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.

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?

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!

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.

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!"

 

Conversations with a 5 year old

This summer, I was blown away with how 'grown up' Hannah became.  Her mannerisms and tone of voice were more adult like than I remembered.  It was only when we had the following conversations, that I realized just how 'intellectually' grown up she had become.

Conversation #1.

The Setting:  hiking in the woods on a beautiful summer afternoon.

Hannah:  "I wonder how this all started?"

Me:  "How what all started, honey?"

Hannah:  "You know, the trees, the sky, the Earth."

Me:  "Ohhhh."

Hannah:  "Like, who had the first baby?"

Me:  "Well, honey, there are lots of theories....."

Hannah:  "Theories?  You mean like the theories about dinosaurs?"

Me:  "Exactly!"

Hannah:  "Mom, did you know that turtles were alive when the dinosaurs lived?  They survived because the dinosaurs thought they were rocks!"  This is followed by a huge belly laugh, since that is probably the silliest thing, you know, that the dinosaurs didn't know they were turtles.

We did have a great conversation about how 'this all started'.  But it was awe inspiring watching her grasp such a philosophical thought.

Conversation #2.

The setting:  The beach, building sand castles and pools with water.  Parker is worried that we won't have enough water.  I assure him the ocean is large and we will have plenty of water.

Hannah:  "Mom?  Will the ocean ever run out?"

Me:  "Oh no, honey.  There's actually more ocean than there is land on Earth."

Hannah is quiet for a couple of minutes and then her thoughts are verbalized.

Hannah:  "So, what happens if there are too many people and we run out of land for everyone to live on?"

Me:  Completely shocked, I pick my jaw up from the sand and say "Yeah, it's a growing problem, actually."

WOW!  Aren't children just amazing?  It is a gift to be raising my two great kids.  And everyday I am grateful that I get to see the world through their eyes.  They are constantly teaching me things.  For example, these conversations?  A lesson, that Hannah is comprehending things I didn't think she was old enough to understand, let alone question and grasp.  

This just in from Boston....

We are ecstatic to report that Hannah is looking perfect!  

We met with her rheumatologist yesterday and he confirmed our feelings:  Hannah is looking just perfect.  In fact, he said, just looking at her, one wouldn't know she has JRA.  

We've been feeling like Hannah has been doing well all summer.  No illnesses, she's eating great, growing quite a bit (she's gained 3 pounds and grown 3/4 of an inch since June!) and her energy level is right up there with her peers.  

Her doctor informed us that we can start a plan to wean her off of the Enbrel (the stronger of the two meds) immediately.  So, instead of four injections per month, it'll be three injections per month.  Woo hoo!  Who knew that would be worth celebrating!  Keep your fingers crossed that her little body will continue to be healthy with less meds.  

Summer Fun!

Enjoy the slideshow!  We've had a ball this summer, here are a few of our favorite moments!

Photo and video editing at www.OneTrueMedia.com

Parker at the Park!

Here's our busy boy!  He can never get enough of the park and climbing apparatus!  Parker's proudest moment this month?  Learning to pump on the swing all by himself!  Congrats Bubby!

Medical Update

June was filled with check ups and blood draws for Hannah.   

Her eyes checked out just fine, thankfully!  And Boston Rheumatology was pleased with her progress.  No added joints, no added medications!  YIPPIE!  We were just thrilled to hear this.

The only concern we (and the doctors) have is her immune system.  It is compromised with the arthritis alone but the addition of her meds compromise it further.  This is why it took her little body 10 days to fight off a 105 degree fever.  In general, it takes Hannah at least twice as long, if not longer, to fight off infections.  

Fortunately:

*she is a very good hand washer

*we have so much purell (in the car, in the house, in the back packs)

*we boost with vitamin supplements

*we eat healthy (aside from the occasional Wendy's visit!)

So, we're doing what we can, on our part anyhow, to ensure that she is clear of germs.  I always felt like I was a 'laid back' kind of mom about common illness (tummy bugs, colds, etc) but now that Hannah is so susceptible to infection, well, not so much.

