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.

Thursday, November 27, 2008

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.

Monday, November 17, 2008

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?

Friday, November 07, 2008

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!

Wednesday, November 05, 2008

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!!!!!

Saturday, November 01, 2008

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!

Thursday, October 30, 2008

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.

Wednesday, October 29, 2008

Anger and other feelings

Yesterday Caitlyn had a quick appointment at school to have her AFO's looked at. So, after that meeting I stayed until lunch so I could see what the mornings look like. I felt feelings of my daughter being cared for, feelings of anger, and finally feelings of knowing I'm doing the right thing by fighting.

First, the anger...There are some huge issues going on with the PE teacher that are very angering...She has issue with Caitlyn's hand mouthing. She makes them put her arm braces on, which in my mind makes the PE time no longer meaningful. Caitlyn can't do much in PE without bending her elbows! Caitlyn's aide informed me that during General Ed if she doesn't have her braces, the PE teacher makes her wear a sock over her hands!!! We are furious and I'm feeling as though it is border line abusive to humiliate her and restrict her in such a way! So, as soon as I received this information, I went to the Life Skills teacher. She said they have brought up the issue, but apparently hearing it from the teacher isn't enough. So, she asked me to please bring it up at our meeting on Thursday. I was actually in tears talking to the teacher. Can you believe it? A sock over my daughters hands because she can't handle the spit!

I have questioned our decisions to fight so hard at times...Just because I wasn't sure if it was my agenda I was fighting, or if it really was what is best for Caitlyn. Yesterday answered all of my questions. Mom's and Dad's you MUST get inclusion in your IEP if you expect your child receive any during the day. And being in the lunch room at the same time as typically developing children is NOT inclusion. That would be equal to putting a poster of the alphabet on the wall and say you taught it to the children! Caitlyn's class goes to recess alone, and they sit off in the corner during lunch. These are the two times that the school tried to sell me on their inclusion policy. The poor children in that room are essentially being isolated from the rest of the school...It just breaks my heart...I wish I could fight for all the other children in that classroom, too! Inclusion isn't just about academics! Children deserve the right to meet and be around their peers!

Caitlyn's off on her field trip today...I'll update what I know probably tomorrow, along with an update after our meeting.

Saturday, October 25, 2008

Important meetings in the next couple of weeks.

If you remember back in September, I posted about our initial IEP meeting with the new school district. Well, our two months are coming to an end now. It's hard to believe my baby is almost 2 months into Kindergarten. I wish I could say that Caitlyn is doing wonderfully in school and that she has proven her ability to be in a general ed classroom. The truth is, it has been a very rough 2 months. I don't think it is in any way a true portrayal of Caitlyn's true abilities. It is frustrating and exhausting. She loves being in school, and the other kids love having her there. BOTH of her teachers are amazing. I know in my heart that my reasons for wanting her in a general education classroom has nothing to do with me doubting her true abilities. I know this, but at the same time I find myself wondering what is really best for her. I want her to have relationships and be accepted by the other kids, but I also want her to have a successful academic foundation. I am finding that the other kids can't help but be accepting to Caitlyn. I had a mom tell me that her daughter loves being able to sit next to Caitlyn! Caitlyn gets to go with her general education class to the pumpkin farm on Wednesday! She is going to have a blast, I'm sure...but mommy is terrified!

Back to those important meetings. Thursday October 30th, we will meet with the team to go over the results of the recent evaluations. This has me a little down. I try to keep in mind that the effects of Rett Syndrome on Caitlyn leave her unable to preform on a standard evaluation. She did relatively well. I was allowed to be there and help out with the evals, and for that I am grateful. We showed them how we sing "Old McDonald Had a Farm." Those that have seen Susan Norwell may find this familiar. Caitlyn picks the animal we sing about, and mommy sings. If Caitlyn looks away, I stop singing. She knows that if she looks back to me, I'll continue singing. She giggles and points at the animal the whole time. I think the eval team really enjoyed seeing that! The eval was hard for me. I have no doubt that Caitlyn knew a lot of what they were asking her to do, I think it was just too hard to make her body do it! My heart hurts for her, but she is such a good sport about it, and doesn't seem to be bothered! I know that Caitlyn is not at a 5yr old level developmentally. I am hoping to hear her put at atleast a 3 yr old level in one or more areas. If nothing else, it will show a developmental progression since diagnosis! Keep these numbers in mind, until I come back to update after that meeting. At 18 months, Caitlyn's receptive and expressive language evaluations placed her at a 9-10 month level. Please pray for our strength while we receive the results of her evaluations at 5 yrs.

On November 5th, we will go in again for the official IEP meeting to discuss permanent placement for the remainder of the year, as well as fine tuning her IEP goals. I want Caitlyn to be successful...That is ultimately my goal. I want whatever comes out of that meeting to full reflect the needs and abilities of Caitlyn. I will be sure to update everyone after this meeting!

Last month our family became victim to the economic downfall when Eric was layed off from his job. He is still without work, and looking hard. In the mean time, I have gone back to work. I am an Assistant Site Director for a before and after school YMCA program. I am really hoping that this will lead to a full time Site Director position in the near future! After one week, I am enjoying my position. I have also taken on a volunteer position, which you will have to wait to hear about!

I sent Eric to the store for batteries, so be on the look out for pictures in the near future!

Sunday, October 19, 2008

Pure Joy at the Park

Caitlyn and I went to the park yesterday, and I am kicking myself that I went without a camera! Her favorite activity has always been the swings. After outgrowing the baby seats, the park wasn't the same for her. She couldn't enjoy her favorite activity, because she couldn't hold on and stay seated. Well, the park closest to our house now has an adaptive swing! We watched from afar as other children climbed into it on there own and used it. This little boy was in it for awhile, and when another swing opened up I went up the parents and said "Excuse me, but would you be willing to move to another swing? This is the only swing my daughter can physically use." They were more than willing, and Caitlyn giggled and laughed as she swung through the air without having to worry about falling! She was soooo excited! I was so happy for her, and it took all I had to not break down crying as my daughter can swing again at the park! I promise the next trip to the park will include a camera! The life in her little face....it would have you in tears too..Tears of joy!

