Tuesday, December 30, 2008

A Christmas Present from the state

UPS delivered a very important package for Caitlyn today. It was her brand new Britax Traveller Plus car seat. We found out about a month ago that we were going to be able to get this car seat payed for by Medicaid. We spoke to the vendor on Christmas Eve, and have been anxiously waiting for the UPS guy to come since then. It is amazingly large! We haven't taken it out to the car yet to see if it fits. The car seat is 37 lbs, and we can't use it without a anchor. Since my car doesn't have one, we are waiting to hear from the dealership to see what it takes to have one put in. We figure for now that will be cheaper than upgrading to a minivan...Soon I hope.

Anyway, Caitlyn and I got all of the padding pulled off that she didn't need, and sized the straps and got them in the right holes. So, here is the end result. Caitlyn in her comfy over sized new car seat!

Wednesday, December 24, 2008

Merry Christmas!!

I just wanted to wish everyone a Merry Christmas. Tonight I think about the things we are grateful for. Eric and I are so blessed to have such a wonderful support system. We have the most amazing family, and we are so thankful everyday that they are with us. This year on Christmas we thank God for the gifts he has given us. We thank God that Caitlyn has amazing Grandparents that love her more than anything. A few weeks ago, we were preparing to tackle Christmas on our own this year. Due to some unforeseen events, we will be celebrating tomorrow with my parents. The events that have brought us together this year make us even more grateful and appreciative of the time we have with each other. As I fall asleep tonight, I will pray that God gives the strength to not let Rett Syndrome win. I pray that I will be able to make it through the Holiday celebrations of the next few days with minimal tears.

Tomorrow we will enjoy a nice lunch with my parents at my Grandma's house. Friday Caitlyn and I will spend the day cleaning up and preparing for company. We don't have a lot of space in our small two bedroom apartment, but we do offer up our couch for a few nights whenever Eric's brother is home on leave from Texas. He's a great brother-in-law and a wonderful uncle to Caitlyn. He is all too familiar with our less than perfect house keeping skills, and doesn't seem to mind. But this year is extra special as he is on leave with his new wife! I will go into it nervously as I make sure Caitlyn is on her best behavior. Her uncle adores her, and hope that her new aunt will do the same.

My camera is armed with new batteries this holiday! I promise at least one picture! Merry Christmas, and remember....don't let Rett Syndrome win this holiday season!

Tuesday, December 09, 2008

Parent-teacher conferences

I went to Caitlyn's parent teacher conference today. There wasn't any new info, because we have just completed our IEP. Her teacher made this cool video, that I just had to share! It is about 8 minutes long, because her teacher filmed her sharing her VIP poster in her Gen. Ed. class. Enjoy!
In other news, Caitlyn has her first loose tooth! Be on the look out for a toothless grin!

Monday, December 08, 2008

How do you make it through the Holidays?

I think I have posted here once before how much I enjoy Thanksgiving. The reason I enjoy Thanksgiving is because it is the one holiday when Caitlyn's limitations don't stand out. Sure, we have to feed her every bite, but she loves to eat!

Christmas is hard. The month of December is really hard. First off, it was December of 2005 when we first learned of what Rett Syndrome was. 6 weeks later we sat crying in the doctors office getting the results that would forever change our life. I am to the point where it pains me to even wrap Caitlyn's presents. I think to myself "why am I wrapping these, when I'm the one that has to open them?" We just wait until Christmas morning, then put everything under the tree unwrapped. It is really hard to shop for her too. I spend hours walking up and down the rows and rows of toys at Toys R Us looking for a toy that is both age appropriate, and safe. I just can't bring myself to purchase a '6-12 month' toy for my 5 yr old.

I really hate Rett Syndrome some days. I hate what it has taken from my daughter, but I hate even more what it takes from other kids. I can't believe that the thing that is responsible for Caitlyn's challenges can look so much more evil to another family. Caitlyn lost her words and her ability to use her hands in most ways, but she can still feed herself if she really tries, and she still holds her own cups. And she can walk. Don't get me wrong, I am thankful for what she does have. But I hate that there are other families that have lost so much more because of Rett Syndrome. Families who's daughters could once crawl, or walk. Families who have had to learn to use a feeding pump because Rett Syndrome has left their daughter so thin. Families who's daughters have lost all use of their hands. Rett Syndrome is such a difficult thing to face, I can only hope that despite the differences in our girls, we'll all come together and not let Rett Syndrome run our lives.

This year we will fight to make the most of the Holidays, and not let Rett Syndrome decide how we feel. I always loved Christmas growing up. I guess we just need to find our way...If our way means not using wrapping paper, then so be it. We need to make the season enjoyable for Caitlyn, some how some way our family will figure a way to make it through the Holidays.

Sunday, December 07, 2008

Caitlyn's first big girl hair cut

Daddy got a new job, and is crunched with time in the mornings to get Caitlyn's hair put up. So, we decided to give her a much more managable hair due. My friend who works for our local ARC did it. No tears were shed by me or Caitlyn!
So here is the before. Obviously I caught her in the midst of eye crossing...She really did quit well holding still! Well, as much as can be expected!
Below are some during shots.
This next one is daddy holding her head still to have the neck buzzed.
The bangs are much more even than they appear in this picture.