Tuesday, September 30, 2008

Are you ready for October? I am!!!

I am running my post through my head, and I may not have it ready tomorrow, but it's coming together! I'm sure I'll post more than one throughout the month, but for my first post I have decided to challenge myself. Before the end of the week I will post my third post for Rett Syndrome Awareness month...I am challenging myself to post about the POSITIVE influence Rett Syndrome has had on our lives. We constantly see the grim side of the diagnosis, and I know the positive takes more time to see, but it is there. Would you like to join me?

Sunday, September 28, 2008

I hate Rett Syndrome--kind of deep, grab a tissue!

Let's face it, each and every one of us parents go through this from time to time. You think it's all going great, and you're dealing with stuff one day at a time...Then, all of the sudden it strikes. Something happens that digs up all of those feelings in you. All of those feelings that make you angry, that make you feel like you have failed your daughter, that make you wonder if you've done everything you can...Does it ever get easier? Sure it does! The "I hate Rett Syndrome" moments become fewer and farther between. It gets easier to pull through, but still they happen. All we can do is lean on each other and remember that we are all in this together. Although Rett Syndrome takes us all on separate journey's, it is still Rett Syndrome. It is still a change in our lives that we never expected.

Just when you think you've got it all under control, something happens and you lose it...That pretty much describes my day. Since Caitlyn is in Kindergarten now, she is bringing home the occasional homework. We had two things we had to do today. The first was decorating a box that would hold all of the books they are making at school, so that she can read them at home. This should have been a simple project, but it tore open old wounds. We have these cool pen adapters (I'll post a picture soon) that Eric made for Caitlyn so that she can't throw the markers. She has one at school, and one at home. So we went to the craft store and bought a cute box and some stickers. We sat down after a short nap to decorate our box...It ended up with her running off laughing and me crying. It was such a simple task...But sometimes it is the simplest of things that remind you of what you thought life would be like. I never in a million years thought the simple project of decorating a box would hurt so bad. I can't explain the pain...It hurts to see her not be able to do simple tasks. My logical thinking knows that it shouldn't hurt. I know she knows know different, and doesn't seem frustrated...but the pain persists. We did finish our box...I decided not to venture into the Jack and Jill assignment, thinking we would do that in the morning. (We have to count the words in each line, marking them on a little graph)

With everyone one of these feelings, questions come up in my mind. Today I find myself wondering...In those moments that the tears escape before I can be alone, what do I tell Caitlyn? How do I explain the pain I feel to her?

With every tough day, comes a good ending. On the hard days, I strive to make the ending enjoyable for both of us. Caitlyn had a very enjoyable bath, which left us both soaked. We then read the book that she brought home from the school library on Friday, by flashlight. She loved it! We curled up in her bed together, she turned the pages and I read the words. She was so excited to turn the pages and see what happened next. It is hard, but we try to find a drop of joy in everyday...

I feel like Caitlyn was just diagnosed with Rett Syndrome yesterday...

Tuesday, September 23, 2008

Life Goes On...Did you grow up with it to?

Many of us in my age range and older remember the days of family TV programing on Sunday nights. There are two shows I really remember. First it was Life Goes On. This show starred Chris Burke as Corky. Did you spend your Sunday evenings with the Thacher family? Today I dream of my daughter having a sister like Becca Thacher. (the other family show on Sunday nights when I was growing up was Touched By an Angel)

Anyway, the reason I am bringing you all down memory lane is because tomorrow I am leaving to go over to Yakima with 4 other moms of children with special needs. We are going to attend the Valued Lives Conference. Tomorrow night I will have the opportunity to hear Chris Burke speak. I'm thrilled to have this chance. I will be sure to fill everyone in on my experience after I get home on Friday.

This is just the first of some exciting opportunities I have in the next couple of months. Next month I will be attending a KIT training (KIT-Kids Included Together). This training will train me so that I can train others on KIT. This is so exciting for me to take part it these trainings. I look forward to a day when our children can go to the same fun kid places and not be turned away. A day when parents wont have to worry about what they are going to do with their children when they are forced to get a job...There will come a day when all childcare providers will be trained on including all kids together in their centers. Dream with me, and let's make the step to make a difference!

Sunday, September 21, 2008

To All Blogging Rett Parents

Rett Parents:

As we all know, October is Rett Syndrome Awareness Month. It is right around the corner. My suggestion is that we all post on the same topic for our Awareness post. Our first October I did a quite long post on our journey to learning about Rett Syndrome, and what it has meant in our life. That was a little more than 6 months after our diagnosis. Last year I did a shorter post talking about what year 2 brought us in our journey. If other Rett blogger's would like to partake in a post topic for our Awareness posts, please leave a comment with any suggestions you might have, then we can have a vote. Imagine how therapeutic it would be for newly diagnosed families, or families who have their diagnosis for years to be able to spend some time reading several different views on one Rett related topic.

Also, if you are a regular reader of my blog, or just stopping by, and you would like your child's blog listed on my list, please leave a comment and let me know.

