Slim

 Hannah might be called slim (or Slim Cooley).   She's actually just a regular-sized young teenager. I've had many people ask me how I "keep" Hannah so slender.    
I don't.
She is the way she is.

To me, she's not all that slim compared to my other kids.  I'm used to kids who are on the 75th percentile for height and the 5th or 10th percentile for weight.  That works out to be tall and scrawny.  Too thin to fit into slim sized jeans without altering them.   That comes out to be 6'1" and 130 lbs.  Or a tall-size 1 or 3  in juniors.

So Hannah is just a regular, average weight kid. Her height and weight are at the same percentile: 75%.  She wears a girl's size 16.  She's taller than most of her typically developing peers, but she's taller than nearly everyone who has Down syndrome.  It is difficult to find clothes that fit her well, since she is long-waisted.  Her torso is quite long.  Bathing suits don't fit well.

Take a look at her with her cabin-mates from camp this summer:

 She's only 5'3", but she looks like a giant compared to the other girls (not to mention the counselors, who are flanking the girls)!  And she was the youngest in the cabin.

She is nearly finished with her height. She's only grown 1/4 inch in the past six months.  They say that a girl usually stops growing within 12-18 months of the onset of her menstrual cycle.

I can't take credit for her weight or her height. It's pure genetics. We don't eat the healthiest diet.  It might be healthier than most, but not by much.  Her favorite foods are carbs and proteins. She loves pasta and meat.  We used to call her a pastatarian, but she likes to say she's carnivorous. She will eat nearly any vegetable, but doesn't enjoy fruit very much. We use very few prepared foods, and do quite a bit of baking (bread, cookies, scones, muffins, etc). Her favorite lunch is either macaroni and cheese (sometimes homemade, sometimes doctored-up Kraft or Annie's), or it's a wrap with salami and cheese. Neither very healthy.

I know that vegetables can be tricky to get a kid to eat. When she was three or four we used the TalkTools idea of a "little plate" and a "big plate". We had portions of her meal that were cut into cubes that we would feed her on her back molars to get her to chew better. It was hard work for her, but she could see that the "big plate" had the rest of her dinner--food that she really liked and could eat any way she wanted to. We worked on chewing skills first, and then nutritional intake after. When she had mastered the chewing well enough to transfer it to her entire meal, we started using the "little plate" to introduce new foods or "less enthusiastic foods". She already knew that the "little plate" was non-negotiable. She had to clean that plate before she could get to the good stuff. That's how we started with salad. And broccoli. And fish (which is one of her favorites now!)

We stopped using the two-plate system a long time ago. Hannah will eat whatever is for dinner.  She has favorites, but she still will generally eat anything that comes her way. She doesn't like the stalks of broccoli.  She doesn't like spicy foods.

We have dinner out at least once a week, if not twice. We have a busy schedule, and I'm not one to plan ahead very much, so sometimes it's fast food (if it's lunch), or we're off to a real restaurant.Hannah enjoys Chinese, Thai, Vietnamese, Italian, Mexican, Japanese, and she loves a good cheeseburger. If we go somewhere that has a salad bar, she'll order that, but come back to the table with nothing green at all--it's all pasta salads, mushrooms, shredded cheese....

As far as energy output, we are not very active. We're a bunch of bookworms. If we do any kind of exercise, it's motivated by flab, weakness or embarrassment.

While Hannah's FAVORITE past time is watching DVDs, she also loves to be out and about. I'm all for her being out in the community and learning from someone else than ME. If you've been reading Shenanigans very much, you know how many outsourced activities she does .This fall she's signed up for:

Piano
Swimming
Soccer (2x/week)
Dance
Music/singing
Art class
Tai Chi (2x/week)
Horseback riding.

We did have to drop theater this year due to scheduling issues. I wonder why?

I can't say that I've had much to do with Hannah's weight and stature.I think it's just what she was born with.  She's had vitamin supplements for a decade, and she's had probiotics to help her digest.She has no GI issues with constipation or otherwise. But I know other kids who have been on the same TNI approach and they are heavier, rounder.

It's totally possible that Hannah could have more significant weight gain as she gets older (like, umm...me?).  Right now she's perfect.  And later, she'll still be perfect.

Devastated again

I'm sorry to have bad news to bear.  My friend Tracy, mother of three, passed away yesterday from an aneurysm leaving her beloved Troy, her two precious "olders" and little "Jack", with Down syndrome.   The blogging world knows her as the author of My Little Stinkerie.

I first met Tracy when she emailed me two years ago, soon after she received Jack's prenatal diagnosis. She had read my blog and had a ton of questions and worries.   We had a flurry of emails, but finally decided it was easier to talk on the phone than it was to write.  We talked at odd times of the day, with the three-hour time difference between East and West coast, laughing most of the time.  My daughter Kate and I worked up a whole series of ridiculous name choices for this yet-to-be-born baby.  Of course, she and Troy didn't choose any of our suggestions, but chose to name him after a hero--one of the kings of Sparta.  They both had a myriad of nicknames for this feisty little guy--from Snake to Snorkis to Stinkerie.  

