January 3, 2013

Catch all....

So, here I am again, late as usual--skipping an entire month of posting.

We've had a busy holiday season:

Tree Hunters!


The DSAGR Christmas Party!

First official choir concert, with Mrs. P.
(Hannah did a great job staying on pitch!)
 

Annual Gingerbread House building with Hannah's good friend B.

Hannah and I made a trip to NYC in mid-December.  We went to see the Rockettes at Radio City Music Hall.  

My favorite picture of the trip!


But the real reason for going to NYC was to see Hannah's best cousin dance in the Knickerbocker Suite.   Mary is the same age as Hannah and has the same hair!   Mary was exquisite--a very accomplished ballerina.

 

 

Home we came, and brought a stomach flu.  Not so much fun, but it was over in a few days, just in time for Christmas.

Firetrucks galore!

Dinosaurs galore!

Grandparents, friends, holiday lights--we had it all!   Hope your holidays were filled with fun and the people you love.


November 29, 2012

NIH...you worry me.


As most of you know, I am a research fanatic.  I love to read it, I love to participate, I love to move science forward.  I know the difference between correlation and causation.  I understand what a double blind study is.  I understand statistics. I understand the reason for a 13 year old to have to have a pregnancy test to reduce skewing the results.  I don't know EVERYTHING.  But I know enough.

Hannah is currently in the midst of a National Institutes of Health study on brain development (see here).   Hannah spent a day at NIH for preliminary cognitive testing and getting acclimated to the MRI.   We had a good day.  We have to go back again to complete the testing and have the real MRI.   It should have been done weeks ago, but there have been scheduling snafus.  Good thing too.

On November 17th we received a form letter from the NIH Medicolegal section of the Medical Record Department.  (I've blocked our address on these documents.)


Attached was a report on "Hannah's" physical exam and test results. 



We weren't expecting any 'reports' since the cognitive test results were not going to be released to us, and she didn't have the MRI.  Or did she?  Apparently, Dr. Giedd thought she did. "MRI scan of brain performed without complication on 10/12/2012"

In fact, there was only one factual thing on the report: Hannah had a urinalysis (to prove that she wasn't pregnant).   The rest of it was ENTIRELY FALSE.  False, or mistaken.

This is not what we expected from NIH.

Fortunately we met Dr. Maddox this summer at the NDSC conference in Washington D.C.  Dr. Maddox spoke about the new Down Syndrome registry (a much needed resource to streamline research).  Since she is the Deputy Director of the National Institute of Child Health and Human Development, she seemed to be a good person with whom to share our concern.

________________________________________________________
November 17, 2012

Dr. Yvonne Maddox
NICHD Deputy Director
National Institutes of Health
PO Box 3006
Rockville, MD 20847

Re: XX-XX-06-5  XXXXXX, Hannah Duston

Dear Dr. Maddox,                                                            

My husband and I met you this summer at the National Down Syndrome Congress convention.  We are very pleased with the progress of the DS registry which you described in your talk.

Our family is very interested in research for the sake of science; our daughter has been involved in many many research studies in the past 14 years.  The very first study actually saved her life when she was three days old!

Recently we agreed to have Hannah (age 14, DS) participate in the ongoing NIH clinical research study 89-M-0006 “Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and Healthy Controls”.  Dr. Jay N. Giedd is the principal Investigator.

We made our initial trip to NIH on October 11th, 2012.  We were met by Dr. Nancy Lee.  Dr. Lee and her assistant Elizabeth Adeyemi were very warm and helpful.  The day was filled with hours of cognitive testing, surveys and a mock MRI.   We were very impressed with how they introduced Hannah to the noisy MRI.  It was clear that they had taken many steps to make sure that Hannah had a successful learning experience and was comfortable in the “pretend” MRI.  No doubt this will ensure that Hannah will be prepared for the actual MRI later this month.  Our appointment is Friday, November 30th.

However, we have concerns.  Today we received a form letter from Amanda Thume, from the Medicolegal Section (Medical Record Department).  Included with her letter was a copy of a summary of the findings. 

We were VERY surprised to find the attached Medical Record, with progress notes by Dr. Giedd.  We never met him.  He has never seen or touched Hannah, nor did any other physician give her a physical examination, yet the record shows that there was a “Detailed exam” and that she has “Typical physical features of Down syndrome”.  Dr. Giedd also determined that Hannah is neurologically “normal”.  In addition, Dr. Giedd believes that Hannah already has had her MRI scan of her brain “without complication on 10/12/12”.

