Caitlyn's Family

What have we been up to?

2011-07-08T15:04:00.000-07:00

Wow! Where did the time go!!! The kids have both changed so much in the past few months! Here we are all hangin out after school one day. (it was pj day!) Caitlyn and I were having some cuddle time, and Gunner felt a little left out. He climbed his way up, and Caitlyn thought it was the funniest thing!!!

So, what have we been doing? Well, Gunner isn't walking any more...It is more like a run everywhere he goes. Luckily he does hold my hand and walk when I need him to...unless of course he sees a worm...He just recently started working on using a fork! Wow! That is huge around here...It was a little bitter sweet, as this is a skill that Caitlyn has never mastered, yet it seems to be coming to him so easily! It does make me realize even more so how much Caitlyn works towards the things she can do. Anyway, back to Gunner. He is a sensitive little guy. I recently got frustrated with constantly telling him no, so decided to start doing our own version of a time out. This was almost two weeks ago! He was getting into daddy's papers by the fax machine for the millionth time...I got down and in a firm voice using his whole name told him it was not ok, and took him and sat him on the floor by the couch. He didn't stay there, he got up following me for a hug in tears...But, he has not been back to that fax machine since! When he is really tired, even a simple no in a regular voice sends him to tears...He is so eager to please!

He loves his big sister soooo much! He brings her toys when she's in her chair, and will keep coming back for more when she continues to pull his hair and smack him on the head. He is our teacher..He is teaching us the true meaning of unconditional love!

What's she up to? Caitlyn finished up school a couple of weeks ago, and just finished her first week of summer school. She is doing EXCELLENT!! We are very pleased with her progress, and love to see her shine! Of course, she loves to shine too! We are dealing with some behaviors that are new, and hopefully wont stick around. It is a struggle day in and day out...she wants so much of our time and we know that her acting out comes from feeling like she isn't getting enough of it...I suppose, like any child, negative attention is better than no attention at all. We try to give her more 1:1 time, but it is a struggle right now.

Health wise she is doing fantastic!! She has put on about 7 lbs since the end of March, and actually has some meat on her!
Here we are together at a very fun event! A group of super awesome middle school kids at the school across the street put on a special olympics even for the two schools. It was such a wonderful experience! Caitlyn LOVED all of the attention, of course! Even Gunner had a good time!

Summer is here, and of course a challenge. Because of Gunner's age right now, it is hard to get out of the house...he isn't listening quite enough to just hang on to Caitlyn's chair, but she doesn't always have the stability to walk. I am always looking for volunteers willing to donated a couple of hours of stroller pushing, or kid chasing so we can get out of the house. They really are good kids, but there is just only one of me!

What am I up to? Well, I just finished my first quarter back in college. I got a 4.0 in both of my classes!! If everything goes as planned, I should graduate next Spring with my Associate of Applied Science- Transfer degree in Family Support Studies. Then on to who knows what...either more school, a job, or both...only time will tell!

I will try to do more updating...I forget sometimes that not everyone who reads is one facebook!

Walking man!!

2011-04-08T21:58:00.000-07:00

When on earth did this happen?!?!?

Bay Area Girls Trip

2011-04-06T11:02:00.001-07:00

Here are some pictures from our trip, in no particular order.
Here is Caitlyn gaurding all of our stuff at the Oakland Aiport after we landed.

Here we are headed into San Fransisco on day two of site seeing. The first day into town we drove. One day two we took the BART. So, did you know the BART goes through something called the Transbay Tube? I just looked it up...A maximum depth of 135 Feet BELOW the surface of San Fransisco Bay!! I'm glad I didn't know that before I got on!! It goes down a little fast, our ears actually popped!

At the Aquarium at the Bay, the gal brought a couple of star fish out of the pond for Caitlyn to touch.

I think this may have been her very first touch.

This would by my reaction to my friend suggesting that I touch the Stingray! Glad Caitlyn is more brave than I!

We rode the Duck!!!

Here is Caitlyn getting to drive!

Here is the Firefighter's statue from our Duck tour.

We even did the 1 hr Bay Cruise!
Me and the Bridge

Getting ready to go under the Golden Gate Bridge!
Here we are braving the wind and waves!

We had a fantastic time!!!

What do you mean "too skinny?"

2011-04-06T10:28:00.000-07:00

Caitlyn and I took a trip. We got on a plane and we flew to Oakland, CA. Are we crazy or what? It actually went great!! You can read a little about it her, on my new blog called Finding Balance. And, it seems not everyone has facebook, so I will do a post with all of our pictures too.

You may ask, why did Caitlyn and I go to California, leaving daddy and Gunner at home? Well, we went down to join the Natural History Study for Rett Syndrome. It was a great experience. If you have a child with a rare condition, you'll know what I mean when I say it is a breath of fresh air to see a doctor and not have to explain the condition to them!

So, the first doctor we saw was the GI doctor. I was a little discouraged after this appointment. She felt that Caitlyn was underweight still. That she should be atleast 62 lbs to be proportionate, and she is only 50 right now. So, to make up the difference and account for growth for the next year, she wants Caitlyn gaining 1 1/2 lbs a month for the next year!! That seems like a crazy lot to me. Given what we have done in the past 1 1/2 yrs, I feel lost.

Caitlyn has a feeding tube! This was her about 2 months before that was placed...She weighed 38 lbs and was about 4 ft tall.

And this is her now...She is 50 lbs, 50 inches. She is fuller and healthier...but still too skinny?!?!?

Ok, so she is still a little on the skinny side...but come on, she has gained 12 lbs in a year and a half!!! So, I guess we'll try and pack it on and home that all those who care for her can still do so when she has "thunder thighs" and weighs 62 lbs! I wish I had her problem!

Hold on...here come the pictures in the next post!

Fight of a Lifetime

2011-03-14T15:39:00.000-07:00

Five years ago, I never knew I was in for the fight of a lifetime. Not my lifetime, but Caitlyn's. The fight for quality and fairness, and all because of something she was born with! I volunteer on the state level to help advocate for the rights of people with disabilities. I was asked to write our story on services and what they mean to us. So, I am sharing it here.

As the parents of two children, my husband and I just want what every other parent wants. We have always wanted to be able to provide for our children everything they will need, and make sure that they grow up to be independent adults who can live the “American dream” and be anything they want to be. When we married, we never expected that the birth of our first child would change everything.

At two and a half years of age, our daughter Caitlyn was diagnosed with Rett Syndrome. Today, at seven and a half yrs old, Caitlyn relies on us for 100% of her care. She is unable to talk, dress herself, use the toilet, bath herself and feed herself. She receives about 80% of her nutrition through a feeding tube because of the amount of energy it takes to eat. She was burning more calories than she was taking in. She has trouble coordinating her body, and often times will walk into things or easily trip.

We still want to provide everything that Caitlyn, and now her 11 month old brother, Gunner, need. We want to be a two income family and live comfortably. Instead, my husband works and I have had to put my dreams on hold. In order for my daughter to receive Medicaid Personal Care, our family must sit at the poverty level. Really, it’s so much more than that. In order for my daughter to have me as “just a mom” for 77 hours a month, instead of me being her hands, voice, nurse and over all care provider, we must sit at the poverty level. For 77 hours a month, my daughter gets her mom back. For those hours she gets a mom who isn’t burnt out, who isn’t in pain from the lifting and who has the energy to play games and read books.

Caitlyn’s care provider has become part of our family. In fact, having her has allowed us to remain a family. Since she comes into our home, we get to goof around and play with our kids. My husband can come home from work and be “dad”, instead of immediately walking into the “caregiver/nurse” roll because my back has had it for the day. With MPC hours, we don’t have to worry about not having Caitlyn with us because we can’t care for her anymore.

Having MPC hours is bitter-sweet. I want to go back to school, get a degree and have a good job. The thing is the care that Caitlyn requires is so significant that I would be working just to cover all of her expenses and care. So for now, we feel trapped in poverty because we can’t physically afford to lose the minimal help we receive. For now, we worry. We worry about what happens when she becomes an adult. It seems every time we turn around, Medicaid Personal Care hours for adults are being reduced. We worry about how we will be able to keep Caitlyn in our community. I am a little on the short side, and 5 feet 2 inches. At 7 yrs old, Caitlyn is already almost as tall as me. It gets harder and harder already for me to care for her.

We need Medicaid Personal Care fully restored, and protected from further cuts. Parent’s in our state need to know that their “Caitlyn” can remain in the community that they have grown up in. We need that worry, stress and “what-if’s” of the future to be taken away. We need to know that when the day comes that we can no longer physically do the other 643 hours a month; the options will still be there so that our daughter can remain in her community.

Thank you for your time.

Update with Picture Overload

2011-01-23T20:15:00.000-08:00

Where has the time gone?? Gunner's first Christmas has passed, and so has New Years! I don't even know where to start with an update!!

