Dear Son's Make a Wish Journal-Day 2!

Monday, May 17, 2010-Day 2

For the second day of Dear Son's Make a Wish trip, we decided to check out the sights at the Give Kids the World Village, where we were staying. Before I get started, I thought it might be helpful to understand what Give Kids the World is, then go into what is offers and what we did.

Some background on Give Kids the World Village:

• Give Kids the World (GKTW) is an independent, non-profit organization that partners with over 250 wish organizations to provide memorable week long, cost-free, fantasy vacations for children with life threatening illnesses.
• It was founded in 1986 by Henri Landwirth however the actual village did not open until 1989. It is a 70 acre resort complete with over 140 villas plus several attractions.
• They provide vacations for children 3-18 (and their families) who have been diagnosed by a licensed physician with a life threatening illness. While GKTW does not grant wishes, they do partner with the wish organizations but operate independently.
• They are located in central Florida.
• Their expenses are 12 million dollars annually.
• GKTW has over 3500 volunteers and get their funds from individual and corporate sponsors. They also hold various fundraisers throughout the year.
• During an average week, over 1500 volunteers donate their time and talent to the Village.
• Now, on to the attractions! While we spent Sunday getting to Florida and letting Dear Son recover, we thought we'd spend the first day of our vacation checking out this resort. GKTW has multiple attractions.

One of the first things we did was to visit the Amberville Train Station. Dear Son has always loved trains so I knew he would like this. The trains are set up in a room that has a complete model railroad. There are several trains that run around the tracks and the tracks are at various levels in the room. One track runs near the ceiling and another at eye level for the kids. What's great about the train station are all of the attractions set up in this model railroad. There are buttons outside of the model railroad that kids can push to get things to move. So at one point, there is a carousel and when the kids push the button, the carousel moves. After twenty minutes or so, the sun disappears and the thunderstorms begin. It rains in the train station and you get to hear and see the rain. Not only that, you feel it get cooler. There is something for all of the senses, which is great, since some children process information differently. We really enjoyed the train station. J.J's Express

In addition to the model railroad, there is another train located outside, called, "J.J's Express". We were pretty excited to ride this train around the property however it was broken and they didn't know when it would be fixed.

Next, we stopped over at the Enchanted Carousel. The carousel consisted of several horses and a turtle. The turtle opened up to admit a wheelchair and then swiveled around and locked so he could enjoy the ride. It was great to have things so accessible. So often, when you have a special needs child, everything seems hard and it was great to come to a place where having a kid in a wheelchair wasn't hard but was easier. Prior to our trip, when I would be getting Dear Son's feeding going, I would tell him how easy everything was going to be and how it was made for kids in wheelchairs and how much fun he was going to have. He'd have this sparkle in his eye as he'd get right into the fantasy with me as I described this ride. It was great to actually be here and do all of the things I had talked about with him. It was interesting too, to see his face as we went through these attractions. I think everything was far beyond his wildest dreams. As for the carousel, I think he really enjoyed this ride. The volunteers on the ride went all out to make it fun for the kids. They really did a great job.

In addition to the carousel was the miniature seven hole golf course, otherwise known as, "Marc's Dino Putt." Even if you didn't golf, they recommended that you drop the golf balls into the holes to see what the dinosaurs would do. Very cute.

Each day, there were a series of events at the village. They outlined all of the events in the village guide. The events ranged from Disney character photos, to pool parties, horseback riding and carriage rides. One of the things we needed to do was to plan our time wisely. Prior to our trip, Dear Son could only sit up for around two hours at a time. He also had only been going to school two days a week and half days at that, so we had to pace ourselves a bit. We decided to plan our days doing the things we wanted to do most in the first part of the day, then giving him time to rest. As it turned out, we ended up getting his breakfast, having lunch out at the attractions and then coming home. Once we were home, he would sleep the rest of the day so essentially we weren't able to do many of the evening attractions.

Some of the other attractions at the village included Keaton's Korral. They offered horseback riding for the kids as a weekly attraction. We wanted to do this however the kids had to be able to sit up on the horse and Dear Son couldn't do that. That was fine though, there were plenty of things to do. If you are planning a trip here, I would recommend that you make sure to ask questions before some of these events, to make sure your kids can do them. I asked ahead on the horseback riding and at first they said yes and then when I mentioned he was severely disabled, they said he had to be able to sit up on the horse. Since they have so many volunteers, you just need to be able to ask the right questions.

One of the things that we loved was the pool otherwise known as the, "Pool of Dreams." Give Kids the World has a zero depth pool meaning you can walk into the pool and it goes in graduated depths to a maximum of four feet. This was perfect since you can take a pool wheelchair (These are wheelchairs that are waterproof and are designed to get non-ambulatory children in the pool.) and get the kids in the water. Our initial plan was to see the attractions during the morning/early afternoon and then come back and go to the pool every day. If we had one glitch in the week, it was the pool. The brochures had indicated that the pool was fully accessible so we planned on swimming. When we couldn't locate the pool wheelchairs, the volunteer told us to come back in the afternoon since they were being repaired. This was a bit heartbreaking since the train was broken and now the wheelchairs. We had brought Dear Son's swimsuits and Make a Wish had provided a new life jacket for him. To make a long story short, we came back some five times that day only to be told by different volunteers that the wheelchairs weren't ready. Finally, I asked to speak with the Manager of Guest Services. She called maintenance while she was with us and I heard him say that the wheelchairs wouldn't be ready until June 1st! We were heartbroken! She was determined to get one for us and about an hour later, she had a pool wheelchair for us to use! Yay!

Once we got Dear Son into the pool, the arm fell off the wheelchair. We were still able to get him in the pool and really enjoyed ourselves. The good news is that they kept the wheelchair there all week and even though the arm kept coming off, we were able to swim several days while we were there and had a fantastic time. Everything else on our trip was fantastic and that was the only glitch we had. All in all, a great trip!

In addition to the pool, was the Ice Cream Palace. This was a cute little shop with all of the ice cream being donated by Friendly's Ice Cream. The Ice Cream Palace was open nearly the whole day and it was wonderful to see all of the kids going there for ice cream. Dear Son went there twice I believe and really enjoyed it.

