Monday, September 29, 2008

Day 6

On the 6th day we were able to go to the National history musuem. It was a lot of fun! Both of the kids LOVED it!!!

Regan and I started making our Christmas lists. Regan picked this out....

I decided to keep it simple with the hope diamond! Ok, honey you got all of this! wink!

Yeah, I am sure this is how he feels about it!

It was so nice to spend time all of us. Collin was feeling good and happy. Regan loved the last little bit of time that she got with her Aunt Nancy before it was time to go. We loved seeing all of the wonderful things there!!

Saturday, September 27, 2008

Day 5 continued (Meeting Ali)

We were able to meet another child with TTD!!!! It was such an exciting day for us. I had always wondered if we would ever be able to meet another family face to face. I have talked to several over the phone but never gotten to actually talk to and see a sweet little child in person. Beautiful Ali is four years old. She can walk with a reverse walker like Collin. The two of them were so cute together!!

When I go back east I bring hats with bows and flowers that I have made to give to all of the sweet little friends that we have made that have lost their hair. We were so excited to see how cute Ali was in her new hat!! I LOVE that huge smile!! (For all of you that buy and support Little Diva Hair Designs I want you to see first hand what a portion of each purchase goes towards.... Making a cute little girl that has lost or can not grow hair like Ali even cuter!)

Ok, can I just point out that she is holding his hand!!! wink!!

Two amazing and VERY special children!!

If you change the way you look at things,
The things you look at change.
Are they not two of the most beautiful and brilliant children you have ever seen! What strong spirits, strength and love! I am in ah of both of them.

Day 5

After a long day sometimes all you need is a little fun! The playground at the Children's Inn is the perfect place for fun!

Wednesday, September 24, 2008

Day 4

Collin LOVED this little car. I think he thought he could really get away in it! He thought he was so funny as he tried to escape! I love it!! I will have to start keeping my eyes open for one for Christmas! wink!!

On the 4th day we spent most of the day at the hospital. So, I don't have a bunch of fun pictures. I thought I would show you pictures of the wonderful Children's Inn that we stay at each time we go. It is such a wonderful home away from home for children and their families that are there for weeks to even years while being treated. The staff is sweet and wonderful! I didn't get a picture but Regan's favorite part was checking the mail box. Each room has a mail box and every day the kids get to check to see what was left for them. Collin AND Regan both would get fun little gifts. I can not say enough how wonderful the Children's Inn is!!! It is great to be there with other families and be able to talk to them. It is also wonderful having a fun and safe place for Collin to play after a long day.

This is one of the open living rooms

In the halls are quarter rides (free of course!)

A fun play room for the kids!

A wonderful game room with
pool table, video games, and other fun
things to do.

There are several computer labs
so that people can keep in touch
with family.

Each hall has two kitchens for the
families in that hall....

as well as dining rooms!
There are so many things that I wanted to get pictures of but did not. There is also a tennis/ basketball court. There is a cute playground in the back (I will post pics of that latter.) Every single bit of the Inn is so child friendly and fun! I feel blessed to have a place like this to stay at when we take Collin to the hospital!

Monday, September 22, 2008

Day 3

After the hospital on day 3 we went down town at dusk and took in some sites. Collin LOVED being out and away from the hospital!!

It was wonderful to see this smile!!!! He loved looking out from the top of the steps!

doctors, doctors every where!

Collin was very busy seeing doctors and going for tests while we were there. I am so grateful that so many doctors are interested in the research of TTD. We understand that it is truly about quality of life rather than quantity BUT maybe with all of this research that will change for future children with TTD. While there we found out that the lack of myelen is affecting the nerve endings in his left eye. This will/can most likely cause him to go completely blind in that eye. Then we will have to wait for it to affect his right eye. If you know Collin you know that he would not be a happy boy if he lost all of his vision. This is a new and hard road we are about to start down. On the positive side Collin's immune levels were up!!! Yeah!! Thank you to all of the brilliant and wonderful doctors that help us!!! There is other news but until testing is done out here I don't want to go into it to much.

"We must accept infinite disappointment,
but we must never lose infinite hope."
Martin Luther king Jr.

Friday, September 19, 2008

Days 1 and 2

Day 1

There was so much going on with our trip that I thought that I would just give updates by days. So I will start with our first day. It was all travel. With a five hour flight and three hour time change we lost most of the day. The kids did great!!! I don't know what we would have done with out the DVD players or the wonderful lights above. Collin surprised us at how well he did.

Regan dancing while we waited for Jason to get the rental car.

Day 2

We woke up and got breakfast. At breakfast I realized that my camera had broke.. yeah I know!! So, we typed in a store in my GPS and after getting lost we found a Target. Then we were off to the DC temple. It is so beautiful!!! After a rough start with Collin and the camera it was a amazing how quickly it all went away on the temple grounds. Then we drove into down town and go some pics out side of the White house.

Then we went to the airport to pick up Aunt Nancy! After that it was off to dinner. Aunt Nancy could not wait to start spoiling Regan. Notice what she got Regan for dinner... yes ice cream.. for dinner!! wink!!