The dilemma I do have right now is about vaccines.  Hannah is up to date, technically.  There area  slew of vaccines/boosters kids need between 4 and 6 years of age.  She is due for more of the polio/pertussis, etc.  Given her weak immune system and the slightest chance of infection from said boosters I have opted to hold off for now.  I have heard about some disturbing possibilities with vaccines and RA and the meds for RA.  So, I've got some research to do.  Fortunately, our doctors will have medical reason for any issues we may face with schooling.  

Mother's Day Tea

Hannah's school does this wonderful thing each Mother's Day.  They have 'tea' for moms!  

I was given clear instructions from Hannah to wear a dress and bring a purse.  I really wanted to enjoy this time with just Hannah in her space at school, so Parker stayed home with a sitter.  

As I walked into the school, I was ushered by Hannah to a beautifully set table with fresh flowers.  I had a special card and gift placed beside my name card.  The gift: a pin with a painted face that Hannah made herself.  

The children did all the work for this shin-dig.  From setting the tables, to preparing the delicate snacks and the best part: some singing!

Arthritis Walk

In May we attended the Arthritis Walk with friends and family in honor of Hannah.  We raised more than $3,000.00 to aid in the research for a cure for JRA.  

The support that pours in for Hannah continues to amaze us.  It is truly humbling to have such wonderful and thoughtful people in our lives.  

So thank you to everyone who helped with the walk, it was a complete success!

A special thank you to Logo Loc who donated our tee shirts for  "Team Hannah"

Sooooo Behind!

I feel like I am so behind on everything and have been for months now!  I thought for sure I would keep up to date on this blog.  HA!  Thanks to those of you who keep checking back for updates.

It is another rainy day here in NH.  A good day to catch up on tasks right?  I've cleaned the art closet this morning, done a few errands, caught up on dishes, etc.  So my hope is to post some of the mentally created blog entries from months ago!

Fevers and Colds and the ER, Oh My!

It all started Sunday afternoon.  Parker, our energetic boy, became sluggish and warm.  completely out of his nature in wanting to climb onto the couch and sleep.  Hmmmm, I thought to myself, must be a little bug.

Monday was the same story, with his fever hovering around 102.  I wanted to wait out the fever 24 hours to give his body a chance to 'burn' the bug off.  By evening it hit 103, so I caved and gave Motrin.  Five hours later, once everyone was sleeping peacefully for the night, I checked his temp before heading to bed myself.  

I was automatically sent into panic mode once the thermometer read 105.3.  And then you're supposed to add a degree when taking it digitally!  How is that possible?  I temp of over 106!  YOWZA!  

Off to the ER we went.  His temp read 104.7 and they immediately gave him a double dose of tylenol.  The actual ER was completely booked, so we spent our time in the waiting room.  While we were snuggled on a chair, I found myself surrounded by three other women.  One was there for an injured arm, another for an injured finger and the third for a cold/cough.  

Conversation between us flowed so easily, it seemed as though we'd known each other for some time.  They asked about Parker and offered their sympathy about my worries, trying to reassure me.  We were there for 3 hours, ample time for women to chat about life.  We were all sharing stories, struggles and laughs.  I know this sounds strange, but at times, it didn't seem like we were in an ER with strangers but rather at a coffee shop with friends.  

By 1am, Parker's fever broke, so we decided to head home and call the doctor in the morning.  As I bid goodbye to the women wishing them luck with their health, I was really looking forward to getting home to sleep.  Instead, I found myself feeling kind of sad that I probably wouldn't ever see these women again.  It was surprising to me, this connection that had just happened between complete strangers in a waiting room.  And yet, the yogi in me, feels grateful to have met them and had such a great connection.  Who knows, perhaps the Universe will unfold another event where we will meet and chat again.

Parker's fever didn't go anywhere, I'm afraid.  Today is the first day he is fever free.  Unfortunately he has a terrible cold.  Hannah started this same sickness on Tuesday morning and is still battling the fever.  This whole week has been filled with alternating Tylenol and Motrin every three hours.  Even with that, their fevers hovered around 101. 

The good news?  We were allowed to skip Hannah's Enbrel injection, far too risky with a fever.  

Big Boy Bed!

