Yep. I'm back!

Okay, I don't have any excuses other than I wasn't motivated.   And I'm not promising that I am motivated now either, but at least I'm breaking the ice!

We are all doing pretty well--months flying by, 7th grade completed, many many trips to fun places (Mexico, Key West, Beach, a friend's wedding, Camp PALS, the NDSC convention in D.C., a tour through New England...).   We've been home one weekend since the middle of April.   But now we're settling in with no real agenda until September.   It feels good!

Hannah's been doing well.  She's up to her usual funny stuff, cooking, joking, creating.

Here's Hannah's description of the picture:
The Fire Brigade is there to put out the fire in the volcano before it burns the Brachiosaurus while the Pterosaur escapes the poisonous steam.


When we were in Vermont (family reunion) we took a little trip up to the Ben and Jerry's factory!  It was a lot of fun. 

 These are HUGE tanks! Three storeys tall!

 This is the graveyard of ice cream flavors that were eliminated over the years.  

Hannah is playing the role of the ghastly host of the graveyard.

 This was my favorite.

We also had the chance to go to Haverhill, MA to visit the Hannah Duston statue. (Click to read the backstory)

She was really excited about this!  A dozen years ago my mom went to Haverhill and bought some Hannah Duston postcards and a t-shirt.   I remember Hannah being two years old, looking at the "Adult Large" T-shirt, having a hard time imagining Hannah ever being that big.  I stuffed the shirt in a ziplock bag and left it on the top shelf of her closet.  Look at her now!  She's wearing that very t-shirt (a bit baggy still), and at 5'4" she's definitely taller than the original Hannah Duston.  She's more than I ever could have fathomed--delightful, moody, sensitive, silly, thoughtful, frustrating, playful, ridiculous, funny, creative, loving, obstinate, crazy, goofy--it's a whole package.  I love that girl.

Miscellany

Time to catch up and fill in!

1.  When we had our second trip to Kennedy Krieger we received a copy of Hannah's EKG (did you ever wonder why it's an EKG when it's an ElectroCardioGram?  It originally came from the German, Elektrokardiogramm). There was a little glitch that Dr. Capone mentioned.  Hannah showed borderline LongQT.   This is when the ventricular electric charge doesn't re-charge fast enough to maintain sinus rhythm (potentially fatal).  Her EKG showed she was just over into the borderline.  The weird thing is that LongQT is a congenital problem--very rarely diagnosed.  It also can result as a side effect of certain medications.    Hannah was not on any medications. Obviously she's had a myriad of cardiac tests, catheterizations and surgery--LongQT never showed up. So, after a short freak-out session, we decided that it was just a screwy test result.  


We already had Hannah's bi-annual cardiology appointment scheduled later that week, so I brought the EKG report along.

Sure enough,  Dr. F's interpretation was that the EKG was "over-estimated".  That the measurement could be "estimated" was news to me. I thought that EKG was rather precise, but apparently there is room for human error in reading the results.

Dr. F.  did the most thorough cardiac exam that I've seen since Hannah's surgery 11 years ago. Hannah's open heart surgery repaired her 2 ASDs, 1 VSD, a PDA and a clefted mitral valve.  It's been so long since the surgery that I rarely think about it anymore.  Hannah was really interested in the echocardiogram, and the doctor explained everything--blood flow, pressures, mitral valve.  She even showed Hannah her liver and kidneys.

Hannah's stats are:  5'3"   116 lbs.  BMI 20.5  This puts her in the 75th percentile for both height and weight on the typical growth charts.

The best part was when Dr F. said Hannah was doing so well that we don't have to go back for THREE YEARS!

2.  Last week we upped the dosage of the "placebo/Rivastigmine". The first two weeks were at half-dose, so now she's on the maintenance dosage. So far she has not had any side effects (most common side effect: GI upset).  We are still assuming she's on the placebo.

3. Hannah has been unusually interested in words lately. She's been asking for definitions, which she's never done before.  "Mom, I don't know what does 'eager' mean?"   "What is migration?"  

