Re: Steve's (aka Knip) Mystic Adventure

[Guest guest]

Steve

Great trip. Shows life can be good even with PF. When are you thinking

about Disneyworld? I was hoping to go the 20th - 26th of Dec although

odds are somewhat against it now thanks to the Medicare prescription

donut hole and doctors who are emphatically telling me " no " to less

expensive alternatives. Still trying to figure a way though. I know

early December is great and a quiet and cheap season there.

Unfortunately, if I go with , it has to be when school is out.

>

> As promised in an earlier post...

>

> Just to show that I now have way too much time on my hands, here is

> my adult version of " What I did on summer vacation " ! LOL

>

> My wife, Anne, and I returned on Saturday from a vacation trip to

> Mystic, CT. Anne grew up in that area and her family still lives

> there. We went down for a visit to Mystic Aquarium and the Mystic

> Seaport with our godson and his family. It was a wonderful

> time, and we had the best 4 days of weather of the entire summer!!!

>

> No problems with the arrangements for O2, in fact, it was delivered

> to the hotel one week early. Both concentrator and liquid for

> filling my Marathon unit were provided. On a side note, I have

> nothing but great things to say about the Apria people that I deal

> with - they have been wonderful and have always gone the extra bit

> for me.

>

> Lot's of walking, but also lots of opportunities to sit and take a

> breather. There were frequent times when I would sit on a bench

> somewhere with in his stroller while the rest of the group

> would board a tall ship or take part in some activity that was

> suitable for 's 3 year old sister, Grace.

>

> We had connecting rooms at the 's that we stayed at and

> it was fun to hear a little knock on the door every morning, followed

> by Grace's head peeping around the corner after she opened the door.

> Once she saw that we were awake, she would swing the door open and

> run in and jump on the bed...then we'd hear pounding across

> the floor on his hands and knees. Once he came around the corner and

> could see us he would break out into a big smile and scoot on over to

> us. He loved being on the bed and trying to dive off the side head-

> first! We even kept the two kids with us the last night, gave them

> supper and put them to bed, while their mom and dad had a nice quiet

> dinner out.

>

> All in all a very exhausting time, but well worth it. I never got my

> usual afternoon nap and I joked with Anne that you could tell

> that the trip was exhausting when I was looking forward to driving

> the 4 hours home as time to rest. It was good preparation for our

> week long trip to Disney World in December with my daughter, Beth.

> Having been there several times, we already know that it works best

> when we go back to our room for a rest/nap during the early afternoon

> before going back out to the parks in the evening.

>

> OH, and while on vacation I only gained .2 pounds - of course it

> helped that most of the time we were too busy to stop to eat! So, I

> only need to lose 3 more pounds before my next appt at the transplant

> program on September 10th.

>

> Steve aka...Knip Dx 9/07 confirmed via VATS 12/07

> 57 NH

>

[Guest guest]

Steve, Give me a call when y'all get into Fl. and we'll meet ya close to the interstate for lunch dinner or whatever y'all have time for. My number is in the contact list. I would love to meet with you guys. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." As promised in an earlier post...Just to show that I now have way too much time on my hands, here is my adult version of "What I did on summer vacation"! LOLMy wife, Anne, and I returned on Saturday from a vacation trip to Mystic, CT. Anne grew up in that area and her family still lives there. We went down for a visit to Mystic Aquarium and the Mystic Seaport with our godson and his family. It was a wonderful time, and we had the best 4 days of weather of the entire summer!!!No problems with the arrangements for O2, in fact, it was delivered to the hotel one week early. Both concentrator and liquid for filling my Marathon unit were provided. On a side note, I have nothing but great things to say about the Apria people that I deal with - they have been wonderful and have always gone the extra bit for me.Lot's of walking, but also lots of opportunities to sit and take a breather. There were frequent times when I would sit on a bench somewhere with in his stroller while the rest of the group would board a tall ship or take part in some activity that was suitable for 's 3 year old sister, Grace. We had connecting rooms at the 's that we stayed at and it was fun to hear a little knock on the door every morning, followed by Grace's head peeping around the corner after she opened the door. Once she saw that we were awake, she would swing the door open and run in and jump on the bed...then we'd hear pounding across the floor on his hands and knees. Once he came around the corner and could see us he would break out into a big smile and scoot on over to us. He loved being on the bed and trying to dive off the side head-first! We even kept the two kids with us the last night, gave them supper and put them to bed, while their mom and dad had a nice quiet dinner out.All in all a very exhausting time, but well worth it. I never got my usual afternoon nap and I joked with Anne that you could tell that the trip was exhausting when I was looking forward to driving the 4 hours home as time to rest. It was good preparation for our week long trip to Disney World in December with my daughter, Beth. Having been there several times, we already know that it works best when we go back to our room for a rest/nap during the early afternoon before going back out to the parks in the evening.OH, and while on vacation I only gained .2 pounds - of course it helped that most of the time we were too busy to stop to eat! So, I only need to lose 3 more pounds before my next appt at the transplant program on September 10th.Steve aka...Knip Dx 9/07 confirmed via VATS 12/0757 NH

[Guest guest]

Steve,

It's great to hear you had such a good time and that everything went smoothly! Getting out and about is always good for my morale and makes me feel like a normal person for awhile!

