Alex and Maddy

Alex and Maddy

Thursday, October 27, 2011

Wish Trip Day 3

Bruce may never forgive me for leaving the camera home today! Another amazing day....

Today was our much anticipated trip to legoland. Alex is at an age when he loves rides. Bruce and I have both always loved amusement parks and rides and Alex certainly has the same genes. He was really looking forward to getting to the park today to ride some rides and check out some cool legos. It was hard to say who was more excited this morning, Bruce or Alex.

We got there early and when we picked up our tickets they also gave us a pass so we could enter the exit of any ride and bypass any lines. That makes any day a lot more fun! We entered the park and immediately rode the first of three roller coasters. Then we rode a boat ride through lego models of fairytales. Next we went on a sky coaster that was pedal powered and a freefall ride that was pulley based. Finally Alex headed to driving school! We are happy to say he did great (besides that one stop sign he ran) and earned his driver license. Very Fun! Then we competed in a police and fire academy contest and won!

We really lucked out when we went into the first store of the day and met Renate! She noticed our shirts and started talking to us. She wasn't about to let us leave without making the day special for Buggy. She took us into the factory behind locked doors and gave Alex a personal demonstration on how legos are made. She let him play in the raw material, showed him each step and made him his own one of a kind lego. The she gave him some collector's legos. Before we left her store she placed a call to the world's top master model builder who agreed to meet Alex and talk to us for a few minuted despite a busy schedule. We quickly raced acrosse the park to meet, Gary McIntyre.
He was so nice and so gracious talking to Alex and answering all Bruce's questions. I am pretty sure by this point Bruce was much more in awe then Alex! I am so grateful for the incredible people we have met this week who have gone out of there way to make this week special!

After our cool meeting we were back to riding rides and having fun. We rode two more coasters, shot foam balls, played in an awesome playground, rode a flume ride, and countless others. WE are heading back tomorrow to ride more rides and this time I will have my camera so I can take pictures of all the incredible sculptures in the park.


Wish Trip Day 2

Yesterday we headed to the San Diego Wild Animal Park which is the place that sparked Alex's wish. We were really looking forward to exploring the park and seeing the animals in more natural habitats. The main mission of the day was to see the zebras of course. When we got tot he park we asked the guest relations people which safari was the best to see the zebras. She suggested the "Cart Safari". You get to tour the plains in a golf cart and can get a lot closer tot he animals. It was a semi-private tour so we would be able to personalize it some. The only time we could get on was at 3:45 so we set out to explore the rest of the park before our tour. We started with the gorilla trail and some beautiful birds. We also got to see an African Porcupine. We were hoping to see the baby Gorilla (4 months) but he wasn't out. Then we passed some gibbon monkeys on the way to the elevator. When we reached the platform to take the elevator down to the lower level the view was absolutely breathtaking! I am amazed by the beauty of this park and this part of the country.

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....


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.

Wednesday, October 5, 2011

First Infusion

I was so proud of my boy today. He did fabulous. He handles so much with such grace and maturity. We met a nurse from the infusion company in Dr. P's office. He went over some paperwork with me and we began preparing the pump, tubing and needles. Luckily it was all pretty familiar to me after years of doing IV meds and SQ shots. Alex gets infused through 2 needles a few inches apart. The first one went in and he barely felt it. The second was quite a bit more painful. When we started the infusion the second site continued to be painful. We stopped the infusion and with Dr. P's approval only infused through the first site. The infusion took about an hour and fifteen minutes. Alex was fine. He had some swelling and redness at the site that was to be expected. Otherwise we have had absolutely no problems. We are spending the night in Houston just to be safe and plan on heading home tomorrow morning.
Thank you to everyone who prayed for us this week. We love you guys.

Tuesday, October 4, 2011

Not what I expected!

You would think after 7 years of this, I would know better then to go into a Dr's appt with preconceived notions of what the appointment will be like! I went into our GI appt today expecting it to be very quick and simple. I thought they would be happy he is gaining weight, happy with his labs and want to just keep everything status quo. And that is how the appointment started out. But as Dr. N and I started talking more about the impossible situation we are in, he started thinking outside the box and we came up with a new plan.

We have been stuck for a long time. Alex's GI dysmotility really limits how much we can get in interms of calories and fluids. On top of that we have to drain Alex's stomach into a bag 24 hours a day. He loses about a liter a day in fluids. There is no way for his little body to compensate for this amount of fluid loss day after day. So we are stuck using his port every night to give either TPN or IV fluids. We tried to stop using his port to replace these fluids this summer which caused the weight loss and severe fatigue we saw. There has been some discussion about a medication to slow secretions however, these generally aren't used in neurologically in tact kids because they dry you out and can be pretty uncomfortable.

 So fast forward to today....We know one of the reasons Alex loses so much fluid is because his pylorus (opening between the stomach and small intestine) is completely shut. Alex had a surgery several years ago to open Alex's pylorus but it was unsuccesful. Dr. N wants to try dilating Alex's pylorus once again and inserting a tube to hold it open. His hope is that we can get some of the stomach juices to empty into the intestines instead of a bag. If this worked it would be great. However, there are some potential issues that could keep this from working. At least it is something to try!

After our appt, we were able to meet some friends for lunch and a quick trip to the park. Now a quiet night before we head in for our infusion in the morning!
Please pray Alex does well and has no reactions to the infusion.

Monday, October 3, 2011

In Houston

I meant to get out an update before we hit the road again, but time got away from me. Alex and I are in Houston for a GI appt and to get his first SubQ IG infusion (to help his immune system). Barring any problems we should be home on Thursday! This is kind of a "fun trip". Missy's daughter has been sick, so I decided to try my hand at Priceline and get a hotel room. Well, we wound up in a 4 star boutique hotel in downtown Houston. In Alex's words, "And I used to think Hampton Inns were nice"! I think I have created a monster with expensive taste!

I will update after the appointments.