This is very disturbing for us.   We expected the NIH to have high standards, especially for a research study.  Imaginary records?   How is this possible?  Our faith in NIH is wavering.   Should we continue with the study?  Has it been corrupted?  

Any information you could provide to reassure us would be appreciated.

We are attaching a copy of the letter and the medical record for you to review.  

Thank you for your assistance,

Beth and James XXXXXX
XXXXXX@comcast.net
804-XXX-3060

cc: Dr. Nancy Lee
Dr. Jay Giedd
Dr. John Gallin

_________________________________________________

We sent off copies of everything to everyone.  The day we popped the letter in the mail we received a phone call postponing our next appointment.  We are now re-scheduled for early January.    

And then we forgot about it.

Until this morning.   The phone rang.  (I've been hesitant in answering the phone still being gun-shy from all those political calls--ARGH!!)    Caller ID said "PUB HLTH SVC".    So I answered.  It was Dr. Maddox  (SCORE: 1 for Beth!).  She was very concerned.  She just received the letter (I chose the wrong mailing address).   She wanted to get some clarification on the situation.  She wanted to get this resolved before we arrived tomorrow (the appointment that was re-scheduled to January).   Dr. Maddox was worried that the appt. was canceled because the researchers were trying to cover-up the problem.  I assured her that it wasn't the case.  She said all the right things and asked all the right questions.  Did I have any ideas that could explain the situation? (error, sinister plot?)  She was glad that she had time to investigate.   

I find it difficult to believe that none of the other three letters arrived until today.  Really?  I know that at least two have offices in the same building.  I have the address from the letterhead from research correspondence.   

Dr. Maddox obviously rattled some cages.   This afternoon I received a call from Dr. Lee (who really had nothing to do with any of this).  She was really surprised.   We talked about it, and her theory is that it must be a clerical error.   The error must have been made by Dr. Giedd (pronounced ghee-ed).

Dr. Giedd called next.   He groveled a bit, and admitted that it most likely was him.  He somehow put someone else's record in Hannah's record.   He also never knew that medical records actually sent the records out to doctors and patients.  I wonder how long he's been working at NIH....either WAY too long, or he's brand new.   Or, it was just a plain old human error.  He did apologize.  He was more human than I was expecting.

It's amazing how easy it is to make a mistake.  This one wasn't a big thing--at least in terms of direct  impact on Hannah's health.  Hannah wasn't so lucky when a Rite-Aid pharmacist made a pharmaceutical error after Nan's Tonsillectomy.   She had a torturous and prolonged recovery since she basically had no pain relief for days post-op.

I know, people are people. I make mistakes, and I always hope for forgiveness.  I'm glad that this NIH drama was only a "mistake".  It could have been a system issue.  Or something else.

So that's that.  I think I have NIH back in order.   Maybe they'll give me free valet parking in January.  Oh.  Wait.  Valet parking is free for everyone.


Things about Hannah, by Hannah

*Last month I started a list of "21 Things About Hannah".  We were finishing dinner, and I started the list with "Loves baked potato skins" after she stole my empty potato skins.     We all talked over a few other items.   Then Hannah joined in.   She was spitting them out as fast as I could write.

Here is the unabridged list directly from her mouth:

1. Love having "Hannah and Daddy Days" on Saturdays going to Glory Days for lunch and running errands.

2. Cheerful chore girl.  Helpful and kind.

3. Love dogs

4. Champion pill swallower

5. Love to go to museums

6. Love love love live stage performances to watch and to be in them



7.Traveller--far away trips

8. When I am sick I always spray the nasal spray up my nose to clear it out.

9. I'm learning to type.

10. I like rainy days when I can stay in my 'jammas.

11.We love our pets



12. I love going to the movies.  I eat popcorn and drink coke.

13. Chocolate is my favorite candy.

14. When I grow up I'm going to be a firefighter and paleontologist.

15. My dad was in the Navy a long time ago.

16. I love to look at our boxes of family pictures

17. I have 11 cousins.  I love to play silly games with them.

18. My favorite song is Defying Gravity.



19. I like to learn about places in the world and ancient times.

20.  Volcanos.

21.  I'm excited about going to Disney World!

22. I am going to try the Haunted Mansion.



23.  My favorite board game is "Life".

24. My mom is a good cook and baker.  Also she loves turtles--all types of turtles.  Proganochelys is a turtle in dinosaur times.  It had 60 bony plates on its back.  It didn't have a retractable head.
(yup, she really said that!  and I had to look up how to spell 'Proganochelys')