She's also been trying new words that are not in her typical vocabulary:  "I'm sorry I was grumpy, Mom.  I was just feeling impatient."     When Bunsen was boisterously running around the house she said, "Bunsen, you make me concerned."

4. A year or two ago I tried to teach Hannah how to alphabetize. We fizzled out after a bit. She did well as long as there was only one word for each letter of the alphabet, but getting her to look at the second letter in a word (pain, plant) didn't go very well. This week we brought out the dictionary, letter tiles and random flashcard words.  She picked it up right away. I had her alphabetize a dozen words at a time (using an alphabet line).  Then I had her find each word in the dictionary. She gets a little lost using the guide words  finding words beyond figuring out the third letter:

I am excited that she's making progress and figuring it out!  Waiting until a child is ready for a particular task is key to success.

5.  Hannah successfully made a ponytail!

(I just noticed that the picture you see over Hannah's right shoulder is an 1851 Fasel print of Thomas Duston protecting seven of his children during  an Indian Raid.  To read more about an interesting story about Hannah's namesake, look here.)

6. Hannah just finished her latest series of art classes.  They worked on perspective and self-portraits.   Since my printer is not cooperating, all I've got are some pictures of her three-dimensional cube of her self-portraits.

All the students thought that the profile was the most difficult to draw.

I especially like the back and top-down views.  She really figured out how her hair must look from above with a barrette!

I

7. We all had a miserable cold 10 days ago.   Hannah still has some congestion.   She felt terrible.

8.  We finally found Hannah's camera, so she's taking tons of pictures and will be creating a picture blogpost soon.  Maybe.

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(click here for subsequent Research Study post)

Hannah Duston

We spent Friday enjoying the warmer weather (snow disappeared quickly!), preparing for a dinner party (Sat night) and tidying up. Hannah's chores included dusting. She really likes to dust, which is good, since we always have lots of it!

While dusting the piano she said, "I'm really good at dusting. That's because I'm Hannah Duston!!" Ha! Yes, her middle name is Duston. It's a family name. Actually, she's named after a famous Hannah Duston (sometimes spelled Dustin). Hannah Duston was the first woman in North America to have a statue erected in her honor.


I have not yet told Nan the origin of her name. It is a rather colorful story. And brutal. And quite politically incorrect.

When we were awaiting Hannah's birth, there was great drama between Kate and Chris. Kate was hoping for a sister, and Chris was hoping for a brother. James and I always liked to be surprised at the birth of our children, but for the first time, for the sake of a peaceful entry into siblinghood, we decided to find out the gender via ultrasound. Upon learning that he was expecting another sister, Chris was as devastated as a seven-year old can be. As a consolation prize, we decided to let him come up with his baby sister's name (reserving parental veto power). His first choice was Guenivere. Which was promptly vetoed. He did some research and found that the Americanized version of Guenivere is Jennifer. Which was also vetoed (nothing personal Jen, Jenny, Jennifer, et al).

Eventually I showed him some of our family tree, and told him an abridged story about Hannah Duston. It's filled with death, bravery, scalping, daring escape and, eventually, reunion. What more could a boy want? The name was chosen.

You can read the Wikipedia version here. Also, I see on Wiki, for those of you following along, that there is reference to Hannah Duston's mother as a Webster (see my earlier post about Noah and Daniel Webster).

So the original Hannah Duston was a woman who, after having her newborn child killed in front of her, was taken captive by natives. She escaped by killing and scalping her captors, and made her way back to her family. She was a woman who met her challenges. Just like my girl. We didn't know our Hannah was going to have as many challenges as she does. But she's got a fighting spirit that has carried her through many medical and developmental obstacles. Well named, well loved.

But watch out for that tomahawk.

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An addendum: I just found a link to the story I grew up with. It's quite a bit more gruesome than the Wikipedia version. You might not want to read this. Really. But there it is. Tempting you.

One thing I never noticed before is that Hannah Duston was captured by the Indians on March 14th. That's mighty close to our Hannah's birthday--March 13th.