Thursday, October 16, 2008

"Your Daughter Threw Up"

I just spent the last three days in some training (I'll post more about that later). Tuesday morning I called the school to inform them that I would be in meetings for the next three days, and to please call Eric if they need anything. So, we are finishing up the morning session (at which we were presenting our knowledge from the prior two days) and my pocket is vibrating. So I peak to see who it is. I recognize the number as being school. I admit I ignored the call, but in my defense I sent a very lengthy email to Caitlyn's teacher last night (also worthy of its own post), and I thought it might have something to do with that. So I check the message when we finish up, and it is the school nurse calling to say Caitlyn "threw up quite a large amount." So I call back, and talk to someone in the health center, who tells me "yes Caitlyn threw up, and can I come pick her up?" Now, Eric and I are not the type of parents who will ignore her being sick. If she is truly sick, I'd go get her! But I was suspicious, because a couple weeks ago a similar thing happened, and I get there to get her, and her teacher said "yeah she had her hands in her mouth and stuck it back pretty far, but that's never bothered her before!" ARE YOU KIDDING ME? They called me to come get her because she gagged herself! Anyway, so I wanted to know the story...I got the story...no she didn't gag, she had her arm braces on at the time...I said, "Ok, I'm in meetings all day, I'll call her dad to go get her." Well, Eric isn't feeling well and was still in bed, which is why he hadn't heard them call! So he goes to the school. He said when he arrived and saw Caitlyn dancing around in the lobby, he had to hear the story....He got three different stories from people, but the ultimate truth came from that aide that had been with her at the time. It turns out she had just eaten some cheerios, and started getting upset. Then she burped some and SPIT UP!!! They called me to come get my child because she swallowed too much air and spit up! Eric, bless his heart, told them it is common, it wont be the last time, blah blah blah...What a pain!!! Anyway, that's my story for the day. Speaking of Caitlyn, I need to go wake her from her nap...Every once and awhile she just really needs to crash after school, and today was one of those days!

Wednesday, October 08, 2008

Caitlyn isn't disabled!

Well, atleast according the Washington State Department of Developmental Disabilities. It appears that there is an important piece of paper missing from Caitlyn's school file showing that she has developmental delays. I guess it isn't enough just to talk to someone and hear that she is receiving services, and does have nearly global delays...Or enough to contact her SSI caseworker and find she qualifies for their services...Nope, for now Caitlyn doesn't have a diagnosis or disability that qualifies her for services...Maybe they should come visit my home? What a joke...I just want some medicaid personal care hours so I can get a break! grrrr...Stay tuned, I'll let you all know if they decide she is indeed disabled...

Sunday, October 05, 2008

Just a picture to start off the week

Wouldn't you like to start off your week with a picture? My sister took this picture over the summer. I think it was during one of our "bangs or no bangs" stages...We were on a train ride through the super fun Country Village. One of those fun typical outings! I don't know what the week will provide as far as posts...Caitlyn is having a speech evaluation on Thursday, so I will atleast post after that. Maybe I'll even have more pictures! I really hope the eval goes smoothly...Now is the time for her smarty pants attitude to shine!
Just wondering...Do you find that other girls with Rett Syndrome have deceiving cheeks? With the chubbiness of her cheeks, people don't see how skinny she really is!

Thursday, October 02, 2008

The Good Side of a Monster

When a life altering even happens, such as finding out your child has Rett Syndrome, it can be somewhat hard to find the good in it. Had I been asked 2 years ago to name 10 positive things about Rett Syndrome and my daughter, I would have laughed. In my mind, at the time, there was no good. It isn't just about finding the good in a sad event...It's about finding the good in a monster...and it is there...

The GOOD Things About Rett Syndrome (in no particular order)

1. It is a diagnosis. There are many families out there that are still on the road to find a diagnosis for their child. A friend of mine would respond to people saying "My son has GOK syndrome." (God Only Knows). As much as finding out your child has Rett Syndrome hurts, imagine how much more it would hurt if you were still trying to find an answer. It closes a chapter of the unknown.

2. You learn to celebrate the little things. We clap and cheer just for a little tinkle in the toilet. Sure, all parents get excited when their children become potty trained...But we cheer for each time they go, and they may be 5 before they go the first time! We celebrate food making it into their mouths, even if it will never happen again. We celebrate the little attempts at communication.

3. You learn the true meaning of unconditional love. You will never hear your child say "I hate you!" As they run out of the room. They depend on you for every aspect of their life, and are so in love with you. You can see it in their eyes. That is a love that will NEVER go away!!

4. You develop a compassion for people that isn't anything learned in a book. I admit there was a time when I would feel such pity for people with children who were disabled. It just broke my heart! Yes, it still breaks my heart, but their is no more pity. Now, I see the strength in everything that parents do. I secretly praise them for having the strength to go out. I appreciate people more than I ever have before.

5. You meet the most amazing friends. The Rett Syndrome community is so close knit. We lean on each other in the good times and the bad. We may only see each other once or twice a year, unless we live close. The friendships are lifetime. Tragedy brought us together, but hope and joy keeps us together. Interests change, and your other friends may drift away. The friends I have made as a result of Caitlyn having Rett Syndrome are the most cherished friends I have. We follow each other's girls like they are our own. We help each other keep it together. (Gals, you know who you are.) It isn't just the moms...The Grammy's become our friends to. They follow our girls and love them.

6. You become an expert. Sure, I could go to school and become a doctor, but why spend that amount of time in school, when I already know more than some doctors. I am an expert in the subject of Rett Syndrome. The thing about that is, I can also accept that things are changing, and there is always more to learn.

I can find the good in Rett Syndrome, but that in no way means I like it. It has had some positive effects on my life. It has taught me to slow down. It has showed me appreciate every step I take. I have learned that at the end of the day, when I am exhausted and tired, I know that I did everything I could for that day. I learned not to think about yesterday (unless it involves not having a bm) or tomorrow. I live in the now. I live one day at a time. I have the privilege and responsibility to not only be a caretaker, but also be a voice. We are our children's voice. They have the best advocates they could want.

