June 13, 2010
May 24, 2010
Even all the good can't take away all the pain.......
Today I was speaking to another EB mom on the phone who lives near me and who sadly lost her baby to EB about 14 months ago. We were talking about the hospital our kids were born. I personally don't like that hospital and blame the doctors there for Garrett's death. But that is another story for another day. Anyways, she was telling me how much the place has changed and how they are set up much better to care for the next EB baby to be born there. Since Garrett, there has been 4 other EB babies born, all boys, born at the very same hospital. Only 2 are currently living. But because of the things this place learn with Garrett and the mistakes that were made, they have come to realize how better to care for an EB baby and what things should be done and which things should not be done. Which is a good thing, but I still will never trust that hospital to care for any of my kids EB or not.
Even though I am glad these good things seem to be happening there, it still doesn't erase the fact that it cost Garrett his LIFE for those thing to occur. And that makes me so sad to think about that sometime. Not matter how much good came from the situation....it can never take away all the pain of losing a child....
Even though I am glad these good things seem to be happening there, it still doesn't erase the fact that it cost Garrett his LIFE for those thing to occur. And that makes me so sad to think about that sometime. Not matter how much good came from the situation....it can never take away all the pain of losing a child....
The good that comes from EB
I know those aren't two words you hear in the same sentence; good and EB. But there is some good that comes from EB. The biggest one; the friendships that form between people who are affected some way by EB. Because 99% of the time, EB is the ONLY reason those relationships form in the first place.
I am on Facebook and I have about 535 Facebook friends. They are divided into 5 categories: family, current and former co-workers; friends from high school; friends from college; and those affected by EB somehow. I went through the list the other day and about 1/2 of those 535 I only know because of EB!
I know EB sucks and its not fair for someone to be born with EB. But EB is here stay (but hopefully for not much longer) so we must make the best of it somehow. And the part that makes it a little bit better- are the people we meet a long the way.
I have so many wonderful in the past 7+ years. Some have a child with EB; others lost a child with EB; and many have EB themselves.
I also think those with EB have much more compassion for others; especially those with medical issues themselves. There is a girl in my daughter's class that has some medical conditions; not sure what kind, i just know she can't be out in the heat either- so she and Sami go to an alternate activity when their class has PE. Sami is so concerned about this girls health and makes sure she isn't too warm and such. I suppose anyone can be compassionate, but I think those with EB (or any major medical issue) are more so.
So if you have trouble seeing the good in EB at time, think of these reasons I have listed here and maybe it will help make things a little easier.
I am on Facebook and I have about 535 Facebook friends. They are divided into 5 categories: family, current and former co-workers; friends from high school; friends from college; and those affected by EB somehow. I went through the list the other day and about 1/2 of those 535 I only know because of EB!
I know EB sucks and its not fair for someone to be born with EB. But EB is here stay (but hopefully for not much longer) so we must make the best of it somehow. And the part that makes it a little bit better- are the people we meet a long the way.
I have so many wonderful in the past 7+ years. Some have a child with EB; others lost a child with EB; and many have EB themselves.
I also think those with EB have much more compassion for others; especially those with medical issues themselves. There is a girl in my daughter's class that has some medical conditions; not sure what kind, i just know she can't be out in the heat either- so she and Sami go to an alternate activity when their class has PE. Sami is so concerned about this girls health and makes sure she isn't too warm and such. I suppose anyone can be compassionate, but I think those with EB (or any major medical issue) are more so.
So if you have trouble seeing the good in EB at time, think of these reasons I have listed here and maybe it will help make things a little easier.
May 18, 2010
PCC Hyatt Regency Update!