I really wanted to get the kids over to the mall to see Santa this year, but it just didn't happen. They did, however, get to see him! He showed up at our family Christmas this year! Here is Gunner sitting on Grandpa's lap while he sees Santa for the first time!

And, one of Caitlyn on the same day. She was way more interested in the view of Lake Washington out the window, than of Santa!

Since Caitlyn was diagnosed with Rett Syndrome, the holidays have been rough. It seems like all of the differences are so evident during the holidays. I struggle with what to get her, and I struggle with wrapping presents that I'll just end up unwrapping myself. This year was much better!! We decided to start a new tradition. No wrapping paper! Santa showed up with these gifts on Christmas morning, and he must have known this was a "no wrapping paper" home. I had found a remote control dog that I was excited about. That is, until I was at Best*Buy looking for a gift for Eric. I saw an MP3 player boombox for kids! With Caitlyn's love for music, it was perfect! It made Christmas morning so exciting to be getting her something that I knew I couldn't go wrong with! Here she is having her morning tube-feeding while chilling with her MP3 player and her new princess Snuggie. We also went online and played some songs for her to see what she liked. Turns out she really liked Hannah Montana!!

And here is Gunner with the totally cool piano toy that Santa brought him! He might not fully get the whole Christmas thing, but he does get that a new toy showed up in the living room on Christmas morning, and that is pretty darn cool!!!

What fun would an update from our family be without a little drama thrown in? Last weekend started out as normal, aside from the cold that was taking up residence in our home. I went to the later Saturday morning Weight Watchers meeting, instead of heading to my normal 7am meeting. When I left, Caitlyn was just starting to wake up. At 9am, Eric called me saying to hurry home, that we had to take Caitlyn down to the ER. Well, when he went to hook her up for breakfast and meds, her g-tube button was gone! He tried to get the replacement button in, but it was a no go. We don't know how long it was out for. It all ended fine, with the nurses in the ER being able to get another tube in place, although it was smaller. It was very traumatic for Caitlyn, but probably more so for me. We had to help hold her down on the bed while they tried to push the new buttons in. She cried and looked at us with really sad eyes. Mommy saved the day, though, when I realized that my phone was able to link up to the hospitals wi-fi, and we could watch Wiggles videos on youtube!

And, an update on me. Every day I continue on my journey to a healthier me. I make dinners most nights for Eric and I (Gunner is even starting to eat some of what I make!) and continue to go to weekly Weightwatchers meetings. As of yesterday's weigh in, I have lost a total of 36.2 lbs since June of 2010! My clothes are fitting differently, and I just recently had to put my wedding ring on the shelf. It was getting too loose, and I was afraid I would fling it at someone. I have more energy that I have in a long time. I am doing this for me, and for my whole family! I gotta be able to keep up with these two!

And with that, I will leave you with this lovely picture of Caitlyn and Gunner. The relationship developing between them is so exciting to watch!

I hope God has Sponge Bob DVD's

2010-12-07T11:06:00.000-08:00

I really wish I wasn't posting this today. I thought about not posting it, because I know that people actually read my blog and I try not to write too much sad stuff...But I want you to know about a special boy...

I came to know the family a couple of months before Gunner was born. For so long before that, they were just another "friend" on Facebook with a child who had Rett Syndrome. Then one day I found out they were going to have a baby boy, and we were due right around the same time. I got to know Kerrie, and with that came learning about her beautiful son Aidan who was 2 at the time. Our baby boy's ended up being born on April 14th and 15th, and our bond continued!

Aidan is the little boy no one tells you about when your daughter is diagnosed with Rett Syndrome. A little boy, who against all odds, was here on earth touching the lives of all around them. A smile that would light up the darkest of rooms. Deep eyes that reached right into your heart. Like Caitlyn, Aidan had Rett Syndrome. This past fall, he turned 3 and started preschool! I was so excited to see the pictures of him in a fully inclusive preschool classroom. I became friends with his mom, and he captured my heart.

The reality I talked about in my last post came crashing down this morning. I woke up and started my day, not checking facebook when I got out of bed like I normally do. I sat down with my breakfast and turned on the computer. The email subject line read "another angel gets his wings." The tears began to flow, even before I opened it. The loss of a child with Rett Syndrome was hitting again...Through the light tears, I read that it was sweet Aidan. The tears came harder. This one hit way to close to home! I knew this family...I was friends with his mom, his baby brother was Gunner's age...

I can't even begin to imagine what it must be like for them...My heart goes out to the family. I pray for their strength and healing in this difficult time. I know that Aidan is running, jumping and singing now. He went into the open arms of the loving Lord..Just way too soon. He will be there to welcome his mom, dad, brother and extended friends and family when the time is right.

As the tears of shock began to fade, the deep sorrow set in. Then, all of the sudden, I started thinking..."I hope God has Sponge Bob DVD's."

Hug your kids and say a prayer for Aidan's family..Hold them in your hearts.

Hard Times, Facing Reality

2010-11-27T21:54:00.000-08:00

Every now and then, we get the horrible news. Somewhere in this world, God has chosen a young girl/boy to join him while they are still young. It is never easy to hear. Sometimes they are young, just starting out in their journey...sometimes they are a little older than your own, and you think "that is only a couple of years away"...Or sometimes they are older, and you try to imagine that far away. Age doesn't matter, it is the reality that hits like a ton of bricks. It is the reality that according to many of the doctors, they are living on borrowed time. We try so hard not to think about it. We live in the moment, think that the disaster will never strike our family. Truth is, when it strikes the family on the other side of the world, it has hit home. We are all family joined by two simple words: Rett Syndrome. The devastation of a diagnosis has brought us all together as family. When the disaster strikes one of our own, we can only wonder if the others are on borrowed time. This past week, it happened again. Rett Syndrome has claimed another life. We shed a tear, face reality, and say a prayer. We pray that a cure is found before another life is taken. We hug our kids, and thank God they are here, while we cry for the family that lost one of their own. The devastation must end. We need our cure.

If Rett Syndrome has ever entered the life of someone you know and love, please consider making a donation to the International Rett Syndrome Foundation. With your help, we can make this harsh reality of thing of the past. With your help, we can think about the future, and say farewell to Rett Syndrome. Don't know what to get someone for Christmas? Why not make a donation in their name and take us one step closer to a cure.

Caitlyn thanks you.

Too long..again

2010-11-27T20:09:00.000-08:00

Time slips away from us, and I forget that people are reading! It has been almost two months since our last post. So much has happened. And of course with lots of action comes a few pictures!

This is my playdough sunshine! I am currently going through a year long leadership and advocacy training program that is funded by the Developmental Disabilities Council in WA. Luckily, the wonderful ladies at the Arc of Snohomish county know we sometimes need to keep our hands busy while we are listening to presentations. It was a rainy, dreary day. I added a little sunshine to the room. I promise, I heard all the presentations!

We had our annual IEP meeting in October. The educational road for Caitlyn has been far from easy! We have disagreements, rough meetings and tears in the past. I am pleased to say that this years meeting was both civil and productive. It may very well be the first IEP meeting I have walked away from not wanting to cry. Caitlyn has a wonderful team on board this year, that all seem to see her potential. It is so wonderful to have staff that strives to help her meet her full potential. We are also excited to be actively searching for a voice-output communication device for Caitlyn. I know it will be a long process, but I can't wait for her to have a voice!

We spent the last few days of October at beautiful Cape Disappointment State park. We had one absolutely beautiful day while there, which was perfect. The trip wasn't all for fun! We took Caitlyn out of school for a few days to head down to the Ocean. On our second day, Eric and I woke up at 4:30 to get showered and get the kids dressed. We then left for a 2 1/2 hour drive in to Portland, OR to see a wonderful team of doctors and therapists that know Rett Syndrome. When you have a kid like Caitlyn, going to the doctor can sometimes be like going to the podiatrist (foot doctor) to have your eyes looked at! Rett Syndrome isn't a widely known syndrome. So, once a year we make the trek down to Portland to see "the team" at Legacy Emanuel Children's Hospital. It was a wonderful visit! They commented on how well Caitlyn looked, and were excited to see her growth both physically and developmentally. We walked away with some great ideas for communication and a plan to come pack next year! It was wonderful!

As you can see, Caitlyn had a bast at the ocean!! Unfortunately, we couldn't let go of her hand...She has no fear of water, and would have likely swam to China! Twice we were standing where we though it was safe, only for both of us to end up with water up to our ankles!! The first time I think we both freaked out a little...The second, we just laughed and splashed...Then headed back to the camper to get dry clothes! We have this state park on our list of vacation spots now!! (The picture of Gunner sitting on the beach is still on the camera, which I can't find. I will add it when I find it. :) )

Thanksgiving week started off with a bang! Monday morning, just as we were getting Caitlyn out the door for school, it started to snow! That was the only day Caitlyn went to school that week! Tuesday and Wednesday were both snow days!! Thankfully we have a wonderful gal who the state pays to come help out with Caitlyn. She was able to help entertain, and give me an adult to talk to!! Here is both kids Tuesday morning watching Ice Age while playing with the stacking rings...See, they both play with them the same way..That must be the right way...Who knows what the white pole that they came with is for!

