Hannah's Shenanigans

Overheard

2012-01-26T16:15:00.000-05:00

Hannah, in her room in the early morning, talking to her goldfish:

Good morning Sweeties! Would you like your breakfast? Look! It's your favorite! TetraFin Goldfish Flakes with Clear and Clean Water Formula!

Here it comes! Are you excited? Delicious. Look! There is a piece--it's swimming past you!

That's okay. You'll get it the next time.

Have a nice day!

Tummy Trouble

2012-01-22T13:39:00.001-05:00

Whooboy! We're glad that we're heading over to the other side of Hannah's gastroenteritis drama!

Friday afternoon Hannah had her first session of the Singing Hands (the signing/singing choir with SPARC--see post below). She. LOVED. It. She was totally enthralled--lots of friendly, diverse people, getting-to-know-you games, learning new music and signs. It seemed to be like a high-energy summer camp session. There weren't just 4 teachers--there were about 10 adults there--some musicians, some theater people, and some ASL interpreters. Parents were invited into the theater to see what the class did, and it was fun to see all the students (ages 10-18) show off their stuff! Hannah volunteered to sing the song they had learned, solo, while another student signed it (it was like an echo-song). Hannah was BEAMING. She definitely loves the stage.

She couldn't wait until Saturday's dance class. Alas, 3:00 in the morning found her listless amidst a messy carpet. Stomach Flu.

A big stomach flu. I will spare the details other than James did about 10 loads of laundry in 11 hours while Hannah and I lived in the bathroom, dozing on towels. By the middle of Saturday things had slowed down. She still couldn't keep a sip of water down, but the interval between episodes was getting longer. An hour later I tried a dropperful of water--she was SO THIRSTY. But when that triggered her, we decided to head to the ER for some fluids.

The hospital was terrific--they had her hooked up to the IV within a short time. Once she had some Zofran for nausea and two boluses of fluid she was almost perky. Or, at least, awake. We were out within 3 hours--a new record for us!

She's been holding down liquids, but hasn't asked for food yet. I expect she'll be asking soon enough--she's been well enough to play on the computer and is drawing while watching some TV, so she's definitely on the mend.

She did tell me that when she was at Singing Hands that everyone shared something about themselves. She told the group that she went to Disney World and got the stomach flu on the first day there and had to go to the hospital (for 3 days...). Guess that will teach her to brag about the stomach flu!

Stay healthy folks! There are some mean viruses out and about!

Mummies and Elvis. A match made in heaven.

2012-01-14T13:30:00.000-05:00

Yesterday we went into the city. We met with the director of a really cool arts program that seeks out children with disabilities. It's an inclusive program that offers several classes covering a variety of performance arts--dance, singing, instrumentation. It sounds really terrific--and, it's FREE! There will be four teachers in each class--two who are trained in the arts field (dance teachers, musicians, etc) and two who have experience with diverse experience with children with developmental disabilities. Half of the students will be typically developing. At the end of the semester there will be a BIG SHOW, featuring Jason Mraz and many other performers, who will be sharing the stage with the students. Hannah is VERY excited about this! She's signed up to join the Singing Hands choir (singing and signing) and the Modern Movement class. The dance class is her favorite (even though she hasn't started it yet). The modern dance performances will include computer sensors attached to the dancers that project color on the back wall of the theater during the dance. So cool!

And, there is a documentary crew that will be filming throughout the semester to make a film about how to make the arts accessible to children with disabilities. Below is the preview.

After our meeting with the director, we went to the Virginia Museum of Fine Art. It's our local art museum. We go fairly regularly, since it's free. In addition to their own extensive collections, they have traveling exhibits that require a fee--last year there was a terrific Picasso exhibit, which I saw with my friend Catherine (Lois's mom!). The current exhibits are Mummies from the British Museum, and a photography exhibit of young Elvis, when he just signed his first record label.

The Mummy exhibit started with a 3-D movie! We all liked that, but the rest of the exhibit was less interesting. I guess after going the museum in Cairo, Kate and I were not impressed.

Of course, Hannah was interested in the gift shop...

You KNOW that Hannah loved the Elvis exhibit!

Her souvenir choice was a pen in the shape of an electric guitar!

Hallmark Hall of Fame Movie-Special Needs

2012-01-07T22:00:00.000-05:00

I'm terrifically excited about this new TV movie on ABC--January 29th at 9 p.m. !!!

It's a story about a Special Education teacher who wanted to take his class to Space Camp. He knew that all the gifted classes could go, but none of the Special Ed classes could take such a field trip. It's based on a true story.

And guess what? One of Hannah's dear friends is in the movie! If you've followed us over the years, you'll recognize Abby Corrigan in the movie. Abby has a twin sister, Emma, who has Down syndrome. When the girls were preschoolers, their family produced the documentary film Emma's Gifts, which focused on how being different doesn't mean "less than". Abby has grown into a fabulous and dynamic performer, and this is her first TV movie.

A Smile as Big of the Moon has a few actors that have cognitive disabilities, and some who are acting as individuals with disabilities. Abby's character has bi-polar disorder and ADHD. And there is a young man who has Down syndrome in the movie, so keep your eyes open!

(To see more of Emma and Abby, look at these posts.)

Tidings of Joy!

2011-12-27T11:01:00.001-05:00

Merry Christmas!

Hoping you and your family has had a blessed Christmas! We've been having fun, with all of us together. There's nothing like having all three offspring boisterously singing in the back seat of the car on the way home from church!

One of our traditions is that the kids get to open a gift from another sibling on the 23rd and 24th. This lets them focus on their brother or sister instead of the exuberance of Christmas morning. This year Chris chose to give Hannah a Lego Fire Truck set. A perfect match. Chris is a mastermind Lego builder, having a good 15-16 years of Lego engineering. Hannah is slightly obsessed about becoming a Firefighter when she grows up.

Hannah has played with Legos, but mostly free-form buildings and space ships. There is a lot of fine motor skill required to build a set, and quite a bit of attention to follow the directions. Chris did an outstanding job of mentoring her through the construction--just enough help so that she didn't get frustrated, but supporting and encouraging her as she wandered through the pile of 200+ tiny pieces.

Victory!

I know that Hannah would not have tolerated my help if Chris wasn't there (it's that teenager-independent-from-mom-thing). Thank goodness for siblings!

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Kate has been busy documenting some NanTalk (since I seem never to write her silliness down these days). Here's a sampling:

Hannah discovers a cardboard cracker box in Kate's wastebasket as she's taking out the trash....

Hannah: "Kate? I found this, and you didn't finish it." Kate: "They're stale. That's why it's in the trash."
Hannah: "Dad! Look at this mistake of Kate's. She doesn't know how to recycle."
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(Antecedent information: Hannah is fixated on the Disney World Haunted Mansion--she's never been there, but she both loves and hates it.)
Kate, saying goodnight to Hannah at bedtime.
Hannah: "Kate? How do you think they made the Haunted Mansion?"
Kate: "Well, I think they use robots and lights to make those scary things."
Hannah: "Like a blood-curdling ghost?"
Kate: "Yes, but it's just pretend."
Hannah: "A pretend blood-curdling ghost?"
Kate: "Yes."
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A joke:
What is red, wet, and lives in a jar?
Pickle-me-Elmo!!!

Piano girl!

2011-12-16T21:30:00.000-05:00

Hannah had her Christmas piano recital this evening. She did a great job, but the lighting was so low the video didn't come out very well, so I'm sharing this morning's practice. Yes, she is wearing Ugg boots with her bathrobe (at least she's cozy!). It reminded me of when Kate was young. She'd go to harp rehearsals in short-shorts and cowboy boots!

Nan's playing a jazzed up version of Jolly Old Saint Nicholas!

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We're so proud of her hard work!

Hello USA!

2011-12-14T23:00:00.000-05:00

Kate's HOME! She's been home for more than a week, but we've been so busy we've hardly been around!

She landed in Richmond around 12:15 a.m. Exhausted, of course, after 27+ hours of traveling and no sleep. We forced a nap on Hannah earlier in the evening, so she was mostly functional for the airport.

(Yes, Hannah calls Kate "Tater". Don't tell anyone.)

The sisters!

Another grand welcome from Hazel!

So far so good! We took a quick jaunt to North and South Carolinas to see grandparents and friends who were eager to see Kate. This week has been kind of crazy since we're updating our kitchen and everything is askew. We finally got our Christmas tree--but it's not in the house yet...

Chris comes home next week, so we'll have a full house.

For a finale, here's a short Hannah-in-action video for your viewing pleasure! Slightly back in time, from farming and Thanksgiving.

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774 Days

2011-12-02T12:33:00.001-05:00

Hi everyone! This is Kate.

I'm finishing up here in Jordan and will be returning home on Monday after 774 challenging, exciting, happy, sad, Arabic-filled, lonely, fulfilling days in the Peace Corps. It's so hard to describe what this experience has meant to me--I know it's changed my life. And I know it wouldn't have happened were it not for my mom and Hannah.

After Hannah was born, as I was growing up, I knew I wanted to do something related to children with disabilities, especially Down syndrome. My junior year of college, I thought I might become a speech therapist, and visited graduate schools in that field. I also considered becoming a lawyer specializing in adoption--specifically of children with disabilities from other countries (a la Reece's Rainbow). That was also the year my mom suggested the Peace Corps. I knew from the moment I started the application that I would be accepted. I was invited to become a special education teacher in Jordan, a small country in the Middle East.


Me soon after arriving in Jordan

In the beginning, I lived in a small Bedouin village for training. We had intensive Arabic classes every day, coupled with technical (special education) trainings. We also had a practicum in the special education center in my host village.

After two months, I moved to my permanent site, in another small village. These people were farmers, not Bedouin, and my village was filled with greenery instead of desert.

The view from my house!

Above all, the thing I love and will miss most from my Peace Corps service are the people. My neighbors, my friends, and especially my students. I learned Jordanian sign language to communicate with my neighbors and students.

Qosai, A'atif, and Battoul, students at my center

My friend Natalie, Islam (a student), and myself at Jerash, a Roman archeological site

Ali and Fatima, students, on a picnic in a nearby village

My special education center consisted of 20-30 students from the ages of 5 to 21. My students were deaf and blind, and had Down syndrome, learning disabilities, autism, paraplegia, dwarfism, ADHD, congenital defects, psychological and behavior problems, and muscular dystrophy. My experience teaching at the center gave me experience with all types of disabilities, but the most important thing it taught me was that society is one of the largest factors in how much a person with a disability can achieve.

For instance, my student Mohammad Jamal is in a wheelchair. The story his mother told us was that she fell down while pregnant, harming baby Mohammad in utero, and that's why he is paralyzed. He is cognitively normal, but attends a special education center because the students at a typical school would be too cruel to him.

Mohammad Jamal

This type of pseudo-explanation is common in Jordan. Families don't want people knowing about their children with disabilities, or if people must know, they invent something that happened to the child, rather than accepting it as genetics or God's will. This is so that their other children can eventually get married--no one wants to marry a woman with "bad blood," despite the fact that most people in Jordan marry their cousins, just as their ancestors have for centuries. The whole culture supports the segregation of people with disabilities, not even attempting to "mainstream" them as we do in America. Add to that fact that the two jobs available to people who fail the end-of-high-school exams are the military or becoming a special education teacher, and you get a recipe for failure.

Children with disabilities in Jordan do not excel because they are not given the tools to do so. They are not accepted into society. They are not given proper teachers or care. Many are not allowed out of the house. They are marginalized in every way. We often see stories in the media about the oppression of women in Islamic societies; this is nothing compared to what people with disabilities face. The Jordanian government is, on paper, extremely progressive when it comes to people with disabilities. The problem is, there's no trickle-down effect. Decisions made at the top level by the Higher Council for the Affairs of People with Disabilities are rarely, or if they are, slowly, effected on the ground level, especially in villages.

I have a student with Down syndrome who is around five years old. For the first week he attended our center, no one bothered to find out his name. We called him welad, which means boy. His name turned out to be Isma'il (Ishmael), and he's one of my favorite kids.


Isma'il

See what I mean? Nothing is expected of people with disabilities in Jordan here--not even names. Living here for over two years has given me such an appreciation for America--how we give our children pride, expectations, and hope. I have always known my sister is exceptional. I never knew before how much our culture and our family has encouraged that.

Living in Jordan, I've gained ten pounds, learned Arabic, played 4,434 games of solitaire on my computer, and read over 200 books. I've also formed countless relationships with the people around me, and I hope that my influence has helped open their minds a little. I've tried to explain that people with disabilities can succeed, can speak, read, write, work, and marry. I know Hannah is capable of all those things and more. I wish the Jordanian culture and people were more accepting of people who are "different," and I know that in time someone will prove them wrong.

I set out to write this blog post as an overview of my Peace Corps service. Instead I seem to have gone on a rant about Jordanian culture. I don't mean to offend anyone or disparage anything--I'm all about cultural relativism. However, I think this topic is extremely important, and I hope that this will inspire people in America (and Jordan, if they read this) to encourage their daughters, sons, sisters, brothers, and friends with disabilities to achieve everything they are able to--which is certainly more than we expect of them.

Me, my girl, and my best friend Greer in January

Smile!

2011-11-21T22:30:00.000-05:00

Anybody remember this? She was keeping a secret...26 months ago.

She did it! 26 months, almost to the day! Can you believe how much she's grown in two years?

The braces are gone!

She is so excited!

She did so well through the entire process of orthodontia. Hannah was a trooper--from oral surgery to ulcers from the wires, she rarely complained. She was a terrific patient. I used to go back with her to for her adjustments, but about 8 months ago she told me to stay in the waiting room. She wanted to go independently. Today I had to ask her permission to go back with her to take a picture. She was reluctant to admit me, but Dr. B. convinced her that I should be able to come. Such a teenager.

We celebrated this evening with popcorn and a DVD. But she nixed the popcorn. After two years, she wasn't interested! Instead, she asked for a dill pickle! (At least she didn't put a pickle on that breakfast toast this morning....)

Creative Breakfast...

2011-11-21T10:20:00.001-05:00

I should be glad that Hannah is self-sufficient and independent.

But we might need to tweak the definition of "breakfast".

I know the dentist and orthodontist will be so proud.

By the Numbers

2011-10-15T17:00:00.000-04:00

What you knew:

1 Very Abandoned Blog

What you didn't know:

2 field trips to Washington D.C.

3 natural disasters within a three week span:
Earthquake: epicenter was 40 miles from our house. No damage.
Hurricane: Lost one tree, one window and everything in our fridge
(five days without power)
Tropical Storm: Drowned the garden and beat up the raspberries

7 airplanes (and 2 trains) to travel to and from California and New Mexico.