Next was the Gingerbread House. This is where all of the meals are provided. When you arrive, you are given a card for your family and you have several choices for meals, one of which is the Gingerbread House. The Gingerbread House is really cute. The chandeliers consist of gingerbread men and the tables are made from over 27,000 peppermint candies. Along the top of the walls of the gingerbread house, are over 2,000 dolls which were donated by families all over the world. I couldn't stop thinking about who would be dusting all of those dolls! At the Gingerbread House, all of the chairs are kid size and the meals are cafeteria style. They have umpteen volunteers there that insist on taking your tray to the table for you. This was just one of the million ways they pampered us here. It may not seem like a big deal, but when you spend your days taking care of someone else, it's really nice to have a moment where someone takes care of you. The meals were good here too.

There were several other meal options as well. For breakfast, you could go to the Gingerbread House or the Ice Cream Parlor where they had an express breakfast. For lunch and dinner, you could choose between the Gingerbread House or Katie's Kitchen. Katie's Kitchen was Boston Market. Boston Market donated nearly a million dollars to fund this and Katie's Kitchen is an abbreviated Boston Market menu. The food was delicious. Thank you Boston Market!

In addition to these options, they had pizza delivery, ice cream in the Ice Cream Palace from 7:30 a.m.-9:30 p.m. and then a breakfast cart in the morning where they would stop at your curb for breakfast and/or a cookie cart that would deliver desserts to your villa. We never tried the breakfast cart of cookie cart though.

One thing that was nice was having these options. Due to Dear Son's feeding schedule, we weren't able to have meals together. For breakfast, one of us would have to stay at the villa while Dear Son was feeding and the same thing at dinner. Dear Son was too exhausted to take him out after 5 p.m. so it was wonderful having Katie's Kitchen (Boston Market) as an option.

One of the things that also made it relaxing was not having to cook for a week. GKTW provided every meal and the Make a Wish Foundation provided lunches at the attractions.

After we checked out the village, we returned home and got ready for the orientation at 7:45 p.m. that evening. GKTW had an orientation in the evening where they spend an hour giving you tips about the various theme parks and then give you passes for each of the parks. The theme park passes are donated to GKTW and are given to each of the families. We had three day passes to Disney, two day passes to Universal and one day pass to Sea World. In addition, we had GKTW buttons which entitled us to free parking at the theme parks. If that weren't enough, the theme parks donated special passes for kids with disabilities so they wouldn't have to wait in line. This was really something.

Once I returned to the villa, I began planning for the next day. Each night, I would take your suggestions, along with going through each of the theme park brochures, and plan the following day.

All in all, a great day.

Coming: Day 3-Universal Studios and a Meet and Greet with Barney

Dear Son's Make a Wish Trip-Day 1-We're Off to Orlando!

It was hard to believe that one year ago, we spoke with the Make a Wish organization about a wish for Dear Son and the day had finally arrived for us to leave for Orlando. Back in October of last year, I created a Make a Wish travel notebook to help me prepare for our trip. During our trip, I kept a journal of each day of our trip, so I could share it with you and also remember all of the glorious details of our special trip. A special thank you to Laura and Angela, our wish sponsors, along with the Make a Wish organization, for making our trip a great one. So let's get started!

Sunday, May 16, 2010-Day 1

Our flight for Orlando was scheduled for 11 a.m. so the limosine was scheduled to arrive at 8 a.m. I had been up all night trying to make certain that I did not forget any little detail and to try to make sure the flight went smoothly. This would be the most challenging day of the trip, since I wasn't certain if Dear Son could sit up long enough to make the actual flight, let alone sit up at the airport.

Windy City Limousine was scheduled for 8 a.m. which meant I needed to get Dear Son's feeding started at 3 a.m. It's a four hour feeding in the morning and I wanted to give him an hour to urinate so we wouldn't have to worry about him going to the bathroom on the plane since he is not toilet trained. Everything seemed to be going fine and the limousine arrived 15 minutes early. The limousine was really something. It was actually a large, white brand spankin' new bus with black leather seats. It was only ten days old and nearly the size of a regular city bus. It even had the "new car" smell. It was great to finally be on our way to Florida. I had talked about this trip with Dear Son for months and it was great for it to be actually happening.

I had printed our boarding passes and checked our bags the night before so I could use curbside check in. Once that was done, we went into formerly nation's largest airport where the TSA whisked us through. We never waited in line and it went pretty fast. I asked for a "visual" inspection instead of going through the normal security since Dear Son has a Vagus Nerve Stimulator implanted. Everything went great!

Dear Son sleeping at the gate.

Once we arrived at the gate, I asked to gate check Dear Son's wheelchair and requested an aisle wheelchair to get him on the plane. They gave me a receipt for his wheelchair. At the gate, I chose to lie Dear Son down so he could rest enough to sustain the ride. Fortunately, the benches did not have arm rests so I could do this. (This was not the case at the Orlando airport so on the return trip I was unable to lie him down to rest at the airport.) We were quite early for our flight so we spent a few hours at the gate.

Dear Son sleeping at the gate.

As our flight time got closer, no one had arrived to take Dear Son's wheelchair. I went to the gate again and finally they sent someone to look at his wheelchair. The flight began boarding and we still did not have an aisle wheelchair to load him on the plane. I spoke with the agent at the gate again and they said they were paging the TSA and that they were responsible for the aisle wheelchair. The entire plane was fully boarded when they finally arrived. We were the last people to board the plane. The TSA states they were never called. We ended up using Dear Son's wheelchair to get him to the plane and then transferred him to the aisle wheelchair so he could get on the actual plane. Because Dear Son has no tone, his arms and legs flop all over. This made it tough for him to sit in the aisle wheelchair. Dad ended up placing the straps over his arms in order to keep him from falling out of the aisle wheelchair.

Dear Son in the aisle wheelchair. This wheelchair is narrow enough for him to board the airplane.

Due to Dear Son's low tone, Dad had to strap his arms in to keep him from falling out of the wheelchair.

Once he was on board, we had to transfer him to the seat. Dear Son and I had a first row seat in the coach section which was the only row that had enough room to transfer him. Dad was supposed to sit two rows back however at the last minute, when the man with the aisle seat saw the difficulty in transferring Dear Son, he switched seats with him. It was difficult getting Dear Son out of the aisle wheelchair and into the seat. Dad had to lift him from the aisle wheelchair, into the aisle seat and then we both assisted in transferring him to the middle seat. And the entire plane got to watch us do this, lol.

