Tuesday, February 2, 2010

Good News on Longwood

We had our regular check in at Boston Children's Hospital yesterday. Hannah has been doing really well from our perspective, so I was curious as always, to see how the rheumatologist thought she was doing. He knows which joints to really poke on and has other tricks up his sleeve to find any hidden inflammation. He found NOTHING! Given her history of good health over the last several months and my persistence to start the weaning process of medication, he agreed to stop the methotrexate completely! This is really great news. I have been worrying about the long term effects of these medications (we've been doing the methotrexate and Enbrel combination for two years now) and have been anxious to begin the weaning process. I was even more pleased at the news of just stopping it completely.

Her rheumatologist did question me pretty hard about my decision to not give Hannah the flu vaccine. I was proud of myself for holding my ground, stating my two main concerns: 1. There are so many strains of the flu, it doesn't make sense to me to inject foreign matter into the body that will only cover ONE strain. 2. After Hannah's reaction/flare up to traditional vaccine boosters this last summer (the worst flare up we've ever seen in her little body), I don't want to risk another repeat of that. I feel like Hannah's body attacks itself (hence the autoimmune label), it certainly doesn't need an excuse of additional foreign matter (flu vaccine) to attack itself that much more. I know plenty of people who choose to get the flu vaccine and that's okay. I just know that right now, the flu vaccine does not seem like the right thing for me or the kids. And so I wonder, where do you stand on this matter?

But most importantly, thanks for the thoughts and prayers for Hannah. We're down to one medicine with her and I am so grateful, so very grateful.

Saturday, January 2, 2010

All I Want For 2010, Are My Two Front Teeth!






Happy New Year everyone!  I have one new year's resolution for 2010: revive the blog.  Fingers crossed that I'll follow through.  If you're reading this, leave a comment, it might encourage me to continue if I know others are actually reading it. 
We're excited to welcome this new year and hope it has good things in store for us, especially after this last challenging year.  As a quick recap, Michael began a new job in June and is enjoying it.  I went back to work too, at the kids' Montessori School.  Hannah is in First grade and Parker is in preschool.  Hannah remains stable with her JRA and the medications.

We are in the midst of a great snow storm here.... it's absolutely gorgeous!  Our family loves snow and it's really great to see our kids bolt for the door as soon as they see the first flakes fly.  Today was no different, as our bundled up kids enjoyed sledding and fort making.  The end of their play would mark a milestone in Hannah's life, though.  

While running toward Michael, she landed face first into his elbow, knocking out both front teeth!  The teeth have been barely hanging on for a few weeks, so we weren't completely surprised about this outcome, but poor Hannah was a bit traumatized.  Her gums would not let up in bleeding, despite using a cold face cloth with ice for 45 minutes.  I finally called Ask A Nurse and it turns out we should have been having her hold a dry cloth on her gums.  Sure enough, the dry cloth worked like a charm.  But she is still walking around with a face cloth in her mouth at all times because she doesn't like the taste/feeling of her raw gums.  Oh poor girlie!  Perhaps the tooth fairy will cheer her up some?

Saturday, June 20, 2009

Tooth Fairy



We are excited to have another fairy visiting our house these days.  This time it's the beloved Tooth Fairy!  Hannah lost her first tooth a few weeks ago, another milestone.  Tonight while she was jumping on her bed (something that isn't allowed of course, making it so much more fun!), she stumbled and bumped her lip against her knee.  Next thing you know, her tooth is hanging, literally by a thread.  She hurried to the bathroom, where she peered into the mirror and pulled her tooth out.  She was a little concerned about the amount of blood but once that stopped she was okay.  
She wanted to 'brush' her tooth one last time to be sure it was nice and shiny for the Tooth Fairy.  She also decided to rinse it under water.  OOPS!  Down the drain it fell.  Her big blue eyes filled with tears immediately, she was so very upset about not having her tooth for the Tooth Fairy.  Michael started taking the pipe apart, immediately, while I took Hannah aside to explain that if we didn't find it, I was certain the Tooth Fairy would understand and we would write her a note explaining what happened.  
Alas,  Super Hero Daddy came around the corner, tooth in hand!  Hannah was so many things at once; happy, excited, relieved and crying.  phew!  What an exciting night. 

