Tuesday, March 31, 2009

Spread the Word...

Today is the day that we all decide that the R-word is no longer going to be used in our everyday language. I challenge everyone to click on the picture above and take the pledge to not use the word anymore.

It is time that everyone shows RESPECT to our most innocent and pure citizens. Take the pledge to stop saying, 'you're retarded', 'that's retarded' or 'what a tard'. Mental Retardation is how the medical community describes my son, it is not supposed to be used to describe how you look or how stupid you feel.

Take the pledge, make a change and let William know you did!!

Wednesday, March 25, 2009

Baby Doll Sling

I have been sewing again!!
This time I made Caroline a sling to carry her Bitty doll in. I found the tutorial here. It was pretty easy to make and Caroline thinks it is pretty cute!

Wordless Wednesday...Waking up from a nap...

Monday, March 23, 2009

Therapy and Insurance

Today Will had his last feeding therapy (Vital Stim) at the hospital. He is still not eating much by mouth. He still puts food in his mouth, chews, then spits it out. So why are we stopping the therapy that Will has shown so many improvements with, because of our insurance, that's why. Our insurance company will only pay for 20 therapy sessions during one calender year. They will pay for 20 sessions of speech therapy, 20 of physical therapy and 20 of occupational therapy but nothing more than that. It completely blows!

I have tried to appeal the denial but that is like fighting a battle with both hands tied behind your back, in the dark, while underwater, blindfolded...you get the picture. It is just ridiculous. Appealing the insurance company is a battle that I just will not win. It is much like the battle that I have been fighting with them since August to get them to pay for Will's pediasure. I can call and talk to one person that says it is covered, we order it from our supplier and then 2 months later we get a bill saying that our insurance company denied the charges. I call the insurance company and the same person who told me 2 months ago that it would be covered then tells me that the pediasure is a non-covered item on our plan. (insert head banging on the wall here) This cycle has been ongoing since August...it can wear on a person.

Will has been showing good improvement since we started the vital stim in January but is still not swallowing much. He swallows the "juices" that he gets from chewing the food in his mouth but doesn't swallow the food. He can stick his tongue out and wiggle it around. He can clear a spoon with his lips. He can drink baby food from a straw. And has been making many more sounds since starting the therapy in January. But today was our last day until 2010 because our insurance company blows.

I just really wish that insurance companies would let the doctors do the deciding on what treatment would be best for the patients and not base treatment on whether or not it is covered by the plan.

Wednesday, March 18, 2009

Wordless Wednesday

Monday, March 16, 2009

Kalahari with The Foley Four

After the RTS Midwest Reunion, The Foley Four and Lilo and The Stitch stayed at the Kalahari Resort and went to the indoor water park and amusement park. We had a great time. Kelly posted more pictures over on her blog, be sure to check them out too!
Will going down the slide...He really showed no fear when it came to the water.
He would have went down all of the slides if they would have let him!
Caroline coming down a slide...
She had some fun...
At the amusement park...
Caroline climbing the rock wall...
Kelly channeling her inner Cat Woman...
John, aka Spiderman...
John and Ava in the white car, Josh and Caroline in the green car...
We had a blast hanging out with the Foley Family. We are looking forward to next year!!!

Park Picturepalooza

Today the weather is beautiful so the kids and I went to the park for awhile. They both had a great time, I didn't get too many pictures of Caroline because she was off playing the entire time. Between the two of them, it was really hard to get any pictures at all.

Will loved the swings...

Looking at the ground...

Heading to the playground...

Going down the slide with Sissy...



Going through the tunnel...

Going down the tunnel slide with Sissy...

As I look back at these photos of Will and Caroline, I see the expressions on Caroline's face and I see the true love that she has for her little brother. She really didn't mind having to go down the slides with him, she had just as much fun as he did. I love that she looks at Will and sees Will, her little brother, not RTS.

Thursday, March 12, 2009

ENT and reflections

Yesterday we had an appointment with ENT (ear, nose and throat doctor). Will needs ear tubes. We are going to call and set up a time to put them in. While we were there the doctor put this little camera up Will's nose and down the back of his throat to see if there was anything getting in the way causing him to not be able to swallow. There was nothing in the way, it all looked good. The therapist seems to think that Will has an oral aversion in the back of his mouth that is causing him to spit out his food. So they are trying to get back in his mouth and desensitize back there (when food gets back there is causes a gag reflex, so Will doesn't put food back there).

I have done something to my back. I was up most of the night because I couldn't get comfortable and was in pain. The pain is right between my shoulder blades, I think that I have a pulled muscle or something. It hurts...bad.

I have had some time to reflect on our weekend at the RTS reunion. I really enjoy going and talking with the other parents and getting there ideas on how to handle issues that come up in our lives but there are aspects of the weekend that completely freak me out. Going to the reunion and seeing the different age groups of children and adults with RTS is like being able to look into your future. It is awesome to see that even at 26 years old our children are pure, innocent and sweet, not jaded or bitter about the hand they have been dealt. It is great to see that our children are able to communicate, though not always in the traditional speaking way. And it is great that the young adults do typical things like roll their eyes at their parents when they get embarrassed by them. But then you are able to see that at 20 something years old, your child could still be Elmo's biggest fan and be perfectly content to sit and watch Sesame Street all day long. Then there are the wheelchairs, food allergies and behavior issues. It can all become very overwhelming. It is overwhelming because we have no idea where Will will fall in the spectrum of RTS and we are left to wonder. There were points during the reunion where I was like "I can totally do this" and then there were points when I was like "Holy crap, I am just not cut out for this".

I am so glad that we went again this year and I am looking forward to going again next year. I have met people that are inspiring and are truly great friends. I guess it is like all things...we must live in the "now" and not worry about the future and things that we can not change.

Monday, March 9, 2009

RTS Midwest Reunion 2009

On Friday, we headed north to Wisconcin Dells, WI for the annual RTS Midwest reunion. There was a huge turnout with over 20 families there with 120 people. This was our second year attending the reunion and it was so great to see everyone again.

So here are the pictures from the reunion...
Our attempts at a group photo...

This was one of the cutest moments of the weekend...this is Caroline, Avery (Caden's little sister) and Kayla (3 years old, RTS) giving a each other a hug. So sweet!

Here is Eric, a huge Bucks fan!

Here are Cory and Addie watching TV together.

This is Jessica (20 years old, RTS), Cindy and Michael. This was their first reunion and guess what?? They are from St. Peters, MO!! Which is where Josh works and we are planning to move there soon. It was so great to meet them, they are a wonderful family and Jessica is a hoot!

This is Christopher. He is a sweetie!!

This is Chris, Christopher and Noah playing with a toy.

Caden playing the guitar. He was so excited about the guitar.

This is Brady (2 years old, RTS) playing with his bus.

Brady again...

Addie watching Sesame Street...

Will sporting some really sweet sunglasses.

This is Sheridon (7 years old, RTS), who has got to be the cutest little thing ever. Her and Caroline played together all weekend.

Max being cute!!

Kayla and Caroline playing.

Josh (20 years old) and Pam

This is Jeni talking with Chris' dad. Jeni was the oldest of the bunch, she is 26 years old. She told me that she thought that I looked like Mary from the movie Hocus Pocus. I have never seen the movie, so I am not sure that I look like the character but Jeni sure thought so!

Will and Brady are a month apart in age.

We really enjoyed the reunion and are looking forward to next year.