Dear Son was fine until the plane started to move for take off. Then he got a little scared and looked like he was going to cry. We both held his hands and he seemed to hold on for dear life. This was unusual for Dear Son since he's usually a pretty brave boy and I've never really seen him be scared of anything. He's changed a little since his hospitalization in November though and isn't quite himself as much. I started talking to him about how exciting it was to fly and how he would love the take off. I told him that was my favorite part. I told him the pilot steps on the gas so the plane would go really fast and that I thought he would like it. I told him men really love this part and that a lot of the pilots were men. He listened intently and soon the plane started going faster and Dear Son's head went back into the seat. As soon as the plane took off, Dear Son had a big smile on his face and he really seemed to like it. He kept smiling after that and I continued to talk to him about the ride.

During the flight, the man who gave up his seat came back to our row to help his wife and kids. He had two special needs children, one had Down's syndrome and was a diabetic. That child ended up getting sick on the plane and throwing up. The other child had cerebral palsy but could talk. These parents had their hands full. We talked to them after the flight since we both had to wait for aisle wheelchairs to arrive. We had to wait for the entire plane to get off and then another twenty minutes or so for the aisle wheelchairs to arrive. United needs to put a system in place so that disabled people can get the aisle wheelchairs on time.

The plane ride went smoothly. Dear Son didn't go to the bathroom at the airport or on the airplane. I did put a few pads down on the seat, just in case, but we were very lucky. I managed to feed him his lunch on the airplane and gave his tube feedings via syringes. I had packed everything in a carry on bag for the feeding so it was very easy. Some people had suggested that I not feed Dear Son to keep him from urinating however I don't think that any of us would like to go on vacation and be hungry or not be able to go to the bathroom at the airport. I believe in treating Dear Son like I would like to be treated.

Dad and Dear Son at Orlando Airport.

Once we arrived in Orlando, we picked up the wheelchair van from Vacation Mobility*. He met us at the airport and wore a red derby hat so we could spot him easily. They are a gracious company and very friendly. They had contacted us two days prior to our trip to confirm. Since I don't have a wheelchair van, they needed to show us how to tie down Dear Son's wheelchair for transport. He instructed Dad on this procedure and we were off to the resort.

Dear Son checking out his new wheelchair van.

We arrived at the Give Kids the World Village. After check in, we went to our villa and were greeted with a bag full of presents for Dear Son. His favorite present was the stuffed Mickey Mouse. I told him this was the same Mickey Mouse he sees on t.v. on Saturday mornings. He seemed to get it then and really liked Mickey. It was one of his favorite gifts.

Lobby of Give Kids the World Village.

Dear Son arriving in the lobby.

Someone's always watching over you in the lobby!

Our villa was complete with a washer, dryer, full kitchen and whirlpool, which I loved. The washer and dryer made life easier for us since we often need to do a lot of laundry with Dear Son. The Make a Wish organization had also offered to provide all of our supplies at the villa so we wouldn't have to transport all of them. This was huge since the volume of supplies I would have had to pack would fill two suitcases. Most of the supplies were delivered but there were a few glitches. The hoyer lift wouldn't roll so it wasn't usable. The hospital bed was delivered however only the head and foot of the bed raised and lowered but the actual bed did not. This made diaper changes hard since it's tough to bend over. The medical company shorted us on a few of the supplies and had contacted me the week prior with difficulty in getting the formula and had me bring two days worth. Unfortuntately, the were late and it didn't arrive until the third day however I had brought extra formula just in case. None of this was Make a Wish's error since they everything was confirmed prior to our trip. I contacted MAW to let them know we didn't have all of the supplies and they fixed that promptly. We got by without using the hoyer lift all week as Dad did all of the lifting and most of the changing since I can't bend over very well after my back surgery.

We spent the rest of the day relaxing in the villa. We knew the trip would be a lot for Dear Son so we didn't plan anything for the first day. All in all, a great day and everything went pretty smoothly. We were thrilled to finally be on vacation.

Notes: *Vacation Mobility provides wheelchair accessible van rentals along with scooters and power chairs.

Make a Wish Pictures...

Photo of Dear Son and I at Give Kids the World Resort.

I just downloaded the photos (509!) from my camera last night along with another 200 from Dad's camera. I'll need another day or two to go through them before I can get them on the blog. Sorry to take so long. I've been swamped with work, errands and e-mails since I've been back. Until then, here is a photo of Dear Son and I at the Give the Kids the World Resort. We are standing outside of the Merry Go Round. The Merry Go Round is wheelchair accessible. They have a large, green turtle that opens up to let the wheelchair on for the ride. I'll show pictures of that soon.

We're Back!

We left last Sunday at 8 a.m. for Dear Son's Make a Wish trip to Orlando, Florida and arrived home this evening. We had a fantastic trip! I took along all of the suggestions everyone had given me prior to the trip and made a list of them for each of the theme parks. It really helped having some good ideas as I planned each day. In addition, I kept a journal of our activities each day and some of the highlights. I took a ton of pictures and will take you through our trip each day. In addition to photos of the activities and Dear Son, I also took photos showing the accessibility of each of the rides or the parks so you could see how it was done. I'll need a few days to get through the 800 plus photos but I think it will be worth it.

Some of the things Dear Son really enjoyed were the following:

• Dear Son loved the takeoff! This was his first plane ride and he seemed a little scared and was crying a bit when the plane started to move. He actually was holding both of our hands. I talked to him and told him how exciting it was when the plane takes off. I told him that it was my favorite part and that the pilot would step on the gas and go really fast. I said that "men" really like that part and that most pilots are men. (He likes when I tell him that men like things, lol!) Anyway, as the plane took off, he was smiling ear to ear as his head fell back into the headrest from the takeoff! Today, one of the flight attendants gave him some "wings".


• He got to see Barney at Universal. They did the show and he wasn't sure what to make of it all. We bought a big Barney pillow and had pictures taken with him. On Friday, Barney was scheduled to appear at Give the Kids the World and when I told him Barney would be there, he got really excited. He started getting it after a few days. The first few days I think it was a lot to take in.
  
• At Epcot, we went on the Soarin' ride! It's a virtual reality ride and you sit in these seats and they move the seats up into the air as you watch the screen. Trust me, you really feel like you are there! I tried to take some pictures while I was on it to show you however I am not sure if they turned out.


