Sunday, August 31, 2008

Water Play

Josh has been spraying off the deck and fence in order to get it ready for staining. Buster has had a great time playing in the water. He did this the entire time that Josh was spraying.

He had a ball and was one tired puppy afterwards.

Did I mention that he also needs a bath!

Thursday, August 28, 2008

Drinking from a straw

William had feeding therapy today. He did great! Here are some highlights...

He sat really still while she put on the stickers and the tape. He even lifted his chin so that she could put the stickers under his chin.

He also let her put stickers (electrodes) on each of his cheeks. This was the first time for this and his did great.

He drank from a sippy cup without letting the juice fall out of his mouth.

He drank from a straw!!

In total, he drank about a half of a cup of juice from a straw!

I could not be happier with today's results. I am very hopeful about this therapy! We are going to increase the frequency of his therapy. Every other week we will be going 3 times a week and the other weeks we will go 2 times. The hope is that the more therapy he gets, the faster we will see results and the better his feeding will be.

Monday, August 25, 2008

Our Day

Today William had feeding therapy in StL. This was his second time and he did great, again. Caroline came along but she went to the siblings playroom that is at the hospital and had a great time. She was able to play and do crafts while Will and I were at his therapy session. I went and dropped her off and they gave me a pager so that if she needed me they could page me and I could go get her. She loved every minute of it. I was happy that she had a great time, makes me feel better about having to drag her along to all of the therapy appointments.
After therapy we went to the zoo (the zoo is right next door to the hospital!). We met up with Aunt Andrea, James and Ruthie and Andrea's Mom, Sandra. The kids had a great time. They got to see 5 baby tiger cubs, a baby zebra, a baby giraffe, a baby elephant and lots of other animals. Caroline's favorite part was the baby zebra and baby giraffe. James REALLY enjoyed the hippos, elephants and the train ride!!
James and Caroline checking out the giraffe. Caroline is pointing to the baby giraffe in the second picture, saying "Mommy take a picture of the BABY!!!"

Andrea, James and Caroline watching the hippo swim by. This was really cool to watch, such a huge animal gracefully swimming through the water. James LOVED it!

James on the train giving me a "CHEESE!!!"

One of the five baby tiger cubs, OMG they were so cute!
This is Caroline asking the zookeeper a very good question. This is some sort of legless lizard, I don't know, it gave me the total he-bee-gebbies so I couldn't look, Andrea took the picture. She asked why it's skin was so hard. The answer: because it digs underground and it's skin protects it. Caroline: how does it dig, it doesn't have hands? Answer: it uses it's nose to push the dirt out of the way. Smart girl, smart, smart girl! And she was not afraid to touch it, she touched it several times. This is also the child who completely spazzed out in the butterfly house because she was afraid that a butterfly would land on her. I have no idea!
Caroline and James dancing (shaking their groove thang) before the sea lion show.

The little otters: Ruthie, William, Caroline and James. This picture just makes me laugh because Sandra is holding Ruthie and I am holding William behind the board and we were both trying to get all of the kids to look in one direction, yeah right!
We were at the zoo all afternoon and got home just in time for Caroline to make it to dance class. Thanks Andrea, Sandra, James and Ruthie for going to the zoo with us and having a really fun day!

Saturday, August 23, 2008

New Friends...

The RTS bloggers are growing in numbers!! I have added some new friends to our list of blogs on the left side. There is sweet little baby Sawyer. He is just so sweet and reminds me of William with all of his dark hair. And there is Frankie who has got one of the cutest smiles I have ever seen. And last but not least there is ANOTHER Matthew, Matthew is 8 years old and in the 3rd grade. It is really cool to read about an older child and all of the great things that he is doing.

I am so glad that I have found these fellow bloggers. We share a connection, a bond that is RTS. We are family.

So check them out, show them some comment love!

Friday, August 22, 2008

25 Things...

So Kelly, AnnaKate's Mom, did this on her blog the other day and I thought it might be fun. So here it goes...

25 things about me, Myssie.

1. I have a little photography business that I do in my spare/free time. I have a studio set up in my basement.

2. When I was in the sixth grade, we had a house fire and lost everything. We had to live with my Grandma and Grandpa for six months until our house was rebuilt.

3. I am addicted to Coke, the soda! I love it. I drink WAY too many a day.

4. I took gymnastics for many years as a child, I even competed and won medals and ribbons. My biggest accomplishment was when we traveled to Columbus, Ohio for a really big competition and I won fourth place on the balance beam. Lord help me if I ever tried to walk on the balance beam now!!

