The Reason I Get Up Each Day

After my last two posts, I am so happy to be able to post a positive post! Caitlyn is doing WONDERFUL!!!! We are still struggling a little bit with the feeding, but most days are going great!! It seems something is working!

We are on spring break this week, but Caitlyn finished off the week with a bang last week!!! Her 1:1 reports that Caitlyn had some of her best days ever in Gen-ed. Thursday she went all day without any need for a break! In fact, she came home and went strong until she crashed for bed at 7:30! The other kids in gen-ed seem to be noticing a change in Caitlyn. She has been so happy this past week! She was playing with some blocks with a couple of other girls, and they were tapping Caitlyn on her shoulder and saying her name. She was turning towards them! We are sooo excited with the changes we are seeing in her...

Now, maybe someone can tell me why...The Depakote seems to be affecting her eating in a good way. Could the joy, happiness and attentiveness be improving because of the L Carnatine? Or could it simply be that she is getting enough to eat, and isn't having seizures? What ever it is, I am sooooo happy to see this side of my little girl!!

So happy in fact, that I want to share it with every one! Last fall I promised everyone a picture of Caitlyn on the swing at the park...The shot of pure joy on her face was sure to brighten every one's day...Well, I couldn't get her to smile and look at the camera, so I did one better...We went to the park with Crystal and her three kids yesterday. The weather was chilly, but beautiful! I captured some joy to share with everyone. We have seen/heard very little in the way of tears in our house in the past four days...It is these times that I carry with me. The are the reason I can get out of bed during the bad times...Enjoy the happiness...(If you listen carefully, you can hear her giggles. We have heard a lot of those lately!

Feeling so blessed

I hate Rett Syndrome, but I don't think there is any other community that is as supporting in a time of need! We are struggling, but our Rett Syndrome family is here for us, and that feels amazing!

To answer Brandi's question, Caitlyn is not a milk drinker. Rarely we can get her to drink a few sips of strawberry milk, but it is few and far between. When we took her off of the bottle at 18 months (before diagnosis, or I don't know that I would have taken her off the bottle!) she quit drinking milk like she had before. We did find Ensure has pudding now, so we may try that.

To add to everything, Caitlyn has developed a sore on her tailbone. I am going to look at in when I got in to give her a breathing treatment, but I'm not sure yet what it is. It appears to be like a pressure sore of some sort. Hopefully it will heal quickly.

Rett Syndrome Strikes again?

Well, here is the update I promised!

First, here is the connection we seemed to have made. In mid January, we upped Caitlyn's Zonegran to 250mg. It seems that for the first time, we got hit with a side affect. We started to notice small changes in Caitlyn. First, we noticed when we were changing her that her tail bone was sticking out. Slowly we began to notice other changes. Her pants were needing to be cinched up more, and some were falling down that hadn't been before. To someone on the outside, the changes were subtle. To her mom and dad, they were huge, and coming fast.

There were nights when we would be lucky to get enough food in her to give medications. Some mornings she wouldn't even finish one package of oatmeal. It was a struggle, and became a fight to feed her sometimes. We would even make 3 different dinners, thinking maybe she didn't want what we had fixed...Our life was revolving around food...

Last week we headed to the Nuerologist for a check up. The last time she was there was December 1st. They weighed her, and she was down a full kilo. (that is 2.2 lbs) He decided to add Depakote to her med list, as it is supposed to be a appetite stimulant. Once we get to a comfortable level on the Depakote, we will taper off on the Zonegran. He said he'd rather her be middle of the line on two different meds, instead of topped out on the Zonegran.

So this appointment came in the middle of a nasty cold that hit our house. This cold had Caitlyn not eating at all on some days. She would get in these coughing fits that would make her start vomiting. It was horrible! Then I hear she has indeed lost weight...grr..So, I scheduled an appointment to meet with her Ped. and discuss our options. (we also saw another doctor in the clinic last week, and started breathing treatments for Caitlyn's cold. That got her eating again and gave her a bit more energy)

Today was our appointment with the ped. Let me just say, my daughter's pediatrician is the most amazing person in the whole world! He really cares! And to top it all off, he has an adult son with Cerebral Palsy. (I'll tell you a bit more about that in a second) So we discussed everything. He seems to think the Depakote will help a ton! I sure hope so! In the mean time, we will be seeing a nutritionist, and having a swallow study done. We don't expect the swallow study to show anything more than immature chewing, but want to cover everything.