• At Sea World, we saw Shamu and the sea lion show which was fantastic! Very entertaining. We enjoyed it.
  
• Dear Son went swimming several times this week at the Give the Kids the World pool. We used an accessible wheelchair to get him into the water. It took him a little bit to relax and finally he layed his head on his Dad's chest while I held the wheelchair. Eventually, he relaxed and brought his knees up the surface of the water and just floated like he did at school. He loved it! After that, he layed on the lounge chair and closed his eyes. It was extremely hot and humid this week so the pool became one of our favorite activities.
  
• He ate ice cream three or four times this week! Dear Son hasn't eaten anything via mouth in around 18 months since he can't swallow very well however he was able to eat a few bites of ice cream and a softened vanilla milkshake!


• He had pictures taken with a few characters-Mickey and Minnie, Scooby Doo, Goofy and Barney!


• I got a cartoon drawing of Dear Son done at Sea World to remember this trip.
  
• Every day, the resort brought gifts to the room for him. Two of his favorite gifts were the picture frame that played the ESPN theme song and a Mickey Mouse stuffed animal.

Some of the things Dad and I appreciated this week were:

• The wheelchair van. That made our life a lot easier!


• The whirlpool in the room. I used that every day this week.


• Not having to wait at the theme parks. Many of the parks had these accessibility passes that Give the Kids the World gave us; once you showed the pass, you were taken to the front of the line and got right on the ride. They really catered to people with disabilities since they often can't wait. In many instances, once Dear Son was on a ride, they asked him if he wanted to go again so we didn't have to take him on/off a ride.

But most of all, we want to thank our Make a Wish (MAW) sponsors, Laura and Angela, for providing us with the trip of a lifetime. At the MAW office, Courtney worked hard at putting everything together for us. And we have to thank all of the people who made it a great week for us. The entire staff at Give the Kids the World, plus all of their volunteers, made it a relaxing and enjoyable trip. I am sure I am forgetting a few people however I will be including them as I go through and post pictures from our trip.

It was a wonderful trip for so many reasons. It was great to pack and go somewhere other than the hospital. It was great to relax and not think about medical stuff 24/7. It was wonderful to see Dear Son experience so many things that he would never have a chance to see otherwise. It was great to see him happy. On a personal level, it was wonderful to relax for a change and put my feet up. I savored every moment of the week. There weren't any meals to cook, no cleaning to be done, just fun and sun.

Last Minute Trip Preparation

We leave on Sunday for Dear Son's Make a Wish trip. Everything is going pretty well except that Dear Son had a few issues of concern prior to our trip.

Dad picked Dear Son up for the weekend on Saturday night and noticed some bruises on his right inner calf. I didn't notice them prior so I asked him to send me some pictures of them. They looked pretty bad and I couldn't figure out how he got them since it's not like he can move his legs at all anymore and he can't really bump them at all. I was swamped at work on Monday so on Tuesday, I called his teacher to see if there were any accidents at school at all. She went through his day and said that no one had noticed anything and there weren't any accidents.

Dear Son had some bruises on his left outer calf back in February. I mentioned them at our late February office visit. They were small and yellow and never really went away. Anyway, when these bruises came up on his right calf, I was concerned.

I sent pictures to Ped Neuro doc and followed up with him today. He functions as Dear Son's primary doc. He requested that we get some lab work done at the Local Hospital since low platelets can sometimes cause the bruising. He wanted to see the results prior to our trip in case he needed to make any changes to his meds. Ped Neuro Nurse explained that Depakote can cause clotting issues so the doc wanted some labs done to check his platelets. If the count comes back in range, he won't adjust anything but if it comes back low, he'll decrease his Depakote. Interestingly enough, one of the other neurologists had increased his Depakote in December and Ped Neuro Doc had left him at that dose.

As a result, I had to call Dear Son's Dad to come back over to our house so we could take Dear Son in for lab work. Dad wasn't too happy because he had just driven a 100 mile round trip in the morning to come over and take Dear Son's wheelchair in to be repaired and then he had to come back over tonight to get the lab work done. He works twelve hour days tomorrow and Friday so he needs to be up by 4 a.m. tomorrow.

Anyway, while I was changing Dear Son today, I noticed that his right testicle seemed enlarged a bit. I figured I'd have the ER doc check it out since we were there for lab work. He decided to do an ultrasound to make sure Dear Son didn't have an abscess; if it was a cyst, it would be fine but an absess would be a bigger deal. It wasn't red, pus filled or swollen so it didn't really seem like it would be an abscess however they did an ultrasound anyway and it turned out to be a small cyst.

The lab work was done stat and the platelets came back low which could explain the bruising. The ER doc said the bruising does not seem consistent with the bruising from a low platelet count but we'll have to see what Ped Neuro Doc says. I can't for the life of me figure out how he could have these bruises since he really can't move his legs at all. Even when I move him in and out of the sling for the hoyer lift, I never touch his legs at all since he is so heavy I have to roll him side to side to get the sling under him and once that's done, it's a matter of using the hoyer lift to lift him. When I roll him over at night, I have to lift his hips to turn him so I never even touch his legs so this is a bit perplexing. I do however have to lift his arms to position them.

We'll see what Ped Neuro Doc says tomorrow. I am totally exhausted today though. We didn't get home from the ER until 10:40 and Dad still has to drive some 50 miles to get home and then be up by 4 a.m. tomorrow to work a 12 hour day. I was up with Dear Son at least once an hour last night turning him over from one side to the other. He seemed rather fussy and perhaps it was the cyst that was bothering him. I don't know. It's difficult for Dear Son since he can't move his arms or legs so if anything hurts or isn't in a good position, he can't help himself at all.

On a good note, they had a nice little graduation party for Dear Son at school. I'll share all of the details once I get the pictures from school.

The Make a Wish Foundation called me today to confirm all of the last minute details. Everything seems ready to go so I hope it all goes well. They have done a great job getting everything done for us so we can have a great trip. I am looking forward to it as well.

Update: I spoke with doctor's office today and they reviewed Dear Son's lab results. The platelets were very low at 75,000 (range is 140,000-450,000) and they told me the bruising was definitely caused by the Depakote. I was instructed to hold the Depakote for 24 hours and they also reduced the dose. The platelet count should go back to normal in about ten days. I'll follow up with the doctor when I return for next steps. This is a huge relief!