Rett Syndrome has brought out a side of me that I didn't know exited. It has brought out a leadership side of me that I am learning to embrace. Through my own experiences, I am learning to give other parents the power. Rett Syndrome has changed my life for the better.

I have a lot of ideas running through my head for topics throughout the month. My husband has agreed to do a piece at some point, giving everyone a father's perspective on Rett Syndrome. This should be a great month of reflections on Rett Syndrome and our lives. I am opening up to my readers, and if there are any questions or topics you would like me to reflect on, please let me know.

Wednesday, October 01, 2008

October is Rett Syndrome Awareness Month!!!

Welcome to the first installment in the Rett Syndrome serious 2008. Do you know our story? A quick recap: Caitlyn was born on August 5, 2003 at 10:20pm. She weighed 7lbs .02 ounces. (exact weights...) She was a beautiful baby girl with a head full of dark curly hair. Two days later we took her home. Everything proceeded normally, or so we thought. We look back now and see things that are now considered red flags. Caitlyn was a very quiet baby. She didn't even cry when she was hungry! We had no clue that this was a sign of things to come. Caitlyn's large motor skills developed slowly, but wasn't a huge concern. She started walking at 18 months, but was pretty unsteady and had lost the 5 words she once had. We first heard the words Rett Syndrome on December 3rd, 2005. The doctors were testing her to rule out the Syndrome. We had no clue that 6 weeks later we would be sitting in that same office hearing that our baby did indeed have Rett Syndrome.

So that is a brief overview of our story. You might ask "What is Rett Syndrome?"

Rett Syndrome (RS) is a neurological disorder often misdiagnosed as autism, cerebral palsy or non-specified developmental delay caused by a defective regulatory MECP2 gene, found on the X chromosome seen almost exclusively in females. Unlike females, who have two X-chromosomes, males have an X and a Y chromosome. Because males lack a "backup" copy of the X chromosome that can compensate for a defective one, mutations in MECP2 are lethal to the male fetus. This is why RS is found overwhelmingly in females. Rett Syndrome occurs in a variety of racial and ethnic groups worldwide now known to occur from 1:10,000 to 1:23,000 female births, but incidence may be far greater as new genetic evidence is discovered.

Development appears normal until 6-18 months of age followed by loss of acquired speech and hand skills, slowing of head growth and development of stereotyped repetitive hand movements, loss or difficulty with mobility hand movements include handwashing, hand wringing, hand tapping, hand clapping and hand mouthing. Stereotyped hand movements may change over time and additional problems may include seizures, breathing irregularities (hyperventilation and apnea), teeth grinding and curvature of the spine (scoliosis). 99.5 % of cases of RS occur only once in a family. Barring illness or complications, survival into adulthood is expected.

This month I will be doing a series on Rett Sydrome and our family. Join as I share our most deep and private struggles with this devastating syndrome. I will also share the happy moments, and the positive effects Rett Syndrome has had on our lives. If you find yourself asking "what can I do to help?" stay tuned.

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.

Tuesday, August 19, 2008

Life Skills...

If you have a child with special needs, you understand the pain of these two words. We will fight with all we have...If we can not get an IEP appointment on Sept 2, Caitlyn will not be starting the school year. I made it very clear today that I will not be sending her into a life skills program. I will not give up on my daughter. Do you have any idea how much doubt the school district will try and put in your head? I am so sure about what we are doing, but I still got off the phone and was in tears. I felt like I was some how letting my daughter down. Why do I let them get to me...I feel so defeated. But we will stay strong.

I am still without internet at home...Hopefully soon! I'm wondering if anyone would like to have a blog set up so we can all share calorie boosting ideas? I'm willing to set something up in my free time if anyone is interested!

Thank you everyone for your support.

Monday, August 11, 2008

We Haven't Completely Gone Away

Just a quick update for all of our regular readers. We are without Internet at home for another couple of weeks as we work through some things. I try to get the free WiFi around town when I have time alone. Caitlyn celebrated her 5th birthday last Tuesday. We haven't had a party yet, because I want to be able to invite friends from school. She had her well child check on Friday and is 3 feet 10 1/2 inches!!! She gained 1 1/2 lbs, and is at 39 now, but we can't really count it since she grew 2 1/2 inches!! We have put the weight issue on watch for now, but not really doing a lot of different stuff...Just crossing our fingers that she doesn't get sick! That's it for now!

Thursday, July 31, 2008

Last Day...

Today is the last day of Caitlyn's summer program. (actually it is tomorrow, but we are headed out early in the morning to go to our local Rett Syndrome conference.) She seems to have enjoyed her bus rides, and her time there. Do I think it made any difference in the over all scheme of things? No, not really. Would I do it again next summer? I'm not sure. One things is for sure, we were blessed with a wonderful teacher for the summer! And, it gave me a first impression of the school district, but we wont go there. Now, time to plan some fun activities. We have a month until school starts up again. I want to make it fun, but know that I will be pre-occupied with meetings and making arrangements for the fall.

Today is also my last day as Children's Program Lead at my job. I will work the next two Wednesday's and then I'm done, except for the occasional subbing. It is a little bitter sweet. I love the feeling working for a non-profit gives you. I have really enjoyed my time there, and it is hard to leave. But, I will no longer have to wonder where the money will come from for Caitlyn's medication. We are excited to get Caitlyn set up in some therapies outside of school. We also have Well Child Check scheduled for the 8th of August because my baby is going to be 5 on Tuesday! And we have a eye doctor appointment for September 15th. (We are also very excited about having our pull ups payed for again!) So, has I say goodbye to my job, I am saying hello to all of the doors that are once again opening for Caitlyn. Stay tuned as I fill you in on all of the exciting volunteer work I will be doing in the future!

