Life According to the Mice of Solebury

For those who don't know, I have two cats, Minerva and Max.  Both are adopted.  I adopted Minerva in 2001 from the ASPCA after my beloved cat Puka passed away.  Max was adopted in 2009 from the MSPCA in Massachusetts after I had my first apartment for a month and decided I needed a cat.  When you grow up with at least one cat around all the time, it can be hard to imagine life without one.

Max sitting in the window in Cambridge.

Prior to Max, all of the cats were indoor/outdoor.  They could come and go as they wanted, but generally spent most of the time indoors.  Until very recently, Max was indoor only.  Living in Boston and Cambridge in an apartment building isn't really a good place for an essentially free roaming cat.  However not long after I moved home in September, Max decided to venture outside.  The first time since moving home he was gone for a day and a half, which really scared me.  After that, it wasn't long before he was catching mice, bringing them in and playing with them.  Poor Max must be so bored if he is bringing in his own "toys" to play with.  

This morning I came downstairs and heard Max meowing.  He likes to talk, so I just figured this was his usual, "Hi Mom.  Good Morning.  How are you?"  Once I found him, I learned what the commotion was all about.  About a foot from him there was a ball of fur, a tightly curled up vole.  Max's response was almost like, "Look at that, he just wandered in.  Honestly, I have no idea."  Poor thing.  After Max tried to play with his new "friend", I went to the closet for a broom.  "Max, playing only works when the two participants are equally engaged, not when one is petrified of the other."  I was able to scoot the vole to the opened front front door, unfortunately, he ran under the closet door and Minerva saw him go under.  After that, Minerva crouched by the closet door for nearly 40 minutes just staring at the crack.  Poor thing.    

Max is meowing again...wonder what this means...

I'm trying to get my picture of Minerva, but it's not working very well.                  

Beethoven's Ninth Symphony

The end of last month was a lot of fun.  Not only did I attend my third Child Life conference in a row, but was also able to cross something off my Bucket List; #8.  Some may view the fact I have such a list as morbid, but I look at it as motivation.  I do have Mitochondrial Disease, but no to worry, I'm not going anywhere soon.  I also could be hit by a bus on the way to the Allergist today so I want to make sure I do or at least aim for many of the things on this list.  While it currently has 38 items on it, there is no rule anywhere that says I cannot add to it as I see fit.  In fact, the last one just came to me a few seconds ago.

1. Touch an elephant
2. Sing Handel's Messiah in a chorus
3. Attend a taping of Saturday Night Live (New York City)
4. Go to the Kentucky Derby 
5. Give life (donate blood, bone marrow, have a baby)
6. Go to Ireland
7. Visit Beethoven's grave (Vienna)
8. Attend a live performance of Beethoven's Ninth Symphony, preferably in Symphony Hall (5/24/11 in Philadelphia with the Philadelphia Orchestra.)
9. Go to the hairdresser and give them free reign 
10. Go to a fancy occasion without my feet hurting
11. Get a job as a Child Life Specialist
12. Go to the World Series, preferably, in Boston ;).
13. Attend a performance of The Holiday Pops in Boston (12/20/10)
14. Go on a cruise
15. Serve as an extra in a movie
16. Read two books a month for a year
17. Complete a 5k Walk
18. Go horseback riding, again
19. Take ballroom dance lessons
20. Perform Moonlight Sonata, again
21. Swim in the world's largest swimming pool (Chile)
22. Visit a rain forest 
23. Go to Australia
24. Go rock climbing, again
25. Go skiing, again
26. Ride on the Orient Express (train)
27. Sleep in an overnight train
28. Ride The London Eye, again
29. Name a star
30. Visit The Four Corners (UT, CO, AZ & NM)
31. Take a shower, or at least wash my hair in the rain
32. Reach 20 followers on my blog
33. Be recognized for my blog
34. Distribute Halloween candy (yes, I have never done this)
35. Watch the pony swim from Assateague Island to Chincoteague Island
36. Visit Hollywood Walk of Fame
37. Attend a live performance of Mahler's 8th, Symphony of a Thousand
38. Be involved in a clinical trial

On Tuesday, May 24th, I had an appointment at CHOP and after that we met my dad at The Ritz where we would be staying that night. (The Ritz isn't our normal.  However, because my dad has so many travel points from work it was better to use those than traditional money.)  We rarely stay in hotels in cities that are only an hour and a half from home, but that night we had to since my dad was driving from Pittsburgh which is six hours west and I would be leaving for my conference the next morning, or so we thought (different story).  

After we got changed in the hotel for our night out, we ate dinner at an interesting restaurant that had Thai, American and Japanese cuisine.  There is a specific term, but I forget what that is.  We then walked to The Kimmel Center for the Performing Arts which houses The Verizon Center, home to The Philadelphia Orchestra.  

