Friday, January 30, 2009

The reason I was raised on Country

There is a reason for everything. That is my feeling in life. Some things aren't as clear as others. While I was growing up, my mom listened to Country music and my dad listened to oldies. My older brother was into some really loud stuff. I'm sure it had words, but it just sounded like noice to me! All of my friends in school thought I was crazy to have picked up the country gene. I love Country.

I have finally found out the reason I was raised on Country! On March 1st, the new season of Celebrity Apprentice will start. This year Clint Black will be playing. I am so excited to announce that he has named the International Rett Syndrome Foundation as his charity!!! I love Clint Black. People have asked what his connection is. Clint had a niece that passed away several years ago from Rett Syndrome related complications.

So, since I was raised on Country, I decided to take this opportunity to raise awareness in my area. I have emailed the local country station's waking crew to see about an on-air interview. I would love it if the wonderful country listeners in the area knew exactly who Clint Black was playing for.

You can do it to! You don't have to be a country listener to take advantage of this opportunity. Email or call your local country music station and ask for the opportunity to do an interview about what Rett Syndrome is in your life. Let's tell all of Clint Black's fans what a great thing he is doing by playing for our kids!

*stay tuned for the report from Caitlyn's first trip to the movies.

Tuesday, January 27, 2009

Welcome to the Family

This is Caitlyn, just a few months before diagnosis

Three years ago today, we had an unexpected and uninvited visitor come to our home. We tried so hard to run it out, but it kept taking over our lives. It brought with it things that I never knew about, and didn't really want to learn. It took things away from Caitlyn that weren't fair, and told us it wasn't giving them back. It made the doctors think that Caitlyn was going to mentally be a 2 1/2 yr old for the rest of her life. (ok, that doctor hadn't met IT) When we learned it's name and found out where it came from, we hated it even more. Here was this thing that we didn't want in our lives, and it was taking over! It took my daughters love of coloring...It took her ability to speak, it made her hold her breath and hyperventilate...It brought with it seizures, reflux, stereotypical hand movements, irregular breathing, stares from strangers and a whole lot of other things I'm sure we haven't found yet. It let little surprises for us all over the place! For the first year it was with us, on the the good days I could forget it was here. On the bad days I hated it! I hated what it was doing to my family. It changed our lives forever.

On the first anniversary of it's arrival I cried and cried and cried. I asked it when it planned on leaving us alone! Last year as we came to realize it had been with us for two years, I didn't let it effect my emotions...But I still wanted it to leave us alone!

Today, I can say "Welcome to the family, Rett Syndrome." Although there are still moments that are difficult, I can say with a smile on my face that it didn't just bring bad! When Rett Syndrome came into our lives, so did our ability to adapt. It brought with it an amazing appreciation for all things God creates. Rett Syndrome introduced me to some amazing people. I met people that knew Rett Syndrome before me. There were special people (thanks Rose Marie!) who made me realize that Rett Syndrome didn't have to be all bad. I learned to take my life slower, and not take anything for granted.

Yes, I still want Rett Syndrome to leave us alone. And I hope and pray that one day it will decide it is done visiting us (and all of the other children it lives with) and leave. There are still days that I strongly dislike the fact that it chose to be in our family. But, just like anything else it is still part of our family.
Acceptance is huge. I don't know that I am 100% there, but I am so much further than I was 3 years ago.

Rett Syndrome introduced me to some wonderful women through the Snohomish County ARC who made me realize I had what it took to fight, and be an advocate for my daughter and others. The ladies there have been amazing sources of information and support. I love you guys!
One day in July, shortly after our diagnosis, there was a comment on my blog. It was from a mom living in Singapore at the time, that had just received news that Rett Syndrome had also joined their family. My heart broke for them. For some reason this was the first time I realized we weren't going to be the last ones on earth to learn about Rett Syndrome.

Another mom came along (and she wasn't the only, but was the first) that told me I was an inspiration. I guess somehow through my blog writings I was helping other mom's (and dad's) realize that they could live with Rett Syndrome. She is now my inspiration in everything that I do. (Thank you Kelly B. for inspiring me) Why should I sit back and live with Rett Syndrome, when I can help other families see that they too can live with it.
As mad as I was the day Rett Syndrome joined our family, I can only thank it for the things it has changed. I have made amazing friends because of something so horrible.
Rett Syndrome, welcome to the family. But don't get too comfortable, because there are some pretty cool people out there that are fighting like crazy to find a way to make you leave!!

