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!

Another good one!

Today was shot day for us.  It went incredibly smooth and quick.  Michael is out of state on business this week but fortunately I have a spectacular friend whom I lean on often for support.  A special thank you to Ross for hugging Hannah while I administered the injection.  And I have to add that Hannah's friend Jamie was so helpful in distracting Hannah with knock-knock jokes!  Thanks J!  And then there was the added distraction of Parker pushing little Annie to the ground causing Annie to wallop into tears (sorry Annie!).  And remember I have the shot down to 3 seconds, clearly a LOT can happen in a mere 3 seconds.  

Hannah cried again, but not until after the needle was out!  Her crying didn't last 45 seconds and later we talked about how it hurts but only for a short time.  I'm so glad this one went smoothly and will hope for the same results for the shots to follow.  

This photo was taken today.... a couple of cool kids with their shades on!  It's been a snowy winter for us, this will probably sound silly, but there's actually been too much snow for the kids to play in!  Seriously, if they were to sink in, we would never find them!  Today we were presented with warm temps (well, warm for NH!  A blistering 45F) and the kids were loving being outside.  Hopefully the fresh air will guarantee a full night's sleep in our house!  Aw, who am I kidding, there's never ANY guarantee when it comes to sleep!

Fourth time's a charm!

I gave Hannah her fourth shot on Thursday.  It went sooo much better than the last two, thankfully! 

 

Michael was home for this shot.  I gave Hannah a quick reminder that I was preparing her meds as she continued to play.  Michael sat with her while she iced her leg and then held her on his lap, with her face buried into his chest.  I rubbed her leg with alcohol and began explaining all the steps, quickly but thoroughly, so there were no surprises.  I gave a quick count down, poked and removed, in three seconds or less.  It wasn't until the needle was out that she began to cry.

 

 As always, Hannah immediately climbed onto my lap for a snuggle while we iced her leg again.  I welcome these snuggles the most since I am the one inflicting pain and it feels way more natural to snuggle your little one rather than cause pain.  There was a slight bruise the next day but that is normal.

Phew!  Now we don't have to think about it again until Thursday!  I'm so proud of Hannah for being so brave!

Super Parker!

We never know what Parker is going to wake up as.  Each day is a new surprise, this photo represents Parker as a Super Hero.  Before he even had breakfast, he decided this was his role of the day!

Parker has an incredible amount of energy and a quest for curiosity like I've never seen!  On this particular day he created a number of situations for Hannah and I to be 'saved from'.  No doubt, it was a much safer day in our home thanks to Super Parker!

Some Good News!

Finally, we have some good news to report on Hannah's front!  We went to our O.T. session on Monday to discover that Hannah's range of motion in her left wrist has sky rocketed from 0 degrees to 50 degrees!  YIPPIE!  This number is considered to be functional, something Hannah has never had with her wrist.  There is a lot of strength training to do as well as retraining her brain to utilize certain muscles that have been underdeveloped, but there is such great hope today.  This hope is very welcomed as it has been absent these last few weeks.

Clearly the Enbrel is having an effect just as the doctors said it would, right around week 4.  Tomorrow will be our fourth shot of Enbrel, so we're right on schedule in terms of seeing the effects of the medicine.  

Hannah is being as brave as she can with the shots, but we are far from mastering them.  The last two shots didn't go smoothly and both times I ended up bruising her little legs.  sigh.  It's a learning curve and I am determined to succeed!  I'll post tomorrow and let you know how things go.

Hannah's History

Sometime in September 2006, I asked Hannah to hold up her hands on our chalk board so I could trace them.  To my surprise she could not hold her left hand flat against the board.  I tried to gently push her wrist down and was faced with some serious tension.  I made a mental note and checked it a few days later with no change.  Even checking it at night, while she was in a deep sleep, we were unable to bend her wrist.  Any force on our part, caused serious pain.  We were stumped and worried.

We saw our doctor who ruled out any kind of injury or break in bones that may have fused together.  We were then referred to a pediatric orthopedist, who, upon viewing Hannah's X-Rays, informed us that Hannah's wrist bones were growing at the rate of a 6 year old (she was 3 years old at the time).  The condition that causes this?  Juvenile Rheumatoid Arthritis.  I had heard of Rheumatoid Arthritis in older people, but kids?  

We were then referred to a rheumatologist who confirmed her JRA diagnosis in December '06.  Hannah was prescribed a non-steroidal anti-inflammatory to be given orally twice a day.  For the next several months, this medication 'appeared' to helping.  Hannah seemed less swollen and carried on like many other three year olds.  