5. My Mom and Dad divorced when I was a freshmen in high school.

6. My grandparents made woodcrafts back when I was in middle school. On the weekends I would go with them to craft shows and help them to earn extra money. It was usually a lot of fun!

7. When I vacuum, I really like for the marks that the vacuum leaves on the carpet to be in a line. I can't stand it when the marks are all crazy on the carpet. My Dad did this to me, it is all his fault.

8. I went to school to be a pharmacist for a year, then changed my mind. I then decided on Elementary Education but have never finished my degree. (Sorry Dad, someday, really, I will finish!)

9. I was a cheerleader in High School (I know it is hard to believe!). But I was chosen to represent the UCA (Universal Cheerleading Association) as an "All-Star" and I traveled to Vienna, Austria and performed in a News Years Day Parade my senior year.

10. I coached my High School's cheerleading squad while I was in college. My two sisters were on the squad, it was so much fun. I think that my coaching them really made us great friends.

11. Josh and I knew each other for ten years before we started dating. We went to high school together and went to the same college (we even had a class together). It was only after Josh had graduated from college and moved to Indiana did we start dating. I was at a football game, coaching (refer to #10) and he walked by and I said hello to him. He sat down and we talked for awhile, then he went up in the stands to watch the rest of the game. After the game was over he came back down and asked me if I wanted to go to a wedding with him the following weekend. I agreed, the rest is history...

12. Josh proposed after only 4 months of dating. He proposed on the football bleachers from #11.

13. When I was pregnant with Caroline and we were trying to decide on a name, "Caroline" was not my top pick for this reason. I love the name Johna, but Josh vetoed it, quickly. I am glad that I finally came around to "Caroline" because my Caroline doesn't look like a Johna.

Josh and I had the name William picked out when we were pregnant with Caroline and knew that if we were to have a son that his name would be William. There were no questions.

14. I have a very dry sense of humor. I have been told that you must take me with a glass of water.

15. I can't stand feet. They totally gross me out. Some people think that it is funny to show me their disgusting feet to see my reaction (Ahmmm, you know who you are!!!). They make me want to hurl.

16. I pop my knuckles, I know, I know. I can't help it!!

17. I have a tattoo.

18. I love all things crafty. I dabble in all crafts but don't really have one that I love to do all of the time. The one "crafty" thing that I have been drawn to recently is altering picture frames. I don't have the patience for scrapbooking, it takes too long, but I like to make the picture frames look really cool to match the picture that I put in it.

19. I suffered from a miscarriage before I became pregnant with Caroline.

20. I have made up a song for each of my kids and I sing the songs to them often. Daily. Loudly. They are goofy, silly songs, that don't even make sense but the kids like them. I am sure that I sound ridiculous because I can't carry a tune. Don't ever ask me to sing you the songs, I will not do it! I have my dignity!

21. I watch soap operas. I really like too many of them...Bold and the Beautiful, As the World Turns, Guiding Light oh, and The Young and The Restless. It is such smut, but ooooh so good!

22. I can cry watching commericals, some of them are really sad or sweet. I also cry watching movies, sitcoms or any other TV show. Or like when Michael Phelps won his 8th gold medal, I was crying like I was his Momma!

23. I had my belly button pierced when I was in college and finally took it out when I was really big and pregnant with Caroline.

24. I can not stand to be late. I will do everything possible in order to be on time, drive like a crazy person, run around the house like a crazy person, or just be a crazy person. I really can't stand when other people are late either.

25. When I am really nervous or stressed out, I bite the inside of my cheeks. I really gnaw on them and they sometimes bleed. It's gross.

Thursday, August 21, 2008

E-Stim Today

Today was Will's first e-stim therapy. He did really well. The therapist put two little sticky things under his chin and taped them down (that was the worst part for Will). That took about 20 minutes to get things done and everything ready and then she turned it on. He didn't even notice anything and he tolorated the therapy for an hour. She slowly increases the intensity the the stim during the hour, so he gradually worked up to his theraputic level.

Our speech pathologist was really nice and was very comforting to Will. She was very intuned to when he needed a break or if it was starting to bother him.

In all, I think that it was a success and I am looking forward to seeing some good results. I am going to try to remember my camera next time so I can give you all some pictures.