Tuesday in never got above about 22 degrees F! Wednesday was a tad warmer, getting up to about 27 I think. Caitlyn's caregiver and I ventured out with the kids to Costco. Now that's a crazy place the day before Thanksgiving!! When we got back, I had to get a quick picture of Gunner in the snow...It was is first snow fall, of course! He has been fighting a cold, so we just stayed out long enough for a picture.

and now for a mommy update! In the middle of June, I decided is was time to get back to taking care of me, and signed back up for Weightwatchers. I was doing it when I got pregnant with Gunner and had to stop. I have watched through the years as my sister has done Weight Watchers, and made it goal weight. I knew from the past that as long as I stuck with it, I would lose. Well, I have had some up's and down's. Today was a high day though! I surpassed 10% loss of my starting weight! I have lost just over 26 lbs since starting ww. That is the last 5 lbs of my pregnancy weight, plus 21 extra lbs! The process takes such dedication, but I know that in the end I will be so glad!!! I am on a journey to a healthier, happier me; a mom that can keep up with her energetic children!

October is Rett Syndrome Awareness Month

2010-10-03T22:13:00.000-07:00

Sometimes along the journey we call life, we are hit with unexpected bumps in the road. Bumps in the road can test us to our limits, and sometimes leave us wondering "Why me?" When I gave birth to a baby girl in August of 2003, I was a new mom expecting smooth sailing. Caitlyn Theresa, we called her. She was the perfect baby. She never cried, she slept through the night by 6 weeks, she never had any kind of separating anxiety..did I say she never cried? She was everything I had expected motherhood to be!

Nothing changed over night. I wonder how that would have changed how I felt about it all. In Rett Syndrome, there is a period of typical development for the first 6-18 months. Then things start to change. Caitlyn followed that pattern. She developed at the later end of typical for her large motors, sitting at 8 months, crawling at 10 months, and walking at 18 months. At one year old, she was curious. She said a few words, and was beginning to develop an absolute love for coloring! She would hold the markers and get right down by the paper, and color these beautiful age appropriate lines.

Around 15 months, stuff started to change. Looking back, I remember how quiet she got. No

words, not even babbling! She also got pretty sick, so we weren't too worried about the lack of language development. At about 20 months, she started Early Intervention services at the Birth-3 center. She had wonderful loving therapists on her team. She wasn't making any progress in speech therapy and she had started to "tremor". We took her to see a neurologist. They wanted to first test her for Rett Syndrome and Fragile X to rule them out before going further in the journey to find what was wrong.

One of the hallmark characteristics of Rett Syndrome is the involuntary hand movements. So I figured we didn't have to worry. I read everything I could about Rett Syndrome, and knew it wasn't my daughter...Two weeks later, I had read everything about Rett Syndrome, and knew it WAS my daughter! Within two weeks she started tapping her hands together, and tapping her chest. On January 27, we found out what we already knew. Caitlyn had Rett Syndrome.

You can read back here about the bumps Rett Syndrome has brought to our lives. Times have been down right difficult, and times have been exciting and happy! The more we live our journey with Rett Syndrome, the more we come to really realize that Rett Syndrome is just a small part of who Caitlyn is. Today she is a happy 7 yr old full of energy! She loves hanging out with friends during lunch and recess. She gets excited to try new things, and go places with mom or dad. (even more so when she has mom/dad all to herself!)

Through the journey of a bump in the road, you learn to deal...I once heard it said "If you can't get out of it, get into it." Two years ago I hit a high point in our journey. I realized although Rett Syndrome sucks, it has touched my life in amazing ways. Here I talked about the ways Rett has touched my life. Today I learn Rett Syndrome has also prepared me for being the mother of a typical child. I cherish every little thing my son does. Things that many parents may take for granted, or even be bugged by. I love the messy meal times...I love the crying when hungry.

I have dived head first into the world of disability. I come from a political family, and was so sure while growing up that I would never enter into that life. I didn't like being in the spot light, and I still don't. I have realized that my role as an advocate is pretty political. I took on the role as Regional Rep in Washington for IRSF, then I took a position on the Board of Directors for the Arc of Washington. I can't get out of the world of disability, so I jump in feet first and change the things I can. I fight every day to make the life Caitlyn leads the best it can be!

Wondering about what Rett Syndrome is? Read my Rett Syndrome awareness post from 2008. For more information, or to donate to Rett Syndrome research, visit http://www.rettsyndrome.org/

Explaining my kid to your kid

2010-09-14T10:50:00.000-07:00

I just typed this in an email to Caitlyn's new teacher as a way to introduce her to her gen-ed class when she starts in there. When I re-read it, I thought "I gotta share this!" For Caitlyn, her lack of hand control is her biggest social limitation...Hope someone else can use this!!

Tell your child to raise their hand, or stomp their feet. This is a physical action that they can do with little or no thought: an automatic response. Then explain that Caitlyn has to think very very hard to raise her hand or stomp her feet, and sometimes the message gets confused between her brain and her arm/leg. That is why sometimes she might not be very gentle, or might pull your hair. She isn't trying to be mean, her arm/hand/leg just didn't understand what her brain said. If they have every played telephone, you can remind them of how different the message is by the time it gets to the last person. That is kind of how Caitlyn's body works. Her brain knows what it wants the rest of the body to do, but the rest of the body doesn't always listen.

You will see that she puts her hands in her mouth a lot. She doesn't want to, and she would stop if she could. The problem is that her hands just don't listen to her brain! Sometimes you might see her wearing braces that kind of look like casts on her arms. This is to help her brain focus on something other than telling her hands to stop.

Caitlyn loves hanging out with friends! She likes to play out side! She laughs when it rains Ice Cream on "Cloudy With a Chance of Meatballs." She is more like you then she is different from you. She even gets mad if I don't do her hair the right way, or put the right clothes on her!

Long-winded princess update

2010-07-15T22:30:00.000-07:00

I have read on other blogs that people some times get shot down for being too honest. I guess others find it depressing. Well, I take pride in my honesty on my blog. I'm not about to sugar coat the life I live. Who would I be kidding? There are beautiful ups, and down right nasty downs. Every day is a challenge, and we never have a clue what the day will bring. Will it be a day full of seizures, or a calm relaxing day? What good would it be to a family that might find my blog for the first time if it was all rosy and happy? When Caitlyn was diagnosed, I felt better knowing I wasn't the only one who thought it SUCKED!! Well, just a warning...it has been a long summer already, so this update might not be all happy.

Let's start with a picture...

I took this the other day after Caitlyn got home from school. It was a rare day that Gunner was asleep, and we got a private 1:1 momma daughter moment. I do love her dearly. As my mom tells me...She will always be my baby. Even as we look forward to celebrating her 7th birthday in a couple of weeks, she is my baby!

Updates, in no particular order:

Caitlyn is doing AWESOME in school!!! She really took off about mid year. She is recognizing all the letters in her name, numbers 1-5, and identifying many objects. We know she knows WAY more than this, but these just happen to be some of her "goals." Parents of a non-verbal child get what I mean. She gets so bored with the drilling, that she often refuses to show us what she knows!

She has mastered a yes/no system! This is so huge for us! She taught me a lesson the other morning. When Caitlyn says "no" I don't want to get dressed for school AND says "no" I'm not done on the toilet, I should listen. Time to slow down, and let her have control of the morning, I guess. Giving her a little control sure beats cleaning the carpet! We can say "do you want strawberry ice cream? yes or no?" and she will indicate "yes." She doesn't say yes for every flavor, strawberry seems to be a favorite

We have wonderful seizure control! We do still see the occasional seizure from time to time, but for the most part her meds are keeping her stable. We have been lucky in that her lack of appetite is the only side effect of meds that we have ever seen. When she first started seizure meds 4 years ago, her neuro said it may slow her down a little...I'm still waiting!

Caitlyn is headed to a new school next year. Rather than have two life skills classrooms at one school, the district has decided to have one at two different schools. We were originally supposed to stay where we are, but made a very difficult decision. We fought so hard to have our little girl in a gen ed environment and interacting with her peers, that it was really hard to move her away from that. The reason was pure safety. In the life skills classroom at her current school, she would have been the only child unable to defend his/her self. There are a few aggressive children in there, and I felt like all independence would be gone. She does have a 1:1, but we strive to have her be as independent as possible. I think we made the right choice, but only time will tell. She was going to have a new teacher anyways.

She seems completely in love with her baby brother! most of the time...She does smack him on the head, but also gives him kisses. She has began to notice that he watches her, and loves acting silly for him.