Monday, July 21, 2008


I have no other title to write other than that. I feel like I should wear a sign when I walk into upcoming (unscheduled) school district meetings. My sign will read: "CAUTION: ANGRY MOM AHEAD." Now, I completely understand that things happen. It was out of my direct control that the IEP never got to Everett in time to get everything done before the end of the year. But the things that I'm hearing now are inexcusable!!!! So, back up a few weeks when I spoke to transportation they said something about already having transportation requests for fall, and they would mark the need for a harness. That struck me as odd, seeing as we don't know where she is going. Well, today I had to do some running around town, so I swung by and picked Caitlyn up after school. Apparently the head of special services came into the classroom to meet Caitlyn. Her teacher was told she was going to Mill Creek Elementary. This is NOT her home school, which means they are going to try sticking her in a self contained classroom. I am so angry that they told the teacher where she was going, when we haven't even met! I WILL NOT have my daughter in a mixed grade classroom! There is nothing peer about that! I am sooo tired of it! I am guessing that Caitlyn will not have a placement come September 4th when school starts. HOW DO THEY KNOW SHE CAN'T DO IT, IF THEY DON'T GIVE HER A CHANCE?!?!?!?!?!? The schools offices open on August 4th...I will be calling and getting a meeting set at that time. I am not going to just roll over while they stuff my daughter in the "Sock Sorting" class!

Thursday, July 10, 2008

FAT filled yogurt-250 calories and 14 grams of fat!

If your trying to get calories on your child (like most Rett mom's I know...) you MUST check out this yogurt. Someone had suggested it to me at one point, but I didn't ever look into it...My husband reports it is the consistency of cream cheese, but Caitlyn seems to enjoy it. The honey flavor has..are you ready for this...250 calories and 14 grams of fat for a 6 oz container! Bring on the fat, baby! Apparently no one buys it, because when I found it in the store there were only 4 in the display that weren't expired! I'll have to go back for more...Here is the link to the website where the other flavors and calories are listed.
I don't recall how much it cost, but for all those calories and fat in one little yogurt, I'm willing to pay quite a big! Just had to share...

Wednesday, July 09, 2008

New Scrapbooking page

Sometimes I do a page that is worthy of being posted on both sights, if I think it would be enjoyed by those who don't check the other blog...(you should...there are a lot of cute Caitlyn pictures!) Anyway, today's page is all about Caitlyn. It is what I imagine goes through her head as she struggles with her hand use. I'm sure the other Rett parents out there can relate...

My Hands

"They fell victim to Rett Syndrome beginning at age 2.

They don't hear my brain when it tells them what to do.

Don't bother trying, they wont listen to you either.

They do their own thing,

And make me so mad at times."

"Why don't they listen to me?"

"I tell them not to go in my mouth, but they must not hear me."

"Sometimes they hit...Please know I can't stop them."

Tuesday, July 08, 2008

Mother Daughter fun...typical style!

As a mom of a daughter with special needs, I sometimes get a little sad thinking about all of the mother-daughter fun we could be missing out on. Kelly posted on Brooklyn's blog about their "girl time" together, and it got me thinking about the stuff that Caitlyn and I do to try and make our time together as normal as possible! We did try the toe painting once, but let's just say it didn't end up very good. Back in April during spring break, my friend who works at a in home preschool brought her son and two little girls she was watching up to a place called Kids 'N' Clay. I took the risk of taking Caitlyn with, something that I never would have been able to do on my own if I had another 4 yr old with me! Can you imagine a Rett girl who can't control her hands and doesn't stop moving in a room full of breakable ceramics? We came prepared, with a brace on her non-dominate arm to keep it under the table. There were times that I wished I had a third arm. We put Caitlyn at the end of the table, so that in the event that she did break away, her painting was the only one she could reach...And thus we created....

We had such a blast painting this bank together! (Of course I did the name) There were so many colors to choose from, that I would bring down just a couple at a time for her to pick from. She picked all the colors, but mommy picked where they went. We also painted a little heart shaped trinket box for Grandma. (Well, I did most of that because she was feeling kind of done after the tiara bank.) I love that we can do things like this together! It required a lot of pre-thinking and was done almost fully with hand-over-hand to prevent her from eating the paints. But what a blast we had together!!!

Personal Plug: Since I'm feeling a little lost with summer and my baby girl being gone for 3 hours a day, I am scrapbooking away...I've challenged myself to a page a week, though this is only day two of her being gone, and I'll probably do a lot more than a page a week! Anyway, here is the link to my scrapbooking blog so you can check it out! Of course, you will find that Caitlyn is the subject of most pages!

Monday, July 07, 2008

Dental Scare

Wouldn't you just know, we are awaiting our medical coupon to arrive. In the mean time it appears Caitlyn has ground her teeth down to a possible exposed nerve on one front tooth. There appears to be a hole type crater. It is still white, so I don't think it's a cavity, but we are worried about infecting. I will call the dentist first thing in the morning and see what we should do. I'm thinking it just needs to be pulled...(it's a very front tooth, one of the first that would fall out anyway.) I will update when we know more about it. As of now, it doesn't seem to be bothering her too much. Let's hope it stays that way!

Time flies...

Caitlyn and mommy shortly before her 3rd birthday, July 2006

Caitlyn and Mommy October 2007

Caitlyn and Mommy July 2008

I just wanted to show these three shots for a trip down memory lane...Looking at it, I can't believe how much she grew between almost 3 and shortly after 4!!! And now look at her! She keeps getting bigger, and I keep getting smaller! (Sorry we didn't look at the camera in that last one...Daddy didn't get us looking before he snapped the picture!)

Saturday, July 05, 2008


I just wanted to share this picture of Caitlyn dancing with her grandpa at our BBQ on the 4th. (Yes Caitlyn is tall, but Grandpa is only 5'4...) I don't remember what they were dancing to, but she had a blast dancing with Grandpa. the picture isn't the best, because we often times resort to cellphone pictures because we always fail to take the camera with us! I hopefully will have a lot of pictures tomorrow! We are going to a picnic at the park (an ARC event) and this park has a petting zoo, and sprinkler park...Let's hope for nice weather!!

