After much harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.
The other day we were driving to a friend's house for a lunch-and-play date. We were on a country road. As we turned a curve, we saw some vultures in the grassy shoulder of the road. We simultaneously said, "Look at those vultures!" We giggled together, and then Hannah started singing,"We're your friends....we're your friends....we're your friends to the bitter end. T h e
We're so proud of the beautiful young lady she is becoming. She had a terrific birthday weekend with a trip to go whale watching in Virginia Beach!
Saturday was a beautiful day!
Apparently the whales didn't get the party invitation, so none showed up. :-(
We had fun at the Aquarium anyway.
(Hannah is encouraging the Komodo dragon to go eat Chris!)
(She did find a whale--a Humpback--her favorite species--even if it is a model. She's showing her flukes in solidarity.)
(and there was one very hungry shark...)
Later, we went out to dinner with aliens!
Finally it was time for gifts and candles!
It was her Golden Birthday--turning 13 on the 13th! Her best friend Shea sent her 13 birthday cards!
Her favorite gift is the large firetruck that really squirts water. Hannah has changed career paths from Veterinarian to Firefighter; she can't get enough of fire stations, firefighters and firetrucks.
Yep, we crammed 13 candles on one piece of Chocolate Peanut Butter pie! She could have used that squirting firetruck to put out the candles, but she managed to blow them out on her own!
When Hannah was sick the other week (she's all better, thank you!), we made homemade chicken noodle soup. While I was rolling and cutting the noodle dough, Hannah was stirring the soup. She turned around and saw this:
She said, "That's like chromosomes!"
It sure does look like a messy karyotype, doesn't it?
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!
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.
(click here for subsequent Research Study post)