25. I love toys--especially Webkinz, Legos, American Girl dolls, Toy Story toys and Rescue Heroes.


Which one is your favorite?  Mine is #8.  It cracks me.




November 6, 2012

Nan Talk: Bee Witch

On Sunday we attended a Halloween party which had been postponed courtesy of Sandy. Hannah's witch costume is kinda itchy, so she chose to wear leggings and a long-sleeved shirt underneath.  It's a bit unruly--long skirt, high collar, hat...

So she chose to use last year's bee costume so she could be comfortable while playing games and decorating pumpkins.  

There was a professional children's performer who had everyone singing and dancing. It was so funny to watch Hannah inch her way up to the front so she could be on the "stage".  The girl loves the limelight.


After that fun, we had a catered dinner. It was a great treat! Every family brought a dessert. Hannah picked these guys for our contribution (she found them in an American Girl magazine).



So sweet.  Literally.

After we gorged ourselves, it was Trunk or Treat.   Hannah switched into her witch costume for hauling the loot!   She also offered a rendition of "Defying Gravity" to her fans, with musical accompaniment courtesy of the Prius.

 
Of course, someone mentioned that they thought she was a bee.   
Without missing a beat, she said, "I was "Bee-witched!"


Crack me.

(that's what Hannah used to say when she was little--she never added the "up".)

November 1, 2012

Stolen from Facebook

This evening, while I was in bed with a headache, Kate was on Hannah patrol.   Here's her Facebook status:

Hannah is watching TV, picking a show On Demand. She finds one, but the picture is a little choppy.

Hannah: "Meh. Didn't work."

Kate: "No, it's playing!"

Hannah: "I know, but it's pixelated."


Ha!  Vocabulary wins!

October 31, 2012

Defying Gravity!! 31/31

I know I owe you one more post, but I know you're a forgiving lot.  Hannah and I are working on a post together, and we promise to get it up soon.

Today was a fun day!

We started with Pumpkin carving:


Hannah's punkin' skillz have improved in the past year!  I guess this is one way to assess fine motor proficiency.




But then we were interrupted with a gas leak in the attic (one of the furnaces is up there).  The Gasman helped me fix it up!  Free!  Yay!!!

So we continued on....Hannah did all the straight lines and I tidied up the details. Hannah really liked this Great Horned Owl.




Soooo...I forgot to tell Hannah to change our Jack O'Lantern's name.
She named him Horny.
Of course, that was the first thing out of her mouth when she walked into her art class this afternoon...

Way to go, Mom!



We scurried off to guitar lessons--Hannah's making progress!  Slow and steady, but she's picking up the tempo.   Soon we'll be able to give you a video of the rockin' Bird!

Quick dinner and out the door for trick or treats!

Hannah is Elphaba.  If you don't know who that is, Elphaba is the real name of the Witch of the West in the Broadway show "Wicked".

She's singing "Defying Gravity", her favorite song.

Here she's playing the part of the Wicked Witch of the West in the Wizard of Oz.  




She'll get your little dog, too! 


Watch out Dorothy!!!

A satisfied candy hoarder is now watching TV and consuming as much as she can.  Then the rest of us can forage when she goes to bed.

October 30, 2012

Jeanne #30/31

When I was eight years old, our family moved.   My Dad had been chaplain at a small Lutheran college in East Orange, NJ, and he took a call to be a pastor at a church in Dunellen, NJ.   Our new house was a parsonage, owned by the church.

The day after the movers unloaded the truck, we were all busily moving boxes from one place to another as we unpacked.  The front door was wide open as we trekked back and forth from car to garage to house.   I vaguely remember being surprised by finding a little girl walking upstairs in our house.   She was short, had straight black hair, cut in a pageboy style.  It was 1972.