Hate is a strong word...I don't know when it is ever really appropriate. But I have to tell you, I do hate Rett Syndrome. I hate what it has taken from my girl. I hate that she doesn't have a voice. I hate that she can't control the strength of her touches. I don't like worrying about the next day. I go through these phases where I get really down and just cry. I want so badly for her to be better. I want to be able to hear her say "I love you mommy" or even say "can we take him back now?" Some days are just hard....

I have to say, Caitlyn has had a very typical response to Gunner being here. She loves him, gets a little jealous, and has now started acting out for attention. This is such a struggle to deal with. Do we even know if she gets it when we put her in her room for a "time out?" She laughs and giggles, then returns to her new found attention getter..hitting and pinching. A never ending battle.

See? ups and downs...today was a big down, please let tomorrow be a happy up!

A Car seat growth comparison

2010-07-12T15:39:00.000-07:00

Here is a look at how much my baby has grown...

Here he is on the way home from the hospital

This one is just shy of 1 month oldAnd here he is just after turning 2 months!

Stay tuned, he'll be 3 months old in 3 days!!

A long time coming...our addition

2010-07-12T14:06:00.000-07:00

Wow, where has time gone? We were without internet for a few months, but are back now!! So much has happened since last I posted!! First, the biggest even occurred on April 15th. No, filing income taxes was not the highlight of the last 8 months! At 7:30 pm on April 15, 2010 we became a family of 4. We welcomed to our home Gunner Thor Christofferson.

His arrival was mostly uneventful. I started having contractions the Saturday before he was born. They would go every 5 minutes for about 40 minutes, then stop for a couple of hours. On Monday, my doctor checked me and nothing had changed! Wednesday April 14th, I went in for my weekly NST, to monitor his heart rate. He was having some dips, so they kept me for induction. It was a slow process. I was admitted, and pitocin began at about 10pm. They had to shut it off early in the morning, because the baby was struggling a little. After shift change, my new nurse at 7am figured out that Gunner's heart rate dips were related to my position during contractions. Once we figured this out, we were able to begin the pitocin again. I went from 0 cm at 7:30 am, to 3cm at 9am. Then, nothing changed. At 3:00, they came in and broke my water, and I was about 4cm by then. By 3:30 I was ready for an epidural. It was put in, though never fully worked. I went from 4 cm at 3:30, to 10 cm at 7pm! I felt way more with this delivery than with Caitlyn! It was amazing...Gunner was put on my chest immediately. I don't think I took a breath until I heard him breath. He is perfect! He was 8lbs 2 oz, 20 inches.

When we came home, Caitlyn seemed excited. It was all new, people were coming over to see the baby. Everything was going well. On the evening of April 25, at 10 days old, Gunner became unresponsive and lethargic. Prior to this, a simple diaper change would wake him up. Given our experiences with Caitlyn, we didn't mess around. We were scared, to say the least. I sat in the bedroom with him, crying, while Eric called 911. They decided it best to transport him to the hospital. He slowly began to improve. They did blood and urine cultures. Nothing showed up. The on-call ped felt that the event was neurological in origin, and ordered a CT scan. Thank God, that was clean! They decided to admit him for observation. As we were waiting for a bed to be available, I layed on the ER bed holding my sleeping baby. The oxygen monitors kept alarming as his levels would dip. They ordered a chest x-ray. It too, was clean. I guess the way I held him constricted his air way. We may never know exactly what happened on that day. We suspect it may have been a seizure, or a simple blood sugar drop that he recovered from. What we do know is that he is healthy and well, and nothing has happened since!

Wow...a really bad blogger!!!

2009-11-20T20:04:00.000-08:00

Caitlyn's school picture--2009

I can not believe it has been almost 4 months since I last wrote!! It has been a whirlwind!!

The school year started out really rough for us this year. I will spare you the details, but let's just say it wasn't pretty, and we fought like the dickens for our little girl. In the end, we seem to be one step ahead. If you are a parent of a child with special needs, I urge you to learn your rights, and learn your daughters rights. It is my feeling that school personnel assume parents don't have a clue! We have to all unite and prove them wrong!!

Caitlyn got her first cold of the season in October, and I'm happy to announce that with the aide of the 7 lbs she has put on, she pulled through the cold like a pro!! Getting a G-tube was a tough decision for our family to make. In the end, we had to make a decision based on what was best for Caitlyn's health, and our families quality of life. I am sooo glad we made the decision to go ahead with it!!!

Since my last post, we found out some very exciting news!!! At the end of April, Caitlyn is going to be a big sister!!! We are nervous, but excited to be adding to our family! Caitlyn seems excited when we tell her about it, as long as we don't bring up her having to share her room...She gets a little upset about that!

I promise to try and update more often!!

Bad Blogger

2009-08-09T17:44:00.000-07:00

Well I sure feel like a bad blogger...Today is August 9th, and it has been a month since my last post. A lot has happened...where shall I begin?

Caitlyn had her G-tube put in on July 10th. She did great, and handled it like a pro! I didn't do too bad, either. This huge life altering event was hard to do...I struggled sooo much with this decision. We have been feeding Caitlyn with the tube for just over 3 weeks now...She gets 1000 calories of formula throughout the day, plus whatever she eats orally. I am happy to report that in those 3 weeks, Caitlyn has gained about 2 lbs!!! I doubted if we were doing the right thing, but now I know we did! The stress on our family has significantly dropped during meal time! The first change I noticed even before weighing her was that her sunken eyes are gone!! She is fully hydrated!

On July 17th, just one week after her surgery, we had the opportunity to go to the Wiggles concert!!! A wonderful man that lives by as works at the arena, and gave us tickets. When Eric thanked him, explaining that Caitlyn had just had surgery a week before, and this was her first outing, and it meant the world to her, the man must have been moved. He is getting us circus tickets, and tickets for a couple of other kids shows this fall!! How wonderful!

We are hoping that school will start on September 8th, without any issues. Our school district contract is up, and we are waiting for news of a start date, and settled contract. My baby needs to get back to school...We pray that both parties realize these are trying times, and settle quickly so that the students can all get to school on time!!

This past weekend we had an AMAZING time at camp Prime Time. This camp is soooo cool!!! We attended two nights away from home with other families from our county at no cost to us. We had to pay a $20 deposit, and had the option of getting it back, or donating it! What a wonderful experience it was!! I am hoping to register a weekend for Rett Families for next summer!!! The picture up top is of Caitlyn enjoying the ride around the lake in the camp's boat!! Sooo much fun!

Caitlyn's Surgery

2009-07-10T18:57:00.000-07:00

Just a quick update to let everyone know that Caitlyn is resting in her hospital room after her surgery this morning. Everything is going ok so far. I will post more in detail when I am able too. Thanks for all of the prayers.

One step closer

2009-06-11T20:11:00.000-07:00

Caitlyn was a pro today!! She had her Upper GI study done, and didn't fight it at all. She refluxed twice during the study, but the doctor said there doesn't appear to be any damage from the reflux! Thank God! So, unless we hear otherwise, it sounds like we have the go-ahead for surgery on July 10th and it will NOT include a Fundo procedure.

As the day approaches, it is getting a little easier. After tomorrow, there is one more week of school. After that, I start work at summer camp and Caitlyn heads to daycare. It will be nice to have a couple of fast pace weeks before surgery!

If you are local, I'm sure Caitlyn would LOVE visitors while she is in the hospital. We are hoping to only be in one night, but will update more as we know it! Thanks to everyone for all the love and support.

Surgery is scheduled...July 10th

2009-06-06T19:56:00.000-07:00

I just had to start off this post with this picture of a very sweet looking Caitlyn...Isn't she beautiful? I love my girl!!

Eric and I told Caitlyn on Tuesday for a consult with her surgeon. He was wonderful! We really like him, and that will make this all that much easier! He talked to us about the surgery, and what it would involve. We talked about her reflux, and discussed if we wanted to have a fundo done at the same time. He told us that with the increased volume in stuff going into her stomach, her reflux could increase. We all agreed that since she is only on the Prevacid once a day, there is still room to increase that dosage if needed, and we declined having the fundo done! (soooo thankful to those before us that have shared their experiences!!) Caitlyn will hopefully only be in the hospital over night. She must be eating and drinking the same as before surgery in order to go home. The feeding tube will be in, but we wont use it for about 7 days.

Caitlyn will have a bard feeding button placed during surgery. Her surgeon prefers the Mic-Key button overall, but likes to put the bard in to start with. The reason is, it is harder to pull out. If something should happen, and her tube came out, we would have less than 2 hours to get her into the hospital to have it replaced before the hole closed up. We will go in after three months to have the tube replaced, and we can switch to the Mic-Key at that time if we'd like. While under for surgery, Caitlyn will also have an umbilical hernia repaired. On top of that, we will take advantage of her still state to have dental x-rays done! It will be a big day and change our lives forever, but I'm sure it is for the best. Our hope is that Caitlyn will continue to eat for enjoyment. On those days when she just wont do it, the tube will do it for her...