Caitlyn now

Thursday, January 22, 2009

Why can't it be simple?

There are little things through out our lives that remind us of the challenges that Rett Syndrome presents. There are big things also...We deal with the big things every day. Right now we are dealing with the little things. Between now and next Tuesday I will be doing some reflecting. Tuesday January 27th, 2009 marks 3 years since we received the news that Caitlyn did indeed have Rett Syndrome. I wont get all into that right now...The focus of this post is the irritation that it can't be simple.

We have a pretty good deal going on right now for childcare coverage. I am with my 4th employer since Caitlyn's diagnosis. I left the first place shortly after receiving the news, because the Neuro scared us all to hell. (more on that another day) I stayed home with Caitlyn until the following fall when she started Preschool. Every other time I have had to leave a job, it has been because of something related to her childcare coverage. There was one gal who seemed to have it all together at first. It turned out to be not a good match, and left Caitlyn with a fear of having BM's. (a very long story) Right now we have a great set up! In the morning Eric drops her off at a sitters house. The bus picks her up there and takes her to school. After school, we have a wonderful friend that gets Caitlyn off the bus. Well this week our morning gal said she doesn't know if she'll be able to continue watching Caitlyn. Through no fault of her own, this pisses me off! If my daughter didn't have Rett Syndrome, I could sign her up for the YMCA at her school. I would get a 25% discount since I am an employee. Something as simple as finding childcare for my daughter sends my emotions in a whirlwind, and just really pisses me off.

On a happier note, Caitlyn's medication increase seems to be working for the time being. She had two seizures during the day on Sunday, and we haven't seen or heard of one since!!! Cross your fingers and pray with us that we will get a break from them for awhile.

*I will work at getting some new pictures in the next few days...

Monday, January 19, 2009

If I don't blog about it, did it really happen?

That seems to be my train of thought lately...If I don't type it out on my blog, there is a small part of me that can pretend it didn't really happen. For this update, I have to go back in time to the week of Thanks Giving. The Tuesday before Thanks Giving, Caitlyn's wonderful daddy got up with her at 12am. They stayed up so Caitlyn could go in for her sleep deprived EEG. (Have you ever done this? hahaha...not fun!) The next day the nurse called me. She started out asking how Caitlyn was doing, which made me a little nervous. She informed me that the blood results they had recieved the week before from the ped. left them a little worried. I guess her Zonisamide (the seizure med she is on) level was 32 in May, and dropped to 23 in November. This is the level of that medication in her blood. I told the nurse that she was doing ok. That we had seen a couple of seizures here and there in the couple of months prior, but nothing to big. (or so we thought...keep reading)

So in the first week of December Eric took Caitlyn in for her Neuro appointment. The doctor was comfortable with her current dosage, as long as we weren't seeing a significant increase. He did recommend starting her on MCT oil, but my research left me wondering if the potential side effects of weight loss and stomach issues would really be worth it. I found nothing supporting MCT oil on its own. I did find that it is used with a modified KETO diet, but we wont go there with Caitlyn.

We started to see an increase around Christmas time, but Caitlyn also had a sinus infection, so we were waiting and watching. They kind of taper off..(again...or so we thought) Then last week, she had one while napping at school. I called the nurse. And while I was waiting to hear back, I spoke to a couple of friends whos kiddo's also have seizures. I started to talk about Caitlyn's funny grunting in her sleep, and going into her room to see her shaking. There is so much talk about the startle motor issues that kids with Rett Syndrome have, I guess we just never brought this to our neuro's attention. This is something Caitlyn has done for several months. My friends and the nurse confirmed what I think that deep down I already knew. These seizures at night last about 1-1 1/2 minutes. The nurse said they will be worse when she is first falling asleep or waking up. This gives me just enough peace to sleep a little...

So the meds have been increased to 250mg's once daily. I think this may be the highest we can go on this med. The idea of adding another medication is terrifying. You see, we have been so blessed to not have any side effects...

In other news, I have been appointed to the Washington State ARC board! This is an exciting new adventure for me. I hoping that this will help me do everything that I can in my role as Regional Rep for IRSF

To all the other families out there dealing with seizures tonight...Together we will make it through.