Wednesday, May 14, 2008

Some Disney Favorites

Back from Disney & Update

Well, we had a great time last week for the most part. We came home with some wonderful memories!! But, next time, we will plan more carefully. It was so dang hot... the last day - the heat index was 103 and it was so crowded. It isn't suppose to be that crowded until mid-May but Don and I noticed that there were A LOT of non-english speaking people and then we realized... weak dollar + lots of tourism from overseas...

So, major heat for the first of May AND massive people overload.

We did meet some very nice people and the Disney people were WONDERFUL to Katie. It's definitely a great place to vacation if you have a child with disabilities if you plan it right.

Other notations... my dad had his surgery yesterday. Marilyn didn't want me to come for the surgery - she thinks it is much more important for me to visit during his radiation and chemo. He did great for the surgery. He was suppose to stay in the hospital up to three days and he is already home. He is going to have to have rehab therapy because they damaged a nerve when removing the lymph nodes (this was unavoidable and known ahead of time) and he has some paralysis in his face and mouth. Unfortunately, the surgeon thinks he removed another melanoma that had developed right at his ear. If it comes back positive, that is not good. However, he didn't think any of the 75+ lymph nodes were suspicious looking. My dad will have daily home health care until his follow up appointments next Thursday.

This doctor is a spiritual man and he told Marilyn frankly yesterday that his chances for five year survival were not that good. He said that "that is the science and medical perspective". He said that God is ultimately in control and that Dad wont go anywhere until it's his time. Marilyn is such a strong woman and this is twice now that she completely came apart on the phone with me post-surgery that I wished so bad that I had been with her.

But she is better now. She told me that even though she is very close to her two sons and her father, she doesn't feel like she can unravel with them the way she has with me. I wish I could do more to help her and my dad.

Katie - we had a meeting at her school yesterday to plan her year for next year. She is going to continue to be mainstreamed with increased resource time. That was a very, very tough decision and I completely came apart after the meeting. Everyone loves Katie and we are soooo blessed to have the people in her life that we do... I can't say that enough but school is growing increasingly more difficult for her. However, the CDC (comprehensive development classroom) supervisor was in the meeting and when we told her that we felt like Katie was where she is now because she's been challenged and we were worried that moving her to a CDC classroom would result in her not being challenged and she agreed... that cinched our decision.

GRAN - boy, is it ever continuing to deteriorate rapidly. Her memory. She's not eating well at all. Her color doesn't look good. She's very depressed. With Jack's help - I have found an assisted living facility that also has an alzheimer's unit in Rockwood, TN. That is where Gran grew up. It's 38 miles from us but it's only 6 miles from Jack and Sue, who live in Kingston and she has other extended family in Kingston.

The facility is Victorian Square. She would have a private room. That is huge!!! It cost $1850 a month, which is amazing because all the facilities in Knoxville are $3,000+ monthly. The administrator put me in touch with her contact at the local VA office and I have a meeting with him scheduled for Monday at 8am. He sounds so nice - a great sense of humor. Based on what I told him, she may qualify for up to $800 a month in survivor benefits since my grandfather served during the war. If she does, then with her small social security and pension - she will have just enough to cover the expense.

So, Don, myself, Jack and Sue are taking Gran there on Friday for lunch and for them to do an assessment on Gran. Her memory has gotten so bad that she's been forgetting her last name, Dad's name, where she got married, that I live in Knoxville (she thinks I still live up north and wants me to move here...) - the list goes on and on.

I think Jennifer, who helps us through the week and then cleans 2x a month has about reached the end of her rope. She's grown to care about Gran a lot but Gran is wearing everyone out right now. She calls me 5-10 times a day crying.

Then, the realization hits about what is in store once we get her moved. Her condo. I can't even begin to imagine what that is going to be like... and it will have to be done quickly because the funds aren't there to pay for the assisted living AND maintain the utilities, homeowners, etc on the condo.

Don is SWAMPED right now. He's got work coming out his ears, which is wonderful but he is very busy!