I appreciate everyones comments, thoughts and prayers while we go through this. I am doing ok...well, that is until someone asks how I am doing. This is an incredibly hard decision to make for Caitlyn. I know in my head that once it is over, I will be fine...I know this is what she needs. Until then, I feel like I have failed at the very thing I have be given to do. Feeding your child should be the simplest of tasks, and I can't do it...I can't get my own child to eat enough to sustain, let alone gain weight. So, I love the support and I love that we have such caring family and friends...But if you ask how I'm doing with this decision, please consider having a tissue handy...I just might cry...

The announcement I never wanted to make...

2009-05-15T22:08:00.000-07:00

In late March, I posted about Caitlyns struggles with weight, and what was to come next. So, in the past few weeks we have had a floroscopic swallow study done, and met with the Nutritionist.

First the swallow study...In that post about her weight issues, I said we didn't expect anything more than an immature swallow to show up on test....Well, I was wrong. Caitlyn's feeding study showed silent micro aspiration caused by a delayed swallow. A break down: Silent-meaning there was no gagging or coughing to clear the liquids from where they didn't belong; micro aspiration-a small amount of liquid was going into her airway; delayed swallow-Caitlyn would pool her thin liquids in the back of her throat before swallowing, instead of swallowing more often...Then after the liquids pool, she would swallow causing the micro amount of liquid to go into her airway. So we went into that appointment not expecting anything...We came out with orders to thicken all liquids to a nectar consistency...

We continue to struggle from day to day with feeding...Dinner seems to be our biggest struggle...With dinner, we have 6 pills that Caitlyn has to take...Some nights it is such a fight that we both end up crying in the end...Eric and I have discussed a lot what options we have...The constant fighting and forcing of food has become a huge quality of life issues. So yesterday Caitlyn and I drove down to Children's hospital with our 3 day diet log to meet with the nutritionist. We talked about everything, and she looked at the diet. She said we were doing all the right things to add calories. That felt good to hear. It is nice to know you are doing what can be done...Yesterday Caitlyn weighed in at 40 1/2 lbs, and is 3 feet 11inches. This plotted her with a BMI of 2%. A child is said to be underweight with a BMI of 5% or less. It is of no surprise that Caitlyn is underweight...

So, after going through all of the pros and cons to all of the decisions, we have come to one...We didn't come by it lightly...It took a lot of discussion, but Eric and I have decided, with the support of the nutritionist and her Ped, that we are going to begin the process to have a G-tube placed. It is not for the convenience, it is for the sanity...It is for the peace of mind of knowing that she will get her meds ever night with out a fight...It is for those nights that she is exhausted after a day of seizures, and just doesn't want to eat...It is for next year and every year after when she gets sick...We will never again have to fight through drink after drink to keep her hydrated through illness...I'm scared and terrified and a little sad that this is the decision to be made...But am also hopeful for the future...

Some good and some bad

2009-04-09T20:54:00.000-07:00

Of course we should start with the good!!!!!! I can't believe I never posted this...Caitlyn's school progress report came out in early March...Now, she has been on an IEP for nearly 3 years now and has NEVER met a goal. We have seen a lot of "making progress but goal not yet met," or "expected to meet by end of period" and then never meeting it...Well, I am soooo pleased to tell everyone that Caitlyn met her first two goals!!! They are both simple self help goals. One is eating from a loaded fork, which she is doing wonderfully well with! Now, if only we can get her to not throw the fork across the room after taking the bite...Do they sell weighted forks anywhere? The other goal is putting her tray away after lunch. It think this goals is significantly adapted to look something like Caitlyn walking a couple of steps to a bin at the end of her table, and it being done with a considerable amount of support to direct the tray where it needs to go, but she gets it! And they are accepting the process as meeting the goal, because it is obvious by her eye gaze that she gets the instruction, just needs help with the motor planning to complete the process.

I don't know if I posted on this yet...I was kind of waiting until we received it so I could post pictures...The school district is getting us a child specific weighted blanket to help facilitate with communication! It is amazing have fast that pressure pulls Caitlyn out of a melt down, and allows her to communicate what she needs!!

Now a little bit of not so good news...We seem to be dealing with an increase in seizures. It is so frustrating to see, when we just added a new med! I know that it is most likely because she is not to a therapeutic level on the Depakote yet. I really hope it isn't in fact the addition of the Depakote! She was reported to have a few yesterday, and she had one today. They do continue to be short, but scary when she is standing. I am afraid she is going to fall one of these days...

Ok...Caitlyn's kindergarten class is going on a field trip soon. We are hoping to find a way for Caitlyn to be included for this field trip, but it is a lot of walking on uneven ground at a nature place...I wonder how the Maclaren would do off roading...Or maybe the school district would have a chair she could use...I just don't want her to miss out on all the fresh air! She'd love it!

Caitlyn's first Easter Egg hunt

2009-04-04T16:13:00.001-07:00

We had such an amazing afternoon! We took Caitlyn to her first Easter egg hunt. It was held at a storage unit complex! The gal that is manager at the building has a grandson with special needs, and she remembers there never being a place for him to go for egg hunts. So she decided to change that this year! Caitlyn got her picture taken with the Easter bunny, then they give you a list of about 15 units. They took us upstairs and we went to all the units on the list. The kids got to open the storage unit door, and in the back of each unit was an Easter basket with eggs. She got to go in all the units and pick an egg out of the basket! It was so much fun!! So, I took some pictures to share!

Caitlyn and the bunny. That is Eric's arm holding her in the picture.

These next two kinda show how Eric would hold up the basket for Caitlyn to take an egg out. She would pick an egg, hold it for a second or two then drop it. She had fun! Next to her in the first picture is Alex (aka Bear) and his mom Serena. Alex liked to find an egg that shook, take out the candy, and politely put the egg back...So it appears we ended up with a couple empty eggs! He has Autism, and did an AWESOME job following the group and picking out his eggs! Way to go Alex!!

These next two, it was Caitlyn's turn to open the storage unit door! This is my friend Dora helping Caitlyn open the door. (that is her son Jackson next to Caitlyn)

And here we have Caitlyn leading the group in to the unit! I think Jackson is to the side of her. Behind her are (from left to right): Crystal's girls Alana and Kaila, and Dora's youngest Timmy.

Dora, Crystal, Serena and I all got to know each other because of something that none of us asked for. We all have a child with special needs. None of us asked to be part of this club, but through the Arc of Snohomish County's Mother's Network we have gotten to know each other, along with several other women, and become great friends! The ladies of the Arc of SnoCo's MN Rock!!!!!

The Reason I Get Up Each Day

2009-03-30T14:41:00.001-07:00

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

2009-03-25T10:05:00.001-07:00

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?

2009-03-24T12:31:00.000-07:00

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

2009-03-17T11:08:00.001-07:00

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

2009-02-13T10:02:00.000-08:00

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

2009-01-30T10:51:00.000-08:00

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

2009-01-27T12:28:00.000-08:00

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?

2009-01-22T20:25:00.000-08:00

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?

2009-01-19T19:42:00.000-08:00

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

2008-12-30T16:19:00.000-08:00

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!!

2008-12-24T22:01:00.000-08:00

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

2008-12-09T20:34:00.000-08:00

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?

2008-12-08T20:00:00.000-08:00

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

2008-12-07T15:05:00.001-08:00

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

2008-11-27T10:09:00.000-08:00

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

2008-11-17T11:13:00.000-08:00

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!

2008-11-07T11:47:00.000-08:00

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...

2008-11-05T14:17:00.000-08:00

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

2008-11-01T14:08:00.000-07:00

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

2008-10-30T20:51:00.001-07:00

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.

Anger and other feelings

2008-10-29T10:30:00.000-07:00

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.

Important meetings in the next couple of weeks.

2008-10-25T16:48:00.000-07:00

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!

Pure Joy at the Park

2008-10-19T13:33:00.000-07:00

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!

"Your Daughter Threw Up"

2008-10-16T16:48:00.000-07:00

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!

Caitlyn isn't disabled!

2008-10-08T13:03:00.001-07:00

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...

Just a picture to start off the week

2008-10-05T17:39:00.000-07:00

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!

The Good Side of a Monster

2008-10-02T09:33:00.000-07:00

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.

October is Rett Syndrome Awareness Month!!!

2008-10-01T09:30:00.000-07:00

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.

Are you ready for October? I am!!!

2008-09-30T19:07:00.001-07:00

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?

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

2008-09-28T21:59:00.000-07:00

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...

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

2008-09-23T20:02:00.000-07:00

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!

To All Blogging Rett Parents

2008-09-21T20:52:00.000-07:00

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!

another update

2008-09-20T19:48:00.000-07:00

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...

We're BACK!!!!

2008-09-12T13:44:00.000-07:00

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!

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

2008-09-04T13:57:00.001-07:00

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!