In September '07, Hannah was playing what we call 'dizzy spinny' ( you know, the game where you look up, hold your arms out and spin until your silly dizzy!).  Well, inevitably, she got so dizzy she fell into her dollhouse.  I was there in a flash to check for injuries and was shocked to see how swollen her right thumb was.  I was convinced she somehow broke it.  When I bent it though, she didn't seem to be in any pain.  And it didn't feel broken.  My instinct told me the swelling was probably already there and that this had everything to do with her JRA and nothing to do with 'dizzy spinny'.

I contacted our clinic to rule out any thoughts on injuries.  They agreed it was probably JRA related so I contacted our rheumatologist.  The nurse from rheumatology was less than helpful informing me that the rheumatologist 'doesn't see patients for acute wounds'.  Despite my attempt to explain that this wasn't an injury but rather a flare up with her JRA, we booked an appointment to see our doctor to jump through the hoops of an examination and X-Rays to rule out any injuries.  Upon examining, our doctor discovered that not only was Hannah's right thumb swollen, but her left big toe as well.

This doctor questioned me fairly hard about why we weren't seeing a pediatric specialist at a tertiary intervention clinic.  Honestly, up until that point, it seemed like things were going well and I rarely questioned doctors, so I just assumed we were doing what was best.  I have since changed my timid approach on medical professionals!

By October '07, we found a new team of specialists to handle our case, down at Children's Hospital Boston.  These doctors only handle JRA patients, seeing 3,000 per year.  Children's Hospital is also a teaching hospital so there's always 'fresh residents' who are eager to learn through thorough examinations.

Upon Hannah's examination, the resident noted her left wrist, left elbow, left big toe and right thumb.   Four joints!  In less than a year of being diagnosed, we went from one joint to four!  This level of JRA is called pauciarticular.  They prescribed Hannah a new medicine called Methotrexate, given once a week.  

We stopped the non-steroidal anti-inflammatory and started methotrexate immediately.  The thing with Methotrexate is, it takes about six weeks to work in the body.  During this time we saw some serious swelling and stiffness in Hannah's body.  Not just the aforementioned joints but in her body as a whole.  She was slower to get down stairs, climb into the car or even onto the couch.  Week 5 on Methotrexate, things started to turn around and she moved easier and the swelling was decreasing.  

Our follow up appointment in November went fairly well.  Since her body seemed to be tolerating this new med, they increased the dose and also prescribed Physical Therapy and Occupational Therapy.  

We started P.T. twice weekly in December.  It was amazing to have the therapist point out the differences in Hannah's wrists.  Hannah's left arm is slightly shorter than her right.  Her left wrist is far less developed in terms of muscles and tendons and is smaller in general than her right.  She is also noted to have benign hyper mobility, her ability to flex her joints is extreme.  In particular her left fingers because she has been overcompensating for so long.  We also started O.T. weekly.  It's been a lot of driving and Parker has been less than excited to be in the car so much!

We were excited for our follow up appointment in January since the medicine and therapies seemed to be making up for lost time.  Hannah's range of motion was improving, the swelling seemed better and we were feeling really good about things.  As most of you know by now, the appointment was far from what we expected.

While the specialists were pleased with Hannah's progress, they made it very clear that she was not progressing fast enough.  Hannah's X-Rays revealed joint damage and accelerated growth in her right thumb (consistent with her left wrist).  Children have an amazing opportunity to re-grow and/or heal such damage.  The window of opportunity is now.  The next several months are crucial in getting Hannah into 100% remission.  Without remission her bones will continue to grow at an accelerated rate causing her growth plates to close permanently.

Methotrexate, alone, will give Hannah a 30% chance of remission.  The addition of a new drug called Enbrel will increase those chances to 70%.  Enbrel is a biologic drug that slows and/or stops the production of TNF, a chemical Hannah's body produces too much of, so her body attacks itself, hence the label of 'autoimmune disease'.  

The drawback to this medication is the form in which it comes.....an injection.  Hannah isn't a fan of needles (what kid is, right?).  This wasn't going to be easy.  I mean, how do you explain to your child that you're going to inflict pain but it's supposed to be helping your body?  And are you ready for this?  I am the lucky one to administer the weekly shot.  sigh.  

Thanks for sticking out this looooong post!

Welcome!

We're so happy you've decided to visit us!  This will allow us the opportunity to keep you all posted on Hannah's progress with JRA, in addition to sharing our everyday life!  I will start with some background information on Hannah's condition for those of you who are new to our family's situation.  

We look forward to hearing your comments (if you're new to blogs, there is a link at the bottom of each post entry).  Thanks for your support!