(Kimmel Center from Broad St., aka Avenue of the Arts)

(Outside Verizon Hall within The Kimmel Center)

The performance itself was two symphonies separated by an intermission.  The first symphony was Symphony of the Psalms by Igor Stravinsky.  This symphony was commissioned (written for) the Boston Symphony Orchestra in 1930 to celebrate their 50th anniversary.  Unlike most symphonies, this was composed in three movements.  I studied this composition in more detail as a Music minor at Simmons College.  During one of my Music classes I attended two BSO performances at Symphony Hall in Boston; same place I attended the Boston Pops in December.     

After a brief intermission, the true magic of the night began.  I don't remember when I first heard Beethoven, never mind fell in love with his work.  I can tell you that nearly everyone has heard the very basic elements of his most famous work; The Ode to Joy.  I have even heard it used with television commercials.  I cannot describe every note of this glorious, adrenaline pumping piece of music, you'll have to do that yourself ;).  I highly recommend this recording, performed by The Philadelphia Orchestra, led by the great Riccardo Muti who is not only my favorite ;), but transformed the orchestra as a whole.  Muti is my favorite because he was with the orchestra when I was young and therefore had a strong role in my love of symphonic music.  (Don't worry, you can listen to Beethoven's Ninth on iTunes with their small snapshots, but that's nothing compared to having the whole thing and turning up the speakers).  

I would describe Beethoven's Ninth to an extent, but that could easily turn into a major undertaking, not only because this is easily my favorite piece of music ever written, yes ever...but also because my perfectionistic self would take over and my attempt at a "brief" description could easily turn into something comparable to a dissertation, complete with references.    

    

  

The interior is shaped like a cello allowing for optimal acoustics and for all of you who have ever sung in a chorus/choir, see those red seats below the organ, yes, you guessed it.  Unlike most situations, in Philadelphia, the choir gets cushioned seats; not risers.  So singers get to sit, yes, sit when appropriate, not stand for what seems like eternity.      

 I do have my own pictures, but those are on my parent's camera.  I will add those when I get them.

Holiday Pops!!

Last week, I crossed #13 off my List, Attend a performance of the Holiday Pops in Boston.  I was really hoping to attend it with Chelsea and Keith, two of my good friends.  I met Chelsea through other friends with Mitochondrial Disease.  Keith is her husband.  Despite having to go on my own, the concert itself was a lot of fun!  Shaquille O'Neal made his conducting debut and the final of the three pieces he conducted was the best and hands down, the most unexpected, We Are the Champions, by Queen.  The Boston Globe wrote a brief article about the cameo.  I typed "shaq conducting" into Google and I got over a full page of results.  NPR even reported on the event.  While I was disappointed my friends couldn't join me, I was proud to be part of this unprecedented performance in Boston Pops history.  

Keith Lockhart (Pops conductor) and Shaq on the conductor's box.

(Photo found through Google Images.)

Shaq conducting

(Photo found through Google Images)

While Shaq was the spectacle for many, I simply took pleasure in being in Symphony Hall home of the Boston Symphony Orchestra and Boston Pops, once again.  I think I have been about five times, two were for one of my music courses I took as part of my music minor at Simmons College, also in Boston.  I attended the symphony for the first time in Philadelphia when I was about 6 years old.  Boston is known world wide for classical music and music education.  Both the Boston Symphony Orchestra and Boston Pops have pieces written specifically for them.  They have also performed many world and national premiers throughout the years.  Tanglewood, Massachusetts is the summer home of the orchestra and the Tanglewood Festival Chorus is its namesake, the official chorus of the BSO and Boston Pops.  The best part for me was the sing along because I (and the rest of the audience sang with the chorus, SO cool!!  I will certainly remember this night for a long  time to come.  

I did take my own pictures, but I will post them later.  I found and posted these because I figured Google likely had better pictures.  

Such is Life in the Boonies of Boston Without a Car

I go to Spaulding Rehab Hospital in Boston about twice a week for outpatient PT and now OT.  If my first appointment is at 1:45 or 2:30, I have to take the 12:30 bus.  Thank goodness for my Kindle!  From my building to Spaulding takes about 45 minutes, which includes the bus, a subway and another subway.  The appointments are 45 minutes so if there are back-to-back it's easier time wise, but kind of repetitive since a break and change of scenery would be nice in between.  It takes longer to get home because instead of waiting for the bus at home, I'm waiting for it in a cold bus way at Harvard Station.  I have waited anywhere from no time to 40 minutes for the bus home.  Thank goodness it's not terribly cold yet.  With the commute and appointments, I could easily be gone for 5 hours.