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

2008-09-02T13:16:00.000-07:00

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.

Life Skills...

2008-08-19T20:56:00.000-07:00

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.

We Haven't Completely Gone Away

2008-08-11T13:00:00.001-07:00

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!

Last Day...

2008-07-31T11:28:00.000-07:00

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!

BLAH

2008-07-21T13:41:00.000-07:00

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!

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

2008-07-10T22:49:00.000-07:00

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...

New Scrapbooking page

2008-07-09T13:33:00.000-07:00

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."

Mother Daughter fun...typical style!

2008-07-08T10:54:00.000-07:00

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!

Dental Scare

2008-07-07T16:54:00.000-07:00

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...

2008-07-07T15:35:00.001-07:00

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!)

Dancing

2008-07-05T21:06:00.000-07:00

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

2008-07-05T14:55:00.000-07:00

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?!?!?)

Super cute Caitlyn stories!!

2008-07-02T16:29:00.000-07:00

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!

Deeply Touching

2008-07-01T00:26:00.000-07:00

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...)

Social Security meeting today-update

2008-06-30T11:09:00.000-07:00

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!!!

The Fork

2008-06-27T13:27:00.000-07:00

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.

Chewlry, Neurology and school

2008-06-24T22:15:00.001-07:00

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!

In My Daughter's Eyes

2008-06-20T19:43:00.000-07:00

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

A quick school update

2008-06-19T14:56:00.001-07:00

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

2008-06-19T00:55:00.000-07:00

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.)

A fun long weekend-and a book

2008-06-08T13:46:00.000-07:00

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.

A couple sweet stories to share

2008-06-01T12:45:00.000-07:00

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!!

She Drank IT!!!!!!!

2008-05-31T14:33:00.001-07:00

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!

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

2008-05-30T15:38:00.000-07:00

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.

Kindergarten Update

2008-05-28T09:55:00.000-07:00

I know everyone is probably waiting for an update from the conference, but Kindergarten is on my mind so that is going to be first. (I'm sure this will have reference to the conference)

Earlier in the year when we discussed kindergarten with Caitlyn's preschool teacher, he gave us our three options (dk, self contained, or general ed with an aide) and we chose general ed with an aide. He said he would support us in what ever decisions we made. Fast forward to May 20th. (IEP day) He makes no reference in the IEP to this placement decision, and he left the meeting before we were done! (why do they schedule them so close together?) Luckly the placement that is in there is for the current year. It was overall a very stressful meeting. He told us that he couldn't give Caitlyn credit for the things [we know she knows] because she isn't consistant. (A friend of mine said that is the most consistant thing about our girls..that they're not consistant!) So I left that meeting feeling pretty down about everything. The conference really helped me realize that even though her teachers may say things like this, she really is learning. She really really is!!!

Jump back a couple weeks before this, and let me tell you about our brief [unofficial] meeting we had with the school psychologist at the new school. I told her what we wanted to see happen, and she said that an aide in the classroom made the environment no longer the least restrictive. We told her that we wanted Caitlyn at our home school and she said (with a bit of attitude) that she wouldn't necessarily go there, it depended on where the program was she needed. I told her we wanted her in general ed. She then went into this big schpeel trying to 'sell' the idea of self contained to us, because that's not what they call it. It's academic support and the kids spend their non-academic times in the general ed classroom. I walked out of that meeting reminding myself that academics can be adapted within the general classroom. I know we will have a fight on our hands, and this is just the beginning. I'm sure by the time September comes around that psychologist wont want to see me...ever...

So that brings us to today. I think that the conference really gave me the strength to make this fight. My daughter deserves an education equal to that of any other child in the district. So today I called the psychologist and told her we needed to meet to discuss the placement. and my exact words were "It is our intention that she will be educated at her home school in a general ed classroom as the least restrictive environment per IDEA." I'm sure she'll be super eager to call me back....

I will continue to update when something new happens...But for now that's everything on the education front...

Something exciting I learned at the conference is that my daughter is all there. I have a new found energy to communicate with her. She picks her shirts in the morning (from 2-3 pre-approved by mommy), what flavor oatmeal she wants, what she wants with the oatmeal and what kind of sandwhich I should make for her lunch. She seems to have such joy from making these choices...momma and daddy are finally starting to figure her out, and she loves it!

Chicago was wonderful

2008-05-26T23:07:00.000-07:00

I had a wonderful weekend and it was so neat to meet so many different families! I'm so happy I got to meet all of the wonderful mom's who's blogs I read. (I will update my list of Rett girls soon, I promise!) The weekend was full of information, but I'm not quite done processing it all...So until this tired momma gets it all processed in her head, I'm going to leave you with a picture that my wonderful husband sent me while I was in Chicago. This is now my favorite picture of Caitlyn. She is such an angel, and apparently she wouldn't sleep last night because daddy told her they were going to pick mommy up the next day! It gives a momma a sense of pleasure to know their daughters truly show they missed them, or show excitement to see them. (You rett momma's know what I mean...They are aware....so very aware)

Chicago is here!!!!!

2008-05-23T05:53:00.001-07:00

I leave for the airport in about 20 minutes!!!!

This is HUGE!!!!!

2008-05-18T13:23:00.001-07:00

I decided this time the Chicago Count Down needed a new post.

5 DAYS UNTIL CHICAGO!!!!

I should find out what the weather will be like so I can pack!

Chicago Countdown!!! (We're in Single digits now!!!)

2008-05-10T11:10:00.000-07:00

To all those other moms and dads(and grandma's) that I'm so excited to meet in Chicago.......

7 DAYS (not counting current day) or

1 WEEK

A common bond

2008-05-02T16:39:00.000-07:00

I saw this on another blog...We are bonded together no matter what the special needs are our child may have.

To You, My Sisters (and Brothers!)
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Our Rett Syndrome Clinic visit

2008-05-02T16:27:00.000-07:00

Here is the overview of our appointment...I have to add that I bought Caitlyn 4 of these talking picture frames to use as simple communicators throughout the house. If you are interested, here are the instructions on how to adapt them into communicators.

There is an amazing doctor at Legacy Emmanuel Children's hospital that is very familiar with Rett Syndrome. We went down this week to see her, a speech therapist and a physical therapist. They all said she looks great.
Speech therapist report: Caitlyn seems very eager to communicate. She had the opportunity to try out a computer that had a touch screen on it. There were two different colored boxes on the screen and one had a sunshine hiding behind it (you could see a little bit of it). Eric asked Caitlyn to touch the sunshine. She touched the box it was behind. the sunshine rose and then set behind the other box. Again Eric asked her to find the sunshine. and she did again!!! She used a little mac switch to ask for more crackers. It is just amazing! The therapist said she sat in front of that computer and used it like she had always used it! Then we were able to try out a TANGO communicator but Caitlyn was too tired to do anything with it. But I sure liked it! Here are a couple of links to it. http://www.blink-twice.com/tango/u_videos.html?all=1# This link has some videos. If you scroll down to the bottom, there is actually a video of a girl with Rett Syndrome using it. http://www.spectronicsinoz.com/product.asp?product=24191 this link tells more about it. The therapist is going to talk to a vendor so that when we go back in October, we can have more things to try.

Physical Therapist report: She is doing great! We need to make her wear her braces more often. They said her heels can get tighter, so we have to be proactive with it all. We also need to find a therapist outside of school that will follow her and check her spine (she is at high risk for scoliosis) and hips.

Medically Speaking: They agree that it seems as though Caitlyn's repeated sinus infections is in fact Reflux. During the night it seems that she was refluxing into her sinus cavity and causing infections. So she will remain on Prevacid for now. She weighed 37lbs and was nearly 43 1/2 inches tall! We are in the process of evaluating if we want to try a low dose ADHD medication for school. We will talk more about that with her normal ped.

I think that is about it. Overall it was a great appointment! Well worth driving 200 miles and staying in a hotel! It is nice to have doctors who know what Rett Syndrome is before we even get there! I hate educating doctors...I don't feel it is my job!

Chicago Countdown: 21 days until takeoff!!

Warning: Angry mom of child with a disability

2008-04-29T15:31:00.000-07:00

I feel the need to get this out there today. To spread the word and hopefully make other parents aware and help them let go of their ignorance. As you know, we recently moved into a new school district. Our original plan for next year was that Caitlyn would attend a general education kindergarten classroom with an aide. We were excited about this, but going into our future talks with the new school district we were willing to be flexible. The reason we were willing to be flexible was because the new district had a development kindergarten option that the old district didn't. They had integrated classrooms with 8 typically developing students and 8 developmentally delayed (IEP) students. Now all those parents out there with children who are disabled, you know how exciting of a program this would be. Now I hope you are sitting and prepared for some shocking news...I found out from a friend who works for the district that this program would not be happening next year. I had assumed it was a funding thing, until I asked her why. Her answer: The parents of the typically developing children were fighting the program and didn't want their child in the class! Instead they want to turn our children into some sort of toy that the other kids get to play with for a few minutes each day. Somehow my child is supposed to enter society in the future being treated like an equal. Her peers are the children her age. These children are being taught by their PARENTS that my child is different and is not an equal. These PARENTS are depriving their children of the opportunity to learn some tolerance and acceptance. These PARENTS are depriving MY child of the opportunity to have THEIR child as a role model. I am angry and disgusted that the parents of the typically developing children want their child to live in a world that continues to be ignorant and excluding of people with disabilities.