Make A Wish Trip

It's hard to believe that our trip is almost here. While I've been talking to Dear Son about our trip and the things we will do, I haven't really believed it myself. Last year, I never quite believed we would go and as it turned out, we didn't. This time, I tried not to think about it too much, in case it didn't work out, but it's starting to feel like it might happen. I was creating my to do list for next week and realized that it was the last week before our trip. I guess I'll have to start checking my Make a Wish book to see what I need to do. Prior to our last trip, I made a notebook filled with a to do list, plus the itinerary and everything we'd need for our trip. So everything is pretty much done, other than reviewing the list.

Dear Son is starting to get excited too. I keep asking him when he wakes up if he was dreaming of our trip to Florida. Today, I told him that it was going to be pretty nice down there and that I'd have to buy some suntan lotion. He looked at me and then gave me a big smile. I told him that they were going to have to find someone else to fold the towels at school because he was going on vacation. He really like that.

Later today, I talked to him about the Polynesian Luau. I talked to him about what the girls would be wearing and showed him how they would be dancing and he really seemed to enjoy it. Hopefully he was laughing with me and not at me although he did seem to laugh a bit more the more I danced. He does have a pretty good sense of humor though.

I am glad to be getting away as well. I was changing Dear Son the other night at 2 a.m. and was ready to fall over in exhaustion. I just wanted to get him changed and go back to bed. Well, as it turned out, I had to do an entire bed change. It's a little challenging to do this when he's in it and at that time of night, I was all thumbs. I just wasn't coordinated in the middle of the night and everything I did took twice as long. All I can remember was praying for the Lord to help me get through the task because I was so tired. As I finished up the task and had the new sheets on, Dear Son says, "hi". It was the sweetest and most beautiful sound I could ever hear. Suddenly, everything seemed better. I gushed all over him and gave him a big hug. I told him that it made my day. I have been having a harder and harder time lately due to this sporadic sleep schedule. I am up every two hours at a minimum and night after night it really gets to be pretty tough without getting a full night's sleep. It's also seems to get harder every year since I too am getting older and getting one full night's sleep every two weeks just isn't enough.

So I think we are all ready for the trip. It will be good to have some help from Dad all week and I plan on trying to get a massage on the trip. I haven't had a massage since I worked full time, some ten years ago. I am definitely ready. I doubt I'll be able to get up when I am done since I'll be so relaxed, lol! But the best part about packing will be that we will be going somewhere other than to the hospital.

Dental Visit and the Hello Kitty Alarm Clock

Our Munchkin cat, Wiggles.

The dental appointment went well. The dentist was pleased at how well Dear Son's teeth looked. His teeth looked great under the light, plus there wasn't any plaque near the gums and his gums were healthy. One concern we had was his gum overgrowth and the thickness of the roof of his mouth. It seemed to have gotten progressively worse since he was hospitalized with the swine flu. Dear Son hasn't been on Dilantin in years, which frequently causes gum overgrowth. He said that the gum overgrowth and thickness is somewhat typical of the seizure kids he sees (The dental office is for special needs patients.) and I don't have to worry.

While the outside of his teeth looked great, I was conerned because I have not been able to clean the tops and bottoms of Dear Son's teeth (where they meet) very well since he's had the swine flu. Once he got out of the hospital at the end of November, he had these thick mucous plugs that he would cough up. His scopolamine patch dried up secretions so it essentially dried up the mucous and he'd cough it up or it would dry right on the roof of his mouth. I had to go in there with a toothbrush and dislodge it off the roof of his mouth. As a result, he got very defensive and didn't want me to go in his mouth for regular tooth brushing so I have only been able to brush the outsides of his teeth and on occasion, the inner parts even though I try every day. The dentist was able to check his teeth and Dear Son didn't have any cavities but did have some plaque on the molars however he wasn't concerned. He said it was minimal and because Dear Son feeds via a g tube, it's highly unlikely he would get a cavity.

We also talked about Dear Son's risks for sedation. In 2008, we had his teeth cleaned and sealants put on under sedation however with Dear Son's current health issues, sedation presents two huge risks: respiratory depression and aspiration. In light of this, the dentist was able to clean Dear Son's teeth while we talked. Dear Son was quiet and sat back in his wheelchair while we talked. The good news is that we don't have to come back for a year and the teeth cleaning is done!

The next day, he went to school for "Fun Friday." Last Friday he cried on the bus and the CNA asked him what was wrong then told him he was going to have a fun day and he stopped crying. He's never cried going to school. So this Friday, I had a substitute nurse for the bus. I explained what happened last week and told her if he cried, she may have to tell him he was going to have a great day and things should be fine. We had a good laugh over that.

Dear Son did have a great day. For the first time since October, he was able to sit in a rocking chair at school (they secure him in there and have someone next to him) and push his feet to rock himself. He had lost his ability to move his feet and legs after the swine flu. This was a very good thing. They also had a little action at school; some senior high school student pushed the fire alarm so they had a false alarm. Dear Son thought it was pretty fun though, when they had to run through the halls pushing him in his wheelchair. He likes a little chaos.

My Hello Kitty Alarm Clock

On a different note, our cat is confused with Dear Son's school schedule. Dear Son goes to school two half days a week, on Tuesday and on Friday. Our cat however remembers the old school schedule. Back in October, I'd get up early to start Dear Son's g tube feeding then go back to bed for a few hours until it was time to get him ready for school. The cat knew the time and if I overslept, he would wake me up by standing near my face and meowing. Well, once the cat gets wind that Dear Son is going to school, he then assumes that Dear Son will go to school every day so he now wakes me up the following day, thinking it's a school day. So every Wednesday and every Saturday he starts meowing very early to let me know that it's time to get up for school. He starts by meowing, then runs around a bit, then comes back and meows some more. Then if I don't say anything, he stands in front of my face and meows loudly. When I open my eyes, he's like two inches from my face. Today, he kept meowing even though I told him Dear Son did not have school today. Finally, he bit me and ran away. Honestly, it's just too funny. It's great that he can tell time, lol, but now I need to teach him the days of the week.

The Make a Wish Trip itinerary arrived today! Our trip is only a few weeks away!

Suction Machine Update & Dental Visit Tomorrow

The home healthcare agency came out today and replaced the suction machine. The one I had was defective. I did have it set up properly though so that was good. The new machine works great.

