Permanent Treatment

Beth had a doctor's appointment this week. It was her yearly check up with her endocrinologist. Beth has hyperthyroidism, Graves Disease, did I tell you that?

She started taking Methimozole a few years ago and her thyroid became normal. So she stopped taking it but after 6 months, it came back. So she went back on it. This could go on for years. At her appointment this week the doctor talked about doing a more permanent treatment. Basically she'd have a radiation treatment that would kill her thyroid and she'd have to take thyroid medication for the rest of her life.

The radiation treatment lasts for 3 days and during that time she can't be within 6 feet of anyone, has to have a private bathroom, her clothes and sheets have to be washed separately from everything else and no one can touch her dishes. What ever she uses as far as plates, cups, silverware has to be put in the dishwasher by her and her alone. I asked if she could use plastic but she can't because then all the radiation would end up in the landfill. She'll have to flush the toilet twice every time she uses it and she can't leave the room for more than a few minutes at a time.

If she continues on the Methimozole for much longer, it can cause liver damage. Her liver tests this week came back okay but we don't want to risk it much longer. So now we have a decision to make. Not necessarily about doing the permanent treatment, we've decided that needs to be done.

The big decision now is... when. And how. Beth's apartment is downstairs but she doesn't have a bathroom or kitchen. She would have to come upstairs to use the bathroom and shower. We can fix her meals up here and take them down to her. We also want to make sure it's not during, uh, that time of the month. I'll be able to take some vacation time so I can be home with her. It seems a little daunting at this point.

Dinner Theater

Sorry it's taken me so long to post. We had a very busy weekend (Beth slept 13 hours Sunday night!) then two doctors appointments at the beginning of the week. Last night I had a few hours alone, the first time in almost a year and I actually just sat in the silence. Did a little reading and soaked up the quiet. Not that my house is very noisy, but sometimes a girl just needs a few hours alone. :)

Anyway.... on to the reason for this post. The Dinner Theater pictures. The theme was England in the 60's. Costumes were to be more Mod than Hippie. The popular outfit was a skinny 60's dress. Beth doesn't do skinny mini skirt. So we modified it a bit and went more with a Tracy Turnblad from Hairspray.

 

Beth and Kendall handing out catalogs for the silent auction

There was Mary Poppins, The Beatles and Leonardo D 'Vinci 

There were 20 skits in all. And those kids were SO talented! The speeches and songs were phenomenal. Beth is very shy so she was in the first song and the last. The first song involved a few kids on stage, but the rest of the choir was to walk among the tables (46!) while they sang. Beth.... walked back and forth along the back wall. :)

The final song, a Beatles medley had all the kids go up onto and around the stage. Beth preferred to stay on the side, out of the spotlight.

She did such a good job though. Friday night Chuck, me, Sharaya and Ryan attended. Beth got to come sit with us and have dinner. Saturday night I hung out with Beth during the show. We brought our own dinner and ate in my office. Then hung out back stage until the final song. On Sunday, Diana and I attended and Beth and some of the other choir members sat in chairs in the back. (Sunday was a matinee and only dessert was served.)

She had such a great time. Went to bed early Sunday night and slept almost til noon on Monday!  

Tonight's the Night!

Tonight is the first show! There's another show Saturday evening and a dessert matinee on Sunday afternoon. There's a live orchestra, skits, dancing, lots of singing and of course, an amazing dinner.

It's a fundraiser for our youth choir. They're going to London this summer to sing, share the gospel and minister. They usually help in a soup kitchen or clothing bank. I haven't yet heard what all they'll be doing but the kids are so excited about going.

They began saving and preparing for this trip a couple years ago, before Beth joined. Even though she won't be going to London, she's excited about the Dinner Theater! She's in two numbers, plus will be handing out the item lists for the silent auction that happens before each show.

The theme is the 60's. We have her costume and I'll just tell you she'll be wearing a wig! I'll post pictures in a couple days. It's gonna be a busy weekend!

3/21

Today is March 21st.
The day we celebrate all those who have
3 copies of the 21st chromosome!

Happy World Down Syndrome Day!!

We Finally Got to Meet Them!!

Today was the day!!

We've been looking forward to it for weeks!

Today we got to meet....

Rebecca and Samantha from The Bates Motel!!

Rebecca and I hugged when we first saw each other.

She said it seemed like we had been friends for a couple of years.

I completely agree! Blogging builds relationships, even across the miles.

They are visiting family here in Seattle, all the way from Virginia.

We met at a local restaurant for pancakes and omletes.

Samantha had her favorite - peanut butter and jelly.

Beth had her favorite - an omlete with ham.

We settled into the seats at the restaurant and began talking.

Occupations. School. Ancestors.

Samantha began to open up.

She was talking a little bit and laughing.

I found myself just staring at her.

She's so beautiful. And so smart!

She was trying to get Beth to talk and open up.

Beth never did. Not really.

No laughing. No snorting. :(

An hour later it was time to say goodbye.

Samantha sat in the booth and said she wanted Beth.

I had to force Beth to go over to her.

That's just how Beth is.

Quiet. Shy.

But Beth did go to her.

Samantha grabbed her hand.

AWWWE!

We stopped just inside the doors to take some pictures.

Oh my gosh they were so cute.

They warmed up to each other and at that point, didn't want to leave!

Such a great afternoon!!

I can't stop thinking about them.

Thank you Rebecca for being willing to drive the hour to get here!

I miss you already!!

