Today we woke up and went to early breakfast. After we ate, we popped in and met Woody Woodpecker! He was so good with Ally. She was a little hesitant, but he sat right down on the floor. She sat next to him. That was the first autograph of the day.
In the info packet we got yesterday, it said Disney characters would be outside the House of Hearts at 8:00. We got up in plenty of time, so we walked up to see who was there. To our surprise, we saw LOTS of characters!! First, Ally saw Goofy. He was soooo tall, she didn’t quite know what to do with him. She wasn’t sure she wanted to be too close, but she warmed up quickly. Belle was there too! Ally walked right up to her, and they had nice little conversation. It was cool! She ran right over to Pluto and stood right by him, waiting for his picture. It was so cute how she really got into seeing the characters. With Ally, it could go either way, you know. She was so happy! They told us Mickey and Minnie were inside the theater! Yes, the king of all mice in the flesh! She was so patient waiting her turn to go up on the stage to get her picture taken. She walked right up to them and stood there waiting for people to take her picture. It was too cute! Mickey was quite taken with Ally. He came over and gave me a kiss with his nose, put his hand over his heart, and then pointed to Ally. While Ally liked Mickey, she REALLY liked Minnie! - We were so thrilled she got into seeing the characters as much as she did.. After all that excitement (it wasn’t even 9a.m. yet), we ate breakfast and it was off to Sea World!We had a blast at Sea World. Ally did soooo well! Right when we got there, we had our pic taken with Shamu. Because Ally is a Wish child, she is given lots of “perks” at the park. One of them is to get free trays of fish to feed the animals. Our first stop was the sting ray pool. Ally enjoyed looked at them and watching Nana and Daddy feed them. We happened to round the corner and saw the dolphin feeding was happening within minutes, so we decided to get in line and wait. As we were standing there, a worker came and tapped me on the shoulder and said she saw we were with Make-A-Wish. She took us out of the line, and down the exit to a special entrance. She proceeded to give us four trays of fish (three more came later) to feed the dolphins. It was really cool! We were so close to them. Ally thought they were cute! Both Brad and I were able to touch them. — We found out that the Make-A-Wish pin allowed us to go in the exits of each ride and jump right on! We rode a couple of really cool roller coasters (we meaning Brad and I). Manta was so much fun. I usually don’t get scared on roller coasters, but that one freaked me out just a little. On this coaster, you hang so your body is parallel to the ground. Brad thought it was one of the best coasters he’d ever ridden! –Because of a great tip from Brad’s brother, Bert, we had lunch at “Dining with Shamu”. Actually, we were able to have a nice lunch while the Shamu show was going. We sat at a table on the waterfront at a pool behind Shamu stadium. As soon as the actual show was over, the trainers came back to where we were having lunch and gave us a behind the scenes look at the whales and how they train them. It was really cool! Shamu and two other whales were participating in our private show! (Well, semi-private show…there were other people at lunch too, but it was so up-close and personal. We got TONS of really cool pics. One of the most exciting parts of the day was the fact that Ally got on some of the rides!!! She loved them! There was a jelly fish ride (similar to the tea cups at Disney). She kept turning the wheel so the car would spin and spin and spin. The girl never gets dizzy. She had a smile on her face that was bigger than I’d seen in a while! Her laugh came from all the way down in her toes. She was cracking me up! –We came home and went to the brand new pool that just opened last week. Ally had a ball! – This evening was Christmas at Give Kids the World. Santa comes and is available for pics. We waiting in line to see him. Ally was not quite sure about him. She sat on his lap with the rest of us, but she didn’t really like it. Each child got to pick out a toy from a HUGE toy shelf full of brand new toys and games. She picked the game Chutes and Ladders.– Ally is having so much fun! It is beyond cool to see her having such a great time. — Benjamin is doing awesome at my sister’s. She said he asked for Ally today, but he’s been just great! He was asleep when I chatted with her.– Tomorrow we are off to Disney’s Animal Kingdom and Epcot for a bit!
We had a great time yesterday. Brad and I took the kids to the pumpkin patch after Benjamin’s nap. We decided to go to a different pumpkin patch this year (the one by our house) for something different. There were so many things for the kids to do. There was a straw maze, a “fort” with a slide, animals on display, swings (including a tractor tire swing), and the pony express. The pony express was too cool. A large tractor pulled several “horse cars” around the farm. Ally rode with Brad, and Ben rode with me. They LOVED it!! We always wonder if Ally will like things like this. She jumped right into the car and yelled, “Giddy-up horsey!” Of course Ben loved it! He kept saying, “Mommy, this is fun!!” - The only problem with the whole experience was that my camera ran out of battery after just a few pictures. (Of course the extra battery was at home.) The pics that are posted are the only ones I got to take. I’d like to take the kids back next weekend to get more pics.
Ben - He started school this year at The Morgan School. He LOVES his teacher, Ms. Rosa. He really, really likes it, and he’s doing quite well. When we first arrive at school, he looks for all his friends (in particular Spencer and Avery - I think because they usually arrive about the same time). He has Spanish language class twice a week, and he really enjoys that too. The other day, he was counting in Spanish instead of English, and on the way to school he said, “Buenos dias!” Too cute!
