4/28/11

Easter Eggs, Coffee, Patterns, & Matter

This is sure to be a mash up post, just because I need to catch up on the last week or so. After the Boston trip we were all exhausted, not to mention we're full speed ahead trying to figure out where we're going next.

Easter

We've made some wonderful new friends here, both Christie at work, and with a local homeschool group in Lebanon, PA (about 35-40 minutes from Harrisburg). Mark & Stacy Foley head up the INCH group, and they've been so helpful in getting us acclimated to the area, introducing us to the best restaurants, and making us feel welcome. We contacted INCH before we made the move from Fayetteville and were able to get plugged in the very first week of our arrival with field trips and play days at the Lebanon YMCA. They've been life-savers, and we've really enjoyed their family - I'm sure we'll stay in touch long after we've moved from here.

The boys dyed Easter Eggs Saturday morning. For some reason, this tradition has been a bit hit and miss for us over the years (we celebrated Passover when Rich was younger, such a huge production that it kind of over-shadowed the Easter Bunny).



We headed for the Foley's that afternoon, eggs and Yu-Gi-Oh cards in tow. Mark treated us to an INCREDIBLE meal of Portugese pork, fresh spinach, potatoes, and some yummy gravy. I could learn a few things from him. They have the coolest house in the world. It's late 18th century complete with a barn in the backyard. They think it originally some type of way-station or boarding house because of the many rooms, and the way it's split up. When/if we buy something, I hope we can find a place like this.


I don't know if the kids had more fun hunting for Easter eggs...




Or making the grown-ups hunt easter eggs...


We had a blast! Awesome food, awesome people. Check out the Foley's varied and usually hilarious blog here: http://sushiandpizza.blogspot.com/

Art

I feel like we're really zoning in on utilizing the boy's interests to teach other subjects lately. We've spent quite a bit of time lately focused on science and fine arts, which they are both very enthusiastic about. They'll speed through their maths and literacy work to have more time for the other stuff, so it also serves as a good motivator.



In art this week, we worked on some basic perspective (the monster is IN the water, not ON TOP of it). This was also a good chance to experiment with monotone painting. They could only use blue and white, and various mixtures of the two.


(Rich)

(Brennan)

Here's an experiment using only secondary colors (blue, red, yellow). They thought it was hilarious to be able to paint the sky red, the grass blue, or the trees yellow. We have so much fun with art because there are no wrong answers, and everything is allowed to be "ishy." This is the term we use for abstract shapes that don't come out exactly like they look in real life. Ishi-ness is such a freeing idea for them when creating, because they don't have to conform to anyone's rules about what looks good or bad, right or wrong. Hopefully this idea seeps into their thinking about other subjects so that they're able to approach problems in non-traditional, creative ways. Here is their interpretation of the grassy hill across the street from the apartment.


(Brennan)

(Rich)

If you're a regular reader, you know that I cannot over-emphasize the importance of quality art supplies (a trait I picked up from Lori over at the Camp Creek Blog). The boys have been working with pro-grade acrylics and cold-pressed watercolor paper. The paint lends itself to whatever texture they want, and as a result they're learning the nuances of thick and thin lines, and have lots of control over how their strokes translate to the paper. The paper is also absorbent enough to handle as much paint as they want to apply. This gives them total freedom to make really bright or dark colors. Thin paper and cheap paints force you to load the brush up with faint color and soak the paper. It tears, it runs, and it doesn't turn out the way you wanted, which make a kid resistant to repeated attempts. My advice: If you're going to go over your homeschooling budget anywhere, do it with art supplies. It pays off in the long run in every other area.


Crimson Frog

Despite an onslaught of allergy colds, we finally made it to the Crimson Frog Cafe in Camp Hill, PA yesterday for breakfast and maths. One of the fun things about living in a new place is trying to find the bookstores and coffeehouses that are friendly to homeschoolers. We tend to buy one thing, then sit there and work for four hours, which some places don't appreciate. So far, we love Midtown Scholar and Crimson Frog because they don't mind at all.


Science

Finally, Brennan has just finished a science unit on patterns, and Rich on states of matter. They both chose to do a small video presentation as their final project. Here they are:

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4/18/11

"ROCK 'N ROLL BAND, EVERYBODY'S WAITIN', GETTIN' CRAZY, ANTICIPATIN'..."

Okay, I would have preferred to use an Aerosmith or Extreme lyric, but I was shooting for mainstream appeal.

Ahem.


There. Got your fix of Boston music? I feel better anyway.