I've got two new clients. I've pretty much stalled eBay altogether for now. I dropped one of my summer photography classes at UT but I still have my current Fundamentals that has two weeks left and then one class in June and July.

I need to go visit my family in NC. I have a trip to Nashville planned mid-June that is already paid for so I have to go. I need to visit Dad twice this summer. Kim is coming home from Kuwait in July and I want to spend more time with her this summer. I had to turn down a job photographing children for a local boutique - which killed me because that is exactly what I want to do... but there is only one me and too many commitments right now. I also had to turn down a wedding at UT last weekend since we were out of town. The brides photographer bailed on her two weeks before the wedding and she got my name from one of my instructors.

When it rains it pours...

Please continue to keep my dad and Gran in your prayers. Also us three - for strength, patience, making the right decisions...

LA :)

Thursday, May 8, 2008

Magic Kingdom is Magical!!

We had a blast!! You have to keep in mind that we have to be careful not to over do it with Katie - especially in the heat and it was SOOO hot today. It was like 92 - but at least it was breezy.

We actually took a cab to Magic Kingdom from the hotel because the line was maybe 4 bus loads long and it was already 10am and the buses only run every 20 minutes.

It ended up being a pretty neat thing to do because the cab dropped us off at the ferry and monorail launch so we took the ferry. Very neat way to approach the park.

We did so much more today at Magic Kingdom than we did last year. Last year was truly magical because Katie got to go inside Cinderella's castle and meet all the princesses and princes... but we did A LOT today.



We started off in Tomorrowland riding the Astro Orbitor, which Katie loves because she's flying an airplane. Then we did Buzz Lightyear's Space Ranger Spin, which Don and Katie love doing together. Then we hit the Monster's Inc Laugh Floor - it was hilarious - we all laughed and had a great time. Then, Stitch's Great Escape (don't bother).

Before leaving Tomorrowland, we had to hit the Indy Speedway, where Katie again, gave me whiplash and enjoyed every minute of it. We did this twice - without having to get off. I love DISNEY! They are great to people with disabilities.



Then we started making our way to other areas of the park and we came across the horse drawn trolley. Katie wanted to go see the horse, of course. You know she doesn't get nearly enough interaction with horses in her every day life...

Well, the lady working with the horse told Katie that she couldn't touch the horse because he was working. After talking to Katie for two minutes, she was letting Katie touch the horse and act like she was driving the trolley. It was a beautiful Percheron Draft. Katie just has a way of touching peoples hearts.




We stopped and had a nice lunch at Liberty Tree Tavern and then headed off and did the Pirates of the Carribean, Big Thunder Mountain 2x, It's A Small World, Peter Pan's Flight, Mickey's Philharmagic and then Dumbo. Lastly, we did Snow White's Scary Adventure, which Katie loved and we did it twice. Probably nightmares will ensue tonight!

Here are a few pics from the day!!








It seems as though we are heading back to Animal Kingdom tomorrow to focus on the other side of the park. The safari, the jungle walk, the petting zoo, the Lion King show, etc. It's suppose to be 93 and very humid and at least Animal Kingdom is almost all shade.

More tomorrow...

LA :)

Wednesday, May 7, 2008

Animal Kingdom Is AWESOME!!

We spent 3/4 of the day today at Animal Kingdom. We had planned to be there all day today but it was HOT!! It was 89 and very humid and it's only get hotter this week... Katie just can't handle a full day in those temperatures. The good news is - Animal Kingdom has so much shade that really helps.



We started off in DinoLand - just like last year. We rode Dinosaur twice and Katie loved, loved, loved it!! We then rode Primal Twirl... I think that's the name. It's almost my favorite... it makes me laugh so hard that I cry! My laughing makes Katie laugh and the fun is just contagious.