Prior to coming, I told Dear Son that they were coming out to fix his machine. I told him that when he was choking I could take the tube and go "bzzt" and get the saliva out for him. He smiled when I told him that. I have to try to create some excitement when we get new equipment so he'll let me use it on him.

After the tech left, I tried it out on Dear Son. He was a little startled by the noise however he did let me in his mouth enough to get out some saliva.

We'll see if he is as eager to let me in his mouth after I take him for his dental check up tomorrow. He seems to have a lot more gum overgrowth, along with extensive growth on the roof of his mouth since his hospitalization last November. He is not on any medication that should cause this, so we'll see what they say.

We see a dental group that is affiliated with a big city hospital. They take care of mostly Medicaid children and poor adults with multiple mental and physical disabilities. It took a while to find a dentist who could see a child like Dear Son but I found this group over ten years ago. I had tried three other dentists but none were able to care for Dear Son. It is amazing to go there. Every patient has significant impairments and that is the only type of patient the dentists see all day. Can you imagine that? It's quite impressive. They have dental students there as well since it's a dental school. What's great too is that it's right across the street from the hospital. This is important since if the patient ran into issues during a procedure, they could wheel him across the street for an emergency. Something to think about when you have a special needs patient.

The dental school is very well run however. They group their days by visit type so one day a week they do all cleanings, another day all fillings, etc. Some special needs patients have to wait several months to get a cavity filled because this is one of the few places that know how to take care of people with severe disabilities. The average dentist can't manage a patient like Dear Son even if they say they take children:) It's also tough because many of these patients don't have dental coverage or their families or caregivers never took them to a dentist. Unfortunately, dental health falls to the wayside for some families in light of the patient's more pressing issues.

We go for a visit tomorrow and then after that, they'll set up a teeth cleaning for Dear Son. To get a teeth cleaning, there is typically a six month waiting list and they won't see the patient until they have a preliminary appointment like we do tomorrow.

To clean Dear Son's teeth, they typically put him under a bit. It's very challenging because they clamp the mouth open and won't allow the patient to close their mouth until they are done. It's pretty uncomfortable and I don't know that he can do that anymore. The last time he was crying out while they did it and it was very hard on me to sit in the waiting room and listen to him cry. (They also typically tie the patients hands down and I don't allow that. After all, I wouldn't want it done for me and I don't allow people to do any procedure to a special needs child that they wouldn't do to a normal child.) When you or I go to the dentist for a cleaning, they don't clamp our mouth open. When we go, they'll take out the suction device and allow us to swallow or to reposition ourselves but for the special needs kids, they keep them clamped open since it's too hard to get them re-clamped again. I don't like that part really and find it enormously stressful. Dear Son's never had a cavity in eighteen years though. We had an appointment last year and had to cancel due to his hospitalizations.

Aside from the clamp, they do a great job cleaning the teeth. The anesthesiologist is pretty good too. I felt really confident when I met him since he wasn't fazed at all by the number of medications Dear Son was on. After all, most of their special needs patients are on a lot of meds. I was able to have his teeth cleaned previously and had sealants put on all his teeth.

Thank you for all of your comments on the suction post. I really appreciated your support.

Suction Pump Aggravation

Dear Son's been choking a lot tonight so I pulled out the Devilbiss Homecare Portable Suction Machine that I got a few weeks ago. I checked it out when I first got it however there weren't any instructions included. Why a homecare company send out a machine without instructions is beyond me. Anyway, since he was choking so bad, I got up at 1:40 a.m. to go on-line to find the instructions. I was able to download a pdf file however the machine still does not work. It appears I had connected everything properly however I don't have any suction on the machine. I can't quite tell if the knob is off on the side or if that is how the unit comes. It looks as if it's missing the knob however when I compare it to the photos in the instructions, it looks as if there isn't a knob there either. I can turn it though however I can't get the guage to increase and the guage controls the suction. I wish now I had watched this a little closer at the hospital. I hate this kind of thing so I typically look the other way.

The machine is rather noisy. When I got the script for a machine, I requested the smallest machine that was available. I don't have a lot of room here and when they write a script or order equipment, you have to specify what you want or you typically get older models or older equipment. (Typically equipment will be on a rental basis and convert to a purchase once the rental costs is equal to the purchase price.) I should have requested a small, quiet machine.

Dad had taken Dear Son Saturday night and brought him back today. He was discouraged because Dear Son was choking all day and couldn't clear his throat.

Around 2:15 a.m. I decided to check the medication sheet that I created to see if Dad had changed Dear Son's scopolamine patch. The patch needs to be changed every three days otherwise Dear Son can't clear his airways since the patch is no longer working to dry up his secretions. I write the date the patch was changed and the next date the patch is due to be changed. It appears Dad forgot to change the patch on time which explains why Dear Son was struggling on Monday. He had a copy of the sheet with the dates on there but this happens sometimes. I won't know for sure until I call him in the morning but I changed the patch now just in case. The effect is not immediate since it's time released but it should help him in a few hours. I read about how the patch releases the medication a few months ago.

Sometime, later today, I'll call the homecare company and see if they can send someone out to show me how to use this machine. It's very aggravating at times like this when you need to use this equipment and you can't get it to work.

This is especially aggravating for me since I really hate nursing. I don't want to be a nurse nor do I enjoy suctioning. I agreed to this machine only because I figured there would come a time I would need it and I was hoping perhaps that I could stomach doing this job to help Dear Son. I am only considering suctioning his saliva in his mouth and not any deep suctioning. I can't stand that. In the hospital, the deep suctioning drives me crazy and I typically won't let them do this. I worry that it's painful, shoving that tubing down him (You saw the bloody pictures I posted the last time they attempted it!). I understand why it needs to be done, I just don't like it.

It's really uncomfortable too, because I feel so much pressure to have to do this. The doctors and nurses can't fathom why I don't like this. They seem to feel it's something that isn't a big deal and that I should do it. I absolutely hate it. I don't think that just because I am the mother to a special needs child that I have to love all of this medical stuff. There comes a time when you just reach your limit on what you are willing/capable to do. Now I certainly love Dear Son and I think that I go to the ends of the earth for a lot of things for him. You will never hear me complain about changing diapers or taking good care of him but we all have things that we don't like to do and this is mine.