My child does not talk and she may have trouble with her hands, but my God she is learning! Her brain is all there, and she hears the things you say and she understands. If anyone from the new school district is reading this (probably not because I'm not so bold as to name the district) know that I will take this fight clear to mediation and due process to have my daughter receive the same education as the precious typical children in your district. She will be fully included. It is no longer my hope...It is my job to get her the education she deserves...

-Mom on a mission...beware

Moving, IEP's, Rett Clinics Oh My (and more)

2008-04-24T13:36:00.000-07:00

Hello. It has been awhile, but I am here to update now. We have been quite busy with our lives. First of all, we moved into our new apartment on April 12th. We are desperately hoping this is our last rental and we will be able to purchase a house in a couple of years. Although moving is a pain, let me just explain to you how much easier this move has made my life. At our old apartment, we were on the second floor. In the mornings, I would carry Caitlyns bag and my stuff in one hand, and pick her up under my other arm to go down the stairs. When we came home, as long as my bladder wasn't killing me (have you ever tried using a public restroom with a child who licks/chews on everything? Or tried to maneuver a special needs stroller through a non-handicap stall because some lady all by herself took the handicap one? nah, I'm better off just holding it!) Anyway, if I had the time, I'd make her do the stairs to save my back. And when I say, if I had the time I mean it would take her sometimes 10 minutes to go up. I guess it's hard to coordinate steps when you are holding your breath...have you ever tried? I'm sooo happy to say we now live on the bottom floor!!!! I don't have to carry her!!! (Except the past two days because she fell asleep in the car, which she never does anymore!) Another wonderful thing about our new home is that it is a disability accessible apartment!!! We have wheelchair width hallways and door ways and most cool of all is the HUGE bathroom!!! I can move around when I go in to help Caitlyn! It is incredible! I am already feeling the relief of no stairs on my back.

Unfortunately we weren't able to remain in the same school district. We are nervous and excited all at the same time. Our wonderful teacher this year has agreed to pretend he doesn't know we moved. We will continue driving Caitlyn to school until the end of the year. I went to start registration for her knew district. We don't know yet what sort of class Caitlyn will be in. We are hopeful that we can still get her in a general ed classroom with a 1:1 aide. Her IEP will be done in our current district before the end of the year, so luckily it will hold documentation and recommendations for placement in Kindergarten. If we end up having a fight for general ed, we are willing to settle for a Developmental Kindergarten class that is integrated at a rate of 8:8. There is a huge exciting factor to the new school district!!! They have an Assisted Technology Team!!! This is the team that would handle all of the things like communication and switches and such...We are just so excited that we will have that support. The old district has always been a little scared of technology...I just can't wait to have support in find a "voice" for my daughter!

Next week we have a very exciting appointment!!! We are going to meet a team of doctors that we don't have to spend the first 15 minutes explaining what Rett Syndrome is!! They already know what Rett Syndrome is!!! We will be able to ask them all of our questions, and get the answers we need from people who really know Rett Syndrome. Our appointment is Thursday morning, and the lady from the office told me this week that there is no appointment after ours, so we have 2-3 hours to ask everything we need to and have Caitlyn fully evaluated! I will be sure the update everyone when we get back.

As soon as I find which box my camera is in, I will be sure to get some new pictures of Caitlyn.

And my most exciting news is that I leave for Chicago in 29 days!!! I am going all by myself to attend the International Rett Syndrome Foundations Conference!! I'm sooooo excited!!!

Now What...

2008-04-10T09:27:00.000-07:00

This picture really doesn't do the "rash" justice. But I wanted to put it out here for other families incase they see something similar on the faces of their daughters with Rett Syndrome. The school made us take Caitlyn to the doctor to see if the rash on her face was Chicken pox. The doctor said no it was not, but diagnosed her with Folliculitis. The way her Ped. described it was what usually in children it is seen in the diaper area caused by moisture build up and friction. Well, when your daughter has Rett Syndrome and never has dry hands, and chronically rubs her face, you end up with this condition on the face! And once you have a few spots it spreads. Caitlyn looks like a poor teenager going through puberty. Because of the widespread of it all over her face, she is being treated orally. Hopefully it will clear up. It is very possible that this is what she had last June when we thought she had the chicken pox. I just wanted to let others know about this condition in case you see it too. It isn't chicken pox and it IS treatable!

[what you can't see in the picture is that Caitlyn and mommy are also fighting Strep throat.]

NEW WHEELS

2008-04-04T21:20:00.000-07:00

We are sooo happy to report that Caitlyn received her new wheels today. Thank you so much to Kaitlin's Mobility Foundation for giving us the grant to buy this wonderful stroller. She is so comfortable in it! We will head out to the mall over the weekend to try it out! We are preparing to move, and I'll update more about that later. Our next big purchase will be a new car seat...We are looking at this one or this one. We are also starting to look at some different hi-tech communication options. All I can say is, never take for granted that your child got their voice for free...When you start adding up the system and the software you get beyond $4,000. It is probably a couple years off. One step at a time. For now we are sitting pretty in our MacLaren Major Special Needs stroller

Inside the mind of a Young Women with Rett Syndrome

2008-04-01T13:57:00.001-07:00

Hello friends and family. I hope that everyone had a wonderful Easter. Ours was relaxing and enjoyable. Caitlyn and I are enjoying our week together, as she is on Spring break this week.

I am writing to tell you about an amazing blog I came across through a link on Brooklyn's. Karly is a young women with Rett Syndrome. She has her very own blog. She has the ability to type (haven't found out the hows yet) and she writes about some of her feelings. A quote off of her recent post says "When I was in elementary school the therapists and teachers were convinced I was functioning at an infantile level. It was painful to hear what they were presuming about me. I was so sad that none of them tried to give me a way to communicate with them." -Karly (click quote to access Karly's website)

Please take a minute to read more about what Karly shares with us. As we come in contact with Caitlyn, (and any other girls with Rett Syndrome) let's keep in mind that she hears everything we say. Let us all work at finding a successful way to communicate with our Rett Angels.

Another update

2008-03-22T21:09:00.000-07:00

So it was brought to my attention that I didn't update about Caitlyn after Sunday (thanks Kelly.) Caitlyn is doing much better. She is sleeping quite a bit but that may be due to the recent increase of her Seizure meds. We are just feeling so relieved that she was able to beat this on her own. We took her to the ER on Sunday after several episodes of her lips turning blue when she coughed. They checked her over, and said everything seemed fine. We were prepared to treat yet another sinus infection, and the doctor gave us the prescription but advised us to wait a few days. She said if it was bacteria the fever would not break on its own. Well, the fever broke and she continues to get a little better every day. I do believe this is the first time she has had just a cold!

A very Happy Easter to everyone.

update on Caitlyn

2008-03-16T10:41:00.000-07:00

Last night she peaked a fever of 102. It comes down with Tylenol and Motrin. We are waiting to hear from the nurse to see if we need to have her seen today, or if it can wait until tomorrow. Please pray for her...We are really afraid we have pneumonia on our hands. I will update when I know more.

My house is taken over by sickness...

2008-03-15T22:55:00.000-07:00

My poor baby is sick yet again. Last year we had antibiotics for sinus infections in August, October and December. Then a week after going back to school in January, it all started again. This time we did 25 days of antibiotics. And here we are again. Only this time I'm wondering if it is more of a chest bronchitis thing. She has a terrible cough, and very little energy. She will play hard for 5-10 minutes and then come looking for mommy or daddy for comfort. Even since birth she has had a terrible gag reflex (just like mommy) so that when she gets into a big coughing fit, she throws up. It is so terrifying that I can't sleep. She will throw up in her sleep during a coughing fit, and just roll right through it not even waking up. I'm scared that she could choke on it. (I guess we are lucky she didn't have the energy to eat much for dinner...hopefully there is nothing to throw up) The poor thing just seems so weak. Luckily she will drink water, so we are keeping her hydrated. But you all know that Caitlyn can't really afford to lose the weight from not eating. Please pray that she gets her energy back and can fight this without having to do more antibiotics. I worry about the long term effects after soooo many cycles on them. I'm off to try and get a little rest. I hope we have a quiet night tonight.

A whole month

2008-03-11T19:15:00.000-07:00

I can't believe it has been a whole month since I posted. I should really post more often. Let's see...

