Monday, June 18, 2007

New Direction

I thought I would add to this blog but change the focus a bit. Some people who know our family are aware that Kevin - mentioned below - has been having some health difficulties. We have been searching for answers for several months. We have had little success figuring out what has been causing his lack of energy, change in personality, loss of balance and several other conditions.

Well, after a recent seizure, Kevin had a CT scan of his brain. It was then that a pituitary adenoma was found. This has led to several more tests and a couple of MRI's. Kevin and I recently travelled to the Brain & Spine Institute in Eau Claire, WI. According to the endoconologist, this was the best place to have this addressed.

Just for a little background, these tumors that are located on the pituitary gland are not uncommon. Apparently, many people have them and never know it. They are often discovered by accident - indeed, that is how Kevin's was found. This tumor presses on the pituitary gland and often causes changes in the production of essetnial hormones in our bodies. If the tumor is large enough it can also press on the nerves that run to the eyes and cause vision problems.

Well, this would explain a number of things that Kevin is struggling with. When we visited with the neurosurgeon who will be removing the tumor, he thought this would help Kevin in a number of ways. It is necessary to remove the tumor if only to prevent further vision loss.

However, the neurosurgeon also felt that there is more going on. He wanted Kevin to have an MRI of his cervical spine. He is concerned that there is more going on there. That has been completed and sent to the institute for review.

Kevin's surgery to remove the tumor is scheduled for July 3rd. It should only take a couple of days for him to recover and return home. We'll also meet there again to review the findings of the spine MRI.

Hopefully, this will bring some answers and help improve Kevin's health and life!

Monday, February 5, 2007

Home Again

We made it back. We got home Saurday evening. We left early figuring we might run into weather difficulties as we travelled. However, it was a beautiful ride. It took us a couple of days but the roads were great. We left just after snow and ice had made things tough in the Southeast and a day before the tornados rearranged central Florida. From the time we left to the time we arrived, we saw a temperature difference of about 80 degrees.

Kevin and Aaron did well on the trip. They seemed to enjoy themselves and remained very healthy. No stunning tans or sun-bleached hair, but we're not complaining!

Thursday, February 1, 2007

February 1, 2007

Now this was a Florida day! It actually reached 80 with a good amount of sun. We took advantage of the weather and headed to Cocoa Beach. It was about an hour away. This one was new for all of us. Unfortunately, the beach wasn’t accessible. There was a boardwalk that allowed us to look over the beach and out into the Atlantic Ocean. It was windy but it didn’t appear to be surfing waves.

Kevin and I did walk down to the water. It seems that he could spend the whole vacation sitting on the beach sifting sand through his hands and feet.

We went shopping at the famous Ron Jon surf shop and had a nice dinner at a steak house – Kevin and Aaron thought we had landed in heaven with the ground steak over garlic mashed potatoes.

It has been raining this evening. This is supposed to be the start of several days of rain. The weather heading north is supposed to be challenging as well. The southeast has been struggling with ice, sleet and snow! Could make our trip back north interesting. We’re probably going to take an extra day to get back. It sounds like we are going to be heading into some mighty cold air as we get closer to home. We may start on Friday.

Wednesday, January 31, 2007

Our Room

Here are a couple shots of our room. Bathroom shots wouldn't be interesting in most cases, but . . . (Yes, that is dirty laundry on the floor. I'll get to it!) One of these is of one of the three bedrooms. Another is of the accessible shower and the others are of the kitchen and living rooms. Its a very nice place!

January 31, 2007

A beautiful day for visiting the parks today – sunny and about 68 for a high. We decided – okay, I decided, the guys didn’t express a clear opinion – to go to MGM Studios for the day. It was a good choice. We watched an Indiana Jones stunt show, a 3-D movie, some old movies and the parade. We ran into the Power Rangers and shared a huge pretzel. Aaron really enjoyed the music and Kevin tried valiantly to get us on the Tower of Terror!

This evening we went to an outlet mall and got depressed about all the things that we are supposed to have, don’t really want and can’t afford – so we didn’t get anything.