So it's 3 a.m. now and I am off to bed for a half hour or so. Dear Son has a 9 a.m. appointment in the morning so I need to start his g-tube feeding at 4 a.m. so it will be done by 8 a.m. I should probably start it around 3:30 a.m. to give myself a little more leeway but Dear Son has school today, if he's not too tired. Our appointment is at 9 and the bus comes at 11 a.m. to take him to school for 3.5 hours. If I start the feeding too much earlier, he'll be hungry before lunch. Somehow I don't think that he'll be up for school but we'll see. He went to school last Friday and had his eyes closed already while he was loaded onto the school bus. On the way to school, his aide said that he started crying and tears were streaming down his face. She asked him why he was crying and told him that it would be o.k. and that he'd have a great day. Apparently, that cheered him up and he stopped crying. In 18 years, Dear Son has never cried going to school. I worry that things are taking a toll on him and that it's exhausting him.

Update: I checked with Dad this morning and he forgot to change the patch. That happens sometimes.

Also, I received a comment regarding the fact that I shouldn't state that I hate suctioning or nursing. I have clarified that in the comments section. A better way to verbalize that would be to explain that I have a terribly weak stomach and suctioning is upsetting to me. It's embarrassing to me to have to explain this to people when they've made assumptions that I should be o.k. with all aspects of nursing since it's my child. The fact is that not all of us are capable of doing these tasks.

Playing Possum To Get Out of Housework?

Image courtesy of Martha Stewart~She recommends using a cutting board for perfect folding.

Dear Son started attending school two, half days last week. Last Tuesday, one of his jobs at school was to fold towels. I wasn't sure how he could do this, since he has little use of his hands and arms, so I had asked one time, how he did it. Apparently, they place the towel on the tray of his wheelchair and he uses his right forearm to shove one end of the towel towards the other.

Well, Dear Son wasn't too excited with the prospect of folding towels so apparently, when they brought the towels over to him, he conveniently fell asleep. Unfortunately, as soon as they removed the towels, he woke up so they thought he was "playing possum" to get out of folding the towels. This was a good strategy on Dear Son's part and was very effective when he used it once last year to get out of shredding paper. He closed his eyes when they turned the machine on and then opened them when the shredding was all done. After he got off the bus last week, his CNA, who is also his bus aide, told me the story about Dear Son playing possum when it came to folding the towels. We had a good laugh and I teased Dear Son later about playing possum and told him that I didn't think that men liked folding towels. He smiled.

Fast forward to yesterday when they brought the towels around at school. He decided to play possum again however as soon as he closed his eyes, his CNA whispered into his ear. She said he didn't need to "play possum" to get out of folding the towels. She said that she would do most of the work to help him and that it would be easier. Apparently, negotiation works for him. He opened his eyes and smiled at her. She helped him with the towels and he was able to move his fingers slightly when he was ready for her to give him the towels.

Disappointed...

I had Dear Son's IEP yesterday*. This is the Individual Education Plan (IEP) that is created annually where we define Dear Son's goals for the following year. We were all gathered at the meeting when someone asked about his Make a Wish trip. I said that he had been approved to go and that all of the arrangements had been made (hotel, air, etc.). His teacher asked for the dates. As it turns out, the week we are going on our trip is during Dear Son's high school graduation. He will miss his graduation. I couldn't believe it.

When Dear Son got sick in November, I had a conversation with his teacher and I asked her to keep me informed about two things: his yearbook and graduation. Also during that time, it came time to order his cap and gown and she gave them his sizes since we were in the hospital. As you know, Dear Son was out of school for months and has only attended three, three hour sessions to date. During this time, I had signed up and was receiving a daily e-mail from school regarding school activities. There was no mention of graduation.

When I got the approval for our trip, I checked with Dad's work schedule for dates; we had a few weeks to pick from. Since I am self employed, I can adjust my work schedule accordingly. I assumed high school graduation would be in June and not in the middle of May (Yes, I know many college graduations are in May but this is high school.).

I am really disappointed. I had Dear Son's graduation picture taken last summer in his cap/gown. We don't have any other events planned for Dear Son for the entire year and yet graduation is the week of our trip.

I know for many people this may not be a big deal. But for a parent of a special needs child, it is, or at least it is for me. Dear Son doesn't have a lot of milestones in his life. It's not like there will be a college graduation, a marriage, a first house or any babies. There isn't any driver's license to be had. There just aren't a lot of milestones. As a parent of a special needs child, I just want the things other people have. I want to celebrate a graduation. I want to see him all dressed up. I want to see him go across the stage and get his diploma. I want to see him with all the other kids that he went through school with and get the diploma. That's what I want for me. And for Dear Son, he'll love it when everyone is there and all of the hoopla around the event.

This is high junior high graduation. You can see him in the stone colored pants at the far end of the photo.

But graduation is only an hour or so. The tickets have been purchased for the trip and they already did this once for us. We are fortunate to go and I can't ask that they reschedule again. I don't want to complain that our trip is scheduled the same time as graduation. That's known as a high class problem when you have the opportunity of a trip of a lifetime and something else at the same time. You just can't go there.

All dressed up for his 8th grade graduation.

I will however miss this. Back in 2006, Dear Son had a MRSA pneumonia and nearly died. He was on a ventilator and we got out of the hospital and had only been home a week when his eigth grade graduation came up in early June. I had asked the doctor if it would be o.k. if we could go but he didn't think that Dear Son was well enough. Well, I decided to get him dressed up anyway and we went. I thought if he died, I wanted to see him graduate. The whole thing was about an hour. I took pictures before we left and it was exciting to see him go across the stage and get his diploma. Actually, the wheelchair kids weren't on the stage but they came down to the main level to give them their diplomas and it was really exciting. We were in the first row. Afterwards, I took pictures of him and his classmates. It was good to see all of the kids together. They went to elementary school together, then junior high and now high school together.

Here is a picture of his teacher (in the white skirt) and his classmates.

So it's unfortunate that it won't happen. As Dear Son's mother, I've seen how hard he has worked over the years to earn that diploma. While special needs kids don't graduate with the same knowledge as regular kids, they do have an education plan and they have worked hard as well.