As far as things go on the Child Life front, I just called the CLS at Boston Medical Center.  I meant to do it earlier in the week, but since I usually don't get home before 5, I didn't think she would still be there.  Tonight I left her a voicemail with my email so hopefully she will email me since my schedule and phone tag don't mix well.  I heard back from Cohen Children's in NY and will sent my application along as soon as I finish this essay.  I am waiting for my second recommendation letter from another CLS at CHB to arrive in the mail so I can send my application to Connecticut Children's.

As far as things go regarding my Baclofen pump, my doctor got back to me last week and increased my dose by 20% on Friday.  I haven't noticed a change and my doctor said he could adjust it in PT this week, so I'm not sure how that will work since my therapist doesn't think he can actually do it in the PT area, so who knows.  I see him on the 10th for a refill, so I can certainly wait if an adjustment can't be don't tomorrow.

Results of Baclofen Trial

Sorry for the delay.  I was tired after the Baclofen trial and left soon after for Pittsburgh, so I didn't really have time to update.  


After about 10 years, I feel like I found my legs again.  I had the trial at MossRehab in Philly.  The procedure went well although I would have preferred to be less aware than I was.  I wish they had sedated me more so I would be in a sleepy zone and not feel everything from the prep with iodine to the local to the big needle.  I did get 1mg oral Ativan 2.5 hours before going to the OR, which I hoped would work, but did not.  

Now comes the harder part, deciding if I want the implantation surgery in Philly or Boston.  When I saw Dr. L at Spaulding earlier this month he said the only hospitals that really implant Baclofen pumps in Boston are BMC and Brigham.  I don't want it at BMC because I have never set foot there.  Brigham could work because I have seen two doctors there and been to their ER once.  In Philly, my choice is Thomas Jefferson University Hospital, but I have never set foot there either.  As far as the issues concerning Mito and surgery go, there seems to be more of a general awareness of the disease in Boston compared to Philly.  I also have many supportive friends in Boston with Mito who are more understanding of the disease than my own parents which is a big pull.  

I emailed Dr. L, my great mito doc at CHOP (in Philly) and Dr. S, my mito doc at MGH (not to be confused with Dr. S and BI) asking their opinion.  Dr. L doesn't have a preference and Dr. S thinks I should seriously consider Brigham.  I feel I am also pulled towards Brigham since I am currently living here and so pre-op testing and appointments would be really easy to do compared to going back and forth on the train to Philly for the same thing.  

For now, I will schedule the initial appointment with the neurosurgeon in the respective cities.  Even though I haven't chosen a city/hospital yet, I feel I need to get the process going and then choose once things come together to determine where I will be living come September.  

The Hopeless Romantic

This post is not about me, but rather my cat Max.  I adopted Max from the MSPCA (the ASPCA, but in Massachusetts) last October.  

(Nov. '09)

Our studio faces Park Drive while the end of the hallway faces the rear of other buildings.  The hallway is essentially straight except for a "kink" about halfway down.  There is a female cat in the apartment at the far end of the hallway.  I have seen her, Fawn my roommate and good friend has seen her, but I doubt Max has.  Almost every time Fawn or I try to leave the studio Max runs out and sits outside the other apartment.  So far he hasn't tried to enter the elevator so whenever I have to go downstairs quickly to do laundry, check snail mail, or pick up delivery, I just leave my door open because that it easier than wrestling/coercing/startling him back into my studio.  (Of course when I leave the building I make sure he is in the studio and not roaming.)  Sometimes he is back in our studio by the time I return, but other times he is laying perfectly calm and content just outside his "girlfriend's" door.  Fawn and I refer to the cat down the hall as his girlfriend because by all accounts you would think they were friends, except for a tiny problem, they have never seen each other.  And so until they do, he will be a hopeless romantic.

(I have many more pictures of Max on my phone, and I will try to post them here as soon as I can figure it out ;)).

Back in Boston

I returned to Boston last night after about two weeks at home in PA. While it was nice to be home, it was a reminder that I am not a suburbia type of girl. That said, I need to find a way for me to stay in Boston, which means a job. Finding a job is rather daunting, especially in these times and my lack of paid job experience. I have been volunteering and in school for the past five years.

Perhaps the first thing I should do is update my resume to include my new membership into the Child Life Council. I also need to pick up my degree from Simmons College. I feel rather lame for still not having my hard earned diploma after graduating over a year ago. I also need a copy of my unofficial transcript so I can look up my GPA and start looking at Child Life practicums/internships.

I also need to find an apartment because alas, my current made-for-me-studio was only a one time deal since it is too expensive for me to keep for another 12 months. My lease ends 8/31 and I will truly miss my first apartment because it is in the same area I lived in when I was at Simmons.