Ally has started kindergarten at Twin Chimneys Elementary School. She is doing GREAT! We are thrilled. She is learning to write her letters now. She can write her name and has been able to do that, but now she’s learning the other letters too. It is fun to see her try to write letters while she’s coloring.
We are two weeks away from Allyson’s Make-A-Wish trip to Orlando. We will be staying at Give Kids the World (a village designed especially for wish kids), and we’ll get tickets to Disney World, Universal Studios, Sea World, etc. She is excited to see the princesses and the princess castle. Each day she talks more and more about her “trip”! I think we are all looking forward to it.
Here’s the website for Give Kids the World if you are interested in taking a look. http://www.gktw.org
Ally has had a cough since the end of May. Her pulmonolgist, Dr. Choo-Kang, has been working with us to try to get rid of it. Unfortunately, what we have done to date hasn’t worked, so today we had to go to St. John’s for a bronchoscopy. He wanted to get down into her airway with a scope to see what he could see. Here’s the verdict: some inflammation (bronchitis), probably infection in the outer-most sections of her lungs, and severe tracheomalacia (the biggest problem). When viewing her trachea, he saw that when Ally breathes, sometimes she has 90% closure of her trachea (no wonder the poor kid can’t clear anything out of her airway when she coughs). So what does this mean for Ally? The first thing we have to do is get rid of the cough, so she’s going to be on an inhalant (helps keep her airway open), an oral medication (to hopefully help strengthen the muscles of her trachea), and more than likely, she’ll be on an antibiotic to get rid of a probable infection . More long-term treatment includes using a VEST, an actual vest, that Ally will wear that oscillates her chest. She’ll need to wear that 20 minutes two times a day (indefinitely) to help get the secretions moving. Problem…insurance doesn’t like to cover the VEST, and the cost is several (whatever you are thinking is several, multiply that by five and that is how much it costs) thousand dollars. Yeah, we’ll cross that bridge when we have to. — The above treatments will be on-going (like forever), minus the antibiotic, of course.
Other things we need to do… Ally needs to have another sleep study done (this involves spending the night in the hospital, hooking her up to TONS of wires, and then having someone monitor her sleep throughout the night). The doc wants to see how this condition disturbs her sleep. If she has too many periods of apnea, she will likely have to wear a CPAP machine at night to be sure she breathes throughout the night. — Ally also needs to have a CT scan done. It is possible that there is blood vessel leading from her heart that is pushing on her trachea that is causing the problem (or some of it anyway). If that is the case, surgery will be required to correct that.
Did she get this because of the leukemia? No, this is unrelated. Because she has Down syndrome, her muscles have a lower tone than a typical child - even the muscles on the inside of her body. The muscles surrounding her trachea between the cartilage rings are weak, and that is causing the problem. Tracheomalacia explains why she has such trouble with respiratory issues in the past. Poor kid.
There you have it, the details. We’ll keep you posted on the blog in the coming days. The sleep study should happen within the next few weeks. The CT scan will happen in seven weeks. Keep us in your thoughts.
Yes, it has been a while…
Yesterday was a great day. We loaded the kids up in the car and took them to the movie theater. If you know Allyson, you know that may not have been the best idea because she does not like loud noises. She has a difficult time filtering noise, so lots of noise bothers her. AMC West Olive movie theater had a special showing of UP for families of kids with special needs (all kinds of special needs…Down syndrome, Tourettes Syndrome, Autism, etc) . They kept the lights up a bit and the sound down a bit. There were no trailers at the beginning, so they could begin the movie right away. We could bring our own snacks as well. We decided we’d go and give it a try. If she didn’t like it, we leave. We pretty much figured Benjamin would like it.
I carried Ally in, and we found a seat. She did not like it at first, but she wasn’t screaming and bolting for the door. We had seats on the end (good thing), so Brad took her and let her do what she needed to do to get used to it. She walked all he way to the top of the theater. She and Brad sat there for at least half of the movie. She’d put her hands over her ears when she needed to, and eventually they came down and sat with Benjamin and I. (As we thought, Benjamin loved it. He did GREAT!! He sat like a big boy and watched the entire movie. He got a little antsy at the end, but that was fine.) I can’t believe we all were able to stay and watch the whole movie!! Another break-through! Thank you AMC theaters for allowing families like ours to enjoy a movie together without having to worry about being distracting.
Today was the Down Syndrome Association annual Buddy Walk. We got up and went to the Muny parking lot at Forest Park. The kids got to run around a little bit, and we were able to participate in the walk as an entire family for the first time. We were so glad to see how much this event has grown. There were so many people there…such a great thing to see.
Both kids were tired from the busy weekend.
This week will be busy too. Benjamin and I are going to the circus on Wednesday, we’re all going to the Magic House for a Friends of Kids with Cancer event on Thursday, and Friday, Brad and I are going out to dinner for our anniversary.