16 Museums/Aquariums/Zoos/National Parks

19 years since I saw my college roommate! I still love her. A lot.

58 days until KATE COMES HOME!!!! Her time is almost up, and she'll be home before Christmas! w00t!!!

100+ good times with my sweetheart, my boy, my girl, and my friends.

Slim

2011-08-17T10:30:00.001-04:00

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

2011-08-09T14:30:00.000-04:00

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

2011-07-17T12:30:00.000-04:00

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

2011-07-10T20:30:00.003-04:00

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

2011-07-05T09:00:00.007-04:00

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.
~~~~~~~~~~~~~~~~~~~~~~

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

2011-06-30T09:30:00.026-04:00

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

2011-06-29T21:30:00.002-04:00

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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Nan Talk

2011-06-18T21:00:00.000-04:00

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!

Odds and Ends

2011-06-14T21:00:00.009-04:00

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!

Re-defining Down Syndrome

2011-05-27T11:00:00.000-04:00

A week or two ago Sheena (Hannah's friend and dance instructor) asked permission to write a post about Hannah. Of course I was pleased; I was also curious.

I was almost expecting something about how Hannah was a "joy"--something a bit fluffy and superficial. I've had years of people telling me how sweet/happy/adorable she is. Everyone enjoys hearing nice things about their child; I am no different. But frequently I hear a twinge of condescension in their voices. stereotyping. The old, "Those Down syndrome people are SO happy." line is not only old, but also inaccurate.

Am I jaded?

Probably.

My teen-aged person with Down syndrome is concrete, irritable, enthusiastic, crabby, obstinate, feisty, effervescent, exasperating, lovable, temperamental, funny, true, annoying, imaginative, entertaining, and 100% lovable.
Pretty much the same as everyone else with 46 chromosomes.

I know Sheena "gets" Hannah. I knew she'd have something valuable to share about her friendship/mentor-ship with Hannah. I wasn't really worried about Sheena writing platitudes of sweetness, milk and honey.

My baggage of preconceived ideas of how people see Hannah shouldn't come into play. Really, I'm just doing the same thing that they do. If the worst pet peeve I've got regarding Down syndrome is society's inaccurate image of "happy people", then I ought to just be quiet about it. It's just a slight annoyance, not a horrific problem.

(BTW, I think the worst thing society does is have low expectations.)

Anyway, back to Sheena. She wrote her blog post. And it's interesting and amazing.

I cannot thank her enough for just thrusting Hannah into her dance class. It seems to me that she orchestrated the best possible classroom environment possible--a variety of open-minded peers, incremental teaching, patience, high expectations, encouraging instruction. And, I assumed, some sort of modified choreography. But I learned from Sheena's blog that she didn't change a thing for Hannah.

Sheena's post isn't so much about what she has done for Hannah. In fact, it's about what Hannah has done for Sheena. That was what surprised me.

It reminds me of when Hannah was a baby, how I discovered that Hannah is a great teacher. She led the way through all the murky medical and emotional waters we navigated. I've sort of forgotten how much she's taught me, after all, I do fancy myself a teacher.

Make a visit to Sheena's blog. See what she's got to say about Down syndrome defining someone's capabilities.

Dance when you think nobody is lookin'

2011-05-22T15:00:00.022-04:00

Today is the recital. Twice. Hannah was very excited yesterday, even after a VERY long rehearsal (waiting for 2.5 hours to dance for 2 minutes). She had never been on a stage this large before, and she only had one chance to try it out! So today's task is to hang out at the Landmark Theater from noon to 8:00 p.m. and still be smiling.

Tomorrow we leave for our annual trip to the beach!! Two weeks (almost)!! We had to shave off a couple days so Hannah could perform. It was totally worth it, as you could see from yesterday's bit of joy-induced improvisation.

But by tomorrow morning all the dancing dreams will be replaced by visions of SPF, sand, salt and sun...

Oh yeah. And sharks.

Piano practice

2011-05-15T20:30:00.000-04:00

Hannah is busy preparing for all kinds of recitals in the next few weeks. It's choir on Monday and Tuesday, then dance all weekend. We head off to the beach next Monday, and don't return until June 4th. Soon after we're home it's piano recital time!

Tonight she called James into the music room for a "concert". She's working on memorizing her piano pieces.

She played through "Singing in the Rain", and then was ready to move on to "Caribbean Holiday". She told him, "Sit back and enjoy the ride. This song is like sippin' some lemonade!"

Dancer

2011-05-07T22:00:00.006-04:00

It's two weeks until Hannah's dance recital. This is her first dance recital, on a huge stage, with bright lights, and she is totally excited about it!

This was Hannah's first year in a regular dance class. She was the only "new" student in the class, so she had a lot of catching up to do. She's learned so much from her teacher, Sheena, and from her friends in the class! I could not have envisioned a better environment for her! I was expecting some frustration or annoyance from her classmates--I mean, really, most of them are middle schoolers, with a few high schoolers in the mix as well. But there hasn't been a single issue with any of them. They have been so very patient with Hannah.

Aren't they all beautiful?

Last week it was Picture Day at the dance studio. I was rather dreading it. I was imaging it to be a bit like one of those pageant TV shows. We had instructions for hair and makeup. Hair? She can't stand to have her hair pulled tight, but we did manage to get in a bun without too much drama. Makeup? On a 13 year old? A 13 year old who isn't interested in makeup? She was much more interested with her swirly dress!

We'll see how the pictures come out. When Hannah is told to smile, she usually ends up with a grimace. We usually have to make her laugh to get a real smile out of her, and then her mouth is usually open.

The girls got the chance to rehearse in their costumes. This is good because they all get distracted with how fabulous they look in the mirrors and how different it is to dance in a skirt than a leotard.

Hannah knows all her steps, but her timing is just a smidgen behind the rest of the dancers. She tries her best, and that's just fine.

Hannah is the farthest dancer in blue at the beginning of this video clip.

Make photo slide shows at www.OneTrueMedia.com

She's so happy when she's dancing!

Side Effects/New Dosing

2011-04-25T09:00:00.005-04:00

Since Hannah had one adverse reaction on Saturday (upset stomach/vomitting), Dr. Capone changed her dosage of the "placebo/Rivastigmine". We will incrementally increase the morning dosage by 0.1ml every 2-3 days. The evening dose will remain at 0.75ml. The idea behind increasing her morning dosage is that we will be able to monitor side effects better than in the evening. We wouldn't necessarily know if she slept through a grumbly tummy!

Hannah seems not to care about her discomfort on Saturday--she hasn't mentioned it at all. Clearly she felt well enough to eat all of her chocolate bunny and other non-nutritious treats yesterday!

Church on Sunday

Out for lunch after church--making a hat out of her napkin and pretending to be a sailor

To follow more posts about the research study you can click here.

Is it, or isn't it? Clinical Trial: Rivastigmine

2011-04-23T18:00:00.041-04:00

Today was the beginning of the larger dose of "placebo". The dosing had been 0.75 ml twice a day. Today the morning dose was 1.5 ml, and the evening dose is the regular 0.75 ml. We're basically increasing her dose by 50%

At 9 a.m. Hannah had her dosage, and for breakfast had a little fruit salad, vitamins (with applesauce) and some milk. She was working on "a big art project", so I left her to her own devices to eat, drink and create.

A couple hours later she came to me and said she didn't feel well. I was surprised to find that she had only eaten a few bites of fruit and barely touched her milk. We cuddled up on my bed and chatted a bit. It was a chilly morning, so cozying up under a blanket was a sweet way to comfort her and sneak some lovin' on my big teen-aged girl.

After a bit she asked for some soup. So I fixed some for her. She came to the kitchen to eat, but just stood there a minute, made a little gagging sound and said, "I'm going to throw up." and scurried to the sink. Success. But no fussing at all.

We opted to watch some home movies instead of eating. (Oh my goodness, she was so cute and little in those movies!!). Hannah was giggling a bit at the movies, and eventually wanted to try the soup. She had a few spoonfuls and decided that was enough. I suggested a bath. She took a long one and really perked up.

She was hungry afterwards, so she had soup and some hard-boiled eggs. Back on track 100%. So much so that she was bouncing out the door with James to go see the local professional soccer game this evening.

So, since Hannah has not thrown up in three years (almost to the day, thank you Disney Worl d), and she hasn't been around anyone with a stomach bug, nor am I familiar with any stomach flu that lasts just 5 hours, I am left with the idea that we, Ladies and Gentlemen, have a Side Effect.

This leads us to the high likelihood that she's on Rivastigmine, and not a placebo.

Another side effect of Rivastigmine, is increased language and memory ability. We have been noticing these side effects over the past couple of months, but as I said before, the changes are nuanced. According to Kate, who only sees and hears Hannah from a distance, she's been convinced for months.

The first thing I noticed was that when we were doing Hannah's Language Arts school work. I read a passage of children's literature out loud (working on auditory processing and memory). She listens and then later verbally answers questions about the passage in complete sentences. She never, ever got all the answers correct. I always had to repeat sections of the passage to help her answer the question. Some times I'd have to repeat the sentences four or five times before she'd remember what happened to which character. It was really frustrating for both of us.

We hadn't done that particular part of her homeschooling in about a month. (Have I told you how relaxed I am about homeschooling? Maybe that's just "lax".) So when she had been on the "placebo" for about a month we got back into the swing of things. I couldn't believe it. She answered every single question correctly on the first reading! And the same thing the next day. And subsequent days. She missed a couple here and there, but it wasn't as if I had to repeat and repeat sections of the story.

Here's another scenario: Today, I mentioned that Hannah's friend Sarah was coming over to play with her on Wednesday (AKA babysit). I was going to the Picasso exhibit at our local art museum with Catherine (Lois's mom, who, by the way, is forging her way down a long road of grief in a very honorable fashion).

To set the stage further I cannot recall ever mentioning the words "Middle School" nor "Clover Hill". She has seen signs that say these words in front of various schools, but we have never discussed what grades were in which kind of school, nor has she ever entered one of these schools. Also, please remember that Hannah is a lousy speller, and I don't know that she's ever seen Catherine's name written anywhere.

Hannah: Oh, I have a friend named Catherine, but she spells it with a "K".

Me, surprised: How do you know her?

Hannah: She was in my class.

Me, thinking: Her dance class? Art class? Theater class? Wonder where this Katherine is and why haven't I heard of her before?
Me: What class?

Hannah: My Middle School Class.

Me: Which Middle School Class?

Hannah: The one at Clover Hill School.

Me: I didn't know you went to Clover Hill School

Hannah: Oh yeah, that was when I was with my other mother. Her name was Daphne.

Me: I see.

I didn't see anything except my girl coming up with ideas, memories and imagination, and a spark of something new. (BTW, we do have a Clover Hill High School in town.) Where did she come up with the Catherine with a "K" idea? How did she know my Catherine, or even that some Catherines use a "C"? She has no friends named C/Katherine. Where did this idea of another mother come from? She has several friends who are adopted, but we haven't ever said much about the birth mothers other than they weren't able to raise the baby. What is her brain up to?

It's very interesting.

Let me assure you as well, she is still 100% Hannah, complete with adolescent mood swings strategically aimed towards me. Bring it on, girl.

(Self-portrait)

Now we await Dr. Capone's return phone call to see what to do next. The options include upping her dosage more gradually, and/or giving the larger dose at bed time.

To read the next post in this series, please click here.

To read previous posts about the research study, you can begin with my post Baltimore and Research Studies, and then follow the link at the end of each post to get to the next in the sequence.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Post Script: I completely forgot to mention that several of Hannah's teachers have commented on Hannah's concentration and abilities since January. Piano and swimming teachers both have noticed changes in Hannah (they've known her for 2-3 years). Sheena (dance instructor) posted this comment: "And, if I could just add, her DANCE knowledge, technique and performance skills have SKY ROCKETED this year!! I am so STINKING proud of her!!" Thanks Sheena!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Research Study: 3rd Visit

2011-04-19T09:00:00.011-04:00

We made another trip up to Baltimore last week. We knew the visit was going to be short, since this was the "safety visit". There was no testing (other than the pregnancy test--still so weird!), just checking on vitals and reviewing the side effects (she hasn't had any).

The only thing that I wasn't expecting, or didn't understand from the initial visits, is that next week she will increase her dosage again. Currently she's taking 0.7 ml of Placebo/Rivastigmine twice a day. The new dosage will be 1.4 ml in the morning, and 0.7 in the evening. They want the bigger dosage in the morning so that they can better monitor side effects. Of course, I immediately think that night time would be better because she'd sleep through any side effects (maybe).

The main side effect that they are trying to avoid is nausea and gastrointestinal distress. Increasing the dosage incrementally seems to lessen the severity of the nausea (so the original study discovered). We'll see. I'm still assuming she is on the placebo.

That said, Hannah has been making progress in her school work, and her sentence structure has been a bit more mature and complex than in the fall. Of course, she's also a young teenager, so I couldn't tell you if it's just a natural growth pattern or if it's a result of the medication. If she is on the real medication, the changes I see are very nuanced--she's still totally regular Hannah--no big bells and whistles announcing any changes. I can't tease out any specifics at this point.

Maybe things will be more obvious after she's been on the doubled dose. I'm still really excited to help move this research along! And while we were there, I managed to get Dr. Capone to agree to come to Richmond in the fall to speak about current research trends in the Down Syndrome Population!

(if you've missed the previous posts about this research study, you can start here)
(if you want to read more about Hannah's experience in this research study, you can follow along here)

Ruby's Mom!!!

2011-04-18T20:00:00.004-04:00

Hannah and I have been traveling for the past week, having a great time visiting D.C., Baltimore, Philadelphia, Easton, PA, Princeton, NJ, and D.C. again. I'll cover the pertinent points later (3rd Research Study Visit at Kennedy Krieger--no big news there).

The big excitement came when we arrived home to an unexpected box, addressed to Hannah. From Texas, with no return address other than the post office address.

Curious.

She opened it up and found these:

I finally remembered that Cheryl from Ruby's Life had contacted me to on FB a while ago! She wanted to make an afghan for Hannah; what color should she make it? How sweet is that?

Not only did she make Hannah's beautiful afghan, she also made two smaller ones.

Hannah wrapped her American Girl dolls burrito style, and then I wrapped her up too!

Thanks Cheryl! You made my girl so happy! What a generous commitment of time from a homeschooling mom of nine children! So sweet. This blogworld is full of surprises!

What's Going On?

2011-04-06T09:40:00.001-04:00

Hormones hormones hormones.

At least, I hope that's what it is.

This girl is SO moody. A few weeks ago, she was in her music lesson. It's 30 minutes long. She loves Miss Heidi. She always goes in happy, and comes out happy. But on that day, she went in happy, and 10 minutes later she came out in tears.

Through her tears she said she wanted to go to Great Wolf Lodge. Miss Heidi was surprised.

I was confused. We went to Great Wolf Lodge months earlier. Hannah liked it, but never really mentioned it again. And now, suddenly, she was terribly sad that we couldn't go there right then and there. Bawling. Sniffling.

I comforted her first. Got a tissue second. Cleaned her up. Deep breath. Big smile. Go back to the lesson with her wet eyelashes sparkling.

Five minutes later, she was escorted out, again in tears.

This time I gave her the riot act. She was creating this drama for no reason. Totally random.

I'm a pretty no-nonsense parent. I told her that she was acting inappropriately. That she needed to cut it out. She had to apologize to Miss Heidi for wasting her time, and apologize to me for wasting my time and money.
Which, she begrudgingly did. Her lesson time was over.

And a silent drive home--her choice; I had said everything I needed to.

While I was enjoying the silence of the evening, I looked up into the night sky and saw an almost-full moon. It was just a couple days before the SuperMoon.

And I sighed.

SuperMoon. Super PMS. That's what it was. Argh!

At least I knew the reason for the breakdown.