Lastly, it is a long time away, but let's start thinking about the IRSF conference 2009. If you think you might be attending, let us know! I will most likely be arriving on Thursday so that I can enjoy a little bit of time before the conference starts. (if nothing else, that's what I learned from Chicago. Spending that money to go, I need to arrive early or stay late so that I can enjoy some vacation!) Maybe we can plan a Rett Syndrome blogger get together at some point.

Take care everyone!

Saturday, September 20, 2008

another update

I first want to apologize to those looking for pictures...I will work on that some this week.

Where to start...School first, I guess. Caitlyn's second week of school went much better than her first. She is getting the hang of things. She loves going to school. I drove her on Tuesday last week, and it was so cute! Her Kindergarten classroom is right next door to her life skills classroom. When we show up in the morning, she tries to break away and go into the K class. She knows that is where she enjoys being the most. We decided to try letting her buy lunch, thinking it would save some time and let her have more of a variety. There is a lot of choices, so we'll get to the point of letting her choose what she wants each day.

Tuesday night was curriculum night. Eric and I seem to be on the young side of K parents in her class. We enjoyed the evening. We had the opportunity to speak with her K teacher for a couple minutes. Turns out no one thought to tell her that Caitlyn's placement was only until the end of October. This is huge for us because she really seems to enjoy having Caitlyn in the class. The other kids are really warming up to her. It's great to hear about!

On the Benecalorie front, we are doing ok. We don't know yet if she is gaining, but we are able to get one container in her each day. We mix it in her propel flavored water, oatmeal, mac and cheese, pudding. I also put it in her scrambled egg mixture, or in the mixture of french toast. She is handling it pretty good. It does make her a little less constipated, but all of you other Rett parent's know that's not a bad thing! The real test will be if it is putting on any pounds...I struggle with this decision. I know she is healthy, but I also know that she is too skinny. What I struggle with is what do I do when she gains 5 pounds? Will I still be able to take care of her as easy? Will it get too hard if she gains?

Caitlyn had a great eye doctor appointment on Monday. She will be getting glasses, but first we have to find a place that will take our insurance for frames. Hopefully it will improve things over all for her.

I promise next time I post I will try and get some pictures up...

Friday, September 12, 2008

We're BACK!!!!

Today finishes off Caitlyn's first week of Kindergarten. She has about 7 more weeks of "proving" herself to go. The week started off strong, followed by two not so strong days. Caitlyn wasn't getting enough sleep at night! She was waking early. Wednesday night she was asleep by 6:15 and woke up about 7:15 am! We were sure this would help! She is still struggling with what they say is being tired. She gets pulled from her Kindergarten class to take walks and calm down. We are suspicious that there is more frusteration that being tired. Yesterday was a better day, but still rough...We are hoping she will finish off the week with a bang! We are trying to teach her staff to read her ques, and head off the melt downs before they start. I am discouraged, but keep telling myself that it is only the end of the first week. Being away from home for 7 hours a day (counting bus time) is a lot to get used to. (for mommy too.) In feeling discouraged, I sometimes find myself wondering if we are doing the right thing...

In other news, starting Monday we will be using Benecalorie. Here is the description: There are two reasons why BENECALORIE® is the ultimate solution for fighting fatigue; a formula that packs 7 grams of high-quality protein and 330 calories into a single 1.5-oz serving, and its ability to blend easily into liquids and most foods. Maximum nutrition, maximum flexibility, maximum variety, with a minimum serving size.

We got this as a prescription from our doctor, so it is being payed for by our insurance! We can mix it in Caitlyn's food and drinks throughout the day. That's an extra 330 calories a day! I know Caitlyn isn't all that small at first sight, but her weight for hight puts her right at or just below the 5th percent. We are being proactive and trying to avoid the possibilities of weight loss if Caitlyn gets sick this winter! I'll let everyone know how it goes, but I encourage you to check out this product!

Caitlyn has an eye doctor appointment on the 15th, and then we have another meeting on Thursday at the schools to discuss assessment. I promise to update soon, and also get a picture up!

Thursday, September 04, 2008

You Win some You Lose some...we sorta won

I'm sure everyone is sitting on the edge of their seats waiting to see how it went.....Caitlyn will attend the Life Skills classroom in the morning, and then attend a General Ed pm Kindergarten class with an aide. She will do this until the end of October while they observe her and we do assessments. Then we will meet again. I'm really hoping she shows her stuff in the next 2 months...

What an emotional proccess. It took us 3 hours to get to this...It was 2 1/2 before they even offered it! A piece of advice to all of those out there...When writing IEP goals, think of things that can only be met in a general ed environment. And make sure every conversation you have with teachers are in writing!!! We are happy with this for now. Caitlyn and I will go meet her teachers tomorrow morning, then she will start school on Monday. We faught for her...and we won this round...Now on to round 2...Thanks for everyone's support...it means the world!

Tuesday, September 02, 2008

We are ready...please pray for us on Thursday

Thursday September 4th, Eric, my mom (our note taker) and Linda (Caitlyn's childcare provider and our advocate) will join me in being Caitlyn's voice for our IEP meeting. We hope for a smooth successful process, that ends in Caitlyn's best interests being served. I will update everyone after that meeting to give you all an update. We could really use everyone's thoughts...The meeting is at 8:30 am. Thankyou.