Wednesday

Not much to tell. We arrived without event in Chinatown around 6pm, checked in at the Double Tree across from Tufts, and ate at Empire Garden on Washington Street (It was not good. This is not the Dim Sum experience you're looking for.)

Thursday

Quick breakfast at Au Bon Pain inside Tufts, then back and forth across the street for a few hours for tests, appointments, etc. (detailed in the preceding post).

Afterwards grabbed a taxi over to the harbor for an early dinner at The Barking Crab. Awesome Dungeness crab legs, Irish Cider, and fish n' chips for the boys. Great vibe at this place, across the bridge from the Boston Tea Party tour (which was closed for renovation) and the Boston Children's Museum (to be explored at a later date).

Friday

This was our big exploration day. We took the T from the hotel to Aquarium Station. Quite an experience for the boys.

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We grabbed a BHC cruise at the Long Wharf to go whale watching. Alas, it was a rough ride out into the Bay, it was freezing cold, and there were no whales in sight. We got a rain check for next time and despite Christie and Brennan succumbing to sea-sickness, we got a really beautiful view of the Boston skyline and the Bay.


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Afterwards, with every one a little queasy from the boat ride, we walked over to the North End and took a short tour of Paul Revere's house. Of course, he lived in many places, and many other people lived in this house through the years, but this was were he resided when he made his famous Midnight Ride.


The North End is my favorite area of Boston. There are actors walking around dressed in Colonial Era garb and speaking Olde English, tons of incredible places to eat, cobblestone roads, old churches, and fascinating architecture. We ate at Genarro's, across from North Square Park by St. John's. It was honestly the most authentically Italian restaurant I've eaten in since living in Italy. Prosciutto and Gorgonzola Panini, Lasagna Marinara, Ravioli and Clam Chowder.



We turned a corner and found Hanover Street where I wished I hadn't eaten so much at Genarro's . Hanover was lined with every kind of bakery and candy store you can imagine. We cut across North End Park to the Haymarket T station as the day got colder. Had it been warmer, I'm sure we'd have stopped at several places, but the wind was brutal and we just wanted to be inside.

We caught the train to the Financial District where the Old State House sticks out like a sore thumb against the modern skyscrapers. This is the site of the Boston Massacre, where a street fight between colonists and a British Soldier escalated into the first bloodshed of the American Revolution. The English government held offices here prior to the revolution, and it housed the first Provincial Congress following the outbreak of war with England.




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The North End is busy and beautiful but the architecture in the Financial District (toward the end of the clip) is equally awesome and obnoxious.

This is really the building where the Revolution itself started. Here, James Otis delivered a four-hour speech in 1761 railing against the Writs of Assistance - a blanket search warrant that allowed Officials to search private property without causation. It was the first public denunciation of Britian's control over the colonies. I bet he'd have a few things to say about the so called "Patriot Act." But I digress...

We were pooped, but there was one last place we HAD to go. Back on the T for a crowded rush-hour ride down to the Braintree Mall so we could surprise the boys with their first visit to the...
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Dad geeked out a little bit too. They had a display model of the Tantive IV (Leia/Cpt. Antilles ship from Star Wars Episode IV) that had me drooling a bit.

We did one of those big-city-run-to-catch-the-bus-as-it-drives-away things and had to wait 45 minutes in the cold for the next one. We passed the time chatting with the Bostonians at the bus stop. Have I mentioned that Bostonians are the nicest people in the world? Don't believe the hype - we had four or five good Samaritans that voluntarily pointed us in the right direction throughout the week, without which we would have run late to everything the entire time. Bostonians = awesome.

Saturday

We left early for Concord with the goal of catching a glimpse of the Bloody Angle reenactment. This was the battle that took place between Concord and Lexington after the "shot heard 'round the world" at Concord's North Bridge. The British were retreating back to Boston and got caught in a crossfire between the two towns. We got lost a LOT and ended up accidentally finding the best spot to watch from. The battle went on for close to 20 minutes and most of it was right in front of us.

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It was freezing cold, so we walked around a bit and talked to some of the soldiers and a colonist who, after finding out we were from Arkansas said, "I know not of this place." We eventually succumbed to the dropping temperatures and headed home. It took us 5.5 hours to get to Boston, but 9 to get home - apparently we drove through one of the worst storms in recent New England memory. It followed us from Concord all the way back to Harrisburg and Christie drove the whole way, white knuckled but holding it together well. Here's her on the Bronx Expressway in NYC at 5pm. Fun for the whole family!

