An Update on Abigail

Sorry guys, my computer is old and slow, and we still only have dial up Internet, so it takes awhile to write a post, especially when I am including pictures. I am going to finish up telling you about the trip, but first I am going to take a break and give you all a general update on Abigail and on our family.

We are nearly ready for Princess Abigail to start school at the Houston Woods Early Learning Center. It has been a process getting through the Individual Education Planning (IEP) process, but I think it went about as well as something like this can go. She should be starting any time now, as soon as the agency that Lamonda, her regular nurse needed to hire through, finishes up the paperwork. I have met the teachers and therapists that will be working with her 5 days a week from 8:30 until 11:00. They are very comfortable and natural in their interaction with her, and seem knowledgeable about Abigail's condition. Furthermore, they have a lot in the way of supplies like switches, computer programs, and sensory toys that may be of benefit to her. As such, we have decided to use the school district, and not the Conductive Learning Center mentioned in a previous blog at this time. Since Lamonda will be in school with her, I will know first hand how things are going, and can adjust this plan as necessary.

Speaking of school, Josiah has been in preschool at Montgomery Community Church for about 3 weeks now, and is loving it. And Levi is loving our one on one time together while Josiah is in class. He takes such ownership, and doesn't even really want me to step into his classroom! My big boy is growing up!

Now if only I could teach him more kindness to his little brother...Monday he pushed Levi off of the toilet in the bathroom, because Levi would not turn off the water in the sink. The result was 3 and 1/2 hours at the emergency room waiting and 3 staples in the back of his head. That makes 2 sets of stitches for each of them so far...which means what? That I have 2 healthy normal little boys, or so I am told...

Abigail has been successfully weaned off of the Labetalol, and we are now on to the Valium wean . We are proceeding slowly, because we really want to control these seizures. Please make this a matter of prayer. Also, she has a sleep study to determine whether or not the Bi-PAP machine is necessary when she is healthy. We had to cancel our previous appointment, because Abigail was sick with something respiratory, and it didn't seem like the best time to assess this. Also, next Thursday we are having a Trache Scope (routine, they put her under anesthesia and look inside her trache to make sure that everything looks healthy and is where it is supposed to be). We are also putting tubes in her ears, since she has had chronic ear infections, and has not been showing us symptoms so that we can treat them. Please pray for a smooth recovery. Her ENT doctor is a Christian, and is willing to pray with his patients prior to surgery.

On to something more exciting, progress. Abigail as I mentioned before had stopped using her hand, and so we were looking for another way for her to control and play with her toys. We recently purchased an eye blink switch, and it is working great! She is back on the computer reading stories. Actually, she is starting to use her hand again to. Please pray that she will master the eye blink, learn to make choices, and ultimately progress to a communication device. My worst fear for her is that she is "stuck" in there, and just trying to talk to us!

Lastly, a major blessing I wanted to share. An anonymous individual from my church offered to purchase some things for Abigail, including a Tumbleform Seat and a year of Cranial Sacral Therapy. We received the seat yesterday. Look it up online if you are curious. It is terrific, because when we are playing she can sit on the floor next to us at our level and be a part of the fun. Thanks so much, if you are reading our blog! God bless you!

I will talk to you all soon, and try to finish posting the trip when I get a chance.

Disney World 3

On Wednesday, day 3 of our trip, we started our morning at Keaton's Korral at GKTW. Abigail, Josiah, and Levi each rode a horse, but Abigail slept through her ride...Afterwards, the children were each given honorary cowboy hats and certificates stating that they were now members of Clayton's Saddle Club.

Afterwards we headed on out to Disney Animal Kingdom and saw 3 main attractions: First we saw the "Its Tough to be a Bug" ride. It is a 3D animated ride where you put on 3d glasses and are indoctrinated by Flick as honorary bugs. Unfortunately, the bugs attack you, and Josiah freaked out. Maybe we could have skipped this one...Next we saw the Finding Nemo Musical. It was very cute, with puppets, music, and acrobatics. And it was in the air conditioning. Lastly, we went on the Kilimanjaro Safari. For 18 minutes we viewed tons of free roaming animals. Josiah loved it, because he loves animals. Most of the time, he named the animals before the guide.

We stopped for lunch on the way out at the Rainforest Cafe, and discovered that Abigail like to watch fish! I have never seen her track anything so well before! It would be wonderful to incorporate this into her therapy at some point.

Disney World 2

By our second day on the trip, Abigail and Richard were starting to feel better. We woke up early and headed out the Disney Magic Kingdom and the Bibbity Bobbity Botique, where Abigail was transformed into a Disney Princess, with the help of her fairy godmother, of course. Abigail blinked to choose her gown (Cinderella, of course), makeup, and nailpolish colors. She even fit perfectly into her glass slippers (her first real pair of shoes since the accident). I am hoping to find a glass case to display them in her bedroom. Her beautiful dress is already hanging on the bedroom wall. Guess what she is going to be for Halloween?

We visited a handful of attractions, but the weather was hot and humid, so we had to limit our time outside, and take multiple air conditioning and drink breaks. Among the things we did were: Cinderellas Golden Carousel, Dumbo the Flying Elephant, Its a Small World, The Many Adventures of Winnie the Pooh, Buzz Lightyear's Space Ranger Spin, and the Astro-orbitor. Abigail's favorite was Its a Small World, and the boys favored the Buzz Lightyear ride. We were so spoiled. We didn't have to wait in line for anything!

Everyone even enjoyed the transportation to and from the theme parks. On the way in, we rode the tram, and on the way home we rode the boat.

Aside from all of the attractions, the GKTW village had plenty of activities as well. Tonite was family fun night at the village. There were kickballs, footballs, music and dancing, and a life sized connect four game. Abigail and I hung out and shared an ice cream while the boys played.

Our Trip to Disney World

So much has happened since my last post...where to begin? How about with our trip to Disney, and we will fill you in from there. I kept a journal on our trip, because I just didn't ever want to forget anything about her special trip, so I will share it with all of you here.

On Monday 9-7 we woke up early to go to the airport. Abigail had been sick for several weeks prior to the trip, and was still a little under the weather today. Richard was not feeling so great himself. We wore our Make a Wish buttons, and the curbside check in man was very kind to us. He carried our bags inside, and they actually waived the baggage check fee. Cool! We made it through security and ate breakfast while watching the planes from our departure gate. The flight itself for Abigail and Richard was horrible, because of their congestion. Abigail did a little better once we got her started on the oxygen. The boys loved the flight, and Josiah was unwilling to give up his window seat (even on the way home). When we arrived in Orlando we met our airport greeter who helped us find our bags and load them into our rental van. Off to Give Kids the World we go!

When we arrived at the House of Hearts Abigail was given a stuffed Mickey Mouse, and the boys were each given Shamu stuffed animals. Our castle for the week was located across the street from Matthew's Boundless Playground, the worlds largest and only life sized version of the Candyland game. There was another bag of goodies waiting inside for Abigail at our new home for the week (Josiah still makes references to our orange house).

Abigail and daddy needed their rest, so the boys and I headed out to explore the GKTW Village. We played on the playground, rode on the carousel, and found the ice cream palace. They also petted a live sloth from SeaWorld.

I will continue to post bit by bit...