~~~~~~~~~~~~~~~~~~~~~~~~~
Besides hormones, something else is going on.

It's regular growing-up teenaged tension.

Last week Hannah spent some time at a friend's house while I was out. By all reports she had a wonderful time. She was funny, polite and enjoyable company. A trip to the dollar store to get materials for April Fool's jokes. All was well. Until I arrived to pick her up. Then she became snippy and grumpy. Ahh, the power of the parent. My mere presence is enough to set off a reaction.

It wasn't because her play date was over. It was because I am her mother and I have the audacity to breathe. This I know because I've lived through it before. She is my third child after all. I probably even felt that way myself as an adolescent.

It really is quite entertaining. Annoying too.

My friend who witnessed Hannah's behavior is thrilled. She LOVES the fact that Hannah is so typically a teenager. She is giddy over the idea!

And I am too!

Except when I'm right in the middle of it.

Hannah has the eye-rolling technique down to a science. The only part she hasn't figured out is that she should use that technique sparingly and with discretion.

Stepping back from the immediate drama, I can appreciate Hannah's position. I am thrilled that she's growing up and stirring things up. It's a sign of independence.

Just writing that sentence brought me back to something I said years ago. I only recalled it because someone quoted me in an article when Hannah was seven.

“We can’t wait for her to be a teenager, and cause some trouble,” says Beth L., laughing. “That will be a sign that ‘Okay, we’re on track’.”

I guess we've arrived. I need to keep laughing.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

And on the topic of independence, Hannah is calling the shots these days. Literally.

After trying to get chicken pox four times--unsuccessfully-- Hannah had a titer drawn to see if maybe somehow I had missed noticing a mild case of pox. It was negative. So it was time for Hannah to get the varicella shot.

(I am not a fan of vaccines, especially 'optional' ones. But since Kate was hospitalized for encephalitis from chicken pox with 107 degree fever at age 5, I have been watching Hannah closely. I'd rather she have natural immunity, but I also know how difficult chicken pox is for adolescents and adults.)

So we stopped by the doctor's office on Monday. In the waiting room, the nurse called Hannah's name. Hannah stood up and said, "It's okay, Mom. I'll do it myself."

And off she went.

She came back in about 90 seconds, smiling, with the nurse saying, "She's a pro!"

That's my girl. Growing up in many ways. Brave, temperamental, feisty, and goofy.

Book for First Time Moms

2011-04-03T10:00:00.011-04:00

This is my sister's first book!

Regular readers might remember my post last May, when I put out the APB for Christian writers. It turns out that Christy Sturm, an occasional Shenanigans reader and mother of a son with Down syndrome, is a contributor! She has 10 devotionals sprinkled throughout the book. I read them first, always looking for the sisterhood of mothering a child with a disability. Her entries brought me right back to when Hannah was born. It's amazing how we all can relate to those early fears and worries, and later, our discovery of the delightful secrets of the extra chromosome.

The other contributors come from diverse backgrounds ranging from a single mother, and adoptive mother, working and stay-at-home moms. Each day, a compassionate message to hearten a fatigued mother--really applicable to any mother.

This book would be a wonderful gift to a new or expecting mother. Daily encouragement, scripture and prayer, one short devotion a day--just enough for a busy mom to read in a minute or two.

I just checked Amazon, and they just re-stocked ($13.31--buy two and get free shipping!). Or, for you Kindle fans, it's always available ($7.99): Your First Year of Motherhood

Another creative meal...

2011-03-28T21:30:00.002-04:00

This isn't exactly a Cookin' with Nan episode.

Buttered toast with sprinkles and mini-marshmallows.

I wonder where this breakfast falls in the nutrition pyramid...

At least she's self-sufficient.

I can't believe my eyes!

2011-03-17T23:00:00.001-04:00

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

      B
   i
   t
   t
   e
   r

      E
   N
   D.

She's so funny!

Newly Minted: Teenager

2011-03-13T22:00:00.006-04:00

Hannah is 13!!!!

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!

Happy Birthday Beautiful Hannah!

Serious Adventuring

2011-03-10T21:00:00.002-05:00

Following up on the occasional thread of ridiculous pictures of my daughter, I offer these:

I think she might be channeling her inner Grandpa.

DNA Noodle

2011-03-09T12:00:00.000-05:00

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?

Miscellany

2011-03-05T10:00:00.018-05:00

Time to catch up and fill in!

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)

Faster than a speeding bullet...

2011-03-05T07:30:00.000-05:00

Valentine's Love

2011-02-14T00:01:00.002-05:00

On her way to a Valentine Bunco Party with FunQuest!

(best Hannah quote of the evening, as reported from Parent-In-Charge, "It's a good thing I don't mind losing!"

Two dozen for me, one dozen for Hannah

Valentine frites!

Hope your day is full of fun and love.

Dear Lois,

2011-02-12T13:00:00.000-05:00

Today is your celebration! Your Mom and Dad have planned a wonderful day to celebrate your life--bubbles, flowers, children, good food. The Botanical Gardens have never seen such a sight! I am excited to meet so many of your friends and supporters. I wrote you this letter this morning. I tried for days to write to you, but I just stumbled around. But this morning, I finally could tell you much of what I've been thinking.

Dear Lois,

I don’t quite remember when I first met you. I know that I first discovered your wide grin and advanced mischief skills through your mother’s blog. When I found out you lived nearby I was thrilled to meet you and your family.

While you might not remember me, I will always remember you. You and I didn’t spend much time together; maybe a game of patty-cake at a Down syndrome meeting, or a quick tickle when I stopped by your house. If I had a camera, you’d instantly put on your charm.

I got to know you mostly through the stories that my daughter, Miss Kate, would tell me. Boy, does she love you! She’d come home from caring for you and just beam. I can’t count the times she’d say, “Love that girl.” You’re one of the reasons she is planning on adopting children with Down syndrome.

Soon after Miss Kate left to work in the Peace Corps, you got sick. I eventually got my turn to help care for you. That’s when you worked your most powerful magic. How in the world were you, at age two, able to become a community organizer? I saw how you brought people in to you—from the housekeeping staff, to the powerful doctors, young children, college kids, to grandparents—all were drawn in to your circle of joy. You’d give a grin and bold wave on good days, and on bad days you’d give a sideways glance and the best wave you could manage.

Lois, you showed everyone how to be honorable and dignified. You stayed true to your mission of bringing love and joy to the people around you. The other day a friend of mine said she wished she could have met you. My instant response was that you’d have enchanted her. I think you are enchanting people still, pulling them in and teaching them how to be loyal and true.

Lois, I have been trying to figure out what impact you’ve had on my life. If I’m honest, I have to say that I don’t yet know. I think that it’s too early to say. You’re still making differences in my life and in others. I see how you’ve influenced generations in my family—from my parents to my own children. I imagine that my grandchildren will hear stories about you, and you will be still impacting lives.

You pulled my friends in closer to me. Introduced new people into my life. Gave me the opportunity to bake a whole bunch of peach cobblers, both celebratory and mournful. In your honor I think I’m going to have to change the name to “Bean Cobbler”, though I have to say, people might be a little afraid of a bean cobbler.

You did a terrific job, Lois! Well done.

Love, your friend,

Beth

Research Study: 2nd Visit

2011-02-11T23:00:00.016-05:00

We begin tomorrow morning!

We spent the day at Kennedy Krieger in Baltimore; Hannah taking cognitive and memory tests, while I filled out paperwork and parent surveys. One would think that a few hours of that would put Hannah to sleep. But she came out bouncy and cheerful.

We had a late lunch and then met with Dr. Capone and his research assistant. There was one more questionnaire, and a little review of the study requirements (keeping track of dosing and any side effects or illnesses). I thought they were going to administer the first dose while we were there. The original study paperwork said that Hannah would get the first dose and then she'd be monitored for 4 hours. I was expecting to spend another night in Baltimore! Apparently, some subjects get a bit nauseous as they adjust to the medication (or placebo...). But they lowered the initial dosing level, which has reduced the nausea. So we start tomorrow morning.

The first 2 weeks are a very small dose-- 0.38 ml twice a day--then it's doubled for the following 18 weeks. We should be done with the study on July 1st.

Today's visit was a little dull. I think I was expecting a little more fanfare or excitement, but they just handed over the bottle and medicine syringes and that was that.

The only really interesting part was when Hannah surprised Dr. Capone with her new facial hair.

(I think she looks like Rich Uncle Pennybags from Monopoly)

I think this picture is also the debut of her new "teen-like" glasses! She's been updating--hair styles, glasses, shoes/boots. I can usually influence her choices in clothing if I offer things like, "Would you like to wear this gray t-shirt, or the stylish green one?" She always goes for the "stylish" choice. Of course, it would be helpful if I could actually be sure I was leading her in the right direction...
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To read more about the research study, go here

The Moral of the Story is....

2011-02-05T15:30:00.021-05:00

Today was Hannah's first day of Special Olympics swimming this year. She participated last year, and was excited to do it again. She's been taking private lessons all year, and she was proud to show off her new butterfly stroke to the SO coaches.

We discovered last year that SO swimming in our town is basically supervised swimming--there is little coaching in terms of stroke development. The athletes are told what stroke and how many laps to do it. They do make the athletes swim for most of the hour, so Hannah is pretty worn out by the end of the session.

I got her settled in today, and then ran to the store across the street to get the last items Kate wanted to bring back to Jordan (tomorrow! *sniff sniff*). I came back to the pool about 10 minutes before Hannah was done. I got to see her backstroke (not her favorite), and got to see her crash into another person who also was doing the backstroke in the opposite direction in the same lane. There were about 5or 6 swimmers in that lane. Seems crazy to me--there were other lanes available.

When practice was over, we met on the bleacher seats. She grumbled about the crowded lane. She's pretty spoiled at her lessons where she has the entire pool to herself (different pool). So we talked a bit about that. She was rather surly.

As she was drying herself to put on her sweats, she was complaining and arguing with anything I said. I had already mirrored her feelings back to her ("I saw you bump into that girl. I bet that was frustrating."). She was grumbling about everything, and getting mad at me for just breathing (don't you love adolescence?).

Then the head coach called everyone's attention ( a good 45 people or so). She went through a few items of note, and then said, "Oh, and Hannah, you can't do the butterfly. (hesitation) It's not that you can't do it, but you can't do it for Special Olympics because of your neck."

Hannah doesn't know anything about her neck. That's because I haven't told her that she has borderline AAI. I'm counting on her "outgrowing" it. She didn't have it when was was little, but when she was 10 she was in the borderline range. And the pediatrician said we'd re-test her after she's done growing (almost done! 5'3" now). I totally forgot that SO was so stringent about AAI. My bad. All this time learning butterfly, and now she can't race it. Ugh. Hannah asked what did Coach say about her butterfly? So I had to give her a short explanation, and she was satisfied enough. She went back to her previous grumble.

I told her I'd wait for her near the pool. It's sometimes better to put myself in time-out. She got her stuff together and came down to meet me, all the while mumbling under her breath.

I don't remember what she said, but it was something impolite. So I told her that I wished that she'd just say how she felt, rather than just being mean and rude to me. "You can say that you're frustrated or mad, but you shouldn't just say mean things to me when I haven't done anything." Silence.

So we got in the car. It's a 30 minute drive home. We had 20 minutes of silence (fine by me!).

Finally she said, "I'm sorry I said that thing to you."

Me: "What thing?"

I was thinking that she didn't really understand why I was unhappy, so I was curious about what she thought she had done wrong.

Hannah: "When we get home I'm going to write a story about being rude. And the moral of the story is that you have to say you're sorry to your mom."

This totally made smirk, but I had to hide it. I never heard her say "the moral of the story" before--we don't talk about that at all! I think she picked it up from a fable here or there. It was really cute.

I don't think that she really knew what happened. She was just giving me a blanket apology to make things better. (and it worked)

Anyhow. She's in the tub soaking the chlorine out of her system, and then has plans to finish off the cheese doodles. I don't think the story will be written, but at least it's the thought that counts.

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Kate is off to Williamsburg for the day/evening. Tomorrow afternoon we deliver her to the airport. She'll finish her time of service and be home near the end of the year. She's sorry she's not able to attend the Celebration of Lois' Life, which is next Saturday, but she is so happy she got to see Lois earlier this week.

We have great sadness about Lois' death, and meander through our feelings up and down at random times during the day. I can only imagine how Catherine and Jay are navigating through this. Impossible.

Sweet Lois 2-3-11

2011-02-03T10:09:00.000-05:00

Blogging world, I am so sorry to share the agonizing news about Lois.

Lois passed away this morning, surrounded by her parents' love. She fought a tremendous battle with leukemia.

A friend of ours said, "I'm at a loss for words, but not for tears."

Please visit Catherine's blog and leave her a message.

Despicable Bears

2011-02-01T13:30:00.000-05:00

Hannah and Kate were talking downstairs. Hannah was trying to say, "Despicable Me", but she got syllables tangled up.

Finally she said, "Spicable Me".

Kate: Spicable you? (teasing)

Hannah: Yeah, you know, like the bears.

Kate: Spicable bears???

Hannah: Like on Diego. Spicable bears.

Kate---> totally confused

Hannah: (with disdain at her sister's ignorance) You know Kate, those bears, they look like they have glasses on their face--Spicable bears!