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Hypertrophic Cardiomyopathy

Boston. Finally! It's been a year since Christie and I were here, but it was the boy's first trip. It holds obvious appeal to us because of Tufts Medical center, which is the Mecca for HCM research. Dr. Marty Maron heads up the most cutting edge clinic for Hypertrophic Cardiomyology, and most cardiologists defer to his HCM expertise, or his father's research (Dr. Barry Maron who practices in Minneapolis, MN). He works closely with the HCMA and is heavily involved in patient advocacy for the disease.

Obviously we were anxious to have the boys screened for HCM via echocardiogram and EKG. They've both had these before at younger ages, but the tests were done in a general cardiology clinic at a time when the technicians weren't very versed in the nuances of HCM. Thankfully, this is changing as HCM gets more press coverage due to its dramatic impact on athletes. Maybe sports DO actually have something productive to offer the world.

A million questions cross our minds: Do Richard's recent bouts with shortness of breath and fatigue indicate early onset HCM? If one of the boys has it, will it present with the same severity as mine? How would diagnosis affect their lives - sports, hobbies, career, children of their own? These are typical questions for HCM parents that just pile stress on top of dealing with your own illness. Rich is old enough to understand these fears - he knows why Dad can't coach the soccer team, take him camping, swim in the deep end, hike, bike, or wrestle for very long. He sees me endure weeks at a time of near crippling fatigue, nausea, and knows my longing to be more active, to play drums and and run with him in the park. He carries a lot of weight at home when I have bad reactions to new medicines, or simply have a bad day. He's old enough to see how his life might be years down the road.

We've tried to be as optimistic, yet realistic with him as possible. Yes, there is a chance you will inherit HCM. No, it doesn't mean you can't have a full life. There are adjustments and struggles, but there are others who are worse off. Ultimately, it has been an opportunity to teach him to cherish each day he can run, play, and revel in his freedom, both as a child and as a healthy person. We try very hard not to live with a cloud of doom hanging over our heads, but as we headed for Boston, a parent can't help but consider the worst case scenario.

We were relieved that no signs of HCM were visible on the boy's test. Dr. Nickh (the pediatric cardiologist) wants to see them both back in a few years. Echocardiograms and EKG's will become a normal part of their life by the time they are teenagers - they'll need to be tested every year. The fact that no HCM shows up in these tests right now doesn't mean they won't develop it in the future - they are only snapshots of what's happening right now. It's great news that there is no development at this young age, but statistically, HCM rears its ugly head in the late teens to late 20's. Who knows what type of treatments will be available by then?

Another benefit at Tufts is the affordability of genetic testing for HCM. Genetic testing involves drawing a blood sample from an HCM patient, and testing the DNA markers against blood relatives. These tests can cost up to $4000 for the initial patient, and up to $2000 per relative, and insurance usually covers none of this. Tufts has worked out a deal with most insurance providers to consider this a "normal" test, only costing the patient the price of a typical co-pay. Hopefully other HCM clinics across the nation will soon follow suit. I had blood drawn, which will yield results in a few weeks. Sometimes, no markers show up (researchers have yet to identify all existing HCM markers). Dr. Maron feels that my mutation of HCM is so unique that there's a good chance of markers being present. We can then test these markers against markers in the boy's DNA. This should allow us to determine whether the boys actually have HCM or not.

Even if they do, it would not necessarily mean they need to be medicated yet. HCM patients do not take meds to treat HCM - they take them to deal with symptoms caused by the heart's malfunction (blood pressure, circulation issues, etc.). So only if the symptoms of HCM interrupted their daily life would medication be recommended - some HCM patients are on very little or no medications whatsoever.

Either way, we can at least breath a little sigh of relief for now.

As for me, my situation has changed little. Last year when I had a heart MRI and Echo at Tufts, I was experiencing rapid ischemia (muscle death). The rate of this deterioration alarmed both Dr. Allen (my Bentonville cardiologist) and Dr. Maron, particularly since my condition had remained largely unchanged for ten years. Medications are no good in this situation, other than to stave off the inevitable water retention associated with diastolic heart failure. It was at this point that Dr. Maron explained that the only "fix" for such an aggressive mutation of HCM, is a heart transplant.