Monday, August 18, 2008

Well Babies

Today William and Caroline had their Well Baby visits. Both kids are doing well and growing. Caroline was really nervous about getting a shot. Last year, she didn't really do too well. It went a little better this year. She didn't scream and kick, she just cried really loud and hard. I felt so bad for her. She asked me last night what we would be doing today and I told her that her and Will had a doctor appointment and we would be going to that, she immediately asked if she would have to get a shot. I told her that she would have to have one and tried to talk her through it, I didn't want to lie to her. Ended up she had to have 2 shots so I asked if she could get them at the same time. So that is what they did, two nurses, one on each arm and me holding her. It was fast and after she was just fine. So she got some gummy bears for being braver than she was last year. Here she is showing off her band-aid and gummy bears.

Friday, August 15, 2008

Will's birthday

Here are some picutres from William's birthday. We had small cupcakes for him after dinner and then a few gifts. One from Caroline and one from Mommy and Daddy. Caroline had a great time picking out Will's gift and she was very concerned about getting him something that he would like. She did well, because he loved his little train and car.

William giving Caroline a hug, thanking her for the gift.

William opening up one of his gifts. He may have been trying to eat some paper, not sure.

Happy Birthday Prince William!

Today you are 2! On August 15, 2006 you were born into this world. You weighed 7 pounds and measured 17.5 inches long.
This year you have learned to walk, stack blocks, kick a ball, throw a ball, climb stairs and say "go" just to name a few. Your favorite toy is Mr. Cow. But you enjoy pushing your cars and trucks off of the coffee table, throwing things into the trash can, playing peek-a-boo, exploring, jumping/bouncing and wrestling with Caroline. You never cease to amaze me with all the things that you can do and learn.

You are such an amazing little boy. You bring me joy each and every day. In your two years, you have taught me so much about love, joy, happiness, strength, determination and bravery. I love you so very much and I am so proud of you!

William, August 15, 2006

William, August 2007.

William, August 2008.

Happy Birthday to my Prince! I love you!


Thursday, August 14, 2008

Good News!!

I just got off of the phone with our insurance company and the speech pathologist at Children's Hospital and Will is going to be starting swallowing therapy on Thursday!!!

Our insurance company will pay 90 percent of each bill until our out of pocket equals $2000 (ouch!) then they will pay 100 percent of each bill. I am so relieved that they are going to pay for most of the bill. Even though $2000 is a nice chunk of change, I think that Will is going to benefit greatly from this therapy.

He will start by doing two therapy sessions a week. Each session will be about 90 minutes from start to finish. This is a major time commitment and I am going to have to work some things out with getting Caroline to school and then getting to our appointment on time but it will all work out.

I am looking forward to Will eating and swallowing food!!

Wednesday, August 13, 2008

26 for RTS

I recieved this email from Addie's Mom, Terri. Her husband, Michael is running a marathon in support of RTS. I think this is awesome! Terri and Michael are the most wonderful people and are truely awesome parents to Cate and Addie. This is a great way to raise RTS awareness and help out a fabulous cause!

If you would like to donate and help Michael to reach his goal click on the link below (at the end of the post).

Here is the email:

Hello friends, family. Michael ran the Lakefront Marathon last October and made even Cate cry tears of pride at the finish line. He's doing it again... but asking for a bit more than moral support.

Michael has created a page asking for sponsors/donations to support the Special Friends Foundation, an entity instrumental to us when we first got Addie's diagnosis or Rubinstein-Taybi Syndrome. The foundation sent us information, materials to organize Addie's medical and therapy care and connected us to the RTS list serve, our global family that we "e-talk" to every day. Many of you have heard us refer to our great RTS Reunion trip to Wisconsin Dells each March (or are there with us!) - Special Friends Foundation, along with the Wesley T. Helmbrecht Foundation make these revitalizing reunions possible for families each year. Please cheer Michael on to his goal by making a donation to help more families affected by RTS learn, grow and connect. Click on the link in my signature below.

Thanks and all the very best to you,

Terri, Cate, Michael and Addie
Michael is running 26.2 miles for RTS!

Tuesday, August 12, 2008

A Movie to NOT go see

Josh sent me this link with a message that we will not be going to see this movie. It is not our type of movie anyway but the content seals the deal. I hope that all of you who read about the Stitch take a stand on this issue too and don't go see this movie.,2933,402082,00.html

Also read this:
Jessica, Alex's mom, wrote a blog regarding this word and how it hurts. I hope that you take the time to read it too.

It is unbelievable to me that Hollywood could be this insensitive to people with disabilities. It really just makes me sick.

Sunday, August 10, 2008

Will's Carnival

A picture-palooza from William's 2nd Birthday party!!! Everyone had such a great time (it was worth all of the time and effort!).

