2nd meeting of the RI chapter of the Vasculitis Foundation

The 2nd RI chapter meeting was a success! It was attended by 8 people this time and we hosted a guest speaker - Dr. Paul Monach from the Boston University Vasculitis Center. Topics of his presentation included: a review of the types of Vasculitis, medications used to treat them, and the science and art of tapering off these medications.

Based on the feedback I received from those attended, a good time was had by all! Gift bags containing literature, bracelets, and stickers were given out as well. The two-hour meeting went by quickly as we wished we had more time!

Next meeting is scheduled for Spring of 2010. Hope to draw a larger crowd each time!

If you know of anyone who would benefit from this blog, please forward it along! Thanks for your support!

Spinning for Vasculitis Fundraiser at Effin's!

Today has been an exciting day with some exciting news!  With help from my friends at Cycle Essence in Cumberland, the location and date of the first Spinning for Vasculitis fundraiser has been secured!  It will be on Mother's Day at Effin's Last Resort in Smithfield.

Details are still being ironed out but it will be an event to be enjoyed by all!  There will be Spinning, music, food, and definitely plenty of fun for the whole family!  What better way to spend Mother's Day with the family than having fun and raising money for a worthy cause!

If you are interested in participating in the event, or volunteering, please let me know!  I can be reached by email at kellyb947@cox.net.

More details to follow...

Home Sweet Home

Hello everyone!

Well, my mom is home now!  My dad and I picked her up on February 27th from Oak Hill Nursing Home.  With the temperature about 50 degrees, she was more than happy to ride with the windows open on the way home (fresh air is not over-rated)!  It was a great day for all of us but especially great for my mom - as she achieved the goal she set out to accomplish - walk out on her own two feet.  Although assisted by a walker, she walked from her room on the 3rd floor to the car in the parking lot of the nursing home - with teary residents wishing her well along the way!  Once she was comfortably seated in the car, she yelled "YAH HOO" loud and proud!  

Free at last, free at last!  

She been home one week now and adjusting nicely to her home again.  Everyone in the house is glad to see her home - even the kitties!

In the home stretch...

Here's the latest update from Oak Hill...

Last Tuesday, Dad & I went to see Mom.  She was commenting about the time it's taking to adapt to the new wing of the nursing home.  It seems as though she's dealing with staff that aren't as attentive as they should be (or as attentive as the staff on the other wing!)  She's also dealing with the frustration of being 'institutionalized' since May.  Dad & I attempted to lift her spirits.  We reinforced the fact that the sooner she's walking, the sooner she'll be home.  

Her challenge:  getting herself from a seated position to a standing position.  I told her that it won't be long and she mentioned that the chair push-ups that they've been having her do are starting to work -- her butt is starting to lift about halfway off the chair.  I also told her:  I'm just waiting for that phone call from you saying that you stood up on your own.

Fast forward to Wednesday...

I'm at work, in a meeting.  I come out of the meeting to find a message on my phone from Mom -- asking me to call her back when I have a chance.  Figuring the topic of the phone call was to add something to my shopping list, I called her back.  

"Ask me what I did today?" she calmly says after a cheerful greeting.  

"This is NOT the phone call I was waiting for, is it?"  I exclaim.

"I stood up today" she said calmly.

And the day seemed a little better from that moment on!

Keep Mom in your thoughts and prayers.  Hopefully, she'll be home within the next couple of weeks!

What would you say....

Here's another update from Oak Hill.

Today, I received a phone call from my mother.  She started the conversation by saying "What would you say if I told you that I walked 60 feet today?"  Needless to say, I was excited and my response was "WOO HOO!"

I had talked to her earlier in the day to find that her day was not starting out so well.  She was recently moved into a new room in a different wing of the nursing home.  Adapting to the new nursing staff was not as smooth as it should have been, therefore she was a bit frustrated.  I don't blame her -- I would have been a little short-fused had someone switched on my light at 5:30 AM to ask me if I had to go to the bathroom!  Safe to say, they won't be doing that anymore (and live to tell about it)!  

The day for Mom got better when in her physical therapy afternoon session, she was assisted to her feet and proceeded to walk 60 feet -- with a walker!  Outstanding progress for someone just 5 weeks ago could barely stand for 30 seconds!  

Yeah - 2009 is gonna be a better year for her!

John Travolta's son, Jette

I was just reading an article about the recent death of John Travolta's son, Jette.  Did you know that he had vasculitis?  Jette had a type of Vasculitis called Kawasaki Disease, which strikes children.  In the U.S., over 4,200 children are diagnosed with it each year.  80% are under the age of five.  The article stated that Jette was diagnosed when he was two years of age.

For more information about Kawasaki Disease and its symptoms, go to https://www.vasculitisfoundation.org and click on the Kawasaki Disease link at the top of the page.

Knowledge is power!

These feet were made for walking...

Hello everyone!

Just wanted to update everyone on Mom's status...

It has been one month since checking into Oak Hill Nursing and Rehabilitation Home.  She has accomplished so much within the last month!

Yesterday, my father and I were invited to attend my mom's physical therapy session to witness her walking "assisted".  We were quite impressed to see that she walked over 40 feet between the parallel bars.  Although she was holding onto the bars and the physical therapist was holding onto her, she took each step, one-by-one, until it was time for a break.  Although one of her knees buckled, she took a rest and got back up to walk some more!  

The PT staff has mentioned that it may be a couple of weeks but she may be using a walker soon -- instead of a wheelchair!  2009 is shaping up to be quite amazing already!

Happy New Year!