Kate: Oh! Spectacled Bears! SPEC-TA-CLED.

That girl cracks us up.

Busy Bees

2011-01-30T19:30:00.010-05:00

We've been so crazy busy here with Kate's visit! It's all been fun, and we've got one week left before she heads back to Jordan.

It only took a good night's sleep before Kate was back on the harp. We were all excited when everything came back to her (minus callouses on her fingers).

Make an on-line slideshow at www.OneTrueMedia.com

Last weekend we went to South Carolina to visit my parents. Kate brought them some gifts from Jordan:

We also squeezed in a bowling party while we were there:

Photo and video editing at www.OneTrueMedia.com

While Kate re-learns to drive, I take over ancillary duties with my Thighs of Technology!

Later, when we're back home, Hannah ate her peanut butter toast into a shape of a terrier. (Another post needed to explain Hannah's new savant dog breed talent)

Playing dolls in a makeshift Bedouin tent...

Those-Are-Tasty Letter Pretzels (even Arabic letters too!)

Kate's good friend for 20+ years (yes, she is just 22) came to visit this weekend.

We had big Welcome Home party last night, with friends from Ohio, Maryland and points South--including Chris back home from school for the weekend!

An impromptu sing-along during the evening....

So I got to get my three kids together for the first time in 15 months!

And yes, they are all still goofballs!

But I love love love them anyway...

Nan Talk

2011-01-25T00:30:00.003-05:00

Hannah: SQUAWKsnap.....I'm making all those animal sounds.

Me: Like what? What kind of animals?

Hannah: The Scarlet MaCrocodile (The Scarlet Macaw is one of her favorite birds.)

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Hannah: I'm a terrific ballerina. I can make all these beautiful moves. My new name is Han-gelina Ballerina!

Welcome home Kate!

2011-01-20T07:30:00.001-05:00

Hazel was the most excited we've ever seen!

Sisters together again! (One has cookie crumbs on her face...)

Bread! Cheese! Sandwich! Big refrigerator! So many things she missed from home!

One day of rest, and then we're off to Charlotte to visit Grandparents for the weekend.

Baltimore and Research Studies

2011-01-16T10:30:00.016-05:00

Our trip to Baltimore was short but sweet and effective. We drove up on Thursday and spent some time at the Inner Harbor.

Hannah imitating a shark

We all enjoyed the National Aquarium. Hannah was particularly interested in the zebra shark (which actually was spotted--it's born striped, then loses some of the pigment as it gets older). Chris and I were fascinated with the chambered nautilus--neither of us had ever seen one before. Very interesting animal, related to the octopus.

(about 5 inches in diameter)

We ate at the Hard Rock Cafe, and Hannah was thrilled with the Elvis memorabilia they had (she recently developed a crush on him--she gets all giggly when she talks about him).

Friday we were up and checked out early to get to our appointment at Kennedy Krieger. It's an interesting place. I didn't know they had a school for kids with disabilities.

First on the agenda was Hannah's language screening at the Neuropsychology Department. A psychologist assessed her language skills. It was just an expressive one-word picture vocabulary test. They need to know that the subject (Hannah) would be able to participate in the more extensive language and memory testing during the study. After that, we went to meet Dr Capone. Hannah's first words to him were, "What's up, Doc?".

Dr Capone went over some points of the study and gave Hannah a general physical. He is a good guy--not too overly academic with us (though it wouldn't have bothered me...), but clearly knows his stuff.

After that we went through the maze of urban hospital hallways to get bloodwork and an EKG. Hannah has been totally brainwashed by me to be interested in the blood draw process. She smiled through the whole procedure, telling her Jessie doll all the pertinent points--alcohol wipe, tourniquet, butterfly needle ("Oh, that's my favorite kind of needle, Jessie!"), remembering to ask for paper tape (Hannah detests having band-aids removed), counting how many vials of blood they needed (four), and how to hold the gauze after the draw was complete.

She was apprehensive of the EKG. She doesn't like adhesive things (band-aids, electrode stickers, etc). She was quite worried, so I comforted her a bit, and then went to no-nonsense mode. Hannah was only afraid of the removal of the stickers. I told Hannah that we'd use some of those adhesive removal wipes to help them come off easily, like we used at her latest sleep study. Then the tech said they didn't have any of those. Not good. Yes good: a new kind of sticky! They came right off with Hannah hardly noticing!

We finished the intake in record time--they estimated 4-6 hours, but we were done in 3.5! Zippy! We headed for home, avoiding the Washington DC rush hour traffic (three-day weekend traffic? No thanks!).

Here's the chart of what happens when. We'll be heading back in early February for our Baseline visit.

A few things that were of note:

1. The Rivastigmine (rivah-stig-meen) Study is also being conducted by Duke University. Apparently Duke didn't have it's funding lined up as well as Kennedy Krieger (KK), so they have not even begun to recruit subjects. Dr C. thought Duke was getting more focused on this study, so hopefully they would be up and running in the next several months.

This study began in late 2009. Four subjects have completed the study. Another is in progress. Hannah is officially the 6th subject. WHAT?? Don't you think that's crazy? This is ridiculous! This is extremely relevant research, with big implications. What's up with the Down syndrome community? What's up with the advertising on the part of the hospitals that are running the study? Why did it take over a year for me to even hear an inkling of this study? I'm pretty active in keeping up with what is going on scientifically, but I never heard of this study until I saw an email posting last month from the DSANV (Northern Virginia Ds group). There is a posting on the NDSS research webpage, but it's rather cryptic and only lists Duke, with a phone number. KK has the study listed under Dr. Capone's bio. It could be advertised much more efficiently.

If we, as a community, want progress, we need to participate to make that progress. I encourage you parents to do your homework. Please participate in research. The scientists need subjects. Hardly any of the research studies involve any invasive medications or supplements. The majority are about language skills, family resiliency, social communication, etc. Most of them are surveys. Go to the NDSS Current Studies page and see how which ones you can do--it's easy--just an online questionnaire in most cases. There might be a study near where you live!

Hannah has participated in at least 8 studies that I can remember. She is in an ongoing communication study from Chapel Hill (North Carolina). The researchers come to our house annually to test Hannah's language skills. She has been in other language studies from Old Dominion University (how reading skills affect language ability), and Hampton University (VA) for graduate student practicals. She's been in nutritional studies looking at one or more vitamin/supplement absorption. I'm not being a show-off--I'm just saying that there are many options out there for you and your child to participate. It's not painful.

I feel that it is imperative to participate. The Buddy Walk on Washington is coming up soon. We'll be asking our government to provide more funding for Down syndrome research. Currently the NIH budget for Down syndrome is woefully behind nearly every other condition or ailment--particularly so when you look at the population numbers. We are making progress in addressing the financial disparity, but if nobody participates in the studies, then we will not make progress.

Stepping down, off my soapbox....

2. Once we're done with the study, we will be able to get a prescription for Rivastigmine if we decide it's something we want for Hannah.

3. The 2006 Rivastigmine study can be read here. If you're not familiar with scientific publications, it's going to be difficult to read. At least give it a try--the introduction is probably the easiest to understand. Then take a look at page 761, Table 3. Look at those gains in language and memory! The most remarkable result is that in four months of medication, the subjects averaged 27 months of memory gain!!! Yowza!

4. Dr Capone thinks that Sleep is the next big item on the Down syndrome research menu. And Vitamin D absorption seems to be poorly manufactured in the DS metabolism. Next time your child has blood work, ask for a Vitamin D level as well--or assume, like the rest of the population, that kids with Ds are just as likely as to be part of the epidemic of Vitamin D deficiency. We use this. And also get a sleep study!!!

5. Our family is willing and able to afford four trips to Baltimore (three hours). I realize that is not the case for many people. But if you're only an hour or two away from Duke or CHOP or KK, won't you please consider advertising some of the studies that are happening locally? Send out an email to your DS group, Facebook or post it on your blog.
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In other news....Chris heads back to William and Mary today. And it's only THREE MORE DAYS until Kate arrives!!
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P.S. Check out the comments--some other good ideas and locations investigate for research possibilities!

Read more about our second visit to Kennedy Krieger here.

Rivastigmine--Alzheimer's drug

2011-01-12T22:00:00.002-05:00

We're headed off to Baltimore in the morning. Chris is joining Hannah and me. He's going to take a look at Johns Hopkins, while Johns Hopkins is taking a look at Hannah.

A few weeks ago we saw an email about a new research study focusing on an Alzheimer's medication and it's efficacy in the Down syndrome population. This caught my interest. I've always been leery of the Alzheimer's problem. I remember a decade ago when I first heard a research study had found amyloid plaques in EVERY Down syndrome brain they autopsied. I don't know how many they autopsied--but I remember that the individuals who died from things other than Alzheimer's Disease (AD). And they found these plaques from age 9 months to 40 years old. Nine months old! That totally freaked me out. The plaques started so early! Clearly the 21st chromosome has an impact on neural plaques.

But, compartmentalizing my fear, I decided that by the time Hannah was endangered from AD, the medical establishment would have solved the problem. Science knew that AD was caused by these plaques. They knew that the DS population would be perfect to study--there would be lots of pressure from the aging senior citizens to solve AD, so there would be a big push for research, and our kids would be the beneficiaries.

Well, the cogs move slowly. There are some AD drugs out there, that show some promise in the general Alzheimer's population. In 2006 Duke University (and one of my favorite researchers Dr. Priya Kishnani) looked at the safety and efficacy of one such drug in adolescents with Down syndrome. There were only 11 subjects. But all of them showed statistically significant improvements in adaptive function, attention, memory and language. The researchers recommended that more studies were necessary--larger, controlled studies.

It took four years since that study was published before someone picked it up and studied it again. I know that the current study was in the works for quite a while, but it's finally coming to fruition. And I'm SO EXCITED that Hannah gets to be a part of the solution!

Dr. George Capone, at Kennedy Krieger is leading the study. I first heard him years ago at an NDSS conference where he was presenting as a member of the Clinical Advisory Board (Dr. Kishnani and Dr. Skotko are also on the Board, or, were..I dunno who's there now!).

This will be a double-blind study, where half the subjects will get the medication and the other half will get a placebo. There will be cognitive and medical testing three times: baseline, interim and final testing. Twenty weeks of treatment. Forty subjects. That's still small. But it's a start.

Hannah will have to discontinue some of her vitamin/herb protocol. That made me happy. It means that, even if there are no studies that show these nutritional interventions are effective, clearly Dr. Capone thinks that something is working there, or he wouldn't need them removed. I'm already missing Hannah's ginkgo...piano practice is markedly more challenging--for her, and for my patience.

I'm going to spend the next 6 months assuming that Hannah will be getting the placebo. We won't know. They won't know. After it's all done, they'll open the records and see what the results show.

Friday is the screening visit. She'll have medical testing--bloodwork, EKG, pregnancy test (WHAT?? Yes. All women of child-bearing potential are required to have a pregnancy test. It took me a while to swallow that. But it is what it is: Research. Controlled Research.) Hannah won't know that it's a pregnancy test. She just wouldn't understand that at all.

We go back in 2-4 weeks for the Baseline Visit where there will be more cognitive testing. We'll receive the medication. 10 weeks later, we go back form more medical monitoring, and 10 weeks after that we'll be done--testing testing testing.

I had our pediatrician look over the study proposal before we made our decision. She talked at length with Dr Capone. Our doctor was very interested in the study. She feels that there is very low risk, but a significant possibility of positive outcomes for Hannah (if she gets the medication). Rivastigmine works on cholinergic deficiency (remember that study about pregnant moms who took choline? The babies with Ds had less delay than those whose mothers did not supplement choline while pregnant. Interesting.).

Yes, I'd love for Hannah to have cognitive gains. But more than that, I'd love for the research to get underway and solve the Alzheimer's problem for all of our loved ones--be they aging parents or individuals with Down syndrome.
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Follow up post can be read here.

New Year, finally a new post!

2011-01-09T10:00:00.001-05:00

So, instead of fervent apologies and excuses, I'm just going hope for blogger amnesty and jump back into the fray!

All has been well, just busy, busy and more busy. The holidays were great--Christmas calm and quiet, New Year's spent with my parents and wonderful friends.

Hannah's ornament this year was a firetruck. She wants to be a firefighter when she's older.

We Skyped with Kate on Christmas morning! This is the closest as I could come to getting a picture of all my kids at one time! (Good news is that I'll get the real thing in 10 days!!)

We had a white Christmas!

Yesterday was our local Bone Marrow Drive! Lois made an appearance to the joy of many.

Lois received a SuperLois cape! Look, she used her amazing powers to make her Daddy disappear before our very eyes!

We raised $2,500 and registered 53 new people to the registry in honor of Lois. If you haven't joined the registry yet, go here to find out how easy and painless it is. There are about 5,000 bone marrow transplants in the US each year, however, there are 10,000 people who need them. You could save a life.

After the fun and excitement at the marrow drive, we were up to more Shenanigans at our house. We hosted the Funquest group for a mystery dinner last night! Twenty teens/young adults with Down syndrome spent the evening socializing, playing games and having a mysterious dinner. It was lots of fun, and they all did pretty well navigating the menu. Everyone got a menu with items like "Moo Juice", "Oink Oink" and "Don't Stab Me With That!". The wrote down their orders which were filled in the kitchen and brought to them in the dining room. Some were surprised to have ordered a knife ("Slice and dice") and a cube of Jello Jiggler ("Wiggly Butt") and some carrots ("Bugs Bunny's Favorite"). Fortunately, we had 6 courses, so everyone eventually got a fork and a napkin. It was messy and fun chaos, but everyone had a good time.

(some crazy dancin'!)

It was great fun. I asked Hannah what part she liked the best and she said, "Hanging out with my friends!". I thought for sure it would have been the "You're such a sweetheart" (cupcake).

I'll be back soon--I promise! Hannah's starting in a new research study and I'd like to share it with you.

Lois update

2010-12-28T14:00:00.004-05:00

Please read Catherine's latest blog post:

Lois

Not all hope is gone.

It's Definitely December!

2010-12-16T22:00:00.002-05:00

Yep, I always take the month of December off from homeschooling. We have so many other things to do that we'd go crazy otherwise. Recitals, parties, fun outings, helping friends, etc.

Last week we spent a night at Great Wolf Lodge in Williamsburg. They had a homeschool discount, and we had friends who were staying there too. It was lots of fun. We picked up Chris and his roommate for the evening and they had fun at the water park. Hannah and I were a bit wimpy--it was chilly in there! But we did go down a few waterslides.

(Hannah says, "Now THAT'S a Great wolf!")