By the time we made it to the HCM clinic in St. Louis last summer, the ischemia had stopped, and the disease had once again plateaued. This is a good thing, but it leaves me with very little muscle mass to pump blood and oxygen to the rest of the body. The transplant physician in St. Louis (Dr. Joseph) and Dr. Maron both agree that if the disease accelerates rapidly again (as it has twice in my history), I will need to be placed on a transplant list as quickly as possible. In other words, there's very little muscle left to deteriorate. For this reason, Dr. Maron wants to monitor me every 4-5 weeks while we are in the New England area. I can also be seen at Barnes Jewish in St. Louis for checkups if need be. All my other tests will be kept up to date as much as possible so there are few obstacles to listing me for transplant when the time comes. In the meantime, we'll be adjusting meds to fight the edema (water weight) and keep the functioning muscle relaxing, and blood pressure at a normal level).

Here's what this comes down to for all of us: We are choosing to live our life and soak up everything we can, while we can. As my mom says, "There's a huge mountain to climb, and we know it's coming." We are trying to navigate the foothills right now. It's tough to balance living a "normal" life with preparing for such an abnormal interruption of it. Hopefully, this also serves as part of the boy's education. They don't realize it now, but maybe when they're older they'll see that we didn't let our limitations keep us from adventure, and that sometimes you just have to take risks and do what makes you happy. I hope they also see that we've not done that without counting the cost and trying our best to prepare for the future. There's a balance, and I'm not sure we've struck it just yet. But we're getting there.

(Pssst! For more information on HCM check out our friend Lisa Salsburg's awesome site)

4/5/11

Fun in Philly

We made an impromptu trip to Philadelphia Monday. Obviously you can't do Philly in a day, so we decided to hit the Independence Mall and possibly the U.S. Mint if there was time (we *just* missed it).
We got lost once we left the highway, noting that our TomTom GPS has a disturbing affinity for ghettos, slums, and industrial areas. After an inspiring inner city, self-guided tour (including new Vocabulary Words, a short graffiti art lesson, and a demonstration of how to pee in a dumpster), we called Gramsy, who helped us poor smartphone-less people get headed to the correct address.

First up, the National Constitution Center.
Although the Constiution and Declaration of Independence now reside in the National Archives in D.C., Philadelphia is where both documents were revised, signed, and officially adopted by the Continental Congress. The Constitution Center had a great multimedia presentation about the creation of the Constitution, as well as one of the first public copies of the document. There were costumed actors and rangers walking around answering questions in the Visitor's Center and around the Mall.

The boy's favorite display was the hall of signers, featuring full sized bronze statues of all the signers in the same room. You can also "sign" the Constiution alongside all the existing signatures. Rich has become quite a fan of George Washington, Ben Franklin, Thomas Jefferson, and Samuel Adams from watching Liberty Kids and the many books we've been using for U.S. History lately. The park ranger was impressed that he was looking for Samuel and John Adams, and explained they were in London and New York when the Constitution was signed.

With George Washington


With Ben Franklin

Making sure Andrew Hamilton is the real deal

Lunch was Philly Cheesteaks and Hotdogs from street vendors while we watched the horses, buggies, locals, and field trips moving up and down Independence Avenue. Gotta each a cheesteak in Philly, right?

Next we toured Independence Hall (known at the Pennsylvania State House to the colonists). We saw the room where the Declaration was signed, and where the Constitution was re-written and re-vised multiple times. The building retains 75% of the original woodwork and 90% of the original brickwork, and there are several chairs, quills, etc. that are original. The coolest thing was seeing Thomas Jefferson's walking stick, and the chair George Washington sat in during these proceedings.

Adjacent was the building where the U.S. Government resided for ten years while Washington D.C. was being built. This is where the first transfer of power from Washington to Adams took place, as well as the birthplace of the Bill of Rights/Amendments.

Finally, the Liberty Bell. Rich had tons of questions for the park ranger, who gave them Founder's collector cards if the kids could answer questions about the Founding Fathers.




We took Mom to Ardmoor (about 10 minutes down the road) for her Anniversary present - a massage at Massage Envy. The boys and I hung out at a nearby park, then went shopping at Whole Foods until Mom was done.

Then it was back downtown to eat at The Tavern. Authentic Colonial era decor, costumes, and food. We ate by candlelight, drank from pewter tankards, and enjoyed awesome New England and Dutch food. The building has been renovated multiple times but the location was a haunt for people like John Adams, Ben Franklin, James Madison, and Samuel Adams between politicking at the nearby Court and State House.

(Can you tell I'm worn out here?)

Great trip, but too short. The neighborhoods and restaurants downtown deserve more exploration, and we'd like to see the Mint and Ben Franklin's house. Next time!