Be careful what you wish for... I've always wished that sometimes you could just stay on your favorite ride and not have to go back through the line... which is REALLY bad of me when we have this pass for Katie... but anyway, we were on the Primal Twirly ride for the second time and when we came back around - they pegged Katie for a "free ride" and we got to go again without getting off. That's the neat good news. The bad news is... I discovered that getting off a ride like that, walking the exit and getting back in line gives your body a chance to re-acclimate with reality. Staying on... let's just say, we all were a little loopy after that third ride! :) But it was still great fun!!

Then we headed to Expedition Everest...



the ride Katie has talked about all year since riding it four times last year. This right here is where I have to say that Disney is just amazing! For the second year, we provided a note to Guest Relations from Katie's pediatrician stating that she has medical conditions that prevent her from being in the heat for extended periods of time - in addition to ADHD and vision impairment. They give us a pass to use at the Fast Pass entrances and then give Katie preferential seating when available at shows, etc.

At Expedition Everest, the normal wait today was 45 minutes. Because of Katie's pass, we rode it five times in 40 minutes. I feel a little bad about that... but there is no way in today's heat that Katie could have withstood the 45 minute wait for one ride.

Plus, all the Disney cast members are sooooo very nice to Katie.

We called it a day at 1pm by eating lunch at GUESS WHERE!!!? The jungle place... as Katie calls it. The Rain Forest Cafe.



Then we came back to the hotel where I had 20 missed calls on my cell, 10 voice mails and a dead phone battery. Chaos ensued. Gran had a plumbing catastrophe that my Uncle Jack had to help her with. According to my dad tonight, Jack now sees what we've been trying to tell people about with her memory. She had lunch with a dear extended member of the family yesterday and she couldn't tell Jack today who it was... she thought it was a neighbor. It was Charlotte Ann... someone that Gran has known and loved since she was 25.

Additionally, the plumbing catastrophe apparently was fixed by Cedar Bluff Plumbing, but it caused Jack and Sue to really get a much better idea of how Gran is living. He's mad that he didn't listen to us sooner.

Jack is going to some facilities that I've already talked to in Kingston this week. I was told waiting list, private pay, no medicaid, she wouldn't qualify, blah, blah, blah. But, he is Jack Muecke and Jack Muecke gets things done in Kingston. We will see!

We then jumped in the "quiet" pool here at the Pop Century. Katie, bless her heart, was so patient during our 40 minute wait to go to the pool... while I dealt with Dad and Jennifer and my messages.



Katie was a lot happier at the pool than she appeared in this picture... :)

The pool felt great!!

Tomorrow, I think we are going to Magic Kingdom.

More then....

LA :)

Tuesday, May 6, 2008

Katie's Birthday Disney Tradition Has Begun

So, this is the second year that we are celebrating her birthday at Disney and I do believe it might be a tradition. Actually, I think Katie is on course to have the longest birthday celebrations of anyone I know.


I know we tend to spoil Katie a little too much... but she is truly a special child. Even the professionals in her life - teachers, doctors, etc... say that she is the bravest, most determined child they have ever encountered. She gives life 110% at all times.

We celebrated her birthday in the mountains with Gran, Dad and Marilyn on April 26th and we ate at Logan's Roadhouse and they brought the roof down singing happy birthday to her with a big desert.

Then Katie and I took Gran to Outback on Katie's actual birthday last Saturday and again, they sang happy birthday to her and made a big deal.

Well, when we arrived at our hotel this afternoon, they gave Katie a pin to wear during her stay that says "It's My Birthday" and any Disney employee or cast member sees this button and promptly says "Happy Birthday Katie"!

THEN, Katie and I are going to North Carolina in a week or so and we are going to celebrate her birthday with our family there!! Longest birthday celebration EVER! Needless to say - she isn't having a "party" this year! ;)

We had a good trip today. We got here about 4:30 and checked in and headed off to Downtown Disney. We went to the Rainforest Cafe to get our names on the list thinking there would be an hour+ wait... NOPE! 20 minutes, which we easily killed shopping in their gift shop.