She also asked what you call a bunch of wolves. I said, "A pack.". She said, "No. It's a gang, right?" She was being serious and I didn't understand where she came up with that. We talked about other animals: a herd of cattle, a gaggle of geese, a pod of dolphins, a pride of lions, etc. But she wouldn't let go of the "gang". Finally she said, "Mom. It's called a Wolfgang." Totally. cracked. me. up.

Here in Virginia we've already had three measurable snowfalls! And it's not even winter yet!

Hannah worked hard on the Gingerbread House. Mostly by telling me what to do. But she did do the roof, and added all the candy. And ate a good portion as well.

We picked Chris up from school last night. Tonight we decorated the tree, which was nice. We have a tall skinny tree this year. And Hannah wanted to put the angel on top, so she used a step ladder (she's a bit afraid of ladders--she doesn't trust them). We were proud of her for doing it!

There was just a little bit of time left before bed, so Hannah and Chris had an all-out dirty-sock war.

Hope your family is having fun, spending time together, preparing for holidays!

Sweet Lois, update

2010-12-11T12:30:00.000-05:00

Today I received a Christmas card from Catherine. There is the cutest picture of a bald little girl, smiling. Her little brother is grinning with his bright eyes. So cute!

A few weeks ago I had the pleasure of spending the night at the hospital with Lois. I have to tell you how amazing this child is. She had an off-and-on fever, living in the hospital for 10 days or so, with no real end in sight. She was recovering from a strep infection which landed her in some serious danger--no immune system, so no easy recovery. When I was there, she was bouncing back. I couldn't believe how easy going she was! She was pleasant and friendly to everyone who passed by her door. She had the cutest little twist of her hand to wave to everyone. She never complained. She was gracious to all who entered, even though they were wrapped in disposable plastic gowns. masks and gloves.

This is an honorable child. She carries herself with dignity.

I had been a little worried since Lois doesn't really know me much at all. I've kept my physical distance through all these months of chemo treatments since I never wanted any of my potential germs (or Hannah's) to reach her. But she was just as pleased sitting in my lap as if we were old friends. Of course, I did bring a bribe. I didn't need it, but she did really enjoy the new Elmo book. We sang songs, read stories, talked about dogs (a favorite topic), we cuddled; she smiled! I tried to take a self-portrait with Lois (didn't come out so well, but at least you can see her sweet smile!).

It was bedtime, and she pleasantly snuggled down with her dolly and her blanket. Never made a peep. All through the night. The IV machine was beeping (VERY LOUDLY). Vitals had to be taken. Blood draw. Diaper change. Oral medication. Adjustments to the IVs. Plenty of interruptions, but Lois slept through nearly all of it. And when she was awake, she didn't fuss.

Totally amazing child.

She wore a t-shirt that said "Fight like a Girl" on the front. And on the back it said, "Win like a Woman".

A few days later she was well enough to go home.

The next week it was determined that the most recent chemo potion didn't do the trick. So now she's getting a new concoction--this time it's outpatient. The goal is to get Lois to remission, or close to it, so she can have her bone marrow transplant. Lois is still moving forward.

I am amazed at how much Lois has learned over this past year. She's signing, saying words. And she's mighty fond of medical equipment. The girl knows her way around pulse-ox monitors like nobody's business. She was working on taking my blood pressure when I was there. She's got a sense of humor, like her parents. She's got an easy smile. And an extra portion of love.

Leukemia is awful. There is nothing good about it.

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Good news: There is something you can do!

Join the Bone Marrow Registry. You could save a life. It only takes a cheek swab to join the registry. Totally painless. Totally worth the 10 minutes it takes. Go here to order your swab kit!

If you're local to Richmond, you can join the registry on January 8th at our Save a Life Like Lois's bone marrow drive at Ginter Park Presbyterian Church.. You can volunteer there too, if you want! Hannah and I will lure you in with our baked goods...

If you won't, or can't, join the registry (you have to be 18-61 years of age), then please consider making a contribution to the registry.

Lois needs a bone marrow transplant. So many other children and adults need transplants. You really can make a difference. Honor this remarkable child. She's fighting hard and she could use some champions on her team.

Christmas is Coming to Town!

2010-12-06T20:30:00.001-05:00

Personalize funny videos and birthday eCards at JibJab!

Back to earth

2010-12-05T22:00:00.001-05:00

So...I'm really still here. I have approximately 8 half-written posts, none of which I expect to finish before spring...I just can't seem to to get up off my duff and move forward with them.

So, I'm moving on with light and fresh stuff!

This is our newest addition to our Christmas Cookie repertoire. Pretzels, mini-chocolate chips and a cinnamon red hot. Easy and fun!

(I'm adding instructions for all of Natalie's readers: Roll out sugar cookie dough. Cut free-hand or use a 3" biscuit cutter. Squeeze the sides together a little bit to shape the head. Add pretzel antlers. Bake for regular amount of time. While still hot on the cookie sheet, add the chocolate chips and red-hot (or M&M). Ta-dahh!)

Hannah and James went to see Yo Gabba Gabba Live a few weeks ago. They had a great time, and last week she was reminiscing about it, so she drew this picture.

Friday was Chris's last day of classes for the semester (2 weeks of exams coming up!). We helped him celebrate by going to Busch Gardens Christmas Town. It was FREEZING (at least, by Virginia standards), but we had a good time.

Yesterday Hannah performed in a concert, singing "Somewhere Over the Rainbow" with a choir. She has been taking music classes privately this fall, and she can *mostly* match pitch to familiar songs (this is a big deal to us, a family of musicians, and also an unusual skill in the Down syndrome population). Since she worked so hard, she was invited to join the choir for one song.

This video is of a rehearsal--the cameraman at the actual concert sort of forgot that there is a zoom feature on the camera, so Hannah is only about 3mm high in that video.

Make video montages at www.OneTrueMedia.com

After a celebratory ice cream sundae, we went tree hunting! We found a nice tall skinny one, and will put it up in a couple weeks when Chris comes home.

Hope you're enjoying the start to the holiday season!

Nan Talk

2010-11-07T15:30:00.007-05:00

Science camp can have it's own post once I finish enjoying this extra-long weekend (+ 1 hour).

But here's a quick taste of Nan's camp humor:

#1. Our beach residence was Fiddler Cabin. I was explaining the name to Hannah (there was no Fiddler on the Roof). She said that she thought our cabin ought to be named Fiddler Crabin.

#2. We were walking along the wooden walkways, and I was constantly prodding Hannah to go faster. Exasperated, she said, "These are boardwalks, not board-runs."

Wonderful

2010-11-06T08:00:00.003-04:00

Here's my little girl, ages six through nine, and a little bit of ten.

Make an on-line slide show at www.OneTrueMedia.com

#31/31 Guest Post! Prenatal Diagnosis-A Friend's Journey

2010-11-05T19:00:00.000-04:00

After I posted the link to the new Down Syndrome Pregnancy site I received an email from a local friend. Bobbi was enthusiastic about the site since she has a young baby with Down syndrome. I asked her if she'd like to tell her prenatal story. Since I didn't have a prenatal diagnosis, I never had the turmoil and roller coaster feelings during pregnancy that comes with an unexpected diagnosis. Thank you Bobbi for sharing your experiences with us! Sorry I couldn't get this posted in October, but you make a terrific finale for the marathon month of blogging!
-Beth

My world is Perfect

It’s fitting for me to be writing this during this month of Ds Awareness because my Ds journey really began a year ago. In October 2009, I found out I was pregnant. My husband Mike and I were excited, anxious, fearful, happy, but most of all - Scared. It was four more weeks before we saw the doctor and all I could pray for was a heartbeat. We were scared because just a few months earlier we had a miscarriage; we had never heard the baby’s heartbeat.

Nov 8th: I made the doctor’s appointment for the last appointment of the day, so if we did have the heartbreak like last time, we didn’t have to worry about going to work or facing the rest of the day. Isn’t it odd, that while I was going through what should be a wonderful and great experience, I went into defensive mode. We heard great news! A heartbeat, or, as the medical world puts it - we have a viable embryo. We were only 8 or 9 weeks pregnant, but went ahead and shared the news with good friends and family. I was looking forward to hitting the 12 week part and getting past the next set of tests: transnuchal and triple screen.

Dec 3^rd: I woke up with a sense that my life was going to change forever. It was ultrasound day, when I’d find out if my “advanced maternal age” was going to be a factor in this pregnancy. I felt hesitant and tense; however, I put on a great acting job for my husband. He was feeling anxious and tense as well. I assured him that all would be just perfect - words to remember. I also remember telling him that no matter what, we had each other and that we survived our summer, so it was now our time for joy and good news. Looking back, I said those words to not only convince him but to also convince myself. We arrived at our appointment and went through the routine of the ultrasound. The technician talked to us the whole time, pointing out the head, arms, and feet of the baby and explaining that she has certain things she measures. She never explained what it was she measured or if those measurements are OK and we didn’t ask. As she left, she said, “The doctor will be right back to talk to you”. I felt my anxiety start to disappear.

The doctor popped in and the next half hour turned into eternity. I don’t remember hearing much except “I don’t have good news.” “You have less than a 1 in 5 risk of Trisomy 13/18.” “You are at a 1 in 5 risk for Trisomy 21.” “You have time before you have to make any big decisions”.

In addition, he discussed genetic testing options (CVS or amnio) which would tell us exactly what, if any, chromosomal issues were. I was crying. I was confused. Through my tears, I remember asking the doctor, what is Trisomy 13/18/21 and what decisions do we have to make? I don’t recall his answers, nor do I recall really much of anything else. I just remember feeling that I needed to be out of the examining room and I needed time alone with my husband.

The doctor was very understanding and moved us to his office. I cried—it felt like forever, but was probably only 1-2 minutes. How, what, who or why – but clarity came to me and I looked my husband in the eyes and I knew he was thinking the same thing as me ~ we had to know “what is going on”. We would move forward with the genetic testing. (I could digress into the CVS vs. the amnio procedure since I had both, but I won’t. Suffice it to say I would not recommend the CVS).

The week between December 3^rd and 11^th was a time when my husband and I went into seclusion. We cancelled plans, and stopped talking to friends and family. I researched Trisomy 13/18 and 21. Neither of us talked much – it wasn’t bad or tense--we just kept our thoughts to ourselves. I remember my best friend sending me a text asking how I was doing. I replied that I was numb. I had no feelings, good or bad – I was just numb. I didn’t know how to feel or what to think.

December 11^th: Amnio day. It wasn’t nearly as traumatic as one would think. I don’t do well with needles at all; however, this was very uneventful. It literally felt like having blood drawn (I didn’t dare look at the needle). The doctor did a great job and I left his office feeling hopeful. At least I would get an answer to the question – “What in the world is going on?” From there I could make educated decisions about my family’s future.

Of course, the weekend and waiting was long. The following Monday and Tuesday dragged out and finally on Wednesday as I was sitting down for a meeting at work, my cell phone rang. I hopped out of my meeting and took the call in my office. My doctor then delivered the news that my child has Trisomy 21. Two thoughts went through my head, “Whew! It’s only Trisomy 21!” and then, “Oh my goodness, it is Trisomy 21!” I asked the doctor if we could meet with the genetic counselor at his office since I knew my husband and I would have a lot questions. I hung up the phone, and as if nothing had happened, I walked right back to my meeting and participated for an entire hour, fully engaged. To this day, I’m amazed at how I pulled it together. After my meeting was over, I walked out and went back to my office, shut the door, and cried. At some point, the genetic counselor called me and we arranged to meet that afternoon.

Now we were at decision time – we knew the answer to “what is going on”, but what do we do with this information? I was scared. What if my husband and I weren’t on the same page on how to move forward? Before we were pregnant, we had talked about my age and the risk. At the time we said that we didn’t care. But now that we were faced with the reality, did we still not care? I knew where I was in my heart, but I wasn’t sure about him. I was more upset about the possibility that he and I would not be at the same place with our decision than I was about the actual diagnosis. I had 2-3 hours to wait before I could speak to Mike. I thought of all the directions our conversation could go. I was fearful for us.

Well, I wasted a lot of energy worrying over nothing because when I walked in the house my husband was at the kitchen counter. I didn’t say Hi. I didn’t ask him how he was doing – I asked him “Gut check, where do you stand on this?” He looked at me confused at first, not realizing what I was asking. When he realized what I was asking him about, he said “Oh, we are having this baby”. At that point, I just cried and hugged him for a very long time because I knew that no matter what, we were moving forward together. We both knew that there was a loving child that we created and that no matter what, this child was a part of us.

Later that afternoon, we met with the genetic counselor and after her repeating our “options” to us a few times, I spoke up. I said that we were moving forward with our pregnancy and there were no other decisions to make. At that point, I was given a good amount of reading material, websites to visits, and a DSAGR brochure (Down Syndrome Association of Greater Richmond, VA). Our counselor was very helpful and answered our questions, which mainly focused on potential health problems, quality of life for our child and other general information. She followed up with a reminder that the doctor would want to see me at 18 weeks gestation so he could look possible defects in the baby’s heart.

Mike and I left the office and spent the next week or so in mourning. It’s odd to say that we were mourning our child, but it’s true. We grieved for the child we thought we were having, but were not. We were lonely because no one else was dealing with this and we didn’t want to be the only ones. We were jealous of our friends having typical kids. I don’t think it is possible anyone can avoid grieving. Mike and I each grieved in our own way. Mike was quiet and worried about his child being bullied at school or made fun of. I cried silently at night and worried about my child’s ability to be independent. We both worried about the potential health issues that our child could face, as well as being accepted by his peers socially. We were fearful of what our friends would say, would they support us and would our peers accept us? I spoke to very few people in those weeks, including Mike. I knew our families loved us and supported everything we did, but I wasn’t ready to talk. If I talked, I cried. I received emails with poems and the essay, “Welcome to Holland”. I Googled everything I could find about Down syndrome (and found Hannah’s Shenanigan’s website). I thought of a dear friend who had a child with special needs and I realized how I never supported her enough. That made me feel like a horrible friend. I spoke with another dear friend who connected me with her sister whose child has Down syndrome. I had met the sister over the years, but never her child. It was wonderful to have her introduce me to the world of Down syndrome, to answer our questions, and to give us hope. She also introduced us to the DSAGR and made our entrance into this new community very easy.