In the end, we'll have a good trip. I'll keep my focus on all of the fun things that we'll do in Florida. Those will be things that will be important to Dear Son. My goal before he died was to see him happy and that's what we've been given the opportunity to do. It's a once in a lifetime opportunity and once in a lifetime trip and we will make the most of it. It will be good to pack for a trip instead of the hospital. In the end, I suppose it really won't matter so much that we missed his graduation. I just wish it could have worked out a little differently.

*Post was written on Wednesday.

Fading Away...

I wrote this post last week and thought you might enjoy it.

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I remember Dear Son sitting at the daycare center getting ready to kick the ball. Dear Son, sitting on the floor, his right knee up and his left foot and knee on the floor, in position to kick the ball. The daycare worker was less than five feet away, ready to roll the ball over to Dear Son so he could kick it. Dear Son was ten at the time, and for most kids, they’d be kicking a ball elsewhere by now but he rather enjoyed sitting there ready for action. He’d lean back somewhat on his hip with his hands in the air, not really contributing to his balance at all, just hanging out in the air somewhere, oblivious to the rest of his body. I laughed to myself as I looked at the daycare worker, knowing that she was seriously underestimating Dear Son. I could either spoil it for Dear Son by telling her to back up or give him the pleasure of winning for a change. I choose the latter. The ball rolled forward towards him and he smiled in anticipation. In one fell swoop he belted that ball as hard as he could straight at her. Normally, he hits them right in the gut because they are typically standing way too close but this time, she dodges the ball and has to run far to get it. He laughs heartily. If there is one thing about Dear Son, he has a great laugh and a great smile. It’s times like this, that well, he is perfect.

Dad was reminiscing about Dear Son, about the times he used to kick the ball with his foot. He wished he could do it again and suddenly, now that Dear Son can no longer do those things, he has to deal with the ugly reality that things won’t ever be the same. It happens more often now, remembering back to when he walked on his knees in the kitchen when he was hungry or scrambled towards an open door walking on his knees as fast as he could to try to get outside before you could “catch” him. All the while, he had a big smile on his face. He was the happiest kid in the world. You couldn’t help but love him.

Dad was reminiscing after I told him about our day. I took Dear Son out for a small walk and then after our walk, we sat outside for a bit. I tried massaging his left leg to help with his circulation. His left foot and calf are always swollen now and we’ve dubbed the left foot, his “brick foot”, due to it’s height. Massaging his leg is tough, because it’s so hard. It doesn’t move when you try to massage it. I gave him a short massage, then worked on moving both of his feet, moving his toes and doing just about anything to help him get some circulation going. I tried some leg extensions to stretch his muscles but everything was just so tight. I talked to him about moving his legs, but he couldn’t move them at all. Finally, I took the footrests off of the wheelchair and took a giant therapy ball and rolled it towards him trying to get him to kick the ball with either foot. It was windy outside and the wind move the ball more than he did. It was hard to tell if there was any movement at all in his feet, however I decided to err on his side and congratulated him for moving his feet. I worked on rolling the ball towards him and asking him to kick the ball. We did this a bunch of times and then I’d step back requiring him to kick it further. I kept teasing him that I hoped I wouldn’t have to run after the ball hoping he’s somehow give it a swift kick like the good ol’ days however that never happened. Typically, if I said something like that, he’d always respond and give the ball a swift kick.

My days feel a lot longer now. I feel as if I am in a race against time, where Dear Son is concerned. My goal is no longer on how to move forward but how to slow down the regression. Suddenly, I am working hard putting on his arm braces to slow down the contractures of his hands. I am working on trying to improve the circulation in his legs and feet. I am putting a pillow under his foot when he sleeps to ward off pressure sores. And when I finally lie down to sleep, I count the seconds between his breaths…one one thousand, two one thousand…six one thousand…then I ask him if he’s o.k., as if he can answer me. I listen some more but there is nothing…fifteen one thousand…and then I yell out, “breathe” hoping that he will hear my voice and suddenly breathe. I hear him take a breathe and then start counting again. Some nights, I am up every two hours to turn him over and other nights, he sleeps longer. I pay the price the next morning when I see a red spot on his foot. I know I have to get up and turn him over even if he doesn’t wake up. I can’t let him get a pressure sore.

So the days go on like this. It’s a lot to do now and some days, I am pretty exhausted. And apparently, so is Dear Son.

But there are also pockets of great joy in our days. Today, after four days, he finally gave me a kiss. He thinks it’s funny sometimes, to make me wait and count the days. Even his kisses have deteriorated. He used to take his tongue and lick my hand to give me a kiss. After a while, he couldn’t do that so he would take his head and hit my hand. It was more like a “head butt” but still it was cute. Now it’s barely a whimper. He can hardly move his head to touch my hand. It’s odd in many ways to watch his skills fade away. They kind of sneak up on you and when you finally notice, it seems like just yesterday when he could do “x” when in reality, it’s been years.

I often wonder though, what he’s thinking now. Just tonight he was lying in his bed, as I got his dinner meds. The windows and doors were open in our house and you could hear the children playing outside in the play area. They were noisy and loud and unlike other days, they stayed longer since it was unseasonably warm today. I wonder if he remembers what it was like at the daycare center, sitting in the dirt hole on a beautiful day, playing in the dirt with his face to the sun. I wonder if he misses that or if he wishes he could be outside with the kids, watching them play and hearing them laugh.

It’s interesting how people fade away. You think that one day they have the skill and the next day they won’t, but it doesn’t work that way. Instead, it’s a long, slow process. They lose their skills the same way they acquired them, little by little. I remember waiting for the day that he could walk in his walker. There is no specific day. Instead it comes gradually. It’s the same way now, he just kind of fades away.

But as his physical skills deteriorate, there is still one thing that he can do that brings him joy. He can hear and he listens. Today, he smiled as he heard me sing an old nursery rhyme to him. He loves to hear me sing and not only does it relax him but he smiles. On the days he goes to school, I sit in the rocker and he sits in the wheelchair as we wait for the school bus and he always seems to enjoy it when I tell him to listen for the birdies singing. He stops and listens and then smiles when he hears them sing. And on the days that it rains, I open the window in his bedroom so he can hear the rain coming down. And when the cat meows, he gets a big smile on his face because he knows the cat wants to give him a kiss. As I looked at my Dear Son today, I realized that he knew the secret to a good life. You can’t focus on what you don’t have, but take pleasure in the gifts you are given.

Note: Dear Son is 18 years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.