Our morning began early when Kevin started laughing at shortly after 5:00 am. No one knows why – except maybe Kevin – but I don’t think so. He continued to laugh without stopping for the next couple of hours. He took a break for about 45 minutes and then started again. I guess he’s been saving up!

And here are some of the long awaited pictures. I’ll try to add some back to the earlier blogs that they go along with.

Tomorrow is supposed to be the warmest day of our visit. It could even reach 80, but it will be cloudy. Rain by tomorrow evening and through the weekend. They have also been talking about ice and snow on the way north. But we have decided not to listen to them. Okay, I decided again.

Tuesday, January 30, 2007

January 30 - Tuesday

Today was Animal Kingdom. Another cool day with a high of about 58 and mostly cloudy. That made it an okay day for hiking around the park. The guys certainly seemed to enjoy the day. We started early and got on the safari ride without any wait. Aaron was pretty excited and pretty apprehensive at the same time. He enjoyed the motion but startled when it rocked from side to side. He used a lot of energy. He really enjoyed the African drummers.

Kevin was in a great mood again. He did a lot of walking today and stuck right with us. He loved the food and enjoyed the ride. We got some good pictures. (Unfortunately, I still haven’t figured out how to download them to the computer.)

Even though the parks are wheelchair accessible, the vast majority of the rides are too much for Aaron. He would need to get out of the chair and sit without assistance in the seat. We end up limiting ourselves to those which allow him to remain in his chair. He certainly seems to enjoy what we have found.

I was worried we ended a bit too early today. We left the park mid-afternoon. However, once we got into the van both of the guys fell asleep for the short ride back to hotel.

The weather is supposed to begin to warm up tomorrow. We will head to either MGM or Magic Kingdom. Hhhmmmmm????

I’ve started to notice that I’m missing reciprocal conversation. Don’t get me wrong. I really enjoy spending time with these guys. However, they are not the best conversationalists. I find myself listening to other conversations that are going on around us. This kind of experience gives you a sense of being left out of what is happening around you. You begin to understand what it means to be present without being included.

Monday, January 29, 2007

So my tech skills are not up to par. It turns out that I don’t have wireless internet in our room. I have to go to the reception and pool area to get a connection. That may sound like no big deal however, that’s six buildings over! And it’s cold – freeze warning in Orlando again tonight! To top it off, I discovered that I didn’t load the software for my camera onto this computer.

Anyway, things are going very well. Our trip went well. It was very long and wet – rained for most of the trip. The guys, including myself, were more than ready to get out of the van. The room is amazing! It has a fully accessible shower with plenty of room. The hotel is a brand new development that is still under construction. There appear to be more than fifty rooms in our building and there are seven or eight completed buildings. There are only a couple of dozen cars in the parking lot however. It appears to be very empty.

Today we spent the day at Epcot. It was a high of about 60 degrees today so it was beautiful for walking around. Had a wonderful lunch at Nine Dragons Chinese restaurant. Went on several of the accessible rides. Both Kevin and Aaron seemed to enjoy the day. Kevin’s health seems to be on the upswing. (He is being treated for hypothyroidism.)

(The news just suggested that you “bring in your pets and check on the elderly” due to the cold. Warm and sunny Florida!!)

Sunday, January 14, 2007

On Road Again

About four years ago, I drove Aaron and Kevin to Florida for a few days. The trip was Aaron's graduation gift. Well, we figured it was about time to give it a try again. Aaron loves the music and visual stimulation of the theme parks. Kevin enjoys the warmer weather and time away.

Why is this such a big deal? Both Kevin and Aaron require a lot of assistance. We have to drive due to Aaron's physical disability. Aaron requires a lift, a shower chair, and other equipment in addition to his wheelchair. Hopefully, there will be enough room in the van for all the equipment and supplies.

It'll take us a couple of days to get to Orlando. We'll need to stop along the way and get all the equipment out for each meal and bathroom stop. Needless to say, this will take us a while. But it's worth it. The guys don't ask for anything. It's hard to figure out what to do for gifts for them or for special events.

So, here we go. The plan is an eight day trip with the better part of the two days on each end travelling. We are heading out on January 27 and returning February 4. I'll try to keep this blog up to date with our progress and some photos.

Check in with us once the trip has started. I'll do my best to keep this up to date.