Wednesday, February 17, 2010

Sometimes reading can be a positive...Methotrexate, Mortality & Pain

Three of the latest articles I'm can find the links to all the articles I am reading at the side of the blog in: Articles I'm Reading
Click on the title of the article to read it in it's entirety. I'm pulling out pieces of note to me, but they are not the full article.
Kids in Remission May Be Able to Stop Meds Sooner
Deaths Due to Childhood Arthritis Drop
The Importance of Pain Management

Tuesday, February 16, 2010

Paranoia, when does it go away? Does it go away?

I look at Bean every day.

Well, to be fair I look at ALL my children every day. I give them a once over, checking on parts, boo boos, hairs, nails, toes, is a two fold mission...I want to make sure they are ok, safe and healthy.

Really though, I try to make sure I soak them in. I want to remember their parts, know each "beauty mark," each freckle, each crevice, each spot.

Bob's two birthmarks - one that I noticed on the day that he was born and knew no one could ever mix him up...and the other the memory of his NICU stay...

Belle's gentle curve to her collar bone with beauty mark that seems to have been placed on her ivory skin by the model gods (a la Cindy Crawford),

Bean's long skinny fingers with beautiful long nail beds...a hand model as it were...with not a freckle on any of them, her beauty mark of prominence is just off center of her midline, right by her hairline....

Puppy's fantastically edible earlobes with an adorable beauty mark right in the middle of his right ear...

Wednesday, February 10, 2010

Bean's Journiversary...

I have been remembering last year's 22 days of sheer panic. The anniversary of this journey, to take a conjunction from a dear friend, our journiversary.

Each day that passes without a fever... I am thankful,
each day that passes without complaints of pain... I am thankful,
each day that passes with less complaints of stiffness... I am thankful.

I am thankful that we started this journey a year ago and not this year...
we have gotten two blizzards in the past week, the first 30 inches, and the second 2o inches...with 50 inches of snow on the ground this week I can't imagine what we would have done last year...spending those days in the hospital and not able to switch off with J, having one of us snowed in with the other 3 children.

Did I mention H1N1...last year no one knew of such a thing...this year our three other children would not have been allowed to visit Bean in the hospital...I don't know how any of us would have handled that one either.

See for your self below...

Children's hospital didn't have any Internet access and cell reception wasn't great either. So our time there was spent updating friends and relatives through facebook postings from my blackberry and a photo journal of pictures taken on that same blackberry. Some were posted to facebook...but most weren't "post worthy." I am now rethinking that and want to make sure I remember.

Bean's first night in the hospital...she did smile and she did have a rash.

View from of our room

"Dr. Will" - Bean's resident - playing Zingo with Bean - God bless Dr. Will wherever he is now, he truely made a difference during our stay

Bean's Room and set up - signs from friends at school, art supplies from the volunteers at the hospital, and a "ducky attention diverter" from B and family!

Grammy came and took some much needed naps together (especially so J and I could go home to the 3 other kids one night together).

One of two pairs of PJ's I will always associate with her stay...a picture of her knees that didn't "work"...a picture of my 5 year old who couldn't a stroller

Bean willed herself to sleep during her bone scan so she wouldn't need another "needle!"

The fantastic social worker that helped Bean and her fellow patient deal with all the procedures they were undergoing...and all the blood draws!

Playroom right next door to Bean's room where we spent lots of time.

Even when Bean had a fever and was too week to participate Belle, Bob and Puppy got to be close by - but loved the day the dogs came!

The playroom that Bean, when she was up to it, was able to have a regular playdate with her brothers and sister!

Bean's eye on her stay :
(including the other PJ's that I will never forget)

Bean and the family right after she had her bone marrow test to make sure she did not have leukemia...waiting for results....and then 2 hours later...
The sun set outside Bean's room as we packed up to leave....together, as a family.

Ironic - the sign as we were leaving....
I'm thankful that this journey started last year and not this. I hope the next anniversary is one that brings us closer to a cure.