So, we nervously brought up the g-tube issue at our appointment. We talked about how we can sit for 1/2 an hour and get very little in her! He shared with us some of his own experiences. How they look back at pictures of his son and his face with no meat on it...How he remembers trying to feed him with a syringe, fighting with each spoonful. He said he has never spoken to a family that regretted their decision, but that most said they wished they would have done it sooner. He said we will go with our plan for the next few months, and if in the end we haven't seen progress, we can honestly say we tried everything we could. It does feel wonderful to know that he completely supports us, and we support us if we decide that a g-tube is what Caitlyn needs. It doesn't make that decision any easier, but for now we will just keep an eye on her, and add butter and cheese to EVERYTHING that we can.

It is wonderful knowing we have the support. I will update as things change. Right now, my "skinny mini" (as we like to call her) is 38 lbs and 3ft 10.75 inches tall. Her BMI isn't as low as first thought, but it is lower than it was, and below that magical 5%. Please pray for her weight gain, and the sanity of mom and dad during meal time struggles!

Preparing an update

I just wanted to let all of my readers know that I will have an update up within the next week. We have some news to update, but I'm waiting to share it. We have an appointment next Tuesday with Caitlyn's ped. to discuss some things, and then I will come and update everything. Just pray for my little girl right now...

Party! and a bunch of other updates

Let's see...Where should I start...On the childcare front, our prayers have been answered. Caitlyn is being cared for now completely in the home! She gets to sleep a little later, and takes the bus from home! We found an amazing lady who is a former special education teacher. She comes in the morning and gets Caitlyn moving, feeds her and puts her on the bus. She totally isn't even phased by any of Caitlyn's issues, and that is such a blessing. And are you ready for this? She does our dishes! It have only been one week, but the first week went great!

We have had some really rough moments in school with para's in the past month or so. I can't go into a lot of detail, because you never know who might read this! But let's just say after some bad events, and writing emails and talking to the principle, Caitlyn is now being fully taken care of! She has the most amazing 1:1 all day! We couldn't ask for more!

Caitlyn continues to hold good seizure control after her last medication increase. I think she has had 3 short seizures all week, and maybe one overnight. We got back to the doctor on the 16th of March. Who knows what is next. Of course every family dreams about complete 100% control, but what do you do if that 100% control comes at the expense of your child's personality? If that 100% control is going to cause your child to have severe fatigue, and zone out what would you do? We fear that the next step for Caitlyn is adding another medication to the mix. We have been so lucky to have no side affects with the Zonegran. If it means keeping her "awake" isn't 90% control enough?

Last, but not lease, yesterday was Caitlyn's Valentines Day party at school! She got to go to 3 parties!!! They had one in her Life skills class, which I missed most of because I had an appointment. Then after lunch she got to go to a party with 5th graders! Her 1:1's son's class was having a party, so she and Caitlyn went to that. Then we went into Gen Ed for their party! It was great! I loved seeing how the other mom's interacted with Caitlyn. She truly is just another child in the class!

And I leave you with some pictures of Caitlyn and her 1:1 decorating a cookie. It seems that Caitlyn didn't care much about spreading the frosting. She leaned in and took a big bite of the cookie while she was spreading the frosting! What a stinker! She had a great time, but it was a busy day!

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.

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

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...

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.

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!

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!

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!

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.

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.

A friend needs your prayers

Hello online friends and family. I am writing today to ask for your prayers for another mom and her family. Her name is Kelly. Her daughter Jenelle has a rare form of epilepsy called Lennox Gastaut Syndrome. She also has some Rett like behaviors, but has tested negative for a Rett Syndrome mutation. Yesterday, Wednesday Nov. 26th Kelly posted that she has been diagnosed with Leukemia. Kelly has checked into the hospital to start chemo, and will be there for a month. Her whole family could use our prayers! As Eric and I sit in shock, and feeling for this family, we can't even imagine what we would do if one of us became ill and had to go into the hospital. Let's all gather together and pray for Kelly, her husband Brett, their children Jack and Jenelle and the rest of their extended family. Thank you and happy Thanks Giving.

A new mission

It has taken me some time to write this...

Imagine being the mom of a child with Rett Syndrome. (I know most of my readers can do more than imagine) Imagine that you are reading over the evaluation report you recieved from the school. All of the sudden you stumble on two words that stab at the depths of your heart. No one used them in the meeting, but they sure didn't have a problem putting in the evaluation and labeling your daughter with "Mental Retardation." You wonder what gives them the right to use such an old, hurtful term...a term that not even an old doctor has used...You go into the next meeting, and ask that those words be removed from any documents in your child's file. You are told that can be done with written notice. You then ask why they even use it anymore. You are informed that the state WAC (Washington Administrative Code) gives them permission...What would you do?