Katie was entralled at this place. I'm telling you - she's going to be a naturalist, a park ranger, a vet assistant... ANYTHING with animals. Actually, we are planning to spend TWO days at Animal Kingdom.

Don and Katie had a lot of fun in the store at TRFC finding neat things to play with.

After we ate our dinner in Katie's new favorite restaraunt, they brought her the biggest desert EVER!!!



We shopped a little in some of the stores... we got our traditional "we've been here" Christmas ornament. We try to collect Christmas ornaments whenever we take a trip... then when we decorate our tree each year... it's a neat way of remembering.




Anyway - Good Times!! We are off to Animal Kingdom tomorrow, I believe!

Katie will be in her element!!

LA :)

PS - It was painful for me taking pictures tonight with my digital point and shoot. It will be interesting tomorrow going around Animal Kingdom with a real camera.

Sunday, May 4, 2008

Mystery Solved & Other Updates

Well, we didn't have a visit from the lawn mower fairy after all. When Don went to get the paper today, there was an invoice in our mail box from a lawn service for $50 for mowing and weeding. It was addressed to our neighbor at 616 EAST and we are 616 WEST. Don has left the man a message. We will see what happens. I don't think we should pay for his error but it was also one less thing for us to worry about before our trip... so maybe a compromised payment...



Well, Dad and Marilyn were here for almost a week and it was great having them here. It was wonderful to see dad, even though he has that turbin bandage, he looks so much better than I was prepared for. His spirits were pretty good. Marilyn is a little wobbly... she is having a tough time. She is upbeat with Dad but when he leaves the room, she falters and chokes up. I wish I could be more help to her.



Dad's next surgery is May 13th and then his radiation starts 56 days after that. Then he will start chemo. Sometime between the radiation and the chemo, he will have another PET scan just to be sure that nothing else is showing up.

Gran's memory has taken a serious turn downward the past two weeks. She kept asking Dad, "son, what happened to your head?" At first, they would explain all over again and finally Dad just started saying, "I got hurt, mom". She doesn't remember that I live in Knoxville, she thinks I live "up north". She wants to go see that lady that handles her money and pays her bills so she can get some money to take everyone out for dinner... THAT LADY is me! :( She is finally saying that she thinks she wants to go live in a nursing home because through the week, between work, Katie's school, after school activities, drs. appointments and my night classes... we don't see her much and she says on those days, she is so lonely. She will call me crying because she is so lonely. Jennifer, the gal we pay through the week - is so very kind and she will spend a good deal of time with her in the evenings. Her neighbors check on her - even though she doesn't know their names anymore.

I have conversations with her daily now that are like Groundhog Day... over and over again, around in a circle... she can't remember things from two minutes ago. We took her to Dr. Jackson when Dad was here and Dr. Jackson increased her Namenda (the medicine to slow Alzheimer's progression)... but I haven't seen a benefit - if anything - it's gotten worse.

Don did his first Catholic wedding yesterday. It went great! Great couple and Eli, the guy that is helping Don is just doing great! Everything is GREAT! :)

So, Katie and I went shopping for Gran and then took her out to dinner. Katie was very flustered at how bad Gran's memory is but they still had a great evening together. Yesterday was Katie's 9th birthday!! I can't believe she is 9!! Last year in the single digits!!

It's horrible timing for us to be going to Disney but it's paid for, it's been planned since December and we are going. I have several people lined up - including Uncle Jack - to visit her and check in on her.

Then, when I get back, we will start looking into nursing homes again.

Tomorrow will be a very hectic day. We are essentially packed and that is a good think because Katie goes to school, I go to work, Don will be working, then Katie has a doctor appointment at 3pm, then I have my first portrait class tomorrow night... We leave Tuesday morning at 9am.

I'll be blogging while we are gone... especially since it helps me remember things for journaling in my scrapbooks.

LA :)

Friday, May 2, 2008

Lawn Mower Fairy?

See Don's blog...



Crazy busy getting things in line to be gone for a week (almost)! I'll post pictures while we are hanging out with Mickey & Friends next week!

LA :)