It's been years since I've been there but thank you for bringing back memories of Mystic Seaport Museum. Years ago when I lived on Cape Cod, Mystic CT was the halfway point between the cape and my parents home in NY. Whenever my husband and I were going to NY to visit my parents we'd always stop at the Museum with my son. It was a great place to take a break and stretch my little guys legs for an hour or so.

Sounds like your grandchildren had lots of fun! Thanks for sharing!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Steve's (aka Knip) Mystic Adventure

As promised in an earlier post...Just to show that I now have way too much time on my hands, here is my adult version of "What I did on summer vacation"! LOLMy wife, Anne, and I returned on Saturday from a vacation trip to Mystic, CT. Anne grew up in that area and her family still lives there. We went down for a visit to Mystic Aquarium and the Mystic Seaport with our godson and his family. It was a wonderful time, and we had the best 4 days of weather of the entire summer!!!No problems with the arrangements for O2, in fact, it was delivered to the hotel one week early. Both concentrator and liquid for filling my Marathon unit were provided. On a side note, I have nothing but great things to say about the Apria people that I deal with - they have been wonderful and have always gone the extra bit for me.Lot's of walking, but also lots of opportunities to sit and

take a breather. There were frequent times when I would sit on a bench somewhere with in his stroller while the rest of the group would board a tall ship or take part in some activity that was suitable for 's 3 year old sister, Grace. We had connecting rooms at the 's that we stayed at and it was fun to hear a little knock on the door every morning, followed by Grace's head peeping around the corner after she opened the door. Once she saw that we were awake, she would swing the door open and run in and jump on the bed...then we'd hear pounding across the floor on his hands and knees. Once he came around the corner and could see us he would break out into a big smile and scoot on over to us. He loved being on the bed and trying to dive off the side head-first! We even kept the two kids with us the last night, gave them supper and put them to bed, while their

mom and dad had a nice quiet dinner out.All in all a very exhausting time, but well worth it. I never got my usual afternoon nap and I joked with Anne that you could tell that the trip was exhausting when I was looking forward to driving the 4 hours home as time to rest. It was good preparation for our week long trip to Disney World in December with my daughter, Beth. Having been there several times, we already know that it works best when we go back to our room for a rest/nap during the early afternoon before going back out to the parks in the evening.OH, and while on vacation I only gained .2 pounds - of course it helped that most of the time we were too busy to stop to eat! So, I only need to lose 3 more pounds before my next appt at the transplant program on September 10th.Steve aka...Knip Dx 9/07 confirmed via VATS 12/0757

NH

[Guest guest]

thanks steve. i enjoyed reading about your break.

congratulations on the weight loss. love your photos.

i have a sister called grace. she is 45.

may

>

> As promised in an earlier post...

>

> Just to show that I now have way too much time on my hands, here is

> my adult version of " What I did on summer vacation " ! LOL

>

> My wife, Anne, and I returned on Saturday from a vacation trip

to

> Mystic, CT. Anne grew up in that area and her family still

lives

> there. We went down for a visit to Mystic Aquarium and the Mystic

> Seaport with our godson and his family. It was a wonderful

> time, and we had the best 4 days of weather of the entire summer!!!

>

> No problems with the arrangements for O2, in fact, it was delivered

> to the hotel one week early. Both concentrator and liquid for

> filling my Marathon unit were provided. On a side note, I have

> nothing but great things to say about the Apria people that I deal

> with - they have been wonderful and have always gone the extra bit

> for me.

>

> Lot's of walking, but also lots of opportunities to sit and take a

> breather. There were frequent times when I would sit on a bench

> somewhere with in his stroller while the rest of the group

> would board a tall ship or take part in some activity that was

> suitable for 's 3 year old sister, Grace.

>

> We had connecting rooms at the 's that we stayed at

and

> it was fun to hear a little knock on the door every morning,

followed

> by Grace's head peeping around the corner after she opened the

door.

> Once she saw that we were awake, she would swing the door open and

> run in and jump on the bed...then we'd hear pounding across

> the floor on his hands and knees. Once he came around the corner

and

> could see us he would break out into a big smile and scoot on over

to

> us. He loved being on the bed and trying to dive off the side head-

> first! We even kept the two kids with us the last night, gave them

> supper and put them to bed, while their mom and dad had a nice

quiet

> dinner out.

>

> All in all a very exhausting time, but well worth it. I never got

my

> usual afternoon nap and I joked with Anne that you could tell

> that the trip was exhausting when I was looking forward to driving

> the 4 hours home as time to rest. It was good preparation for our

> week long trip to Disney World in December with my daughter, Beth.

> Having been there several times, we already know that it works best

> when we go back to our room for a rest/nap during the early

afternoon

> before going back out to the parks in the evening.

>

> OH, and while on vacation I only gained .2 pounds - of course it

> helped that most of the time we were too busy to stop to eat! So,

I

> only need to lose 3 more pounds before my next appt at the

transplant

> program on September 10th.

>

> Steve aka...Knip Dx 9/07 confirmed via VATS 12/07

> 57 NH

>