The Littlest Heroes Project

This is too cool not to share!!!! A friend of mine sent me this link, and of course the first thing I did after reading their website was send in our info, then come here to tell you all about it!!!! The Littlest Heroes Project does photo shoots for children with illness/disabilities and their families! I figure if Autism is on the list, then Rett Syndrome (and all the other crap she has because of Rett Syndrome) should qualify!!! Here is the link to the list of photographers. They say not to worry if there isn't one listed for your area, they'll find someone. (Kelly, there is a listing under OHIO for Tri-State area.) I'll be sure to post pictures and let you know when our photo shoot is, for now drop them an email and sign your angel up for a free photo shoot! (Didn't I mention it's free?!?!?)

Wednesday, July 02, 2008

Super cute Caitlyn stories!!

So, when you have a non-verbal child I think you run the risk of other kids taking advantage of your child. I am starting to see a little of this at Caitlyn's daycare. The gal says the older girls have sort of adopted Caitlyn as their own personal life size doll. She'll go where ever they want her to, and she doesn't talk back like the other kids! I guess it isn't really taking advantage of her, they truly seem happy to include her in what they do. One girl in particular loves Caitlyn to death. She is the same age as Caitlyn and about the same height, but probably has a good 5-10 pounds on Caitlyn. So yesterday when I dropped Caitlyn off this little girl came running to the door. She said "Caitlyn, we're playing Sorry. Caitlyn do you want to play Sorry?" She then looked at me and said "Can Caitlyn play Sorry?" I said "She can try, but she'll probably need help." So the girl says "Ok, let's go Caitlyn" and proceeded to take her by the hand and lead her into the kitchen. (Caitlyn went willingly...I think she thought the girl was going to feed her..) So Linda (the care provider) and I were talking about the mysterious finger shaped pinch mark on Caitlyn's arm. (my daughter with the alien like pain tolerance doesn't cry when she gets hurt, unless it scared her.) I look into the kitchen and see the other little girl trying to lift Caitlyn into the bar chair so she can play Sorry with them! Linda's helper got over there before anything terrible happened, and the other girl says "I just wanted to lift her up into the chair so she can play Sorry."

I can't tell you how pleased we are that Caitlyn is at Linda's house! When I finish working, I am going to keep sending her there one day a week. She has never been in a care situation where the adults tried so hard to educate the other children. Caitlyn is truly making friends! (And I'm a very proud momma)

So when I went to pick Caitlyn up, Linda told me another story. She said Caitlyn and this little girl were outside with a couple of other kids and Linda's helper. The little girl brought Caitlyn inside. Linda said they were both wet down the front, and Caitlyn was wet on her back. (She has a water table in her back yard) The other little girl proceeded to say "Caitlyn did it." I suppose you can blame it on the non-verbal kid, huh! It made me think of stories my mom tells of my brother blaming stuff on my sister when she was a baby in her crib! I love that my little girl is being accepted in this environment. This just goes to show you that she can have a blast in a general ed classroom!

Tuesday, July 01, 2008

Deeply Touching

All I can say is I once read this speech, but hadn't seen the video...The words speak for themselves. Take the 9 minutes, listen and spread the word..Let's end this countries hate. (after seeing a sibling panel in Chicago, I could imagine some siblings of Rett girls to deliver this speech...)

Monday, June 30, 2008

Social Security meeting today-update

Just a quick note...If you see this post before 2:05 pacific standard time, please say a prayer! I have a meeting with the new SSI caseworker to see if we can get Caitlyn's benefits reinstated. If the meeting ends on a positive note, she should be fully insured by August 1! This will mean pull-ups payed for again, being able to get her therapy outside of school, no co-pays on meds or doctors appointments, no premiums, medicaid personal care hours, and a little bit of money. The money isn't as important to us as all of the other benefits. I will update later today or tomorrow morning with how things went.

Another benefit of moving...A new SSI caseworker. And she is much nicer than the old one! We got in with one day to spare...had we not been in until tomorrow, we would have had to start the whole application process over. So, we were approved!!! We qualified for the month of June and for July, but not for August. Every month that has 5 Friday's we wont get a check, but we should still get insurance, and that is by far more important! The funniest thing with this switch in caseworkers...Back to May of 2006, nothing has been verified on our account. Our last check was in July of 2007. Everything was just estimated. So, the gal said she is going to go through and verify everything. (poor thing...2 years worth of pay stubs she has to go through!) If it comes out that there were months in there we could have gotten money and didn't (I know there are a few) or didn't get what we could have, we will get more...also is true that if they gave us too much at any point, we will owe. Let's hope the first is true!!! Yippy for health insurance!!!

Friday, June 27, 2008

The Fork

Learning to use a fork is a slow process for Caitlyn. When we first started, she wasn't quite sure what to do. She would pick up the fork with her left hand, and then pull the food off of the fork with her right hand to eat it. The food made it in her mouth, and the fork became air born. We did some hand over hand until she realized the food stayed on the fork, and then started letting her do it again. Everything went smoothly, except the fork still became air born. Picking up the fork 20 times in one meal was enough to say "forget this." Well, that and the fact that it makes meal time take extra long. I'm all about her forming some sort of Independence, and we are trying hard to always make time for her to do stuff herself. So here is where we are today with the fork. This is a super quick video because I shot it with my cell phone. But as you can see she picks up the loaded fork, brings it to her mouth...and...ready for this...doesn't throw it!!!! Mostly we have her aide Kim from this past year to thank for this! They encouraged us to send in things that needed a fork for lunch just for this purpose. The short video doesn't show it, but she will sometimes put the fork on her lap because the routine with Kim was "eat the food, put down the fork, and put your hand back in your lap." They really stressed the waiting and having her hands in her lap because other wise she couldn't eat at the table with the other kids because she'd steal their food! So here is Caitlyn's Fork Process...Who knows if she'll ever be able to poke the food...but for now we'll take this...(we tried the spoon...We both ended up covered in yogurt, so for now it's all about The Fork)

I forgot to add that she got made there at the end because I was filming and not reloading her fork...I guess she doesn't think I have my priorities in the right order.