This is my story, and here is what I did. I called my dad, who spent 8 years in the State Legislature, and asked him what could be done. He said if it is in the WAC, it must be in at least one RCW (Revised Code of Washington). So I get on the Internet and start looking. I do a search, putting "the term" in quotes. I find 48 WAC's and 35 RCW's that contain "the term." I'm shocked. I can't even believe that we are still using it! I understand that it is a medical diagnosis, and that is probably not something I can change on my own. What I can do is fight to have the wording in all 48 WAC's and 35 RCW's in Washington changed. I am working with my local legislatures who are speaking with their policy people. We are going to try to get this to vote for the 2009 session. I will of course update my readers as we go through this process.

You, too, can make a difference. Does your state still use "the term?" There will be a vote in the Missouri Legislature to remove "the term" from government us. It will not change eligibility for people who have had old school doctors that have given them such a diagnosis. In Washington, it is the Department of Developmental Disabilities (or DDD) in Missouri, it is the Department of Mental Retardation and Developmental Disabilities. This must change! Our loved ones do not need such a hurtful, derogatory term assigned to them. Wont you help make a difference?

Momma, I can see!

Caitlyn got her new glasses yesterday, and we are surprised that she is actually leaving them on. School reports they seem to have a calming effect on her. Let's hope this is the beginning of a great learning opportunity for Caitlyn.

I know I haven't shared all about the IEP meeting yet, but I did want to share some news that we got from Caitlyn's general ed teacher. A little girl in Caitlyn's class wants to have a play date with Caitlyn! So I gave the teacher permission to give my number to the other mom. I'm so pleased that Caitlyn is making friends!

IEP meeting today...

I am feeling at peace after our meeting today. I will update later in the week, when I can share some of the specific goals we have set for her...The big news...drum roll...Caitlyn with have a 1:1 aide with her at all times!!!!!

Happy Halloween

Caitlyn had an exciting day yesterday. She had two parties, unfortunately I couldn't make it back to school for the one in her General Education class. The morning one was fun! They colored scarecrow books, and made a scarecrow. Then they had their pictures taken with it. They also had dirt pudding with worms. Caitlyn didn't have any worms because she has trouble with chewing gummy worms. She did enjoy the pudding! We passed on the trick or treating due to Caitlyn and I both having bad colds. Her are some pictures from her morning...

Caitlyn and the scarecrow

Caitlyn's teacher, Ms. Amanda feeding Caitlyn the pudding...Big open mouth...She kept spraying pudding on her teacher!

Caitlyn as Winnie The Pooh. She wore it for about 10 minutes before it just got too hot!

And one last picture to show...The adaptation made to Caitlyn's chair. She has a habit of pushing off of tables and sometimes flips her chair back! This is so cool, we are going to do it to one of our dining room chairs, also!

Taking it all in...and that volunteer announcement

Today was our meeting to go over the evaluations. It was emotional and hard. The wording is a hit that hurts so deep. The psychologist says the evaluation results put her "optimistically at a 24-36 month level." He says they gave her the benefit of the doubt on a lot of things. This momma had a really hard time hearing the things that were said. I am processing a lot of it...We have a lot of decisions to make as to what we will ask for at our meeting next Wednesday. That's really all I can say at this point...As I continue to process more, I will work on a post.

An update on the crazy PE lady. Caitlyn will no longer be joining her classes in PE. When the life skills class goes on Tuesday mornings, [my favorite para ed.] will keep her and one other student behind to work on turn taking with rolling and passing balls. They will also work on some yoga poses to help with range of motion. They are going to try and re-work her therapy schedule so that she can have speech or motor therapy while the general education Kindergarten class is in PE. We are so thankful that we wont have to deal with the PE teacher anymore!

Everything in our lives is one day at a time...

And now for the announcement. Since my business cards came in the mail today, it all feels more real. I am the new Washington State Regional Representative for the International Rett Syndrome Foundation. I'm hoping that I am far enough along on my Rett Syndrome journey to help new families just starting out on theirs. I have been stock piling my resources in the last couple of months, and going through some training sessions to make myself familiar with educational resources in our state. I hope that this journey just furthers my own understanding and acceptance on the Rett Syndrome path.