Wish Trip

Michael was amazingly blessed to receive his wish to go to Walt Disney World in Orlando, Florida this past April 2010. The trip to Florida was a challenge and an adventure. Although Michael still says he wishes he could have had his first wish for ABC Extreme Makeover to come or an RV to live in since we are losing our home, he definitely had a fun time there. The staff and all the people involved to make this happen were just amazing. Michael's favorite ride was Space Mountain and Test Track was a close second. I enjoyed Test Track as well. There was plenty to do, and the free all you can eat ice cream shop at Give Kids The World was a favorite. Make-A-Wish tried really hard to make the trip extra special. What an awesome group of people. The kids enjoyed it. Shawna liked the Cat in the Hat ride at Universal Studios Dr. Seuss land. Michael got to meet Spiderman, Captain America, Rogue and Storm superheros backstage with a picture and autographs as well as Mickey, Pluto etc at Disney. I thought that was superbly cool. My suitcase was lost the first two days by Southwest who found it later and sent it to me. My saving grace was the washer and dryer in the villa we stayed at in Give Kids The World resort with free laundry detergent. Scott enjoyed the tour at Kennedy Space Center until they lost Michael's wheelchair. Some park guest had stolen it out of their secure area. Praise the Lord, they found it about an hour and a half later. Joseph liked the Spiderman ride. Joshua liked the Mission to Space ride. Gabriela says she also enjoyed Space Mountain the best. Between wheelchairs, medications, reactions to chlorine in the swimming pool, Michael's food getting stuck (esophagitis), breathing treatments, oxygen on the airline for Joseph, seizures and daily poopy accidents with some of the kids, honestly I was quite tired. We went to Epcot on Spaceship Earth. Shawna had a blast pressing buttons and pressed Spanish. The whole ride I could not understand it. There was no way to change it to English, and I was nearly in tears. I liked the Ferry ride Disney had between the ticket area and the park entrances mostly because all I had to do was stand there and enjoy the water and the evening view of the lights. It was pretty and relaxing. Getting home was interesting. Joseph had trouble breathing at the end of the flight, so when the plane landed in Kansas City, MO, we called cardiology. He was already on oxygen, so he could not fly. We drove home because he seemed stable on room air. We thought it was just altitude on the plane. Well, as we got into OK and TX, Joseph had trouble breathing (RR78, pale, complains he can't breath, O2 sats in the 70's in the literal middle of nowhere while we are driving). We put him back on oxygen at 2.5L with the oxygen concentrator that had been rented for us. He stabilized, so we kept going. He was ok as long as on the O2. Not thinking anything about the altitude of the states we were in, we finally figured out that was the issue. Altitudes ranged from 3600 to 7700+ feet in elevation. When we hit New Mexico, the oxygen concentrator failed. We had to wait for another one to be overnighted as we had become aware that from Santa Rosa NM to Flagstaff AZ elevation only continued to go up from 4400+ feet to over 7700+ feet. Joseph could not make it home without it. We were only glad to finally make it home on Michael's last $50.00 for gas without having to lifeflight Joseph out to an out of state hospital. Michael was pleasantly surprised by a limo ride home when we returned the rental car they provided. We were pleased to learn they would reimburse us for all our expenses on the trip home. The emergency contact person stayed in regular contact with us while we drove home and was our guardian angel. I feel like I need a shirt that says I survived Walt Disney World or something. It makes me appreciate the simplicity, if you will, of relatively local vacations. Joseph can't fly ever without being on high rate oxygen because a concentrator won't cut it for him. His left ventricle is weak. Pulmonary saw him when we got home. It appears he may have some asthmatic type of component to his heart and lung problems, so he is on breathing treatments twice daily and for difficulty breathing as needed. He is not your typical asthmatic, so I didn't even guess. We found out he actually strained the sternocleidomastoideous muscles in his neck from working so hard to breath, and is still recovering from that. The pediatrician says Joseph should simply not be going to altitude. Pulmonary is trying to get us oxygen for him for his episodes when he desaturates into the 80's; and so far, he is not in the hospital or emergency room and relatively stable. Considering that he has already had two close calls in his life, once being "reanimated" after heart surgery at 9 months old and once after a heart cath, Joseph is a miracle boy. Michael is still having seizures, and will be going back into the hospital the end of this month or beginning of June to try again and figure out why. We are trying to short sale the house. We don't know where we are going. Not being able to move to elevation and needing to stay close to good medical care really limits us a lot. At least, we have until the 28th. We know there is no sale date for the house between now and then. As far as mortgage companies go, HSBC sucks. They are cold hearted. Their idea of a "modification" was a payment $600 over what we even bring in in a month. On the brighter side, Michael gets his electric wheelchair tomorrow. I am thrilled to not have to carry him anymore; his 83 pounds have taken their toll on my back. He just is way to big now for strollers and grocery carts. Poor kid. I will be glad to let him do things that make him feel more independent and "walk" in the store or mall without help. I don't understand the problem with his muscles, but he gets so tired that he falls a lot and has resorted to crawling on his knees. With all the medical complications, Scott and I have decided it is simply a medical necessity for me to be home with the kids. Scott is still looking for work, so we are trying to find a way to make it on one income. I didn't think I would be so long winded, but there you have it. His trip to Walt Disney World was extremely trying and extremely fabulous at the same time. I am so glad that he got to go, and I must admit I enjoyed being able to get a chocolate milkshake any time I wanted. If I ever had to do it again, I would insist on helpers to come with us.

God Bless You,
Jennifer Richardson