Tuesday, June 24, 2008

Chewlry, Neurology and school

We will of course start with Chewlry!!! I am in love with these stretchy plastic things! When I was in Chicago, I saw a girl chewing on a necklace, and I asked the dad to tell me all about it! They are called Chewlry. So that night Kelly (Brooklyn's mom and fellow Internet junky) and I looked it up on line. We found where they could be purchased, and I went home prepared!! Well, I finally got around to looking it up again a couple weeks ago. I of course had to get the mega chewlry because it said it was stronger! (well, they are also bigger and that is why it is twisted) The whole point was to give Caitlyn something to chew on other that her shirt. Let me tell you, this plastic necklace does so much more than that! We have 7 colors-blue, purple, green, red, orange, yellow and white. They haven't totally replaced the hand chewing, but they have helped. What they have done, is changed her hand pattern. She doesn't chew on her shirts (but darn it they are still wet a little because the necklace gets wet) and probably the big thing is the fact that she has almost completely eliminated the "crotch grab" from her hand patterns. I don't think I've ever talked about this, but there are days when she constantly looked as though she had wet herself because she would suck on her hands and then grab herself! (not a "i need to go potty" grab...that is a single finger point...this was a full on grab) These necklaces are a wonderful thing!!! And so worth the outrageous price I paid for them! And, no matter what color Caitlyn is wearing, she always gets to choose the color of her necklace...she wore orange one day with a brown shirt...

I couldn't find if I had posted about Caitlyn's neurology visit or not, so here is a little update. I had to work, so my wonderful loving husband Eric took her. Don't get me wrong, I love him like crazy and appreciate so much that he is an active father...but he's not the best at telling the story after the appointment...He says it went fine...next appointment is December 1st. Yippy! We have control, and are being bumped to every 6 months instead of every 3. Cross your fingers that we can keep this control...She is so much more happy seizure free! So last week the report from the doctor came...There was all this stuff about weight and follow up with nutritionist...(momma freaked out!!) Yes Caitlyn is skinny...her weight percentage is 50% for her age, but her BMI is right at 5%. Under 5% for a BMI is considered underweight. I have the BMI calculator listed on my favorites, and I run it every time we have a growth spurt! So I got all nervous wondering if the doctor was expressing concern with her weight. She has been 37 lbs since about October I think, but she grew again...she is 3'8" now. So I said something to Eric about the doctors notes...Apparently he expressed the concern to the doctor, and he said it wouldn't be a bad idea to have the nutritionist follow her...I want to live in a world where I don't have to worry about every single calorie that goes in my daughters mouth...some mom's say "please don't feed my child the high calorie juices and whole milk..." I say "please don't give my child fat free foods...she needs her fat!!!"

Another thing that through me off from the report was that they wanted another EEG before her next appointment...So I will have to call and see if they really do because Eric couldn't remember anything being said about that. I am really not looking forward to another 24 hours in the beautiful hospital...but if it really needed, we'll make it work! hmm...Maybe it is Eric's turn to stay over night!

Well, that's about it for today. I think Caitlyn and I are going to take a picnic to the river tomorrow for lunch since it is suppose to be so beautiful, so hopefully I'll come back with a lot of pictures to post!

Friday, June 20, 2008

In My Daughter's Eyes

It occurs to me that not everyone in the world has the same love for country music that I do. That being said, if you love someone with Rett Syndrome, you absolutely must hear this song!!! Even my manly husband will admitt that this song brings slight tears (never full on tears) to his eyes. Every time I am in the store or at the park and some stranger comments on how beautiful my daughters eyes are, I just have to smile. It is then more than ever that I stop and think of every other Rett child in the world. Our daughter's eyes are amazing, and they show everything...Enjoy

Thursday, June 19, 2008

A quick school update

Wow, I think this counts as twice in one day since last nights post was after midnight! Anyway, I spoke with some nice man from the school district today. Caitlyn will attend school July 7th-August 1 for 1 1/2 hours a day Monday-Friday. I guess this is better than nothing. It will give me the ability to breath for a couple of hours, since she will ride the bus. Well one thing is figured out...Still no idea what September will bring...hmm..Should I test them and see if they read EVERYTHING in the IEP, or let them know that she will indeed need an aide? I think they'll figure it out...I'll just send a note in that says "Please don't let my daughter eat the Lego's." It will take them about 5 seconds to see that she needs someone there to help her direct herself...We shall see how the month goes, and then we can decide for next year if it was worth it or not.

Blog Worthy Things

I think I posted too much for a few days, because now that I haven't for awhile, people are asking what's up! I wish I had a ton of pictures to show you, but I don't...I will soon, hopefully.

Thursday June 12th was Caitlyn's end of the year party. I went and it was a blast. She has a total of 10 kids in her class, and she is one of just 2 girls. One little boy (whose mom I know well) took Caitlyn's hand and lead her to go line up to go inside. (I have a picture of this...but they are old fashion and I don't have them developed yet.) And the highlight of the whole day...I have pictures from this, but I truly wish I would have been able to capture it on video...They always do musical chairs for their parties. (no chairs go away, everybody wins) Well, Caitlyn had had enough of walking in circles, so she broke away from her aide and started dancing on her own. The other little girl (who is almost a full head shorter than Caitlyn) came up and said to Caitlyn's aide "I want to dance with Caitlyn." So the aide held out Caitlyn's hands for her to grab. The danced together, and then (ok...mommy eyes tearing up as I type) the little girl put Caitlyn's hand up in the air and turned, so it looked as if Caitlyn was spinning her. I got teary standing there in the classroom seeing how much each of those kids really cared about my Caitlyn. (until I get my act together and develop the pictures, I hope you can picture in your mind this Kodak moment)

Father's day was fun! We drove to the top of the pass to meet my husbands aunt and pick up my brother-in-law. He is home on leave after 11 months in Iraq. We are all very thankful that he came home safely. On our way down the mountain, we stopped in Snoqualmie to go to the railway museum. (my husband is a bit of a train person) They do train rides throughout the day, and since it was Father's day, dad's road free! We took the short ride (about 25 minutes) that goes down to the falls and back. Here is a picture of the falls...They are just beautiful. Just on the other side is where the track runs. (I love Washington landscapes) We did this train ride when Caitlyn was about 2 weeks old. It was neat to do again, and Caitlyn loved it.

