Archive | February, 2013

First Hopkins CF Clinic Visit

28 Feb

Today Jody had his first visit at the John’s Hopkins CF Clinic.  During this visit we met with one of the doctors, one of the nurses, the social worker, and the dietician.  I took my point and shoot camera along to snap a few pictures (isn’t a blog post always better with pictures?), unfortunately though, the battery was dead (note to self, check the battery before leaving the house next time).

Overall, Jody had a good visit today.  His lung function is currently 32%, which is where he has been hanging since his infections last year.  Imagine, if you or I lost 70% of our lung function we would think we were dying.  For Jody, this decline has been so slow and gradual through the years that his body has adjusted, and for the most part, this decrease has gone unnoticed… until last year that is.   This past fall was the first time we began to see symptoms of his declining lungs, but we are now beginning to see small improvements.

One thing the doctor today recommended is “pulmonary rehabilitation.”  In plain English, supervised exercise, three times a week for 12 weeks.  During the exercise session Jody’s heart and oxygen level can be closely monitored.  The goal of this therapy is to start slowly, and gradually increase his exercise tolerance as his lung function (hopefully) increases.  We’re not expecting to see a huge jump in function, but small increases in lung function can mean big increases in tolerance of day-to-day activities.  Since we won’t be driving to Baltimore three days a week for this therapy we are hoping to get it set up here in Lancaster.  Please pray that this can be done without too much hassle.

We go back to Hopkins in three months, and during that visit Jody will have a full body Dexa scan done.  This is a test that measures bone density, and is recommended for CF patients because of an increased risk for osteoporosis.  In the meantime he will have a slew of labs drawn and we will work on setting up his pulmonary rehab.  It was nice to meet some of the members of our new CF team today.  We hope our relationship with them will be just as personal as it was with our previous team.

Dream Vacation

16 Feb

Incredible!  That is the one word I would use to describe our “us” (no kids) vacation to Riviera Maya, Mexico.  From the time we pulled out of our drive way until we arrived home seven days later, everything was smooth sailing.  We flew through all the airport check-points and customs without them batting an eye at Jody’s medical supplies.  Thankfully, everything arrived with us safely intact (unlike our honeymoon when his nebulizer broke from rough handling by the airport).  The majority of our time this week was spent as lazy beach bums.  I thought I’d share a little of our vacation with you through a few pictures (click on the photo to enlarge it).

Our room

Our awesome roof top balcony, complete with jacuzzi tub.  We enjoyed sitting in this at night while gazing at the stars.

Below is one of my favorite pictures from the week (I love the lighting and the reflection).  This is a restaurant on the resort overlooking one of the pools.

So happy to be doing what I love with the love of my life.

Dining at the Mexican restaurant (our favorite of all the ones we tried).

Playing Skip-Bo while Jody did his nebulizer treatments.

We attempted pictures on the beach with our tripod, but clearly the wind had another idea.

Flying home

Those are a few of the 500+ photos from our trip.  What a great week we had!  While the rest, relaxation, and quality time were incredibly fantastic, I think my favorite part of the trip was that for one week we were able to forget about Cystic Fibrosis.  We forgot about the stress and sickness of this past year, and that which may come in our future, and we lived in the present.  It was good great for the soul!  Sickness or not, I highly recommend a trip like this, away from the craziness of life, to relax, refresh, rekindle and recharge; it’s an investment you’ll never regret.

Life Philosophy

5 Feb

In 2012, Jody spent a total of 26 days in the hospital, and completed roughly eight weeks of IV antibiotics (spread throughout the year).  Since then, he and I have developed a new-found appreciation for life. We want to make the most of our “healthy” time together.  Understanding the nature of Cystic Fibrosis, we know that one day Jody will need oxygen to help him breathe, and even the slightest physical activity will become a challenge for him.  Until that day comes, we want to live to the fullest!

This philosophy is what prompted us to book a trip for just us (no kids) to an all-inclusive resort in Riviera Maya, Mexico, and we leave tomorrow! We will be staying at the Grand Bahia Principe Sian Ka’an, and Lord willing, we will enjoy seven days of sun & sand, rest & relaxation, sleeping in, no schedules, no responsibilities, and most importantly, quality time (so often neglected in the craziness of life).  How wonderful does that sound?!

Since Jody can’t take a vacation from Cystic Fibrosis, we’ll be packing our suitcase with his nebulizer and the medications that go along with it (on ice), digestive enzymes, vitamins and oral antibiotics, weight gaining shakes, and a letter from his doctor explaining the need for all of this equipment/medication.  Could something go wrong in Mexico?  Of course… but it’s worth the risk!  Staying home and living a life of fear is not really living at all.  So off we go, spending time together and creating new memories which CF will never be able to take from us.  Praying God would surround us with His protective arms, bless our time together, and watch over our little girls while we are apart.  Stay tuned for a post vacation update with pictures.