When Jack made his appearance, all the worries and doubts about Down syndrome she carried disappeared.  All there was left was love. Tracy was totally smitten by Jack.  She ooh-ed and aah-ed over every inch of that baby.  And though he might not admit it, Troy was captivated as well.  

Tracy was a mother who loved, loved, loved her children.   She advocated for each one, for each one had their own special way of learning.  She loved her doggies, and her beloved Troy.

Please pray for Tracy's family and close friends.  

Movin' on out

No more dorm life!   Yesterday we officially moved Chris into his rental house down in Williamsburg. He's been staying there off and on this summer. Since he has a summer job now, we figured we'd better get the bulk of his stuff moved in.   I'm sure he'll appreciate having a real bed now!  No more old futon.

The Supervisor

His house is cute on the outside, and "college" on the inside!  

Three Men and a House.  One is vegan, one is vegetarian, and one is Chris.   I know they're going to have a great year!  

Nan Talk

Hannah and I were in the car.   I had a small burp.  I said, "Excuse me."

Hannah subsequently followed up with her own burp.  She said, "Excuse we."

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Long live Elvis!   We were at the Williamsburg Outlets the other day (visiting Chris).   Hannah was so excited to see an Elvis store!


Only problem was that it just looked like a "L-Elvis" store:

Research Study 4th Visit

Friday was our last visit to Kennedy Krieger.  We are always met by Miss M., the Research Study Assistant.  She's our guide and chaperone throughout the many-hour long visits.  She schedules our appointments and answers all questions, and waits with us through all sessions.

First stop was Neuropsychology.   Hannah was happy to see the psychologist again (she loves those tests, crazy girl).   She was in there about 75 minutes while I filled out the parent questionnaires--they always seem to have very obvious questions that are targeting the autism population.   When she came out, it was my turn to be interviewed by the psychologist. She is quite nice. She began the interview with me, recording answers as she proceeded.  She started laughing when she got to the question about whether Hannah could/would initiate a conversation with unfamiliar people (answer is: Yes).  Apparently, in the middle of one of Hannah's tests there was a picture of some kids in costumes trick-or-treating.  There was a witch, a clown, a cowboy and a few other costumes. Hannah answered whatever question was asked, but then started a conversation about how the Egyptians would remove the brain from a dead person's head in preparation for mummification. Sometimes Hannah's input to conversations seem total non-sequiturs. But they never are. The psychologist looked closer at the picture, and sure enough, there was a kid in a mummy costume!

All the testing went well. We had a quick lunch before heading over to the medical side of things (a short drive to another building). I was looking forward to hashing ideas out with Dr. Capone. We were in the waiting room for a bit until Miss M. caught up with us. I was surprised and disappointed when Miss M. mentioned that Dr. C was not there. He had a family emergency and had to go to Connecticut that morning. I was unhappy that she hadn't told me two hours earlier--she knew all along that he wasn't there.   Grumph.

I was able to have a conference call with Dr. C, but it wasn't the same as him being there.

So here's the low down: 

He has not received any reports of regression when ending a course of Rivastigmine.

He believes we could proceed safely with using Rivastigmine.

He did not really answer my question asking if he had any patients who have been on a long-term course of Rivastigmine.

Possible long term side effects would not involve neurology, but instead would  involve the same side effects they were watching for in the study:  nausea, vomiting, eventually ulcers would be possible. These side effects have been reduced substantially by slowly weaning in the dosage (similar to what we did in the research trial). Side effects to this point (in the body of research) have been relatively limited.

If we decide to proceed with the medication (the official medication--they cannot reveal that Hannah did or did not receive it), we can add in the ginkgo to her supplements. Ginkgo addresses the excess GABA in the brain, but Rivastigmine works on the acetylcholine channels, so there should be no interaction between the two.

His last comment was "There is no question that uncertainty comes with the territory."

So, that left me with still not having any way to make a decision.  James and I have to pray and ponder.  
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It's amazing how quickly the time has passed.  We started this drug trial in January, and now it's over.  We started with it to advance the body of research in the Down syndrome population.  Now we have to figure out if we want to make the decision to make this about benefiting (or, possibly, damaging) Hannah.  Switching from a global perspective to a personal one is going to take some time for me.  We have seen positive changes in Hannah's language and memory--larger gains than we have seen before.  Should we stop now? Should we see where it leads?  We want to provide Hannah with every opportunity to succeed.  Is this an opportunity?  Or a temptation?

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If you're new to this thread, I encourage you to start at the beginning.  If you have a child with Down syndrome, this research study may have implications for your child.  Begin here.

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?

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To follow up with this post, click here.
 

Elvis

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.

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