June 30, 2011

The end of the Research Study

We're heading back to Baltimore today.  The final visit to Kennedy Krieger is on Friday.   Hannah's got a long day of testing ahead of her (cognitive, medical).   Fortunately she loves that stuff.  I think it's because it's a novelty; she thinks it's fun.  I never test her.  I know exactly what she knows, since I'm with her so much, so I don't need to test her.

Our "field trips" this time are to visit Glen Echo, the home of Clara Barton.   Hannah read the Magic Treehouse book about the Civil War and she's been interested in Clara Barton ever since.  She's read a couple of simple biographies about her, so the next logical thing is to go see where she lived!    It's just outside of Washington, DC, so hopefully we'll get there for the noon tour today.   Then we'll head over to Annapolis to stay with a college friend of mine.

After the doctor's appointments hopefully we'll have time to head over to the Flag House.   Hannah's music class is working on patriotic songs, so what better place to go than the place where the flag was made that inspired Francis Scott Key ?    I remember taking the older kids to the Widow Pickersgill house--at Chris's request.  He was about six years old (pre-Hannah), and was quite the little patriot.  Since that time, the Pickersgill House has grown up and seems to be a nice small museum.   We shall see!   We won't make it to the Fort, since it's Friday afternoon---traffic traffic traffic!

James and I have been mulling over the options regarding continuing with the Rivastigmine medication.   We both are leery of long-term medications, especially ones that don't have a track record.   This medication has only been used in the Alzheimer's population--which is generally a population that is reaching the end of their lives.  There is no information about how it could affect an adolescent.   We also don't know if there will be any regression.   Will she keep the gains she's made?  If this medication is helping to clear out the amyloid plaques that have building up since she was born, how long will it take before they build up again? 13 years?  How much experimentation are we willing to risk?  (Answer: not a whole bunch)

I have many questions for Dr. Capone, and our pediatrician here.  I wonder if it's a good idea to have her take it for 6 months on, 6 months off...I wonder if we should just drop it entirely...   I don't think the doctors have answers to what I want to know.

I have a very dear friend who says, "What Would Beth Do?" when she has a problem with a kid or a spouse.   She cracks me up.   She only says that because she's so patient, gracious and merciful, whereas I am just straightforward, no-nonsense, tell-like-it-is.   If I don't like it, you'll know it.

So, tell me, What would you do?

To follow up with this post, click here.

June 29, 2011


Hannah is a big Elvis fan.  I don't know how that happened.  I do my best, but apparently, that wasn't good enough in this case.   She's a rockabilly girl, and there's nothing I can do to change it.

Last weekend I noticed that there was a concert at our local State Park--Elvis Elvis ELVIS!!!    There were three Elvises.  One was a younger Elvis, the other was a 70s Elvis.   And the third one was a 5 year old boy who was the nephew of the 70s Elvis.  Both of them had sequined jumpsuits.  Ummm.  That's all I can say about that.

Hannah had a blast!  She made friends with all the senior citizens.   She bought a CD of the 50s Elvis impersonator.  And she's been rockin' ever since.

June 18, 2011

Nan Talk

Hannah's been on a roll lately--lots of new language skills and showing us more and more memory tasks and understanding innuendo.

Two funny things today--one on purpose, the other, a slight misunderstanding:

1.  Hannah was eating hard boiled eggs as part of her lunch.   She had a little burp.  She said, "Egg-cuse me."

2. Her computer was not behaving.  She said, "I need that Mozzarella Firefox to come up."

Bonus:  Her latest joke:

Q:  What kind of suit does a duck wear?

A:  A ducksedo!

June 14, 2011

Odds and Ends

Wow.  I guess I totally haven't been writing anything lately, have I?   I was supposed to write a couple of posts while we were on vacation.  I actually wrote some of one of them, but it was so boring that I dumped it and thought I'd start fresh.  But I didn't. Yet.

And nary a beach photo did I share.   Humph, you say, and rightly so.    I shall at least remedy some of your suffering.

Annual Dairy Queen ritual....

This is actually Chris...

Team Pirate, performing during our Scaventure game!

Hoping for a prince!

Shirley Temple with FOUR cherries!

Baby nurse shark--the fisherman let Hannah throw it back into the water.  Pretty cool.

Mmmm.   That's North Carolina for you!

Shea (Hannah's BFF) was very creative with the nail polish!

My BFF, Roxanne

Vacation disappears so quickly!  We've been home for a little over a week, and we've already forgotten those sandy toes and seagulls.

We arrived home to eager doggies.  Hazel had an odd tumor removed from her leg a couple weeks before our trip (benign!).  She had a long recovery, and she finally was cleared by the vet just before we came home.   Our great house/pet sitter kept her happy and safe.

This past Friday was Hannah's piano recital.   I still have to download the video, so that will be another post.

Kate is down to six months left in the Peace Corps!  My parents are treating her to an escape vacation to Greece. The three of them are there right now! They've done Athens, and are currently in Thessaloniki.  Next up (Kate's choice): Naxos!

James surprised Hannah with tickets to go see the Imagination Movers (yes, she still does enjoy preschool music, which, in my worldview, is preferable to most of what other 13 year girls are listening to).   She has a crush on Rich.
He actually noticed the sign and he winked at her!

And Smitty gave her a High-5!

Just yesterday, Hannah finally braved sliding down the fire pole at the playground! When she was little she had a bit of an accident on one, and she's had a love/hate relationship with it since. Not anymore!

Today, we said goodbye to that long hair.   She had 6 inches cut off, and she's loving it!

My personal news of the week is that I was diagnosed with Lyme Disease.   I don't have many symptoms, so hopefully the medication will knock out what I do have. When I'm better I might have to have a Mojito party--limes for the Lymey!