Due to high demand, DebRA’s room block at the Hyatt Regency has SOLD OUT. The entire hotel is also fully booked during the week of the Patient Care Conference. If you haven’t
reserved a room, here are two hotels close near the Hyatt Regency that were
highly recommended:
reserved a room, here are two hotels close near the Hyatt Regency that were
highly recommended:
The Westin Cincinnati
21 East Fifth Street
Cincinnati, OH 45202
513-621-7700
Cincinnati, OH 45202
513-621-7700
The Cincinnatian Hotel
601 Vine Street
Cincinnati, OH 45202
800.942.9000
513.391.3000
Both hotels have good rates and their availability during the conference dates were confirmed on www.expedia.com. We suggest you book your room as soon as possible. If there are further developments, we will let you know.
Please contact the DebRA office at 212.868.1573 or pcannon@debra.org if you have any further questions
2010 Patient Care Conference agenda update!
Hello Everyone,
The following information is regarding recent updates to the 2010 Patient Care Conference agenda. The Agenda for the Patient Care Conference runs from Wednesday afternoon to Saturday morning. On Wednesday, registration is from 11:00am until 1:00pm. Afterward, an exciting roster of speakers take over the stage from 1:00pm - 4:00pm.
The Hyatt Regency Cincinnati’s official hotel check in time is 3:00pm. If you arrive earlier and your room is not ready, the hotel will hold your luggage until check in time. Hotel parking is $15.00 per day.
On Thursday, the program runs all day from 9:00am - 4:45pm. There is a break for lunch from noon until 1:00pm where we will enjoy “A Cincinnati Lunch Buffet”, then speakers will resume. At 5:00pm an Italian buffet dinner will be served. Families going on the aquarium trip can either eat in the dining area or make their meals to go if they wish to relax in their rooms before the big night out. Buses will leave from the hotel at 7:00pm then run continuously until everyone is at the aquarium. We have the aquarium booked until 11:00pm but some buses will return earlier to accommodate younger children who are tired.
On Friday, the program starts at 9:00am and runs until 4:45pm. A Southwest Buffet Lunch break is from noon until 1:00pm. The Speakers will resume at 1:05pm and speak until 4:45pm.
Saturday, June 19th DebRA will host a Continental Breakfast where everyone can exchange contact information and get to know each other.
Accommodations have been made for soft diets (including, ensure and boost) and kids’ meals. We will be happy to help you with any other food requests.
Updates will be made via Facebook/debraofamerica and debra.org if there are any changes to the agenda.
If you have any further questions, please feel free to contact the DebRA office at 212.868.1573 or pcannon@debra.org.
The following information is regarding recent updates to the 2010 Patient Care Conference agenda. The Agenda for the Patient Care Conference runs from Wednesday afternoon to Saturday morning. On Wednesday, registration is from 11:00am until 1:00pm. Afterward, an exciting roster of speakers take over the stage from 1:00pm - 4:00pm.
The Hyatt Regency Cincinnati’s official hotel check in time is 3:00pm. If you arrive earlier and your room is not ready, the hotel will hold your luggage until check in time. Hotel parking is $15.00 per day.
On Thursday, the program runs all day from 9:00am - 4:45pm. There is a break for lunch from noon until 1:00pm where we will enjoy “A Cincinnati Lunch Buffet”, then speakers will resume. At 5:00pm an Italian buffet dinner will be served. Families going on the aquarium trip can either eat in the dining area or make their meals to go if they wish to relax in their rooms before the big night out. Buses will leave from the hotel at 7:00pm then run continuously until everyone is at the aquarium. We have the aquarium booked until 11:00pm but some buses will return earlier to accommodate younger children who are tired.
On Friday, the program starts at 9:00am and runs until 4:45pm. A Southwest Buffet Lunch break is from noon until 1:00pm. The Speakers will resume at 1:05pm and speak until 4:45pm.
Saturday, June 19th DebRA will host a Continental Breakfast where everyone can exchange contact information and get to know each other.
Accommodations have been made for soft diets (including, ensure and boost) and kids’ meals. We will be happy to help you with any other food requests.
Updates will be made via Facebook/debraofamerica and debra.org if there are any changes to the agenda.
If you have any further questions, please feel free to contact the DebRA office at 212.868.1573 or pcannon@debra.org.
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