not diabetic and my thyroid is normal.

I get a healthy amount of sleep and I sleep very soundly.

HELP!

Friday the 13th

Posted by Kat in Batten Disease, Doctor, Life, Vacation

I always feel obligated inside to have a horror movie marathon on every and any Friday the 13th. I never actually get that far and have a marathon, its just something I feel should be done. Tonight John is hosting Julie, London, Boston and our niece Abigail for kids movie night and sleepover. I don’t think Zombieland would be the right flick to show and it would be bad mothering of me to hide myself on the top floor hovering over an iPad with the volume turned down so I don’t get busted.

If you haven’t seen Zombieland, it is a great movie and I highly recommend it!

Work has been busy, lots of people wanting website work done which has been great. I’ve been doing most of my site work on the WordPress platform and the clients who want to self-maintain are thrilled as am I when updates need to be done. Its a fantastic piece of software both for website management and blogging.

Next week is school vacation and we have a few Dr appointments lined up (Rachel is seeing her Neuro) and I am taking the 3 little ones ice skating. Rachel is too unsteady on her feet for me to attempt skating with her so my Mom has volunteered to take Rachel out instead. Thanks Mah!

Last but not least I am organizing a Batten Disease Fundraiser: Sunset Dinner and Comedy Show with DJ and Dancing. This will be held at the Sunset Bay Marina’s Bay View Room in Hull, MA on Friday June 8th at 6:45pm. More info at www.teamrachel.com

Photo: John is holding up a palm tree in Cozumel on our honeymoon. I was 22 weeks pregnant and we both ordered a margarita (figuring I would get at least a sip) but once realizing that it was the strongest margarita ever I gave mine to John and he could barely walk afterwards.

Julie turns 8

Posted by Kat in Birthday, Haley, Julie

Happy Birthday to my special, beautiful, wonderful princess Julie: aka JulieBean!

Introducing my very talented niece (the photographer), HALEY!!!

The time has come

Posted by Kat in Batten Disease, Kat, Rachel

I’ve decided to split my personal blog from Team Rachel’s website / blog.  The site you are reading now (www.mrskatvon.com) will continue to be my personal blog as it has been for about 12 years (originally it was a journal but I typed out the entries on here and omitted a few entries from when I was feeling angry.

Team Rachel (www.teamrachel.com) will continue to be the website for Rachel’s Medical Updates, Batten Disease Information and any and all fundraisers which are slowly but surely in the planning stages.

TGIF!

Social media…. Cause for worry?

Posted by Kat in Kat, Life

Way back when before social media websites like facebook and twitter became popular people used to belong to forums and they people used to BLOG. And I mean BLOG! Huge followings, tons of entries and lots of reciprocation of ideas and support and it was a community. Kind of like having someone over for coffee. They’d have you over to their house one day and you would invite them into your home the next.

I miss how popular blogging used to be (and I’m sure some of you might argue that blogging is still popular) and I miss how close I used to feel with those that I blogged with. I guess the “fix” to my feeling of worry and sadness is to get back into blogging and rejoin the blogging movement. I’ve got an interesting life and although facebook / twitter is instant gratification we all worry in the back of our minds if and when those sites will be wiped out and we’ll lose those personal exchanges, those pictures and the connection to our “friends” and “followers” forever. You don’t have that worry with blogging. I don’t like to worry, I think its a total waste of time. So I shall stop worrying and do something about this.

I will continue to blog. I shall start with this entry. I shall not worry because it is futile.

(Now I’ll go share this on facebook so someone will read it. lol)

2.29.12 is Rare Disease Day!

Posted by Kat in Batten Disease, Blog, Life, Rachel

Today is rare disease day. Please take 3 minutes of your time today and submit a letter to your local and national elected officials and tell them that rare diseases are important to you. If this were your child and you asked me to submit a letter, I would submit several. You never really realize how “frequent” rare diseases are until its your child who gets diagnosed with one. Thank you!

http://rarediseaseday.us/take-action-now/handprints-on-the-hill/