Thursday, October 27, 2011
Wish Trip Day 2
Wednesday, October 26, 2011
Waffles and Wishes and Day 1
I decided I should blog each night so I don't forget one minute of this incredible trip. The problem is I fall into bed exhausted shortly after Alex! So Let me back up to the breakfast for those of you who weren't able to attend.
I have spent the last month diligently preparing for Monday. There were lists everywhere, speeches to be written, pictures to send/deliver, suitcases to pack and most importantly surprises to be guarded. As of Monday morning Alex knew NOTHING other then he was going to be the "star" of a Make A Wish fundraising breakfast and would get to meet Darren Woodsen (former cowboy and ESPN analyst). He had no idea that we had invited family and friends, he had no idea a limo was coming, he had no idea we were leaving for San Diego. So Monday morning we tried to act as normal as possible. When the limo arrived at 7:45 am, Bruce quickly loaded the suitcases before we called Alex down to leave. He stood at his van door for a minute before we told him we weren't taking that car and to walk around the back. He was shocked to see a white stretch limo waiting just for him! He thought it was awesome. Everything from the lights that changed colors to the wine glasses to the bag of goodies and balloons for him to not having to use a car seat. He grinned the whole way and decided he "could get used to travelling like that".
We arrived at the Hilton Southlake and started walking in. He wasn't sure what to think as he started to realize some of "our people" were there. I let him know I had invited them to see him on his start day. The breakfast started and I was able to chat with friends while everyone ate (I was way too nervous to eat). There were a few other speakers and then it was my turn. I was hoping to make it through myu speech without crying, but oh well, the emotion of the day got the best of me. After I spoke Darren surprised Alex with the news that we were leaving for San Diego. Alex's face didn't change at all. Then he leaned over and whispered to me "does he mean tonight, tonight?" I said "yeah, like right now." Then he let out a yahoo and a smile plastered his face. His favorite part of the morning was hanging out in the limo with his buddies.
We had a 1:50 flight to San Diego. When we arrived we were greeted by a Make a Wish volunteer who helped us get our bags, get our rental car and find our hotel. The hotel is incredible! We are on the 12th floor in an ocean view room with a balcony. The bell hop when we got here gave us all sorts of info to help us during our stay and let us know of all the fun activities for Buggy. The reservation girl had a bouquet of daisies and balloons for Alex. We had only been settled in our room for a few minutes when there was a knock on the door. It was the concierge with a basket of candy and snacks and a certificate for a free movie. The service has been unbelievable! We settled in and then headed up the beach a few miles to get dinner. It was early to bed Monday night! Before bed Alex declared it the happiest day of his life.
Yesterday we decided to tackle Seaworld! After a quick "adventure" exploring the hotel grounds and grabbing breakfast we headed the 2 miles to Sea World. Alex told us that he really wanted to pet and feed dolphins. When we got there Bruce went to guest relations to see what we could set up. We decided on a program called Dolphin Encounter.
We headed to see the sharks before it was time. Alex and I also climbed a net up to a high tower and crossed bridges in the kids section.The dolphin encounter was perfect. I let Bruce and Alex do it so I could get pictures. Alex got 20 minutes with the dolphins and a trainer. He learned hand signals to make them do tricks, fed them and pet them. He was grinning the entire time. I got teary eyed several times watching him with the dolphins. The only problem was that he was worried about his port getting wet when the dolphin splashed so he backed up several times. Always responsible my boy!
After the dolphin encounter we headed over to ride a ride called Riptide Rescue and then to see the Clyde and Seamore Show (sea lions). After leaving the show we had to ride Riptide Rescue 2 more times and then went to the dolphin show. By this point Alex was starting to get tired. We had a few more things we wanted to see before calling it a day. We quickly went through the wild artic exhibit to see Beluga whales, walruses and polar bears and then the penguin exhibit. We were getting ready to leave and realized it was 5 mnutes until the Shamu show. We decided to see that before we headed out. I am so glad we did. That wound up being Alex's favorite part. The last thing we did was ride a skyride across the bay before heading back to the hotel. Alex was sound asleep before 7:00 and I wasn't far behind! Of course I had to do all the usual medical stuff first!
In true Ali fashion, I have already taken 400 pictures! I will post a few here, but more to come when we get home. Thank you to everyone who celebrated with us Monday and to those who have prayed for this week to go smoothly.
Off to the Wild Animal Park to find Zebras....