A view from the back deck. I had games set up along the outside of the yard. And the kids were given a bag and tickets when they came into the backyard. The tickets were used to play the games and the bags were used to collect all of their prizes from the games.

The Ticket Booth.

The view of the deck. I had the cupcakes displayed on the table on the deck. And just below the deck was the concession stand where we served popcorn, cotton candy, hot dogs, corn dogs, pretzels, nachos and drinks.

Here is Will eating his cupcake. He had fun trying to eat it but once he was done, he was done!

Will LOVES playing with his playhouse. This is one of Will's therapist's daughter. They played alot together in the house.

Some kids playing in the "bounce house".

Papa and James being Clowns!!

Mikkah just finished his cupcake. Aaron was on his way to wipe him down!

Mikkah being a monkey!

Alex fell alseep on a blanket that we laid out on the ground. He was wore out!

I love this picture!! This is our cousin Charlie with Will. Will thought the clown noses were funny!

Josh being a clown! He wasn't too amused when I told him it would be on the blog!

Jessica and Alex were at the party!! We were so excited that they made the drive down to come celebrate with us. It is always so nice to have some of our RTS family with us as well.

Alex and Will hanging out.

Caroline being a monkey. My sister, Leslie drew the monkey and the tree, I colored it. I thought it turned out cute and the kids thought it was funny.

Thank you to everyone that came to the party. I think it was a huge success and glad that everyone enjoyed themselves. I am already thinking about next year!

Wednesday, August 6, 2008

Down on the Farm?

I forgot all about these pictures. They were taken the weekend of Marcea's graduation party. That night Josh, the kids and I stayed at Josh's parent's house and these photos were taken on Sunday morning.

Remember when Caroline was doing all that talking about the Amish? Well, Papa brought the cows home and Caroline, James (my nephew) and Papa went out to feed the cows. What makes feeding the cows so fun for a 4 year old and a 2 year old? It's the new boots that Papa bought them!
The cuteness factor was upped when I realized that Papa and James had on matching outfits! Too cute!

All of them calling the cows.


Yep, that is Caroline in her pajamas!! Funny!
The kids watching Papa feed the cows, hanging out on the fence.

I love this picture.
Caroline feeding the cows, being a farm girl!

Tuesday, August 5, 2008

Seperation Anxiety

I have jokingly referred to Will as my "tumor" before because he is always connected to me. But in all seriousness, I don't know what to do with this kid! He is attached to my hip 24/7 and when he is not, he is crying because I am not holding him. There is a small window during the day that he happily plays with his toys, but it seems like it is a VERY small window.

It is amazing what I can do with only one hand. I can do most household chores (clean the bathroom, vacuum the floors, etc), I can also cook, talk on the phone and assist Caroline with a project, all while holding Will. By the end of the day my body is hurting, my arms ache, my back is screaming. And all that praying and wishing that he would gain weight, well it is working because he is getting heavier too!!

When Josh gets home he always takes Will for a while and plays while I try to finish cooking dinner but the second that Will hears me talk or sees me he is crying, hugging my leg and reaching for me. Or when we are with friends and family and one wants to hold Will and love on him for awhile, Will will go to them but then looks back at me and cries.

I love that I make him feel safe and that I sooth him. And that he needs my hugs throughout the day. If it weren't for poor Mr. Cow I am not sure I would get the use of both hands at all during the day.

All phases last longer with Will than I can remember them lasting with Caroline, so I am wondering when "this too shall pass". But I definitely have a "Momma's Boy" on my hands.

Therapy today

Will had physical therapy this morning, it didn't go so well. It could have been the fact that it was at 8am which by all accounts is way too early and it could have been the fact that he hadn't had much to eat before the therapist got to the house. Nonetheless, therapy must go on, right?

Will didn't tolerate much of anything. He cried a lot during the hour. And had to take several breaks to come get a snuggle and a hug from his Momma (he is so sweet like that). But there was one point during the hour that I thought, "should I make him continue?". I mean he was so upset and crying. I didn't know if it was that he just didn't want to do therapy, if he was not feeling well, or if he was just having an "off" day. I wish that he could have told me but that is a whole other issue.

I didn't stop the therapy but I am questioning my Mommy abilities right now, should I have called it quits or was I right to have him keep going? In parenting Will, it is hard to know when a push is a good thing or if pushing too hard could cause more trouble down the road. I normally don't think that we push Will too hard with the amount of therapy that he does. I also think that Will is doing so well because of all the therapy that he does. But today I am questioning it.