Week of Freedom...sort of...

This week I start outpatient PT and OT at Spaulding Rehab in Cambridge, which only involves two buses, not a bus and two subways.   My evals are on Wednesday which means I don't have regular PT or OT this week.  I still have to catch the same bus at 12:30, but the total time from door-to-door including appointments and waiting for the bus home should hopefully be less than 5 hours.  

As far as things go on the Child Life front, I have yet to hear from the CLS at Boston Medical Center.  I will try again after publish this post.  I finished Cohen Children's in NY's incredibly easy application and will sent that out as soon as I finish the essay.  I know I keep talking about  it. but it's one of those requirements that is really vague and as a result, I find myself avoiding it.   For Connecticut Chilldren's, I finished their application, but still have two or three essay-type questions I need to work over before they feel right.  I addition to these details, I also need to send along my transcript from Simmons College, my resume, list of goals, and my letter(s) of recommendation.  


As far as things go regarding my Baclofen pump, my doctor refilled it last week, increased my dose by 8% and added a single 50mcg bolus which seemed to lessen my spasticity a tad.  I'm  hoping for another increase sometime this week if another doctor is willing since my doctor will be out this week.  Dose adjustments require a trip to Boston, but I can handle once or twice a week.  I also hope to get back to volunteering at Children's Hospital Boston this week.  I could have easily returned about three weeks after my surgery, but I got lazy with things and kept running into deadlines.  I was also hoping to  make my return free from spasticity and be on the cloud 9 I was on during trial day back in June, but alas that has not happened, but we are hopefully getting close.  


In other news, my cousin, Stephanie recently published her first book, Whispers in the Soul.      Another friend of mine is making Christmas ornaments to not only go towards research for Mitochondrial Disease, but most importantly to raise money to keep her current lawyer so her third child can be returned to her care because Canada thought she was making her children sick, not Mito.

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.

General Update and Maine Tomorrow

Today is August first which means the lease to my very first apartment ends in 30 days.  I received two leads from a wonderful realtor who finds roommates AND apartments.  The first was too far away, while the second had a weird layout and I didn't get a good vibe from it.  My expectations are much lower this year since time is not on my side and my budget is much lower.  I was going to meet with someone I found on Roommates.com today, but she had to work so we will have to meet when I return from my vacation.

Things have been slowly progressing on the Baclofen pump implantation front.  In Philly, we need to schedule the intake appointment at Jefferson (neurosurg, anesthesia, and pre-op tests).  I need to do the same in Boston at the Brigham, but I am rather hesitant since after multiple messages, I have yet to hear from Dr. L at Spaulding to get the OK to proceed with implantation surgery.

I have made progress in the Child Life practicum/internship department!  So far I have applications for and am planning to apply to the practicum at Yale-New Haven Children's Hospital, Alfred I duPont Children's Hospital (in Delaware), Children's Hospital of Philadelphia, and St. Christopher's Hospital for Children (in Philly).  I also have the internship applications for Bristol-Meyers Squibb Children's Hospital (in NJ) and Hershey Medical Center (in PA).  I am slowly and steadily working on these applications as I contact other hospitals for applications.

I leave for Maine tomorrow.  My mom and dad spent the night here in my apartment and I will sleep on my futon.  I have been going to Maine for about as long as I can remember and you can bet I will bring my laptop along so I can blog while I am there.

Interview, Spaulding and Volunteering

Yesterday morning I had an interview for the Patient-Family Advisory Committee at BIDMC (Beth Israel Deaconess Medical Center).  Essentially members give comments/suggestions in an effort to improve the hospital and patient care.  Being the all too seasoned patient that I am at BIDMC, I have many suggestions.  Having gluten-free food available in the ER for those with Celiac Disease so we don't have to endure a hunger headache or eat the regular food.  Extending the hours of Health Care Associates (HCA), the primary care office to include weekends and later weekday hours for those with colds, urinary tact infections, ear infections, belly pain, etc so they can be treated faster and not wait in the ER for hours on end while risking spreading their illness to others.  I also think the kitchens for inpatient food service should stay open longer, at least past 7pm.  When I was inpatient in November I had been sleeping for most of the afternoon and when I went to order dinner at 7:30, which seemed like a reasonable time, I was told the kitchen had already closed.  For dinner I had a sandwich on wheat bread.  It does not make sense to not be able to receive gluten-free food past 7pm at the same medical center where I was given the diagnosis of Celiac Disease.

Interviews are still going on, but I expect to hear something before the first meeting in September.


After about 10 minutes in my apartment I had to call a cab for my 2:00 appointment at Spaulding Rehab, also in Boston for a second opinion regarding the Baclofen Pump saga.  The taxi was late to arrive and I arrived at Spaulding at 2:17.  (I would have taken the T, but I didn't know exactly where the orange line T stop was in relation to the hospital so I decided to play it safe and take a cab.)  Thank goodness the doctor was running behind or else I might have to reschedule.  Normally I would not mind rescheduling, but since I have the Baclofen trail in PA next week, getting another opinion post-trial would be backwards.  I waited for about an hour before I was seen.  Thank goodness for my Kindle.  Long story short, I really liked the doctor and he agrees that a trial is a step in the right direction.  Hearing Dr. L describe the abnormal muscle tension in my left leg and foot using spasticity and dystonia, words that I have always used myself to describe it, but words my neuro at BIDMC always challenges and refuses to use made me realize how stressful the doctor-patient relationship is.  I see my neuro at BIDMC on 8/17 and if he has not changed his ways, he will loose me as a patient.  Dr. L gave me his email address and I will write to him during the trial in PA.

I need to have two doctors and two rehab hospitals managing my care because even though I spend most of my time here in MA, I still go to PA every now and then because my parents live there.  If the trial works and I like the results I get from it, I will likely get the pump implanted, but I would rather feel comfortable with the doctors who manage my care in both states before I have life changing surgery.  I asked Dr. L if they implant Baclofen Pumps at (MGH) Massachusetts General Hospital, but he said only (BMC) Boston Medical Center and Brigham and Women's Hospital implant pumps.  If the trial works and if I then choose to get the pump in MA, I would likely get it at Brigham since I have been there about three times for appointments.


I left Spaulding at around 4pm, called a cab and went straight to (CHB) Children's Hospital Boston.  (It only occured to me just now that I spent the entire day in a hospital.)  While these past few weeks have been crazy from the Child Life conference and monumental fall in AZ, to the wedding in PA, and the various appointments I had in Philly, I haven't been able to volunteer.  This coming week I am leaving for PA for the trial in Philly and a visit to Pittsburgh to tour Children's Hospital Pittsburgh and meet with the child life director.  Even though I volunteered 4-8pm (I typically work from 2-6pm), it was nice to be back in my element after being away from it for awhile.