We went and saw the neurologist last week. He thinks that maybe our medication increases have been too conservative. We keep getting control only to lose it again. So, we have been raised up to 200mg of Zonegran once daily. Hopefully this increase will do the job. If we lose control again, we will have to add another medication into the mix. We have been soooo fortunate to have no side effects with the Zonegran. It makes adding another medication into the mix kind of scary. Hopefully we will do ok with this increase.

I am so excited to tell everyone that I am going to be able to go to the International Rett Syndrome Conference in May, in Chicago. I'm very excited. The waiting is hard, but will be well worth it, I'm sure. Then of course in August we will all be going to the North West Conference. This year we only have to drive to Federal Way (about 1 hour.) If you've been around awhile, you'll remember our very first NW Conference in Portland two years ago. The train ride home was not pleasant. Last year we went to Seaside, OR and my mom drove. This will be nice to just go to Federal Way.

We continue to make choices for Caitlyn regarding what will happen next year. We have decided to pay the higher rent where we are and not move. This means that Caitlyn will go to a school that has free full time kindergarten! We are excited for that, but must decide now if we want her sent across the district three days a week for an extended day class for kids with Autism Spectrum Disorders. She is in this class for preschool this year and we like it, but it is just the next room over. If we did it next year, she would be pulled out of her full day kindergarten class and bused across district for the ASD class. I know that we will probably have to deal with her being teased at some point, but I want to do what I can to limit the opportunity. We are leaning towards not doing the ASD class because having her taking out of her regular class for three whole afternoons would draw too much attention to her. She will be pulled out for therapy and we don't know how that will work. Her Physical Therapist said that she will have to be bused for PT. I will ask that if she is going to be bused any way, we want her doing Aquatic Therapy. We shall see how that goes over.

And the most exciting news we have is that we were approved for a grant to buy our stroller!!! To refresh your memory, this is the one we applied for. It might have helped that we know the family who started the foundation, but nonetheless, we are very thankful to be getting this stroller. I will post pictures as soon as we have it.

An update on Kindergarten...and a couple really cute pictures!

2008-02-05T14:37:00.000-08:00

Of course, let's start with a picture...Calm and at peace...(really, I had to convince her that standing still for a picture was cool...)

Well we came to the final decision that general education with a 1:1 aide is what we want for next year. Caitlyn's teacher suggested the Co-op school. Unfortunately they did their lottery drawing in January and we missed it litterally by a week. My mom and I are going to tour the school tomorrow to see if we want to put her on the list. Then there is the decision to make as to do we move her mid year if the spot opens, or go to the bottom of the list and wait. We are nervous but very excited. We hope that she will be embraced and welcomed no matter what school we go to. So, as of right now her schedule will be AM Kindergarten 5 days a week, and extended day (ASD social class) three days a week. Our baby is growing up...

Caitlyn is doing well otherwise. We do still deal with the ocassional seizure, and they seemed to be more violent than before. We go back to the neuro on March 5 to see what the next step is. She is also dealing with yet another sinus infection. Who knows what is next with that. This is the 4th round of antibiotics since August. Hopefully soon we can get her healthy..

Here is another picture...Check out how those clothes just hang on her. Some days I'm convinced that all 35 1/2 lbs are in her cheeks. She is a very solid little girl...But boy does this picture show how skinny she is. This picture also shows how happy she is. It seems that she rarely walks anywhere. (I'm told she'll start to slow down in a couple of years.) She runs around spitting on everything as she goes. What a character she is.

January 27th...A day I'll never forget

2008-01-31T13:12:00.000-08:00

I really will always remember January 27th. In 2006 on that day we found out Caitlyn had Rett Syndrome. It was a shock to us all. We were still so sure that she was merely "delayed" and she would indeed catch up. I never expected to be filling out SSI forms when my daughter was days away from being just 2 1/2. I never expected that words like: gait, apraxia, seizures, melatonin, praxis, scoliosis, motor planning, oral motor issues and many more; would become part of my vocabulary. Going into the appointment on that day, I knew that we were most likely going to hear that Caitlyn had Rett Syndrome. I still wasn't ready for it!! How to you ever prepare yourself for such a day? You can prepare for giving you kids the car keys the first time, or for their first date, graduating from college or even their wedding day. But how on earth do you prepare yourself to face the facts that those wonderful days may never happen?

Last years anniversary was a lot harder. It had only been a year! I think I just cried all day! This year was a little different. I worried about it for days before, wondering what it would be like. I wondered if I would make it the through the anniversary with my friends typically developing 3 year old running around my house. I wondered if I was going to make it through feeding Caitlyn a meal without breaking down and crying. I wondered if this would be the year I accepted everything, and moved passed remembering January 27. I have not accepted everything, but I get closer every day. Before Sunday, I never in a million years thought that Tuesday (the 29th) would come and I would realize then that all the worrying I had done was for nothing. January 27th passed this year just like any other day. Now today, I sit here feeling a little guilty that I didn't remember on that day! I can't believe that I didn't break down. Does this mean I'm finally heading the right way on the road to acceptance? I pray every day for that to be the case.

Now that we have spent two years in Rett Land, families are moving here after us. I feel so blessed when families find this blog. It means so much to me that I can say to another mom: "I've been there...Yeah, I remember what that first year was like." or "I remember when Caitlyn did that...here is what we tried." Of course, I still am constantly going to those that have been in Rett Land longer. (you know who you are. Two years seems like nothing compared to the time you guys have spent here. I see what you have done for your daughter, and know that I am as capable as you to advocate for and teach my daughter. Thanks!) Together, as Rett parents in this land, we can hold each other up and strive to the next step. Together we can hope and dream for a chance to move to a new land. I never asked to move here...but 2 years ago I never imagined I meet the people here that I have. Amazing moms and dads (and Grandma's...) that would do anything for their kids. I feel so blessed to have gotten to know each and every one of you. I lift my glass and say "Here's to another year in Rett Land: The most unfair place I've ever been...But also the most supportive!" I'm pleased to be part of the greater Rett family.

Kindergarten is coming...and we have three choices

2008-01-22T14:06:00.000-08:00

When a typically developing child prepares to enter Kindergarten, all the parents have to do is walk in to their neighboring elementary school and register them. Oh if only it were that easy for us! When we left our beloved birth-3 program, there was only one option for preschool. It was a scary change, but doable because all we had to focus on was transitioning Caitlyn with as little stress on her as possible. This time, it's not so easy.

Caitlyn will be 5 in August, so we have started discussing with her teacher what will happen next year. Our first brief discussion in November resulted in him saying that she would most likely go into DK (developmental kindergarten). Last week, he left a message on our phone with 3 options. (we are going in on the 25th to talk more about those options). Our options were:

DK (which basically is a continuation of what she is currently doing, just located in a regular elementary school)
General Education with a 1:1 aide (this is your typical every day Kindergarten class)
Self Contained classroom with high adult:student ratios (this is your old fashion "special ed" classroom, which in our district most likely means a "special school.")

Before I go on, let me just say that option #3 is not an option for us at this time. In my mind, putting children with special needs in a separate class or, even worse, a separate building is telling neurotypical children that they are better than the other children. I want my daughter treated like an equal in the school system. She has a right to be around peers her own age. With that being said, I know that general education isn't necessarily every parents choice. And that is the beauty of our country. IEP stands for Individual Education Plan.

So by the process of elimination we are left with options 1 and 2. The ideal situation would be DK (with a 1:1) followed by general education in 1st grade. Unfortunately we can't be promised that. So we are left with the question of whether or not our 5 yr old is ready to be put in a general education classroom. It is such a scary thought to throw her into a general education room after all of her schooling so far. My own personal belief is that she should be in that option #2 classroom, and her dad seems to be on board with that. What is scary is the question of if that is what is really most appropriate for her. The benefit to choosing #2 would be that if it doesn't work out, we can go down to option #1. With general ed you risk the chances of getting a teacher who is not fully accepting to Caitlyn being in the room. That is another scary piece of the whole puzzle.

And as if this wasn't all complicating enough, we are moving in June. So even if we were to observe the teachers in our home school to see if one is a good match, we wouldn't end up in that school come September. Of course this does, in our minds, present option #4. The neighboring school district is Northshore School District. We are considering a move into that district. They have an inclusion elementary school. Every class in this school has a make up of 15 typically developing students, and 6 on IEP's. The teachers are all certified in both Special Education and Elementary Education. This would be by far the best option in our minds. It would meet my wishes to have her around typical peers, while still giving her instruction from a teacher certified in Special needs. Also, call me crazy, but I think that being one of six would be better than being the one and only child with special needs.

So that is about all for our options. Now to figure out how we are going to make our choice. I will update after our meeting on Friday with any new information we might have to take into consideration. We have had a special request for more pictures, and let me tell you that was my intention and plan for 2008. I just need to get the camera and leave it on the table for picture taking! For now, I will take one tonight when Caitlyn gets home and add it. Take care everyone.