Finally, on Christmas Eve, I came up for air. I reached the point of acceptance where I could wipe away the tears, and rejoice in my loving child. It was time to move forward. I felt empowered because I knew my child’s diagnosis. I could educate and prepare for whatever was in store for me and my baby. I made a promise to my unborn child and to myself that I would never stop educating myself and I would do whatever was necessary to make sure he lives a VERY normal life. Over the next eight months that is exactly what I did. I read everything I could. At one point, I had to remember I was having a baby and needed to put aside the Ds material and learn how to take care of a baby. Don’t get me wrong, the emotions did not suddenly disappear. I still cried at night when the lights were off and everyone was asleep. The worst were the dreams I had while pregnant. You always hear that pregnancy makes you have crazy dreams; mine were crazy and always ended badly. I would cry often in the shower after a night of bad dreams. This way Mike wouldn’t hear or see me. I never wanted to worry him. I would share a few things with him, but not everything because I knew he had his own fears and anxiety. I felt that Mike and I had an unspoken understanding for each other’s feeling. For the first 8 months of my pregnancy, it seemed that we would never walk out of a doctor’s appointment feeling the way new parents should feel – happy and excited. At our 18 weeks check up the ultrasound determined that our baby had a heart defect. In addition to the regular visits to the perinatologist, the regular OB, we added the cardiologist to the list of doctor’s appointments. To the outside world I handled the process by making light of it all and trying to see the humor. Internally, I would process it, have a private cry and then move forward. However, after reaching a level of acceptance, I embraced everything and never allowed myself to regret or look back. I could only move forward.

The grieving process is different for each person. I reached my moment of acceptance much earlier than Mike. He was very interested in learning along with me, but emotionally we were at different points in the process until March 1^st. That was the day we emailed a close group of friends the news about Baby J. Up to this point, we had shared the diagnosis with our families and a few of our friends. This was our first test to see who would be accepting or whether we would have to skinny down our Christmas card list! I wasn’t too worried because I knew our friends loved us. Mike was more anxious. As the day moved on and the emails of support and love came back, we knew that we had made a giant step and we were stronger because of the additional support. I never heard an “I’m sorry” or sadness from our friends (nor from any family member). My email to the group was positive, loving and upbeat. I told them how blessed and proud we are of our little baby boy and how excited we are to meet him. I also attached a recent 4-D image of an ultrasound.

Finally, after the long and emotional pregnancy, our beautiful son – Owen – arrived on June 7, 2010. Throughout the pregnancy I heard that babies with Ds come early. But not my boy! He was right on time and didn’t want to leave his cozy womb. The first few weeks after Owen was born were fuzzy. I remember the NICU doctor declare that our son was healthy. He wasn’t going to admit him to the NICU unless the cardiologist wanted it ~ he didn’t. The social worker met with me in the hospital and I could tell she was hesitant and unsure of where I was emotionally. However, after a few seconds of hearing me speak so proudly of my son, my knowledge I had of Ds, the local support group, early intervention – she left saying I taught her a few things and she would send my referral onto the County for early intervention services. We told the rest of our friends and co-workers the news of Baby Owen. More positive support and congratulations came our way.

Where am I today? I’m a proud mama of a beautiful baby boy.

I’m watching in awe as he grows and develops. I love to hear his giggle when his daddy tickles him. I’m enjoying my time with my family and trying to balance work and personal life. I’m also re-reading my Down syndrome books and papers because now I have a reference point in my son and things make sense to me. I’m continuing to educate myself on feeding, speech, and child development (muscles and cognitive). I’m actively involved in Early Intervention with my son and thinking about not only the “now” in his life, but the future. I pay close attention and ask many questions when visiting his pediatrician. I don’t assume anything and keep as much detail as possible. If I hear something interesting about Down syndrome, I Google it or ask another mom. I’m developing relationships with other families, relationships that I will have forever.

After the many emotional ups and downs, worries and fears ~ My world is perfect and I wouldn’t change a thing.

#30/31 Boo!

2010-10-31T22:30:00.009-04:00

Well, I bet you were expecting Hannah to be Pippi Longstocking!

Nope! I was hoping for twin Pippis, but Hannah was not going for it.

She wanted to be a clown. She had a good time trick or treating with a couple of her Southern friends (that's Shea who is the witch!). Unfortunately, this is about the best picture that I got.

Tomorrow we'll be at our science camp, and won't have any internet access for several days (wouldn't you expect scientists to have internet access???) I'm one post shy of finishing all 31 posts. I actually have the post ready to go; it's a guest blogger, and I needed her final OK to post it. But my computer won't let me send email (even webmail!) if I'm using someone else's internet provider. So it's going to be later in the week before I get it posted. It will be worth the wait!

Thanks for reading all through October! It was both fun and exhausting! I'm much more of a 1-2x a week blogger.

#29/31 Dancin' with Nan

2010-10-31T00:00:00.001-04:00

I'm'a gonna have to change my password or something--obviously someone has hijacked this blog!! Clearly someone else besides me loves this Nanabird.

Did you know that the Cherokee people had seven clans? We decided that Hannah would've been a member of the Bird Clan.

If there was Dance Clan, she'd opt for that one, she loves it so.

Visitors are welcome to the last five minutes of Hannah's dance class. I take the opportunity to video the class so Hannah can review the music and movements. She's coming along, regularly a half-beat behind, but she's getting better.

This is a routine they've been working on for a few weeks. It's not yet complete. Hannah loves it because the music comes from Toy Story 3 and all the dancers are pretending to be toys/dolls.

Hannah is the one wearing all black except for a white waistband from her shorts. She's on the opposite side from where I was filming, so I mostly have her reflection in the mirror.

Make an on-line slide show at www.OneTrueMedia.com

#28/31 Guest Post!

2010-10-30T04:21:00.001-04:00

Hi everybody!

It's your friendly neighborhood Peace Corps Volunteer, Kate. In answer to your question, Mom, I own this blog! At least for today.

Ever since Mom asked me to do a guest post, I've been trying to think of what to write. I don't really want to write about Jordan, because I get enough of that in my daily life (ha!). So I decided to write about when Hannah was born. I'm sure this story has been on the blog at least once before, but not from my perspective!

Hannah and me, ages 7 and 16

When Hannah was born, I was 9 1/2. I was so excited when Mom told us she was pregnant, and argued with my brother for months about whether it would be a girl or boy (I won! He was so upset at the ultrasound...). He also wanted to name her Guinevere. Glad that got sorted out. When Mom went into labor on March 12th, I stayed up with Dad timing the contractions, until we got shipped off to a friend's house for the night. Hannah was born at 12:51 AM on March 13th! The next day, we went to the hospital with my grandparents. I was pretty surprised--I hadn't seen a newborn baby before, so I had an image in my head that they came out all chubby and beautiful. Not the case. She was little, wrinkled, and red, and slept the whole time in her little swaddling hospital blanket--I couldn't even feel her through all that cloth! After a while, we left.

Later that day, things went downhill. I later found out that they had taken Hannah away because she wasn't breathing correctly, and the doctor had come in and told my mom her baby had Down syndrome. All I knew was that Hannah was in the hospital, and we couldn't see her. I remember standing outside the glass door of the nursery (NICU?), and my mom pointing out which incubator was hers. She looked like a giant, since all the other babies were preemies! Over the next three weeks, Chris and I made signs to hang on her incubator, and visited the hospital with Mom and Dad. I had no idea how serious Hannah's situation was. I thought there was no doubt she'd get all better and come home. I remember watching them move her incubator into an ambulance to take to a hospital more equipped to deal with her medical issues (pulmonary hypertension--high blood pressure in the lungs, which stayed with her in some degree until she was 2). When I was considering this blog post, I wondered why my parents would take us to see that happen. Now I realize they were worried it would be the last chance we would get to see our sister.

After she was moved to Carolina Medical Center (CMC), a nice NICU nurse snuck Chris and me in to see Hannah. It was crazy--she went from a little raisin to a big grape, because of all the water she was retaining. She had construction paper sunglasses, and tons of tubes. As we left, we walked through the pediatric unit, with jungle animals painted on the walls. My dad made an offhand comment: "If Hannah has her heart surgery, this is where she'll stay." I can picture clearly in my mind the glare my mom gave him. I knew something was up. On the drive home, just past the cement truck intersection (every time we drove past it, there was a cement truck!), Mom explained his comment. She said that Hannah has a problem with her heart, and is going to need surgery. Chris and I started crying. I asked, "What else is wrong with her?" Then she said that Hannah has Down syndrome. I said "NO!" and kept on crying. I must have had some idea of what Down syndrome meant, otherwise I wouldn't have reacted, but I couldn't remember seeing anyone with it, though I know I must have. Mom asked us what we thought Down syndrome meant, and I think I said something like "It means she'll be stupid." I was so upset. I don't think "devastated" would be too strong a word. First, my little sister wasn't chubby and beautiful. Then, she was in the hospital forever. Now, she had Down syndrome, and had to have heart surgery. Mom said she hadn't told us before because she wanted us to get to know and love Hannah before we knew she had Ds, so that it wouldn't matter to us.

Once Hannah came home, it didn't. Mom dressed her in a starfish outfit, with a hat I hated, but she was still really cute. She was a great baby. When she smiled, she would open her mouth as wide as it could go, and we would kiss inside it. We called them "moon smiles." We met other babies and children who had Down syndrome, and started attending DSAC, the Down Syndrome Association of Charlotte. Growing up, I always knew she had Down syndrome, but I never thought about it when I looked at her, or played with her, or she let me hold her (when she was a little older, she didn't want anyone but Mom touching her--Mom would hold her, and then we'd have to pretend it was Mom's hand rubbing her back, not mine! Whenever she figured it out she was so mad.). She was going to therapies, started crawling (with one butt cheek up in the air), started talking ("woof" meant "dog" at 9 months!), signing ("more!"), and reading sight words.

As she grew up, she was just Hannah. Yes, I knew she had Down syndrome. I knew she would have a tough time learning. I knew other kids might make fun of her. But she was still my sister.

As my mom said a while ago, I wouldn't take the Ds away from Hannah, if given the choice. She is such a strong, beautiful, smart, independent young woman, and I know that without having to work harder for things that come easily to others, she wouldn't have the strength of character and mind that she does now (read: stubborn). While I don't think she really gets what it means to have Down syndrome yet, when she does I hope I'll be there to explain what it was like for me when I learned she had Ds, and how it never stopped me from loving her, just made me love and want to protect her more.

at Easter Seals camp for kids with Ds and their families, last summer

If it weren't for Hannah, I wouldn't be halfway around the world teaching Special Education. I wouldn't want to adopt children with Down syndrome. I wouldn't call people out on using the R word (well, maybe I would. But not as passionately). She's the Baby Boo to my Sully. The Nemo to my Dory. The Murray to my Anthony (.....or Jeff). I love her, and I love that she has Down syndrome.

at the DSGR Buddy Walk last year

#27.5/31 Honey, I Shrunk the Kid!

2010-10-29T22:30:00.001-04:00

I heard grumbling all the way from Jordan telling me that my previous post didn't count for 31 for 21. Hey! Who owns this blog anyway?? Who is the Mamma?

But I do see her point. So here are a few pictures of my 21st chromosome mutant to make up for the boring pre-trip post. (Don't be hatin' for that mutant comment. It's technically true, and I say it lovingly and humorously! And I love her mutation--she's adorable.)

On yesterday's southwesterly journey we took a midday break at the Greensboro Children's Museum.

Honey, I shrunk the kid!

In keeping with her new fascination with civil heroes, here are two of Hannah's latest career aspirations.

And if those don't work out, she's going to be on the pit crew for Lightnin' McQueen (or other race car, like Hot Wheels).

We hopped back in the car and made it to Flat Rock, NC without much trouble.

I have internet access here, but for some reason I cannot send emails. Maybe that's a Comcast problem or some server glitch. Don't think I'm ignoring you!

#27/31 Out of town, again!

2010-10-28T08:00:00.004-04:00

So we're off on our next adventure! Hopefully this will post as we head out the door at 8 a.m. We're on our way to the North Carolina mountains. We'll be staying in Flat Rock tonight. Our good friends Chuck and Janet live there. We met them when we were young parents--Kate was 2 months old--and James was stationed in San Francisco. We lived in a tiny apartment in San Leandro, near Alameda. Chuck and Janet took us under their wing as we were ~~but poor, lost circus performers~~ new parents lost on the West coast. They've been cheering us onward, through many moves and trials. They've been champions for Hannah since the day she was born.

Just about the time our family moved out of North Carolina, Chuck and Janet decided to move there! We do get to see each other more than the 15 years we lived on opposite coasts. And fortunately for us, they don't mind giving us room and board for a night while en route to the Museum of the Cherokee Indian.

It's almost a 7 hour drive to Flat Rock. Then another 90 minutes West to the museum (tomorrow). Then another 3.5 hours East to my parents house in Tega Cay, SC. We've packed videos, books on CD, a new coloring book and snacks. Should keep us happily going!

I'll check in when I can...I have two guest bloggers chiming in soon, and I hope to squeeze in a Halloween post too! I'll be home next Thursday night.

#26/31 Art

2010-10-27T21:00:00.018-04:00

Hannah completed her art session at our local Homeschool resource center on Monday. Miss Jennifer is a great teacher! Hannah's been taking classes with her for over two years. Usually I stick her in the 6-11 year old class, but she's outgrown it (physically); she doesn't really fit in. This session Miss Jennifer offered a new class for advanced students. Over the course of eight weeks, the class would work on just two projects, one was pencil, and the other was acrylic on canvas. The focus of the class was on color scale--from light to dark tones, shading, etc. Now, I wouldn't ever intimate that Hannah is an advanced artist (yet), but it sounded like a class she'd enjoy. And the age range was 10-15. Perfect. Jennifer and I chatted and she quickly said she absolutely would love to have Hannah in the class.

Everyone in the class did a similar drawing, with a ribbon through the fingers of their hand. Then Jennifer connected each drawing and built a long accordion style book.

(click to enlarge)

Hannah really enjoyed this project! (She managed to squeeze in a little bit of an electric guitar in hers too.)

Her second project was a little more challenging. The teacher brought in a variety of glass bottles. The students were to imagine something made out of them. There was a charcoal sketch, and then a pencil outline on the canvas. They had to pick one color and make a tone scale (light to dark). Her favorite color is red (like Murray Cook, the Red Wiggle, and like Lightning McQueen).

Hannah thought about a castle. Here's her charcoal sketch:

And her final painting. My favorite part is that little duck in the bottom right corner. (And that other creature is a pony, not a rodent. I think the thing that looks like draperies is a stall in a barn. Not sure though.)

She was very happy with the class, and she's proud of her hard work. She's looking forward to starting a new class in January.

#25/31 Learning from Others

2010-10-27T09:00:00.036-04:00

Sometimes homeschoolers are a little too insulated.

We generally don't use any profanity in our house, nor do we use slang for anatomical terms.