I wish I could say I had an update on the educational front, but really I have no clue. We still don't have a clue what is going to happen next year, right now we are trying to get answers on what will happen for the summer. I hope by the end of the week I will know a little more.
I quit my job because apparently not working is the only way to afford health insurance! Hopefully by the end of the summer we will have SSI up and running, and also have some Medicaid Personal Care hours to give me a break...
I promise to update again soon. Thanks for reading about my princess and her crew...(yes, she runs the show around here.)

Sunday, June 08, 2008

A fun long weekend-and a book

Well, since Eric headed over the mountains to spend time with his family this weekend, Caitlyn and I have been enjoying some mother-daughter time. Since Caitlyn's diagnosis, I have become active in the ARC. On Friday they had a Special Connections Carnival. There is nothing more exciting than being around other parents who "get it" while our children have fun. As you can see, Caitlyn had a blast with the bubbles. I kept moving her back to the bubbles so she wouldn't be so irritated that mommy wouldn't let her go in the bouncy house. She saw all the kids having such fun, and wanted to go in...But mommy knew she'd be terrified, so we stayed on solid ground. They had a petting zoo which consisted of some poodles dressed up in costumes, and a couple of quite large golden retrievers. Of course Caitlyn loved the doggies!!! Yesterday was a little big more low key. And then today I felt brave and took Caitlyn and her friend Jaymes to church. (what was I thinking?) They had fun, but Caitlyn was obviously tired. I decided it was time to go after she sunk her teeth into my arm fairly hard in front of everyone! Luckily we had made it through the service and I got my 30 minutes alone...Now both kids are napping for another 20 minutes or so and then I will drive Jaymes to his mom. I hope Caitlyn will put up with a little bit of shopping after that...
A few months ago I bought a book called "Writing to Heal the Soul: Transforming Grief and Loss Through Writing." It is written by Susan Zimmerman. She also had a book called "Grief Dancers: A Journey into the Depths of the Soul" (or called "Keeping Katherine.") "Keeping Katherine" was the first book I read having to do with Rett Syndrome, even before I ventured into the great big "Rett Bible." Some days I think I read it too soon, and then I think about how much I related to the feelings that Susan had. I was able to relate to the anger and the wanting to be away from it all. In "Writing to Heal the Soul," she says about "Grief Dancers/Keeping Katherine": "I had always sought the miracle of a cure for Katherine. I wanted her to wake up one morning and start walking and talking. I wanted to be one of the lucky ones who beat the odds. By the time the book was finished, a different type of miracle had occurred: I'd stopped hurting." She also says "How do I let people know that only through writing was I able to let go of my dreams for Katherine and love her as she is, and my life as it is?" Susan's daughter is older, born in the 70's. It wasn't until Katherine was 7 that they realized what it was that she had. As a mom of a young girl with Rett Syndrome, I feel very fortunate to be raising her in a time where there is a real possibility of a cure. Even though that is a real possibility, I still know that I need to let go of the dreams I have for Caitlyn. The dreams that every mom has for their daughters when they are born. So, I have decided that after over 2 years I am going to take the grief head on and deal with it. I will start making my way through "Writing to Heal the Soul," in hopes that I can begin to reach a sense of acceptance for everything that we have been dealt. It helps going through a grief acceptance book that is written by the mother of a daughter with Rett Syndrome. As I go through the book, I may share some of my writings, as I know from experience that it helps to know others are in the same place you are. I will for sure let everyone know what I think when I am done.
In case you are wondering, we still have no clue what is happening for Kindergarten. It is crunch time with only 2 weeks before school is out.

Sunday, June 01, 2008

A couple sweet stories to share

I have been thinking a lot about cute little things that have happened in the past year and thought of this sweet story I wanted to share.

Caitlyn was in the nursery at church with my niece. Caitlyn had a fairly big seizure (big for her) and then was laying on the floor upset. (she gets upset when people freak out about them...Eric and I have learned to just be casual about it and then she doesn't get scared) So she is laying on the floor crying and banging her head and I am told that my niece Trinity (who is now almost 3) was quite concerned. She told the nursery gal, in a very concerned voice, "I think you better get Caitlyn's mommy." Caitlyn is so lucky to have such a wonderful cousin, who just this morning told her mom "mommy, Caitlyn talks...We all talk." Isn't the innocence of a young child the most wonderful thing. I am sure that they will grow up to have an amazing bond.

Another little story...Let me go back a couple of weeks first..Caitlyn was invited upstairs to play with the neighbor. She had a blast. The little girl took Caitlyn's hand and just towed her around the house showing Caitlyn all of her toys. Then the little girl came and played here while I was in Chicago. The girls had a blast running around together, and she doesn't see Caitlyn as being any different, except that she notices she can't talk. So today Caitlyn and I were coming home from our morning walk with my sister and her daughter, and the neighbor and her little girl were outside. I wasn't sure if Caitlyn would look up and see them, but she did. The mom said "hi Caitlyn," and Caitlyn didn't react much...But when that little girl said "hi caitlyn," Caitlyn started sputtering and babbling and dancing around...she had the hugest smile on her face....This is so cool to me, because I remember a day when Caitlyn loved adults but could care less about other kids. Now she loves being around other kids. My little social butterfly!!

We will be getting a new camera this summer, but Eric says I have to wait. For now, he promises to find the cord to my camera so I can get the swimming video off and take more pictures! Stay tuned for super cute pictures of my princess!!

Saturday, May 31, 2008

She Drank IT!!!!!!!

I know what you're thinking, that's a strange title for a post. Soon you'll understand. Caitlyn hasn't been a huge milk drinker since she was 18 months old and we quit giving her bottles. (This was before we knew anything about Rett Syndrome. Had we known that 2 years later she would have lost her chubby cheeks and be just barely sitting at the line between underweight and ok I never would have taken those milk bottles away!) Anyway, so occasionally she'll take a few sips of milk, but mostly she just spits it out. I ready this funny cute little story on Brooklyn's blog the other day that got me thinking. We had at one point tried strawberry syrup, but it didn't make a huge difference. (that and with all the sinus issues and vomiting she was having, we had pink stains all over our carpet!) So last night while I was shopping I remembered Brooklyn's mommy saying she really liked her strawberry nestle quick. (4 scoops...the only way to go) So we tried it with lunch today. I was a little more conservative than Brooklyn's daddy...Caitlyn only got 3 scoops in about 5 ounces of milk. She drank the whole think without spitting it out!!!!! I had a feeling it would go over, because she likes the strawberry pediasure, but strawberry milk smells so much better! We are hoping we have a milk drinker back on our hands!!!!

