Segway Lesson!

This morning Hannah took her first lesson on a Segway! We have enjoyed traveling around our city with the tour guides (lots of history, art and nature). We thought it would be fun if Hannah would be able to join us.  I stayed home while James took Hannah.

It was hard work, but she made good progress.

The hardest part for her is to keep her eyes up.  It's the same issue that we had when she was learning to ride a bike.  (She has made several forays into bicycling; she can keep her balance, but she doesn't pay attention to her surroundings.)

She'll need a few more lessons to be sure she's safe out on the roads, but she's excited!

I'm so proud of her--she loves to try new things, from food to sports to travel!

Still kickin'

Well, long lost me.  

We've had quite the year or two.     Too much to fill you in, but you'll have to go with what I've got.

When we last chatted, January 3rd 2013, was the day before Hannah was diagnosed with endocarditis. She had been having random seemingly unrelated health issues. Fevers, not much stamina, sore toe, headache, sore finger, night sweats. All days apart--no rhyme or reason. We ended up in our FAVORITE pediatrician who did some bloodwork, which showed wacky levels of several things. This bought us a trip to the hematology/oncology clinic at our local teaching hospital (MCV, Richmond, VA).

Short story, before giving Hannah a marrow biopsy, a medical student suggested that we have an echocardiogram and that's how she got a diagnosis of endocarditis. She was admitted and stayed for a couple nights, getting a PICC line (a heavy duty long-active IV that deposits medication close to the heart, and allows blood draws without new needles) and started heavy antibiotics.  She was discharged on a Sunday. We had a home nurse come to teach us how to use the IV medications.  48 hours later we rushed Hannah back to the hospital.  She was in agony--abdominal pain. She was admitted.  Many many tests and 36 hours later they diagnosed right kidney failure.  Apparently she had a clot or vegetation (that's what they call the endocarditis bacteria colony breaks away).

Isotope scan

The first PICC line, four days later she had a replacement.

She was in the hospital for nearly a month with many other ancillary problems (seizure from a Vitamin K shot, tendonitis--can't walk, bone marrow biopsy to rule out leukemia, etc). Once she was ambulatory we had 6 more weeks of home IV treatment. She is WHOLE. She will have to take blood pressure medication for the rest of her life due to her kidney problem, but if that's the worst, we can live with that.

Did I tell you that Chris graduated from William and Mary? And that he was accepted to Yale and UNC-Chapel Hill for graduate school? He chose Chapel Hill. He's just starting his second year in their chemistry PhD.

Chris with my parents, May 2013

Later that month James' job ended here in the Richmond area. He quickly got another job--in Denver, CO. We prepped the house for sale while James drove out to start his new position. We sold the house within two weeks.  The day that we ratified the contract for the sale, the new job dissolved.  We found ourselves without a job, and no house (no, we didn't fight the contract--we'd just have had to sell it later when we got a new job somewhere else). We decided to stay in the Richmond area, renting a little house in November. Kate had moved locally on her own--working as a Police Dispatcher while working on her MBA, Chris moved to North Carolina, so it's just the three of us (plus the doggies and Puddle).

Finding a job has been frustrating. We are having a lot of time together. We're generally in good spirits, with some ups and downs.

Hannah has been living well: tackling the bass guitar, singing in her voice choir, playing softball with the homeschool team, performing in LIVE ART with Jason Mraz and kd lang, learning to play ukelele, working hard with geometry (she loves it, even if she uses a calculator to compute, she can create an equilateral triangle using a compass and a straight edge), spending FaceTiming her best friend Shea, mastering an omelette, donating 14 inches of hair, and walked her first 5K to help with Bone Marrow donation.

Hannah still wants to be a firefighter. For her birthday she chose to bake cookies to deliver to our local fire station--Station 16! Perfect for her Sweet 16th birthday.

Soon we'll be starting the end of 9th grade soon (we didn't get it all done). Soccer starts soon, along with tap dance. Haven't planned out the rest of her schedule for the fall, but we'll figure it out.

Thanks for being here--it's been a long wait, but I'm back--at least for today!

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.

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.

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".)

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!