I remember when Chris and Kate were about 9 and 11. A neighborhood kid used a word that they didn't understand. So they asked us what it meant. It was slang for a "male private part".

James and I decided that we needed to give these kids a real education, so we calmly taught them every single foul word we knew. (Don't forget James was a sailor....)

We spent a week politely saying things like:
"Where the *&% did I put that #$*@-ing washcloth?" It was great fun!

Fast forward a decade or more, and we are having the same problem. Well, it's much lighter weight than male body parts at this point.

One of Hannah's friends (typically developing) was at our house the other day. He was saying something about farting. In our prudish house, we use the babyish term "toot", or the more formal, "passing gas". (As an aside, as a child, my circumlocutory family used the term "effluviate" for any malodorous fumes.)

Hannah figured out what "fart" meant by using "contextual cues".

She and L. had a great time making farting noises. They used the word "fart" lavishly. For quite a while. It was a bonding time of sorts.

They later had fun playing paper airplanes, PlayMobil, and Hot Wheels. And no residual effluvium. It was a fun play date.

L's mother later inquired whether her son behaved well. I said yes, aside from teaching Hannah the word "fart", but that didn't count. Hannah was long overdue to learn that one (and learned it well, she did!). I'd much rather have her laugh when it is appropriate than to not understand when something is funny.

Kate Update

2010-10-26T21:00:00.002-04:00

A couple days ago was Kate's one-year anniversary in Jordan. It's gone by quickly, and also s-l-o-w-l-y. It's been less than three months since I was there, but it feels like I was there ages ago.

Kate has been having a challenging time in Jordan--everything is more difficult than it should be, and she's been frustrated with several situations. But now that she's counted down her first year, she's got a new countdown--she just bought her tickets for a visit home! She'll be coming home for a few weeks in late January! We're so excited! Three months until she's home! Can't wait!

#24/31 Quick Cookin' with Nan

2010-10-26T11:00:00.002-04:00

More like, slipshod Cookin' with Nan....

Monster Toast!!

Get your bread. White is best for this kind of toast.

Then make colored milk. I picked red, blue and green.

Swirl the color around in the milk.

Then use a paint brush (we have ones specifically designated for food) and make a funny or scary face on the un-toasted bread.

You can paint both sides of the bread if you want.

Pop the bread in the toaster. Don't make it dark toast or you won't see the monster faces!

The monsters are coming out of the toaster!!

Butter them up!

And become a monster slayer!

#23/31 Running Away from Home (Me!)

2010-10-25T23:59:00.028-04:00

So, I'm falling behind this 31 for 21 deal...and it's likely to get worse. Hannah and I will soon be traveling for a week (Hello North and South Carolinas!). So I'm officially petitioning for an extension of October so I can complete this challenge!

I ran away from home on Saturday. I had a good weekend away with two Sisters of the Chromosome-hood, Wendy and Donna. We had an overnight escape to a cottage on the York River, near historic Yorktown (of Revolutionary War fame).

We spent our time shopping, talking, eating, talking, mojito-ing, talking, sleeping and talking. As it should be!

Donna and Wendy each have two daughters with Down syndrome. Between them, they have one kindergartener and three 1st graders. That's a whole lot of activity! I know they needed the escape more than I did, especially since they each planned and executed a Buddy Walk in their town this month (and Wendy threw in a Golf Tournament as well for a good measure of insanity).

It was a wonderful time to share--without interruptions.

This extra-chromosome thing is really a sisterhood. It's also a family tree. Those of us who have a family member with Down syndrome really are connected genetically. I don't know where I'd be without my extended Ds family. Probably up the York River without a paddle. Thanks, blogworld, for being part of my family!

Birthday Boy

2010-10-25T21:00:00.001-04:00

Today Chris turns 20! We couldn't be more proud of him. He's mapping out his goals, and working hard to achieve them.

This weekend I got to stop in at William and Mary to bring him some birthday cheer.

Birthday muffins and Legos....what more could he want? Oh, I know! He could want to take the next level SCUBA certification class! Make it so!

Happy Birthday Chris! We love you!

#22/31 Another busy day....

2010-10-22T23:20:00.001-04:00

And now, at 11:17, I am putting two girls to bed. Sleepover, please let everyone sleep!

I'm heading out of town tomorrow--hopefully I'll have a make-up post on Sunday--no internet on my Moms Escape Weekend!

Surprise! A face lift!

2010-10-22T09:10:00.007-04:00

This might be a temporary interior decorating change, or I might get used to it. I don't mind those little birds over there in the corner. Nice touch for my Nanabird.

It might even get me motivated to paint my bedroom.

On the other hand, if something isn't broken, don't fix it.

We'll see.

# 21/31 Monica and David + Buddy Walk Total

2010-10-21T23:58:00.000-04:00

Wow--when I typed in 21/31 I almost felt like I finished the marathon! But, no. I still have 10 more posts to go!

Tonight was my Monica and David movie party! It didn't start out being a party, but I posted on Facebook that I had it recorded, so a bunch of friends who don't have HBO came over. We had food and fun. We paused the movie SO much--it took us an extra hour to watch it! We all loved Monica.

I have lots of comments/thoughts about the movie, but I need to process first. And since I've got 9 minutes left before midnight, I have to make this short!

Besides that fun, James came home with a big check from a donor who decided to match Hannah's Buddy Walk funds. That brings Hannah's fundraising up to: $ 1,890.00!!! That is amazing to me. I think the most she's raised in the past has been about $500. So if anyone is looking for a good landscape company--check out ORC Grounds Management, Inc. The owner, Dave, is a big community supporter; I'd love for locals to give him their business!

#20/31 Piano Spy

2010-10-20T21:00:00.003-04:00

I usually sit by Hannah when she practices piano. Today I made her start her warm up exercises by herself. I filmed her with the camera peeking around the doorway.

Make video montages at www.OneTrueMedia.com

After she saw the video she said, "I don't have good piano posture."
At least she noticed the slouch I'm always trying to correct!

P.S. New post for Lois.

#19/31 Dance!

2010-10-19T14:00:00.000-04:00

It's Tuesday. Hannah's favorite day. She's busy getting her chores done so we can finish up her schoolwork. She has a lot to do before we leave the house this afternoon. But she's working hard. And fast. Motivation is a wonderful thing!

She has her theater class at 4:30. That used to be her favorite activity.

But not any more.

Right after theater is over, she changes into her dance clothes. She gets so excited! Dance starts at 6:30, so we scurry to get some dinner out and get to the studio.

All of the girls in her class have had a year (or many more) years of dance. The class is fast-paced for a beginner. Her teacher has Hannah do everything the other dancers are doing, and helps her focus on learning some basic steps, but she doesn't expect any beginner to be able to do all the moves.

Hannah comes out of class feeling very successful. She loves it. Me too.

#18/31 Love You from the Heart of my Bottom

2010-10-18T13:00:00.006-04:00

Yesterday Hannah had a really tough workout at her swim lesson. She is finally able to swim a "legal" 25m of Butterfly. I thought she was months away before being ready for competition. Which would have been fine since Special Olympics doesn't start until late January. But she got it all put together--and did about 4 laps of it! It's not all that pretty, but she can meet all the requirements for the stroke. Go Nanabird!

She was still in her wet bathing suit on our way home. She had some sports pants and a sweatshirt on (the pool is outdoors, and it's chilly!). The plan was to hop right into the tub to soak off the chlorine. She sat down on the little bench in the bathroom to change out of her wet things. And when she got up, this is what was left:

And yes, she did say, "That heart is saying I love you mom, from the heart of my bottom."

#17/31 Harumph

2010-10-17T09:30:00.005-04:00

Yesterday Hannah and I went to a local parade/festival. It was your typical craft/funnel cake/inflatable bounce house festival. The funds raised were to benefit a technical high school in the area.

It was a chilly morning (upper 40s), and I forgot to bring the collapsible chairs. The grass along the parade route was dewy. No matter. We sat on our reusable recycled plastic Trader Joe's grocery tote bags.

It was the s-l-o-w-e-s-t parade in the world. It was home-towny in a town that is not so small. Groups of Boy Scouts, Dance teams, church missions, and a clown or two thrown in for good measure. There was one marching band, saved for the end (which was about 2.5 hours later). It was rather disjointed.

But they were tossing candy to the child spectators, which Hannah liked very much. Of course, she couldn't eat most of what they offered since she has braces. She didn't mind.

About an hour in to the parade, following an Irish Dance troupe, a bunch of people wearing red shirts appeared. They had candy and stickers and flyers supporting the local Republican candidate for US Congress, Eric Cantor. After receiving hand-delivered candy along with a glossy brochure of Mr. Cantor, Hannah wanted to know which of the parade-sters was Eric Cantor. I wasn't expecting him to actually be there, but, ta-daa, as soon as I spoke those words, I saw him. So I pointed him out as he worked the crowd, shaking hands with everyone. He was coming our way.

Hannah was excited, thinking that he was a famous person (well, he is the Republican Whip). She knew he worked in Washington DC. Hannah is rather patriotic, and in her simplistic understanding of government, that meant that Mr Cantor, in her mind, ranked up there with Firefighters, Police Officers and Veterinarians. That's pretty high in her books. She put her "Cantor for Congress" sticker on her shirt.

Here he came! He was shaking hands with the people right next to us! He looked directly at Hannah who was waving and getting ready to say hi. Then he looked directly into my eyes. And then, without a smile, he silently turned and walked away.

She wasn't crestfallen. She didn't have much invested in Mr. Cantor. He serves our country, he provided candy, and his people wore her favorite color, red.

I had even less invested in Mr. Cantor before this non-incident.
But he managed to further reduce any interest I might have had for him.

My interpretation is that Mr. Cantor was uncomfortable with my child who has a disability. It was a small slight, but one that was completely unnecessary.

And now I'm harumphing about it.

We lasted a bit longer watching the parade before heading over to where the craft stalls were. Hannah had fun looking at all the items. We came across one vendor who runs an art studio. She had a collage-making station, so Hannah got right to work.

We also got to see the Da Capo display--the music school where Hannah has recently started taking private lessons.

Photo and video editing at www.OneTrueMedia.com

She played some games-- mini-golf challenge, ring toss, etc--and won little prizes. We watched some dancers perform on a stage. Ate our fair food, and headed home. It was a good way to spend half a Saturday. I just wish I didn't have to witness a grown man being afraid to talk to my daughter.

#16/31 Movie time

2010-10-16T21:00:00.001-04:00

I have been so good! I DVR'd the Monica and David movie. And I've avoided reading what people have been saying about it on Facebook. I'm waiting to watch it until next week.

On Thursday I will have eight or nine women coming over to watch it together. People who are curious, some with a child with Down syndrome, and some without. Some are homeschoolers, and some are not.

I'm looking forward to seeing the movie, and having a discussion afterwards. And, of course, having dessert.

Don't be a spoiler! You can tell me your opinions on Friday!

P.S. Today is Lois' third birthday! Go leave her a message on her blog!

#15/31 Cooking with Nan V

2010-10-15T20:00:00.006-04:00

A couple days ago we didn't have much in the house for breakfast, so Hannah wanted to make some muffins. She decided on cheese muffins (I was lobbying for biscuits, much faster).

As I was cutting and pasting this video to share with you, I was noticing how many fine motor skills are necessary for cooking and baking. It's been six or seven years since Hannah had any occupational therapy, and I have no idea where she'd fall on a scale of fine motor tasks. I'm pretty sure she'd be down in the 4-5 year old range (don't try to get her to cut a circle = fail). But it doesn't matter. She can function well enough. Her movements are good enough to get the job done. I'm not after finesse. I just want her to be able to accomplish what she wants to accomplish.

This is a bit longer than I wanted to post, but I did want you to be able to hear and see Hannah--her successes (love that salt measuring), and her challenges (flour!).

Make an on-line slide show at www.OneTrueMedia.com

Cheese Muffins

1 1/2 cups flour

1 1/2 T sugar

1 T baking powder

1/2 t. salt

3 cups shredded Colby and/or Jack cheese
(we used cheddar, but jack is much better)

1 C. milk

1 egg

1/4 C. melted butter

Combine the dry ingredients in a bowl. Stir in grated cheese.

In another bowl, combine the wet ingredients; whisk well
(I forgot that part, but it worked out fine--especially if the milk is room temperature--then the butter will stay melted)

Stir the liquid into the dry ingredients.

Measure into a WELL-GREASED muffin tin.
Bake at 375 for 20-25 minutes.
(These muffins like to stick to the pan, so grease liberally.)

#14.5/31 Addendum

2010-10-15T08:00:00.002-04:00

Now that I've had a night to sleep, I still can't see yesterday clearly. I am pretty sure that hormones (of the female type) were not directly guiding Hannah yesterday. She is usually grumpy and mean when she is a few days away from the start of her cycle. Yesterday she wasn't grumpy, and not particularly moody; we had that last week. Yesterday she just didn't (or couldn't) listen. My clue came while we were at the orthodontist in the afternoon. She loves him. But she didn't process much of what he said to her. He asked her a couple of questions and she didn't even turn her head to listen to him. I can understand her tuning ME out, but not Dr. B. And he was telling a joke, one of her favorite things. A bad joke. Her specialty.

I'm glad that I went back to the chair with her. I had had enough of her by that time and was considering letting her go back for her adjustments by herself just so I could have a few minutes away from her in the waiting room.

So I'm leaning towards the theory that she wasn't intentionally disobedient, but that there was something that was clouding her processing. By evening time, she seemed back to normal. She had her first music class with a new teacher, improvisation and "singing". She loved it. In my earlier fury I had declared all media off limits for the entire day. So she happily got out her fancy water colors and painted the evening away. It was a nice way to end the day.

If she starts a cold in the next day or two, I'll know what was happening. Otherwise, it will be one more unknown childrearing experience. Thanks for your thoughts and support. Getting feedback, knowing I'm not the only mean frustrated mommy out there is very helpful.

#14/31 Ugh

2010-10-14T16:00:00.008-04:00

Most days are good.

Some are lousy.

It's not been an "on" day for Hannah. She just isn't listening. My interpretation is that she's ignoring me. Which doesn't make me happy. In fact, it makes me pretty angry.

I can get angry quickly, if I've got a reason to. And yes, I overreact. And I'm loud.

I'm sure I am scary to the one who receives my wrath. Nobody likes to get yelled at.

And yelling doesn't really solve the problem. But it sure feels good to be the yeller.

When I yell at Hannah, she gets quiet. She will sort of try to fix whatever it is that she's messed up, or try todo what she's instructed to do. But she will never, ever apologize. At least, not in a reasonable time frame. I'm sure that tomorrow I will hear a heartfelt apology. But that doesn't make things better today. It's really frustrating.