Ali
I have spent the last month diligently preparing for Monday. There were lists everywhere, speeches to be written, pictures to send/deliver, suitcases to pack and most importantly surprises to be guarded. As of Monday morning Alex knew NOTHING other then he was going to be the "star" of a Make A Wish fundraising breakfast and would get to meet Darren Woodsen (former cowboy and ESPN analyst). He had no idea that we had invited family and friends, he had no idea a limo was coming, he had no idea we were leaving for San Diego. So Monday morning we tried to act as normal as possible. When the limo arrived at 7:45 am, Bruce quickly loaded the suitcases before we called Alex down to leave. He stood at his van door for a minute before we told him we weren't taking that car and to walk around the back. He was shocked to see a white stretch limo waiting just for him! He thought it was awesome. Everything from the lights that changed colors to the wine glasses to the bag of goodies and balloons for him to not having to use a car seat. He grinned the whole way and decided he "could get used to travelling like that".
We arrived at the Hilton Southlake and started walking in. He wasn't sure what to think as he started to realize some of "our people" were there. I let him know I had invited them to see him on his start day. The breakfast started and I was able to chat with friends while everyone ate (I was way too nervous to eat). There were a few other speakers and then it was my turn. I was hoping to make it through myu speech without crying, but oh well, the emotion of the day got the best of me. After I spoke Darren surprised Alex with the news that we were leaving for San Diego. Alex's face didn't change at all. Then he leaned over and whispered to me "does he mean tonight, tonight?" I said "yeah, like right now." Then he let out a yahoo and a smile plastered his face. His favorite part of the morning was hanging out in the limo with his buddies.
We had a 1:50 flight to San Diego. When we arrived we were greeted by a Make a Wish volunteer who helped us get our bags, get our rental car and find our hotel. The hotel is incredible! We are on the 12th floor in an ocean view room with a balcony. The bell hop when we got here gave us all sorts of info to help us during our stay and let us know of all the fun activities for Buggy. The reservation girl had a bouquet of daisies and balloons for Alex. We had only been settled in our room for a few minutes when there was a knock on the door. It was the concierge with a basket of candy and snacks and a certificate for a free movie. The service has been unbelievable! We settled in and then headed up the beach a few miles to get dinner. It was early to bed Monday night! Before bed Alex declared it the happiest day of his life.
Yesterday we decided to tackle Seaworld! After a quick "adventure" exploring the hotel grounds and grabbing breakfast we headed the 2 miles to Sea World. Alex told us that he really wanted to pet and feed dolphins. When we got there Bruce went to guest relations to see what we could set up. We decided on a program called Dolphin Encounter.
We headed to see the sharks before it was time. Alex and I also climbed a net up to a high tower and crossed bridges in the kids section.The dolphin encounter was perfect. I let Bruce and Alex do it so I could get pictures. Alex got 20 minutes with the dolphins and a trainer. He learned hand signals to make them do tricks, fed them and pet them. He was grinning the entire time. I got teary eyed several times watching him with the dolphins. The only problem was that he was worried about his port getting wet when the dolphin splashed so he backed up several times. Always responsible my boy!
After the dolphin encounter we headed over to ride a ride called Riptide Rescue and then to see the Clyde and Seamore Show (sea lions). After leaving the show we had to ride Riptide Rescue 2 more times and then went to the dolphin show. By this point Alex was starting to get tired. We had a few more things we wanted to see before calling it a day. We quickly went through the wild artic exhibit to see Beluga whales, walruses and polar bears and then the penguin exhibit. We were getting ready to leave and realized it was 5 mnutes until the Shamu show. We decided to see that before we headed out. I am so glad we did. That wound up being Alex's favorite part. The last thing we did was ride a skyride across the bay before heading back to the hotel. Alex was sound asleep before 7:00 and I wasn't far behind! Of course I had to do all the usual medical stuff first!
In true Ali fashion, I have already taken 400 pictures! I will post a few here, but more to come when we get home. Thank you to everyone who celebrated with us Monday and to those who have prayed for this week to go smoothly.
Off to the Wild Animal Park to find Zebras....
Ali
Sunday, October 16, 2011
The Surprise of a Lifetime!
Where does the time go? I always know it is time to update when one of my good friends from college starts emailing me! (Love you, Li) The last few weeks have been very "normal" and busy. We have been doing school, cub scouts, playgroup, six flags. I love times like this when the medical can take a back seat to the kid stuff we love doing.