Rebecca, Samantha, Beth, Me.

Kind of a Disaster

Well... we started experimenting with Beth's hair today.

I got out the scissors and took off a few inches. 

Then I started teasing it.

Diana watched for a few minutes then asked if she could try it. She was a receptionist in a hair salon for a few years so she had a better idea of how to do it. (I was a little girl in the 60's and never teased my hair!) She pulled up a section of hair, then sprayed it and blow dried it then teased it. She only did a little because she was babysitting for Ryan and Sharaya tonight so I finished working on it. The teasing did work, because it did make her hair poofier but Beth's hair is so fine it wasn't poofy enough. And by the time I got done it looked more messy, like it was full of snarls, rather than a bouffant. There's no way I'm showing you pictures of that though! No, I brushed it out and we'll try again.

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Chuck and I were in the bedroom talking this morning when I heard something out in the hall. I peeked around the corner and saw the bathroom light was on so we knew Beth had come upstairs. But the noise didn't really sound the way Beth does when she comes upstairs. We can usually hear her on the stairs and this time we didn't. Oh well, no biggie. We continued getting ready to go to our meeting and I walked out to the kitchen. I stood there for a second because the person standing there wasn't Beth. She wasn't looking right at me so I just stared at her. After about 7 seconds I realized it was Diana!!! Last we had talked with her she was in London  thinking about heading to Belize!!! And here she was, standing in the kitchen!!!

She spent this passed Wednesday at the European Premiere of The Hunger Games. Camped out overnight, took pictures of the stars on the red carpet and saw the movie. She said it was one of the most surreal experiences of her life.

After spending time in Florida, Ireland and London she was running low on money so decided  to come home but didn't tell Chuck or me! Instead she called Sharaya and had her pick her up from the airport! Diana got to the house at about 2:30 this morning. We never heard a thing! I was so shocked! I gave her a big hug and I cried, of course. It was such a surprise to see her!

Does Anyone Out There Remember the 60's?

Dinner Theater is coming. Next week is the big fund raiser for the youth choir. Each year they put on a dinner theater complete with orchestra, comedy skits and amazing costumes! Beth joined the choir last year right before the dinner theater so she only stood at the door to take tickets.

This year however, she is singing in the first number, the last number and also handing out paperwork to those attending the silent auction. It's all about England during the 60's: Mary Poppins, The Beatles, etc. We bought her a 60's shirt covered in leather circles (the size of a quarter) and a mini skirt and I was gonna get some leggings to go under it but I'm considering putting her in some brightly colored jeans instead.

Guess what we're gonna do tomorrow night? We're going to experiment with hair dos! I'm planning to trim her hair so hopfully it holds the shape better. Too long and it gets weighted down. She has the wide head band already (think Hairspray) so I'm gonna tease the heck out of her hair and soak it in hair spray! This is gonna be fun!

Guess Who's Coming to Visit?!

Next weekend, Steve, Becca and Samantha from The Bates Motel are coming for a visit! I'm so excited, I've been thinking about them almost every day. I can't wait to meet Sammi. And I can't wait for Beth to meet Sammi!

We haven't heard anything yet about Beth's job interview at Marshalls. It sounded like it went well, but since we haven't heard anything.....

Beth called me at work yesterday. She over slept and missed her bus to job class. She was crying and quite upset. I told her it would be okay. She called WVS (Washington Vocational Services) and told them she wouldn't be in. She hates to stay home. She'd rather be out shopping or doing anything. Mondays are her 'days off' and Sunday nights she'll always ask me, "What am I gonna do?" Usually when she's home she'll do chores for me, empty the dishwasher, vacuum or clean the bathroom. She also loves to do 'paperwork' as she calls it. Math papers, spelling, writing. She loves to be doing something.

On a little different subject, Diana is doing well. Right now she's in London. Started in Florida, then spent a few days in Dublin, Ireland and now London. She absolutely loves London. I think it's her favorite city in the world. This Wednesday is the premiere of The Hunger Games and she really wants to be one of the 200 that get to see the movie that night! I guess they go in with the stars of the movie and they all watch it together. She is beyond excited! 

Taking Care of Business

We got a notice in the mail saying Beth's jury duty has been extended until April. We have one month to get a letter from her doctor confirming her diagnosis of Down Syndrome. Well we got the letter and yesterday Beth and I took it to the court house.

Unfortunately, we went to the local court house and she's been summoned to the Superior Court in a city about a half hour from our house. So we'll be mailing the letter.

After the court house we stopped at the library. We had to update her card but it only took a few seconds. She found a movie she wanted and I found one called The Big Comfy Couch. I don't know how many of you watched that show but our girls used to watch it when they were little! We loved that show! It was Loonette and her doll Molly. Anyway I got it to watch it with Allie.

After that we stopped by Fred Meyer and she bought a movie. That girl loves her DVDs. Then it was home for dinner.

We hope you all had a great day too! 

Sweet Dreams

I feel like I've been neglecting this poor blog. Sorry, I'll try to do better! There's been a lot happening, I just haven't been posting. Between (some say they're minor but they haven't been minor to me!) health issues and being busier than usual, I just haven't done much on the computer.

With that said, guess what came in the mail?! Beth got a package the other day.

I told her it was from one of the moms who read our blog. What could it be?!?

Pillow cases!! From Kristen's mom Polly!! They're so beautiful! High School Musical and Hannah Montana, they're perfect!

Thank you so much. What a sweet reminder of you and your beautiful angel Kristen.