Parker has moved into a big boy bed recently.  He's been in his toddler bed for about a year now but really likes to snuggle at night.  As does Hannah.  When you do the math, you can see how four of us are squished like sardines in our King size bed!  

The truth is, we enjoy sharing a family bed but our children are the king and queen of bed hogs!  Poor Michael would end up half on the bed and half on the night stand.  I would end up on the last three inches of our mattress.  Our kids, however, would be spread out like eagles, snoring away quite comfortably.  Completely oblivious to our body aches, stiff necks and sleep deprived eyes!

  

Parker has seen how one of us gets to snuggle with Hannah in her own full size bed and began to request snuggles in his toddler bed.  So we decided to buy a full size bed and bid farewell to his crib.  This was bittersweet for us because we aren't having anymore babies.  While we had excitement in our eyes over a big boy bed, there were some tears over not having a crib anymore.  sniff, sniff.  (both kids had convertible cribs, so even as toddler beds, it still seemed like their crib).  

Parker is doing amazing in his bed.  He actually sleeps better than he ever has on his own.  And it's nice to crawl in with him and snuggle up together!  He looks tiny again too, with all the space around him.  First thing in the morning though I am reminded how big his personality is!  He is so proud in the morning to share how he spent the whole night in his bed (he forgets that most nights we spend a few hours in there with him, usually between 1 and 5am, at his request).  

Parker is a great kid, really funny and energetic.  We are lucky to have him, without a doubt!  He brings so much to our lives, including great dragon roars, silly jokes, a fantastic giggle and a smile that will melt your heart!  We're so proud of you, Parker, for sleeping in a big boy bed!

Clear Eyes!

Today was Hannah's quarterly eye exam.  JRA has an unfortunate connection with severe eye diseases like uveitis, which is a silent disease leading to blindness.  JRA kids who have a positive ANA (Anti-Nuclear Antibody) are at a high risk for such eye diseases.  For this reason, we see a great pediatric opthamologist who is able to see if white blood cells are present, which is the cause of uveitis.  

We were glad to hear that Hannah's eyes were 'clear' but surprised to learn that because the arthritis has worsened, the risk for Uveitis is decreased.  hmmmm.  Interesting, we get to worry less with her eyes, because the arthritis has worsened.  The human body is just amazing if not a bit confusing!

The photo represents an early birthday visit from Grandpa Bucky and Grandma Georgia this weekend.  They hadn't a clue that Hannah's favorite author right now is Jane O'Connor, better known for her "Fancy Nancy" collection of books.  Not only did Hannah get two copies of Fancy Nancy books but an entire dress up kit, as featured by our very own "Fancy Hannah".  Thanks Bucky and Georgia, we're so happy to have you in our lives!

Sibling Love!

As an only child, it warms my heart to know these two will always have one another as they go through this journey called life.  

Boston Visit

We had our follow up appointment at Children's Hospital today.  I'm happy to report that Hannah's Rheumatologist, Dr. Sundel, was pleased with Hannah's progress.  YIPPIE!  I was, of course, hoping for that kind of news but have prepared myself for the unexpected.  After all, our last visit in January was sure to bring good news.  And that was anything but.  

Hannah's range of motion is impressive considering the brief time she's been on Enbrel.  Her swelling is down some and it doesn't appear that the arthritis has spread to further joints at this point.  We are soooo very relieved and remain optimistic!  In fact, we don't have to go back to Boston until June!  We've never gone that long without a doctor's visit, woo-hoo for us!

So for now, we will continue what we're doing medicine wise.  We will increase her O.T. a bit since the decrease in inflammation allows her to do things she normally wouldn't.  Dr. Sundel mentioned some possible changes in the future should her body not progress enough.  I took the denial card on this news.  I don't want to know right now other med changes or injections or whatever the case may be.  I will worry too much and my imagination will get the better of me.  I want to remain optimistic and will continue to believe that this medicine is exactly what Hannah's body needs to get into remission!

The photo is of Hannah with Jennifer Vaughn, anchorwoman for WMUR 9 News.  Jennifer came out to our house a couple of weeks ago to interview us to help spread the word on JRA.  The segment is scheduled to air during the 5 O'Clock hour tomorrow or Friday!  Hope you can tune in!