Camping


































We took our first camping trip of the season and had an absolute blast!  There is a wonderful place in Jefferson, NH called The Lantern Resort (thelanternresort.com) that offers motel and campground 
accommodations.  We are a tenting family for the time being, though someday we hope to graduate to a 'pop-up' camper.  This place was luxurious in the world of camping.  First of all, we had our own water source AND electricity panel.  Typically for camping, there are several if not dozens of sites sharing a water source strategically placed in a communal point for all sites to reach.  If this weren't enough, there was a brand new bathroom with hot showers, for FREE!  And a heated pool, playground, petting zoo and nature trails on site.  And most importantly, it is right across the street from Santa's Village!  
I hope you if you ever decide to camp and visit Santa's Village, you will consider this resort, it really was so great with the amenities.  And I almost forgot, they have a sleepy time hay ride every night along with games in the pavillion.  And they have Miss Sleepytime available to visit your camp site (or motel room) to read bedtime stories!  This place was sooooo family oriented it was a breeze.  It also allowed for some great freedom for the kids to roam and explore all in a safe environment.  

As always, we really enjoyed our time at Santa's Village.  This was our third visit and every year we are impressed with the cleanliness of the park and friendliness of the staff.  The kids have a ball and it is so reasonably priced.  We find this place to be of nice size in terms of amusement parks.  It is small enough to be able to complete everything in one day and not wait in lines.  yet it is big enough to explore and be in awe over, without feeling overwhelmed by too many rides and people. 

Special thanks to The Keefe Family for sharing our camping weekend.  We love you guys!


Wednesday, June 3, 2009

Kindergarten Graduation

This blog has been sorely lacking, I do apologize.  Life has been ridiculous these last several months and I am determined to revive this blog!  So I thought it very fitting, since our last entry was of Hannah on her first day of Kindergarten, to post a photo of Hannah at Kindergarten graduation.
Smiling pretty with Auntie Daria!

Hannah and Mommy

Our Kindergarten graduate looking 
soooo grown up in this photo!

Daddy and Hannah

Hannah alongside her Kindergarten Teacher sharing Hannah's dream to be an artist when she grows up!

Hannah with some of her classmates during their show.

Sunday, October 12, 2008

First Day of Kindergarten


We can hardly believe it, but Hannah started Kindergarten!  Seems like yesterday we were just bringing her home from the hospital!  Congratulations, Hannah, we're so proud of you!

Conversations with a 3 year old


Parker is our funny guy.  He loves to laugh.  He loves to be tickled.  He loves to run.  He loves to ask why.   He also loves to be the backseat driver!  

A few months ago, Parker became fascinated with 'STOP' signs.  Any time we drove by, near or upon a STOP sign, he would scream at the top of his lungs, "MOM!  STOP!".  And if you ask him what he wants to be for Halloween?  You guessed it... A STOP sign!

Conversation #1

The Setting:  Driving Hannah to school, still in my pajamas, still half sleeping, sipping tea and answering Parker's never ending curiosities

Parker:  "Mom, Stop.  STOP, there's a STOP sign!"

Me:  "Oh, honey, that STOP sign isn't for us, it's for the other lane of traffic"

Parker:  "Why?"

Me:  "Because we are on the busier street so those cars have to stop and wait their turn".

We continue our drive and take our exit to Hannah's school.

Parker:  "Mom, STOP!  There's a red sign.  MOM!  You didn't STOP and it was a red sign!  Mom, you're supposed to STOP!".

Me:  "Parker, it's okay, that sign just has a little bit of red on it, and it was a triangle shape, it's called a YIELD sign, not a STOP sign.  So we don't actually have to STOP we just have to drive slow".

Parker:  "But it was red,  MOM!  Red means STOP!"

I don't actually remember what I said next, but it was quite a challenge trying to explain the different shaped signs having different rules.  

Conversation #2

The Setting:  Living room.  I'm on the couch trying to catch a quick nap after a rough night with Hannah, while Parker gets to watch a cartoon.  

Me:  "Okay, bubbie, let's watch a cartoon so Mommy can take a quick nap."

Parker:  "Okay, I want Curious George."

Me:  "I can't find any, honey.  How about The Backyardigans?"

Parker:  "Yeah!".

I am just about to nod off when Parker YELLS:

Parker:  "MOM!  I HAVE SOME BAD NEWS!"

Me:  Sitting up wide eyed with worry.  "What is it?"

Parker:  "I only like The Backyardigans now, not Curious George."

Me:  sighing with relief that it isn't anything terribly serious.  "Oh my, that is bad news."

Parker:  "Well, sometimes I still like Curious George."

Me:  "Well, that would be good news then!"