This little girl was Jeanne. She lived in the house across the street with her 3 brothers and 1 sister.   She was seven years old.  And she had Down syndrome.

I. loved. her.

We spent hours and hours playing.  She was thrown into the busy neighborhood games of tag, kickball and Ghost in the Graveyard.  She'd come over to play and I'd teach her how to play Go Fish.  We'd play in the sand box. We'd bake brownies together. She came to all my birthday parties.

We never argued.  No middle school drama with Jeanne.  She was one of my very best-loved friends.

Linda, Jeanne's older sister, was my age.  I remember Linda being proud that Jeanne was in the "Educable" class at her segregated school.  She told me about the differences between "educable" and "trainable".  This was in the early days of public school providing any sort of education for children with cognitive disabilities.

Our neighborhood was amazing. So many children, every one accepted Jeanne--looking out for her, including her in our games, running through the sprinkler, climbing trees...


Guessing this was about my 13th birthday party.  Jeanne was about 11.

When Hannah was born, my mother said that all she could think of was the hours and hours I spent teaching and playing with Jeanne.

I remember her shoelace patterned scars on her legs and arms, where surgeons had taken veins or tissue to repair her heart defect when she was a baby.   It brought me great comfort to think about Jeanne when I learned that Hannah would need similar surgery.  Her surgery in 1965 or 1966 must have been much more risky than when Hannah had hers in 2000.


We moved to Pennsylvania when I was 15.  I don't think I saw Jeanne again.   While I didn't see her, I thought of her frequently.  As a teenager, I worked at a day camp for children with disabilities.   I always kept my eyes open for people with Down syndrome.  When I went to college, I considered becoming a Special Ed teacher. (I took a 100 level Education class and lasted about two weeks before I transferred out.  Clearly at age 18 I knew I couldn't follow all the rules that teachers have to learn. Ha!)

I majored in Psychology.  I learned quite a bit of child development, including "abnormal" psychology. I was much more interested in cognitive psychology than clinical or counseling psych.  I also focused on animal behavior--the hows and whys of behavior of wild and domesticated animals, particularly non-human primates.  (This is why at an early age my children learned the easiest way to sort out  monkeys and apes:  apes do not have tails.)

I graduated from college, and followed my heart--giving up the possibility of a position in Puerto Rico studying a tribe of Rhesus monkeys that live on a nearby island.  Instead, I got married, and started a family.

I still held my memories of Jeanne.  I always thought I'd adopt a child with Down syndrome.  James had never had any experience with anybody with a disability--physical or intellectual.   When we decided to add to our family of four, we talked about adopting a child.  In the spring of 1997 we filled out some forms for the state about the kind of child we would accept.  A few weeks later we received a reply saying they had no children that met our criteria at that time.   The very next day I took a pregnancy test.  It was positive.

Fast forward:  Hannah was born.  Six hours later, a doctor suggested that Hannah might have Down syndrome.

How about that?   In retrospect, it's pretty fabulous!  


Who has a love/hate relationship with Facebook?                 Me.

Some of the very best things can start with Facebook.   I reconnected with my childhood friends.  Karen, Kathy, Suzanne, Rosemary....and Linda.   And I got to hear about Jeanne!   She's living in a group home in New Jersey.  Linda is her guardian.

Remember that summer trip to Vermont?  On our return trip south, Hannah and I made a pit stop to see my old neighborhood friends in New Jersey.  Including....

JEANNE!!!

I was amazed.  She has a memory like no other!  Her speech was far better than I ever expected.  She has friends and activities, and she's still hilariously fun!

We spent the afternoon together, with a cookout, swimming in the pool, catching up on 33 years.  

Hannah, Rosemary, Me, Karen, Kathy, Linda (Jeanne was in the hot tub!)

Since Linda became Jeanne's guardian, she's been on a sharp learning curve.  It was great to learn from her, and for me to share information too.   I told Jeanne that I was SO GLAD that I knew her.  I am different because she was in my life.  I never once used the word "Retarded" in a derogatory way.  I always respected people who were different from me.   Jeanne changed me.  She made me better.


I think that everyone is made better by having interesting, loving, funny, caring, genuine people.   That's some of the best of having a person with Down syndrome in my life.  Lots and lots of people with Down syndrome.

Full circle.

Love Love Love Love Love Love Love Love Love Love Love Love Love Love