Frustration.

Yes, I do get frustrated with Down syndrome. Why can't Hannah understand something today when she understood it a few days ago? Why does everything have to take sooooo long? Why can't I be more patient?

I actually am pretty patient with her. Of course, we both overdose on each other on occasion, with just the two of us together every weekday.

And now, I can't tell if Hannah's having trouble today because of some neuronal glitch caused by excess genetic material, or if she's just behaving like a typical adolescent. Is there a real reason for her behavior today? I mean, is there a physiological reason? Or is it just a random adolescent mood swing that makes her unaware of any one else's existence.

Am I asking too much of her? I don't think so. When I say, "Take a quick shower" she usually gets right down to business. Today she had two reminders to get out. I was busy with other things and was ticked off when she was still wasting 25 minutes of water (we're on water restrictions in our county). After that, she was careless with her laundry. Not sorting correctly (she does know how to do it--she's been at it for 8 months), not using the right settings. Then there were several other lapses. Nothing huge, just totally annoying. I expect my children to respond to a question. I expect my children to obey a command (the FIRST time). Generally, my expectations are met. Today I'd give an instruction, and she obviously chose either a) to not listen /or/ b) couldn't process the information.

Now that I've settled down some, I think that the answer must be b. And where does that leave us? Stuck with a faulty main frame processor, with no means of servicing it.

And that is what frustrates me. I don't want to "fix" her. I don't think there's all that much "wrong" with her. I wouldn't know where to begin imagining what she'd be like without that volunteer chromosome (that one that grew without intent). But that chromosome is inexplicable. I wish it would give out an error message, telling me the status of the processing unit. Is the WiFi slow today? Are there too many tabs open? Is she using Internet Explorer when she should be using Firefox or Chrome?

I know just a few days ago I wrote that I couldn't tell what is Down syndrome and what is Hannah. And I still don't. When I wrote that post, I was content with Down syndrome. And now I'm frustrated with it.

It happens a couple times a year. A little burnout on both of our parts.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And now, to not leave you in despair, here is a little story that happened yesterday.

At dinner, James asked her what she liked at school time today. She couldn't remember a specific thing (retrieval of information is difficult--it's in there, but won't always come out of the mouth or pencil). I prompted her with a few cues (Look at the other end of the table (where we lazily left out all our schoolwork)! Look for something red! It's a c---).

Aha! She said, "I liked using the count-you-later!"

I guess when you use a calculator you are really going to count those numbers later.

#13/31 Photography and Captions by Hannah

2010-10-13T21:00:00.014-04:00

This is my Rescue Hero Command Center. I bought it myself.

That's a BIG goldfish.

It's not Puddle. But it is a Big Puddle.

(Puddle is our baby painted turtle.)

My mom is silly in this picture.

I drew a picture of an airplane for my Dad when I was at the airport.

This is inside my Grandma and Grandpa's car.

My Daddy made a perfect smile so you can see him!

My mom planted a strawberry plant. Can you believe it? A strawberry in October!

Raspberries. They taste yummy!

These are watermelons.

I like to make videos on my camera the most.

#12/31 Awareness and Advocacy--that's what it's all about

2010-10-12T22:30:00.005-04:00

See these good people? They are friends of mine. Stephanie won her age group at the BuddyWalk 5K on Saturday! Ed, her husband, placed second in his category!

There are several things that make them remarkable. Ed has been working very hard to lose weight this year. By eating healthy and exercising he has lost over 100 pounds in 10 months! At his first race back in the spring, he had to walk for a good part of the race. Now he's coming in second place! He's been chronicling his weight loss at his blog.

They also are smart, funny people who like to laugh.

They're from Texas, and they are surviving--and thriving in--the culture shock of central Virginia.

They home school their son.

I don't know if they've ever had any personal experience with Down syndrome before they met Hannah, not that it matters.

Saturday was Stephanie's birthday, and she chose to spend it running to support the Down syndrome community. How cool is that?

What is even more cool is the comment she left me yesterday:
Great pics from the Buddy Walk. Sorry to hear that Lois has a viral infection. Ed and I sent our swabs back to the Be The Match registry last week, so we should be official as soon as they're processed. I didn't know anything about the bone marrow registry before I read Lois's mom's blog, so I know there are lots of people who will register once they know it's there. Sending lots of prayers up for Lois and her family.

The power of Blogging thrills me!

(In related news, Lois is home from the hospital and does not have a virus. She had a reaction to a medication which mimicked an infection. She's still struggling to recover from the effects of both chemo and the reaction, but no fever right now. Lois, please sleep so your parents can rest as well!)

#11/31 Rut roh!

2010-10-11T23:00:00.001-04:00

Ooh, I only have an hour left of the day! Shazam that day went by quickly!

This is Chris' last day at home, and I've spent all afternoon and into the evening helping him with his Halloween costume. I cannot reveal it at this time, but it is really funny and adorable. Originally both Hannah and Chris were going to be the same thing for Halloween, but now Hannah decided on something else. I'm not too excited about her choice--it's a little too bland for me--but she gets to choose. At least it isn't a Firefighter, which was one of the finalists.

It doesn't make much difference, but it would have been cute to have twins! But Chris will be at school, and Hannah and I will be in South Carolina. We are going on a 3-day field trip to Seabrook Island, SC to study barrier island ecology. Our good friends Roxanne and Shea, and Holly and Emily will be sharing a cabin with us! Three moms, three girls: FUN! Hannah's friends are a year or two younger than she is, which works out perfectly since the classes on the island are multi-aged so they can all be together.

I am thinking of adding on a couple of days to our trip to go to the North Carolina mountains. This fall Hannah is studying Native Americans. Right now we're learning about the Cherokee. We've been looking at various websites along with our library books, and found the Museum of the Cherokee. I think it would be fun to go and see it first hand.

Hannah has been on the lookout for native words--we found a site that had Cherokee towns/village names. She recognized these names: Chattanooga, Qualla (which is a street not far from our neigborhood), Etowah (which is a local Girl Scout or Boy Scout council name), Oconaluftee (a river in NC), and Sewanee (in Tennessee, where my professor cousin used to teach). She also has found the word Cherokee while riding around town--a Jeep, and a camper both have that name. She thought the funniest place to find the word Cherokee was when she was doing Chris' laundry. There it was, fresh out of the dryer, his t-shirt from Target: Cherokee!!

10/31 Buddy Walk Pix

2010-10-10T17:00:00.002-04:00

I haven't been out and about visiting other blogs this weekend, but I bet there are a gazillion Buddy Walk pictures hitting the web.

Since we're about to go out to dinner to celebrate James' new promotion/raise/client, (and the fact that we don't have to move for FIVE more years!), I'm taking the shortcut for today's post and throwing up some BW pix from yesterday.

Our good friends The H-B's came along for the fun! Chris and I sneaked away from the registration table and caught up with everyone else just in time to begin the walk. It was hot--86 degrees!

There was a jump rope team performing--Hannah loves jumping rope!

Just before we left the walk, we ran into Jay and Mac, Lois' Daddy and brother. Last week Lois finished her first round of chemo, which knocked her down with a viral infection, so she's back in the hospital. All 1,000+ people attending the Buddy Walk received a flyer about Lois and her need for a bone marrow transplant--it's easy to join the Bone Marrow registry, just a cheek swab and you're good to go! Please go to Be The Match to sign up!

9/31 Buddy Walk!

2010-10-09T09:00:00.020-04:00

Today is the Richmond Buddy Walk! It's being held at one of the biggest shopping centers in the area--Short Pump Mall. It's an open mall, so we'll be outside and the weather is expected to be beautiful--sunny in the low 80s. (That's my reminder to get the sunscreen out!)

We've got a collection of ratty old t-shirts from the past dozen years of Buddy Walks. Some have been handed down to Hannah to use as "paint shirts" to keep her regular clothes clean when she's being "creative". It will be nice to have a new presentable t-shirt to wear!

Hannah and I went to retrieve Chris yesterday. William and Mary has a fall break which conveniently falls on our traditional Buddy Walk date. Chris and I usually volunteer at the registration table, while James and Hannah arrive a bit later.

Hannah has done well with her fundraising. She knows that the money she raises goes to our group, and to the NDSS. Our Richmond group does a terrific job of sharing the funds directly with families and individuals with Down syndrome. We have an Enrichment program which is available to all families who are active in the DSAGR (Greater Richmond). The Enrichment program allows families to receive scholarship funds for an activity in which the individual with Ds would not otherwise be able to participate. Last year we all went to Easter Seals Family camp for a week. This year Hannah decided she wanted to focus on her swimming, so she applied for a series of swim lessons with a really great coach. She's improved her strokes considerably!

Hannah has also been enjoying making new friends in FunQuest. It's a group of kids with Ds in the middle and high school age ranges. They do TONS of stuff--from movies and ice cream to cooking classes to glazing pottery. All the activities are subsidized by the DSAGR. It's a great opportunity to socialize and gain independence in the community.

I'm glad that the Richmond group still does an Official Buddy Walk--I think it's very important to be a part of a something bigger than just our little corner of chromosomes. The National Down Syndrome Society may not always promote things the way I'd like them to, but I am glad that they are advocating and lobbying for the Down syndrome population as a whole. So many times we don't see the big picture, and the NDSS helps keeps the national conversation about research, education and advocacy relevant to the entire United States.

Off my soapbox and on to the Walk! Pictures coming up soon, I hope!

8/31 Dogs

2010-10-08T09:00:00.001-04:00

Hannah is a dog lover. She studies books about dog breeds. A recent gift was a book about puppies. A puppy encyclopedia that includes breeds such as the Nova Scotia Duck Trolling Retriever. Dogs that probably don't exist in reasonable quantity.

When I came home from my trip to the Mideast, I found a new addition to the pile of stuffed animals. This one was easy to notice.

It's as big as Hazel (who is almost 50 lbs).

I asked her where the Swiss Mountain dog came from. She said, in a huff, "Mom! That's a Bernese Mountain Dog!" (In my defense, the two breeds are very similar.)

The dog was borrowed from her friend Cady. It's been here for a couple of months; it's time to return it.

Who knew that Hannah had named it?

Bernice.

Yup. Bernice the Bernese Mountain Dog.

7/31 Art

2010-10-07T09:00:00.015-04:00

Hannah detested coloring/writing/scribbling until she was 5 years old and no longer had an OT telling her what to do. She avoided scissors like the plague.

Then one day she discovered crayons and coloring books. And my life was easier. Any time we had to wait at a doctor's office, or a restaurant, she was thrilled to fill her time with coloring. Long car trips? She could color for hours. A new coloring book was a favorite gift. A pair of scissors and some construction paper kept her occupied for quite a while. (And even longer when she had to clean up the mess!). Throw in a hole punch and she'd be set for an afternoon.

As the years went by, she discovered that she liked to draw as well. At her peak, she probably did some kind of coloring, drawing or painting for 2 hours a day. She started taking art classes a couple years ago. Her creations in class are quite different from the ones she does at home. She doesn't have much carry-over. That carefully executed self-portrait made in class is the only one that has any sort of real proportion. That's okay. We enjoy all that she creates. I really wasn't expecting a child of mine to be artistic. I am lucky if I can draw a stick. (No, not a stick person, just a stick.) My idea of painting is using a roller on a wall. James can draw. He will sit and draw or color with Nan. Me? I'd rather bake muffins.

Hannah's moved past her "tape" phase of 6 months ago. (Sorry to disappoint you Chrystal!)
In the spring she took a pottery class. She doesn't yet have the finely graded muscle control to use the wheel, but she has made some nice handwork pieces.

(that's a yellow turtle in the front)

This vase was my Mother's Day gift.

When she's motivated, she'll get out her paints. We have a variety of paints, but usually she just goes with the Crayola washable poster paints. She really that Little Tykes would make a tall version of their easel. All the "adult" sized easels I see are not sturdy enough for her. So she uses a tabletop easel left over from Occupation therapy.

This one surprised me. I don't know where she picked up the idea of a fruit bowl still life, but she created it from somewhere in her memory.

And this is one of my favorites. Again, from her memory. She hasn't read Morris in a long time.

It's Morris the Moose (a very funny beginning level set of stories). I like it because I think it shows that she tool some thought to figure out where to leave paint out. She planned to leave the teeth white. The visual processing is amazing to me.

If you haven't read Morris stories, I recommend them. I prefer Morris over Amelia Bedelia. The books are simpler than Amelia Bedelia, so the humor is more obvious. (And let me tell you, a concrete learner does not understand Amelia Bedelia. She IS Amelia Bedelia.)

Having an artist in the house was the last thing I would have expected when Hannah was a preschooler. Some things are best left alone to be figured out on their own time line. I'm glad we dropped OT. It gave her the freedom to explore on her own terms.

6/31 Adolescence. Yes and No.

2010-10-06T09:00:00.002-04:00

My girl is turning into a teenager. Not officially, of course, but in attitude.

Adolescence is really quite humorous when you're not the one going through it. I always enjoyed watching my capable children completely flounder with simple tasks, just because their brains are drowning in a bath of hormones.

Hannah's not yet there, but she is getting an attitude with me. She's short with me, and can be rather rude. As with most adolescents, she thinks it's my fault--that I'm the one who is changing. I try to give her as much independence as possible, but there are times when I need to supervise. She is not pleased.

I was talking to Kate about this on Skype (the best invention ever!). She can see it/hear it when Hannah's Skyping with her. When Nan's turn on Skype should be over, she cops an attitude. Kate will say, "Hey! Be nice to Mom!" Hannah usually responds with an indignant sigh.

I know these are all signs of typical emotional development (at least in the USA), so this a good thing. But some times I feel like I got cheated! I was told that she'd be more like a baby for a longer period of time. I was told that she would be slow to develop and slow to reach milestones. Well, in this instance, that's totally out the window. Where's my baby? My child? She's just 2 inches shorter than me too! No fair!

Yes, she is maturing, but while she's testing the teenaged waters, she still keeps one foot firmly in childhood. She still loves the Disney Channel. She still plays with her doll house and Webkinz. She self-talks with Woody and Buzz Lightyear. She adores coloring books. She uses these things to relax. She works hard at learning and doing, and then she wants to have her version of zoning out. She doesn't just want it, she needs it. We all do (Hello Facebook? Solitaire? Blog reading?) . It's our re-charging time.

These things are not bad; I'm really not complaining. It's just different--bridging the span of preschool interests all the way to hormonal mood swings.

It is just odd.

And there are few navigational charts to help me steer the ship. She's a mystery.