We are staying at a beautiful home in Bala Cynwyd, PA. Our host family is very kind and have made us feel like this is home away from home. We have plenty of space; the host mentioned there are around 11 bedrooms. Each of us has our own sleeping space and we have a kitchen area to ourselves.
Caleb is doing well and feels at home. He has made a new friend Meagan who is the same age as him. They enjoy playing together, baking cookies and going to the park. He has also had to get used to being around dogs; they have two golden retrievers who look very large to him! The area works very well for him as he can stay busy at the park, library and museums.
Grandma is doing well and has been a huge help. We are glad we are all here together as we can help each other out. Michael has been able to continue working his job remotely.
Hurricane Irene passed over and we are all safe. It has caused a lot of damage east of us due to flooding. Unfortunately, one of our host's sons had to move his family out of their house due to flood damage. They will be staying here too until they can find a new home.
Wednesday, August 31, 2011
Saturday, August 27, 2011
Tornadoes, Earthquakes, Hurricanes... Oh My!
As if our trip didn't have enough excitement to begin with, nature has decided to make things more interesting. We have experienced tornado warnings and the strongest East Coast earthquake since 1944. Brandi thought it was a clothes washer that had gotten off balance. Our host's home has walls that are 14" thick and it caused them to move and shake. Thankfully, it was not strong enough to cause damage and everyone is safe.
As we are updating the blog, Hurricane Irene is already moving in. We have enjoyed beautiful weather the past couple of days; even getting the opportunity to grill hamburgers and go to the park. Now, the clouds have moved in and we experienced heavy rain late this morning. It is predicted that we will be on the outside edge of the strongest part of the storm. Forecasts show 7" of rain over the next 24 hours. We are preparing for expected power outages and heavy rain.
Google has a site where you can track the storm on a map: http://crisislanding.appspot.com/. We are currently in Bala Cynwyd, Pennsylvania.
As we are updating the blog, Hurricane Irene is already moving in. We have enjoyed beautiful weather the past couple of days; even getting the opportunity to grill hamburgers and go to the park. Now, the clouds have moved in and we experienced heavy rain late this morning. It is predicted that we will be on the outside edge of the strongest part of the storm. Forecasts show 7" of rain over the next 24 hours. We are preparing for expected power outages and heavy rain.
Google has a site where you can track the storm on a map: http://crisislanding.appspot.com/. We are currently in Bala Cynwyd, Pennsylvania.
Thursday, August 25, 2011
Monday, August 22nd
Our drive to the hospital made us fully aware that we are not in Kansas anymore. The streets here are narrow and packed with traffic. Cars chirp at each other often with honking and other expletives. Neighborhoods are packed together tightly and change frequently from beautiful old homes - some large and some small - to streets lined with houses, wall-to-wall without any gaps.
We are so excited that Caleb was able to go along with us. He absolutely loved CHOP because of the amazing display in the entrance - cars that go back and forth and a maze that you can manipulate by turning gears and pressing buttons. Our son even figured out how to get into the glass display by running his hand under the enclosure and reaching up! He could have stood there and watched that for hours. We also got to see the studio that the Ryan Seacrest Foundation had setup in the hospital (http://ryanseacrestfoundation.org/)
Our appointment went very well. Jordan's LHR has increased to a 1.8 (his first ratio was about 0.8). CHOP explained that the LHR is most telling between 25-28 weeks - Jordan's LHR was 1.5 which is pretty good for CDH; especially when the liver is up. Also, they believe that only a small portion of the liver is up at this time. Basically, even though Jordan's lungs are restricted, they have been growing as he has grown. They also mentioned that it is common for fluids to get backed up in the organs because of the constriction. Jordan's stomach is not kinked and his heart looks very good. Thank you to everyone who has been praying for our family and our son, Jordan.
We are so excited that Caleb was able to go along with us. He absolutely loved CHOP because of the amazing display in the entrance - cars that go back and forth and a maze that you can manipulate by turning gears and pressing buttons. Our son even figured out how to get into the glass display by running his hand under the enclosure and reaching up! He could have stood there and watched that for hours. We also got to see the studio that the Ryan Seacrest Foundation had setup in the hospital (http://ryanseacrestfoundation.org/)
Our appointment went very well. Jordan's LHR has increased to a 1.8 (his first ratio was about 0.8). CHOP explained that the LHR is most telling between 25-28 weeks - Jordan's LHR was 1.5 which is pretty good for CDH; especially when the liver is up. Also, they believe that only a small portion of the liver is up at this time. Basically, even though Jordan's lungs are restricted, they have been growing as he has grown. They also mentioned that it is common for fluids to get backed up in the organs because of the constriction. Jordan's stomach is not kinked and his heart looks very good. Thank you to everyone who has been praying for our family and our son, Jordan.