Medically, Alex is doing great!I see so much to be hopeful about. I really feel like we are starting to see the effects of the EPI-743. Alex is able to do things right now that he has NEVER been able to do. He rode his bike around the block two times in the past week. In the past he had never made it farther then the length of three houses. He was able to walk on the treadmill for seven minutes and then five minutes last week at therapy. His previous best was five minutes. It is so encouraging to see these little bursts of energy. Bug is still taking his long naps, but I am so happy to see the spark back in him during his awake time! We continue to do TPN and Lipids (IV nutrition) at night. While I would never choose this because I know all to well the possible ramifications I know that it too is contibuting to Alex's newfound energy. He has gained almost 4 pounds since starting TPN in the beginning of September. He is getting a ton of fluids right now so that helps him feel better too. Alex has been a true champ with his new infusions. What are two more needles a week, right? I continue to be amazed at the spirit and strength that is packed in this tiny little body. He just takes it all in stride with a smile on his face and hugs for everyone he sees. The only tiny little blip medically is that Alex has been anemic for over a month now. He is sitting right above his transfusion point. We do not want to transfuse, but he has not been able to retic and bring his counts up even with his procrit. At this point he has not been very symptomatic so we just watch! Don't you love a medical update from me with almost all good news!!!!!
Now for the surprise..... We are leaving in one week for Alex's make a wish trip! I was asked several weeks ago to speak at a make a wish fundraiser. Alex will be the "star"! (they really are called ambassadors, but don't tell him!) After I speak they will bring Alex up on stage and ask him some questions and then surprise him with the news that his wish has been granted and we are leaving! Alex has absolutely no idea. He knows we are going to the breakfast, but that is it. He doesn't know that a lim will pick us up that morning! He doesn't know that some of our closest friends will be there! He doesn't know that Theresa and I are madly packing and making lists while he sleeps! I absolutely cannot wait to see the look on his face when he finds out.
To add to the magic Mimi will be here! Mimi had planned a trip to see her boy. She arrives Wednesday. She will be here which makes it all the more perfect. We only wish all of our friends and family could come! Don't worry there will be TONS of pictures and video.
We are going to squeeze in lots of fun while Mimi is here...the pumpkin patch, an air show, six flags, the zoo. Alex and Bruce will even be spending a night at the zoo with Cub Scouts so Mom and I will get some girl time!
So overall things are going really well around here. Please pray for Buggy to stay healthy and feeling good over the next few weeks. I want this trip to be the magical experience he so deserves. Please pray for me as I speak on the 24th. It is so hard to talk about my incredible boy without getting emotional. Please pray for safe traveels for my mom and for us. Thank you for continuing to support as through our incredible journey.
Ali
Medically, Alex is doing great!I see so much to be hopeful about. I really feel like we are starting to see the effects of the EPI-743. Alex is able to do things right now that he has NEVER been able to do. He rode his bike around the block two times in the past week. In the past he had never made it farther then the length of three houses. He was able to walk on the treadmill for seven minutes and then five minutes last week at therapy. His previous best was five minutes. It is so encouraging to see these little bursts of energy. Bug is still taking his long naps, but I am so happy to see the spark back in him during his awake time! We continue to do TPN and Lipids (IV nutrition) at night. While I would never choose this because I know all to well the possible ramifications I know that it too is contibuting to Alex's newfound energy. He has gained almost 4 pounds since starting TPN in the beginning of September. He is getting a ton of fluids right now so that helps him feel better too. Alex has been a true champ with his new infusions. What are two more needles a week, right? I continue to be amazed at the spirit and strength that is packed in this tiny little body. He just takes it all in stride with a smile on his face and hugs for everyone he sees. The only tiny little blip medically is that Alex has been anemic for over a month now. He is sitting right above his transfusion point. We do not want to transfuse, but he has not been able to retic and bring his counts up even with his procrit. At this point he has not been very symptomatic so we just watch! Don't you love a medical update from me with almost all good news!!!!!
Now for the surprise..... We are leaving in one week for Alex's make a wish trip! I was asked several weeks ago to speak at a make a wish fundraiser. Alex will be the "star"! (they really are called ambassadors, but don't tell him!) After I speak they will bring Alex up on stage and ask him some questions and then surprise him with the news that his wish has been granted and we are leaving! Alex has absolutely no idea. He knows we are going to the breakfast, but that is it. He doesn't know that a lim will pick us up that morning! He doesn't know that some of our closest friends will be there! He doesn't know that Theresa and I are madly packing and making lists while he sleeps! I absolutely cannot wait to see the look on his face when he finds out.
To add to the magic Mimi will be here! Mimi had planned a trip to see her boy. She arrives Wednesday. She will be here which makes it all the more perfect. We only wish all of our friends and family could come! Don't worry there will be TONS of pictures and video.
We are going to squeeze in lots of fun while Mimi is here...the pumpkin patch, an air show, six flags, the zoo. Alex and Bruce will even be spending a night at the zoo with Cub Scouts so Mom and I will get some girl time!
So overall things are going really well around here. Please pray for Buggy to stay healthy and feeling good over the next few weeks. I want this trip to be the magical experience he so deserves. Please pray for me as I speak on the 24th. It is so hard to talk about my incredible boy without getting emotional. Please pray for safe traveels for my mom and for us. Thank you for continuing to support as through our incredible journey.
Ali
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