On the thought of meals...We found Jimmy Dean breakfast bowls...They have sausage (or bacon), potato, egg and cheese in them. Full of yummy fat and protein and Caitlyn loved it! I'm all for quick and easy breakfast on school days!

My camera is having technical difficulties, so I'm not sure when I'll be able to get a new picture up. I think I might try and talk my wonderful husband into letting me buy one for my birthday..So be on the look out for cute pictures. And if you really need a cute kid picture fix, you can always head over to Brooklyn's blog...Her mom is great with the picture taking!

Friday, May 30, 2008

Thoughts to Ponder-a post on mobility and other Rett things

This got to be a little depressing and kind of a pity post...Now I'll have to take a super cute picture to make up for it...

Isn't it funny how no matter how you have it, it somehow looks better on the other side? I talk to my friends who have children with Autism about how their kids always run off. They stress about it and such. I say just once I'd like it if Caitlyn would walk to the front door on her own instead of having to hold my hand. Caitlyn is very very nervous and cautious with her walking outside. She panics if we step off of the sidewalk and onto the grass, and she wont take more than a couple of steps without hold someones hand. I am a mean mom somedays. I make her step over the threshold to go in or out on her own. We have stood for near 10 minutes at times waiting for her to take that step. Mind you this is like a 1 inch step. Sometimes she will get silly when she walks, and just stop and twist which then makes it look like I'm dragging her! We were outside today and she got stuck on a hill. She almost made it to the top, then she just stopped and sat down looking at me like "mommy, why didn't you help me?" It was the most pitiful look. There are days like today when I wish she was more independent with her walking. She leaked last night while she was sleeping, so we had to wash her blanket. Well it doesn't fit in our small 1/2 size washer so we took it down to the laundry room and payed the outrageous fee of $2.25 to wash it. Well, walking down there was a trick. It's always a trick when I have things to carry. She did think it was really funny to go out the front door and head the wrong way as fast as she could (which luckily isn't that fast) giggling while she went.

I think as a parent of a child with any sort of disability it is important to try and see the brighter side...

  • I will never have to worry about her running to the street

  • We can be around a pool and even though she has the fearless love of water, she wont go in alone because she wont step down off of ANYTHING (lakes and oceans are another story)

  • She stands right by the car while I unlock it (standing in fear of her surroundings, but standing still)

  • I can go to the laundry room with her, and do my think with the clothes, and not worry about her running into the parking lot...again there is a step

  • She loves to hold my hand and will reach for it...I'll never have to worry about her pulling away from mommy

  • She loves sitting in her stroller(to the point that she almost nose dived off of Santa's lap this past Christmas because she wanted to get back in!)

  • She makes me take my time-She doesn't walk very fast, and every time she holds her breath she has to stop going places takes awhile. And then she is such a people person that she stops and looks at everyone who passes!

I used to take for granted my ability to get where I wanted to go. I never even considered how I got that way, or what it might be like otherwise. I was always in a hurry, and never really noticed my surroundings. Caitlyn has made me appreciate mobility. I see the fear on her face when we walk down a hill, or when we walk onto the grass. She is literally terrified that she may fall. I hate seeing her go through that, because at home she is so comfortable and shows no fear. I never complain about the mobility that she does have. I don't complain for the same reason that parents of children who talk shouldn't complain about the things they say. Or the same reason that parents shouldn't complain about having options for their child. I don't complain because I know first hand that their are parents out there who are thinking or might even say "at least she walks."

Chicago was hard in a lot of ways. Ever since Caitlyn was diagnosed with Rett Syndrome, I have struggled with being around other families. The first time we met another family, we drove to their house for dinner. I left feeling like I didn't fit into this community her diagnosis had put me in. I hate that she has this Rett Syndrome monster, and sometimes I feel guilty that she has the abilities that she does, even though they are limited. I hate that two girls with the same diagnosis can have it so different. I struggle to find where we fit into the community. (of course I'm in tears as I write this) I'll never forget our transition meeting when Caitlyn was aging out of birth-3. The nurse said to us "I've seen girls with Rett Syndrome, are you sure this is what she has?" This was the same lady who said to us and the staff when the year started. "It's not a matter of if the seizures get worse, it's a matter of when. They will get stronger and they will get worse and eventually the medication wont work." These are things I'll never forget. I'm proud of Caitlyn for the things she does. I know she's worked very hard to be where she is. She's come along way from the 2 1/2 yr old that the doctors said would pretty much be 2 1/2 mentally forever. She continued to gain skill even after she came out of her regression. Being handed a diagnosis is scary and it leaves you feeling even more lost. You feel like you're doing it all alone. And when your child has a condition like Rett Syndrome with such a vast difference of how it effects people you still feel all alone. Caitlyn's Rett Syndrome has made it so I've made connections that I wouldn't have made otherwise. In Chicago I met people in person that I felt like I knew everything about. I know they have Rett Syndrome in their life, but even though we share that common diagnosis our girls are all sooo different.

On a happy ending, even though our girls are so very different, they all have one thing common. Each and every girl with Retty Syndrome that you will ever see have the most amazing eyes. Let's go back in time now and look at this picture. This is from September of 2006...I think more than any other picture this shows the beauty of Rett Syndrome. The Eyes of an Angel

The Eyes of an Angel

From the Angel's mouth,

No words are heard.

Yet all those around her

Know just what she says.

From the Angel's eyes,

We hear her story.

Through her eyes we learn

Her every want and desire.

Look into the Angel's eyes,

And a story you will be told...

A wordless story full of joy...

The story of a Rett Angel.