Monday, October 29, 2007

A story I have to share!!!

I have to first say, that this story had me in tears as it unfolded before my eyes...My little girl is getting sooo smart!!! (the word was amazing, but even more amazing was that she understood exactly what the lady asked her!)

We went to the doctor today so Caitlyn could get her flu shot. As we were walking out, there was a lady that was walking out too. She said hi to Caitlyn. The dialogue went something like this:

Lady: Hi! I like your shoes!
Caitlyn: [bent over and pointed at her shoes]
Lady: Do they light up?
Caitlyn: (as clear as day with a big smile) Yeah!

The lady continued to hurry on her way, not knowing what joy she just gave me. I go to sleep tonight knowing that my little girl understands more than we have ever given her credit for! I love my little girl! Here's to many more stories like this one. Here's to finding the little girl full of life trapped in a Rett body.

Sunday, October 28, 2007

Wait, I forgot to tell you

Every once and awhile I like to read what I wrote and remember stuff. As I read the other day, I noticed that there were a couple posts I never updated...So here they are!

In this past July, I wrote about the scheduling frustrations at our local Children's Hospital's Neurology department. I can't believe I didn't update from that! Well, we got fed up, so we found a new neurology at Swedish hospital who could see us as a new patient in just 3 weeks! So we went and saw this wonderful new neurology who upped our meds to 125mg once daily. He said he is comfortable going up to 150mg before we look at adding another medication. So far, the 125mg has worked! He also said that if the med increase didn't work, he'd like to do a 24 hr EEG. But we talked about how difficult a 24hr EEG would be on Caitlyn. (she is a very active little wonder she can't gain weight!) Ofcourse some things are too good to be true...Our appointment ended with the dr. telling us he was retiring! So we have an appointment in Feb. with his replacement and we will give him a try and see what we think.

Next, we found out last week that the stroller we asked for was denied! I think it was a plot, because they denied us so close to the end of the month. Our insurance is changing on the 1st of November, so now we'll have to start all over. We know already that the new insurance will most likely deny the claim, but then we can take that to another organization and ask for help. We have also decided to change our focus as to what we want. It is time to be realistic. Caitlyn will most likely slow in the coming years, and this means we need something that is transportation rated, just incase...Here is what we are looking at now..I like either this one or this one. We are leaning towards the first one, but we'll see.

Caitlyn says I should show everyone a couple of pictures and tell all of my readers that I'm trying to become healthier so I can be around longer for her. So here is me and Caitlyn during the summer of 2006
And this next one is me and Caitlyn yesterday.

I really just started the journey about a month ago, but already I am seeing results. I guess it is just nice to have as many supporters as possible!

Yesterday Caitlyn and I went to The Farm in Snohomish, WA yesterday. We had so much fun! This picture is from the horse swings made out of tires. She got a trout (with a little help) which we took to grandma and grandpa. We went on a hay ride, and watched duck races! The duck races were really neat! Caitlyn's favorite part was the wheel barrow ride out to the pumpkin patch, and it was a good work out for mommy too! We had fun, just Caitlyn and mommy!

Tuesday, October 23, 2007

a little update and a few pictures

This year is going good so far for Caitlyn in school. She really enjoys herself, and we are told that she has a little friend, Tristan, who likes to share whatever he has with Caitlyn. Eric hopes that this isn't the beginning of boy troubles! (daddy's...aren't they all the same?) As long as we can keep her healthy through the winter, I think this will be a year with great progress!

As for staying healthy, it seems to be easier said than done...If you recall last year around this time, we saw an ENT and decided Caitlyn's tonsils and adenoids had to go. That wasn't a fun experience by any means. But, Caitlyn started gaining weight in no time, and has put on 5 1/2 lbs since her post-op weigh in. She was also healthy for the first winter since being born. The first year, she just had bronchitis onces in February, followed by pnuemonia in August...The second year is when all of the problems really started...(looking back, this also happened to be right in the peek of her regressions. We thought the persistent 4 1/2 month long sinus infection was the cause of her loss of speech) The third year was a little better, but still not fun...between age 2 and age 3 Caitlyn didn't put on any weight. Anyway...That is just some background on the sinus issues that she suffers. The pattern she follows is: infection, antibiotics, healthy for 3-4 weeks, then it all starts over. Her ped. says there really isn't a next step, so we are trying nasal spray as a preventative...we shall see...I really don't want to lose the weight she has gained. So far we have sat at 34.5 lbs since April of last year...We'll take it! So we are just finishing our round of antibiotics, so we shall see what happens!

What would an update be without any pictures? Here's a few!

Have you ever seen that comercial for the Campbells Soup to go drinkable containers? Caitlyn really reminded me of that on this night while she was drinking her yogurt smoothie! (ofcourse you can see that some missing was involved)

And here is this one, just because I think she has the most beautiful profile. And look, she's getting red in her hair!

And here, just because she is so peaceful when she sleeps! She is just really getting into pillows, and doesn't she just look soooo comfortable?

Thanks everybody for reading!

Monday, October 01, 2007

It is October again...Rett Syndrome Awareness Month..

Last year in October, I wrote a quite long post about Rett Syndrome and what it meant it our life. It was really a story of Caitlyn. There is no point in repeating all of that this year, you can go back and read it to refresh your memory, if you'd like. This year let me just say a little about our last 12 months in the world of "Rett." (I promise it wont be as long.)

Today Caitlyn started an extended day program at school. On Monday, Tuesday and Wednesday she will go to school from 8:45-1:45. Her diagnosis is the only reason she gets this extra education. In our district the extended day program is specifically for kids on the Autism Spectrum, and Rett Syndrome still remains on that list. We take what we can get in the education department.

It has been nearly 2 years since we first heard the words "Rett Syndrome." It still feels soooo new to me. Sometime over the summer it clicked in my head that we weren't the very last family to get a diagnosis of Rett Syndrome. It occurred to me that other families may be expecting that I can offer them some support and that they may be encouraged by my strength. I can do anything in my power to offer all the support I can, but between you and me, don't be encouraged by my strength. I still cry at night, it still breaks my heart to see typical 4 yr olds, I still secretly dream that there is nothing wrong...Up until recently I still held onto hope that someone made a mistake. The truth is, I got the results in the mail, and Caitlyn does indeed have Rett Syndrome, a mutation of 901insAC to be exact. So, My daughter has Rett Syndrome...It only took me a year and a half to let go of the dream of someones error...Now, I can begin my road to acceptance. If you are new to Rett syndrome, learn more about it here.

This year, how about if you have read this, you post a comment saying something...Tell me what Rett Syndrome is in your life, and how you came to know about it. If you are a fellow Rett parent, hug your child, and spread the word!!