Yesterday I finished Handle with Care by Jodi Picoult. The ending was not as depressing as I thought it would be. I could have finished the book last week, but I thought I knew the ending based on her previous books and I did not want to finish it for fear the ending would depress and enrage me. I was pleasantly surprised and proud of the author for not ending it in the way she had My Sister's Keeper or in the way I thought. This book does not count toward the 10 I aim to read this summer since I started it long before summer began. This book was however the first of many I will read on my Kindle.

This afternoon I looked through The CLC Directory of Child Life Programs and found 8 Child Life practicums from Boston to DC.  The hospitals offering practicums are Yale-New Haven Children's Hospital (CT), Children's National Medical Center (DC), Alfred I. duPont Hospital for Children (DE), Shriners Burn Hospital Boston (MA), Joslin Clinic (MA), Floating Hospital for Children (MA), Children's Hospital of Philadelphia (PA) and St. Christopher's Hospital for Children (PA).  


Internships are more common than practicums because the hours count towards certification, but my plan is to    complete a practicum, then I will have a stronger resume and be more well rounded when I apply to internships the following "semester".  Unfortunately, I have to email most of the institutions because they don't provide enough if any information on their website.  


I also need to look at jobs at the same time, because I need to have a purpose if I am going to stay in Boston.    The deadline for the winter "semester" is September 5th so I need a job so I have something to do if I don't get into a practicum.  

Arizona, an Appointment and Child Life

Sorry for the delay, it has been a crazy past few days.

At last update I was getting ready for my trip to Arizona for the annual Child Life Conference. As I registered for the event, I saw that there was still room on tour of Phoenix Children's Hospital and I registered. As I prepared to get off the bus, I slipped, skipped three steps and smacked my head on the sidewalk. I felt a bit off after I hit, but was able to get up, walk to the nearest bathroom and survey the damage. I got a big hit to a forehead and another to my chin. I took 3 Motrin right there in the bathroom because I knew I was in for a MAJOR headache. I forget who, but someone there suggested I visit the ER just to be sure that everything was OK. I gave in, but knew in my heart it was the right thing to do.

Long story short, about an hour after getting settled in the ER, I started feeling sleepy and "out of it". I also vomited clots a couple times. I got an IV for Morphine, Zofran and fluids. They also put me on the monitor so everyone would know if I fainted or something. I don't remember much about the head CT except for shouting, "My head hurts, my head hurts" repeatedly. The child life specialist who accompanied me to the ER stayed with me until 6pm when another came to my side. I was surprised and relieved that a CLS stayed with me for so long even after my mom arrived ~3 hours post fall.

I was admitted to the PICU for the night. I had normal saline and D10 flowing through my veins. (I told them I had Mito at triage and told them I would need D10 after I vomited the third time, and they believed me!! I was so relieved. They also called my neuro/mito doc's office and spoke with my MD's fellow!! What a concept! Way to go Phoenix Children's.

I was feeling much better the following day and was discharged around noon. Thankfully, I was able to attend most of the conference the following day and one of the event coordinators registered me as a student member of the Child Life Council which enables me to use a lot of their exclusive member only features on their website, which is a BIG PLUS for getting all the guidance and support I need from the council.

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On Monday, I saw one on my doctors at MossRehab in Philly. I have had severe spasticity in my left foot and toes since my second stoke in 2001. I have tried three oral meds, Botox A and B as well as acupuncture, but none of these has provided adequate relief and so we are exploring the option of a baclofen pump which essentially delivers a liquid form of the oral med through a pacemaker sized pump in my belly or low back. Oral (tablet) Baclofen works OK, but not very well with my spasticity. Before going ahead and surgically implanting the pump, I need to get a test dose to figure out if this entire idea is even an option for me.

I will be admitted for pre-test dose festivities ;) on July 12 and go into the OR for the actual administration of the test dose on July 13. On the 14th, the test dose will work it's way out of my body and I will be back to baseline by the 15th. Depending on how the Baclofen test dose makes me feel, I may or may not decide to progress to the next step which is neurosurgery, yes neurosurgery at Thomas Jefferson University Hospital to implant the device.

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If you recall from my last post, I was going to meet with the Director of Child Life today from St. Christopher's Hospital for Children in Philadelphia. The meeting went alright, but I did not gain anything from the experience apart from meeting another Child Life Specialist. What was echoed perhaps silently during the meeting with her was that my next step will be to apply to practicums. I am not sure how many I will apply to but I'm guessing between 5 and 10. I also feel it is important to visit the hospital I am interested in so I can attach a mental image to the institution. I will have a better idea of how many practicums I will apply to once I return to Boston and look through The Directory of Child Life Programs published by the CLC. Unfortunately ther is no uniform curriculum for practicums/internships set by the council. Each hospital has their own program.

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Every summer I set a goal for myself to read 10 books from start to finish. My first book is The Female Brain.