Bronze Alive
Our first host was from England. Kathleen was very kind and has an interesting background. Her passion is sculpting and you can see some of her work at www.bronzealive.com and http://www.aaea.net/galleries/friedenberg/default.htm. She lived in a beautiful neighborhood and we enjoyed our brief stay.
Sunday, August 21, 2011
Finally in Philly
After what seemed like a very long day, we finally made it to Philadelphia. Road construction slowed us down yet again. We also ran into a severe thunderstorm that had large hail, heavy winds and rain, and the possibility of producing a tornado - not that much different than Kansas after all. Thankfully, we were able to let the storm pass and follow it on the interstate for a while - sometimes driving at 10mph.
We felt a combination of both excitement and relief when we finally reached Philadelphia. Out trip covered three days as we crossed Kansas, Missouri, Illinois, Indiana, Ohio, West Virginia and Philadelphia. Our host, Kathleen, was very warm and receptive. She lives in a beautiful old home and sculpts for a living. We are very fortunate to have the opportunity to stay in someone else's house - what a great concept to help families facing this situation. Still, it is not home and it takes a lot of patience to get things organized and feel like we can continue with the days ahead. It is very draining and we have been running short on sleep.
Our next appointment at CHOP is scheduled for tomorrow morning.
We felt a combination of both excitement and relief when we finally reached Philadelphia. Out trip covered three days as we crossed Kansas, Missouri, Illinois, Indiana, Ohio, West Virginia and Philadelphia. Our host, Kathleen, was very warm and receptive. She lives in a beautiful old home and sculpts for a living. We are very fortunate to have the opportunity to stay in someone else's house - what a great concept to help families facing this situation. Still, it is not home and it takes a lot of patience to get things organized and feel like we can continue with the days ahead. It is very draining and we have been running short on sleep.
Our next appointment at CHOP is scheduled for tomorrow morning.
Saturday, August 20, 2011
Foothills of the Appalachian Mountains
We settled down at the foothills of the Appalachian Mountains in Cambridge, Ohio for the night. The day was mostly uneventful, which is good when traveling. Caleb called the Gateway Arch in St. Louis a "white rainbow." Also, we met another couple traveling to eastern Pennsylvania to visit their grandchildren. They were traveling from San Diego - we thought we had a long trip!
When we get to Philadelphia, we will stay with a host family for two nights. The plan is that we will then move to another host family for about two months. Everyone is tired tonight and we have a full day of travel tomorrow.
Friday, August 19, 2011
Don't Forget Your Toothbrush
It was quite the chore, but we were able to pack for 3 different seasons and a possible six month stay for 3 adults and a two-year-old in Philadelphia. We can't find the words to thank everyone who made this trip possible. So many people have given in their own way to support our family. It was amazing to see how items we needed for the trip were provided for us. People donated items such as the following: free inspection of the Jeep, a hitch plus installation, luggage rack, help with packing, finances, etc. Michael's Dad even helped remodel a bedroom for Caleb in order to make room for baby Jordan. We couldn't have done this without the support of our truly amazing friends and family.
We literally had to hold stuff in as we closed the doors. If we had needed one more bag, we would have needed a larger vehicle or a U-haul. As I strapped Caleb in the Jeep, he looked at me and said, "Daddy, I need to go potty." As you can see, one of the biggest blessings we've received is that Michael's mom found a way to go along with us. She will be able to stay in Philadelphia with us for support and to help watch Caleb. One of our biggest prayers answered: Caleb gets to be with his family. It is a lot to ask of a person to put their life on hold for another. Grandma came through for our family in a big way.
It was hard to for all of us to say goodbye to our family and friends; mostly because we don't know when we'll return. The good news is that everything stayed tied down and we made it safely to St. Louis, MO where we will spend the night. Caleb is having a good time traveling. Every time we go over a bridge, "Daddy, can we do that again?"
By the way, given everything we had to do to prepare for this trip, Brandi did forget her toothbrush...
We literally had to hold stuff in as we closed the doors. If we had needed one more bag, we would have needed a larger vehicle or a U-haul. As I strapped Caleb in the Jeep, he looked at me and said, "Daddy, I need to go potty." As you can see, one of the biggest blessings we've received is that Michael's mom found a way to go along with us. She will be able to stay in Philadelphia with us for support and to help watch Caleb. One of our biggest prayers answered: Caleb gets to be with his family. It is a lot to ask of a person to put their life on hold for another. Grandma came through for our family in a big way.
It was hard to for all of us to say goodbye to our family and friends; mostly because we don't know when we'll return. The good news is that everything stayed tied down and we made it safely to St. Louis, MO where we will spend the night. Caleb is having a good time traveling. Every time we go over a bridge, "Daddy, can we do that again?"
By the way, given everything we had to do to prepare for this trip, Brandi did forget her toothbrush...
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