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

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

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

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

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


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


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


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


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


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


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

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

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

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

The Eyes of an Angel

From the Angel's mouth,

No words are heard.

Yet all those around her

Know just what she says.

From the Angel's eyes,

We hear her story.

Through her eyes we learn

Her every want and desire.

Look into the Angel's eyes,

And a story you will be told...

A wordless story full of joy...

The story of a Rett Angel.

Kindergarten Update

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

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!!!!!

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

This is HUGE!!!!!

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!!!)

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

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

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

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)

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...

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

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

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

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

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...

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

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!

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

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

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:

1. DK (which basically is a continuation of what she is currently doing, just located in a regular elementary school)
2. General Education with a 1:1 aide (this is your typical every day Kindergarten class)
3. 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.

Home Sweet Home

We got discharged today after just one night!!! Caitlyn had a few seizures yesterday, so the doctor got to see exactly what was going on. The official report is they are indeed seizures. This EEG showed generalized seizures instead of partials. So that has changed since her last EEG in May of 2006. This means that the seizure is effecting her whole brain instead of just a localized part. So we will up her medication once again, and see what happens. The doctor said to be prepared with high calorie foods, as the medication increase could suppress Caitlyn's appetite. Every bite matters, once again! We have started adding Nestle Table Cream to her food, and will continue to get the higher calorie choices for yogurt and other foods.

It is so hard to cook for a child who requires high fat/high calorie foods when you are trying to eat low fat/low calorie things! We will do our best.

Thank you everyone for thinking about us this week! We are all very happy to be going to bed in our own beds tonight! (especially me! roll-a-way cots are not comfortable in any way!)

Tomorrow is the big day

Tomorrow is the big day. We go down to the hospital to check in by 7am. It was 7:30, but silly me, I forgot to send the pre-registration stuff in! Caitlyn and I will leave the house at 6am to account for the anticipated traffic. Please keep us in your thoughts and prayers this week. The lady from the doctors office said to prepare for 5 days, but that if Caitlyn does what they need we'll get out sooner. So, Caitlyn if your listening, if there was ever a good time for seizures, it's tomorrow! I won't have Internet access while I'm there, so I will update when we get out or Tuesday evening when I come home to sleep. Tuesday evening will be daddy's night to stay down there.

I'll leave you with a picture from yesterday. This is Caitlyn caught in the act of NOT napping...(of course during nap time.)

Happy Thanksgiving!!!

I decided that Thanksgiving is my favorite holiday. I put a lot of thought into this, but my decision is made based on the following:
What do we do on Thanksgiving? We eat a lot! The food alone isn't what makes this my favorite holiday, it is the fact that on this holiday, my daughter's differences don't show as much. She can't open Christmas presents, and they are most often baby toys; she can't find Easter eggs, and if we put them right in front of her, she has trouble picking them up; she could care less about the fire works on the 4th...But she can eat! Caitlyn can eat, and I'm pretty sure she is very thankful! On Thanksgiving, my little girl fits in at the dinner table (except that she doesn't fully feed herself). She can eat just as much as anyone else at that table...

Ofcourse she didn't eat that much today...She discovered mini-marshmellows, and helped herself to a handful which she snacked on throughout dinner.
She seems to not be feeling very well today either. She started out with a little cough earlier in the week, and now has been running a fever. The tylenol keeps it at bay for the most part. She climbs to 102 pretty regularly about 6 hours after the tylenol. We will see how she does through the night and then see if we need a trip to the doctor. Coughing and fevers are never pretty for Caitlyn.

Happy Thanksgiving, and Happy Black Friday shopping to those that do that.

Seizure increases...what next?

Well, Caitlyn's seizures have been increasing again. The new neuro (who is now the old neuro...he retired) upped her medication in August. Her control remained good until about 2 1/2 weeks ago. They started again slowly, about 1 every few days, and picked up from there. Today we are at 3-4 a day. This past Monday was not a good day. Caitlyn had 4-5 seizures, the last one causing her knees to buckle and fall to the floor hitting her head. This of course caused us all to jump up and make sure she was fine and she was.
I called her neuro on Tuesday and then again to follow up, only to find that the new neuro had retired, (hence him now being the old neuro.) So the nurse said she would talk to the replacement neuro and see what he wanted to do. The crazy guy decided to subject an active 4 yr old to a 5 DAY video EEG. This is absolutely insane if you ask me! But, Eric and I agreed we would give this new guy a try before we hunted for another change in doctors. So, we'll try anything to figure out these seizures and have control again.
So the big day is December 10th! We will go in at 7:30 am and not come out until Friday the 14th! Please pray for Caitlyn during this time...and everyone's sanity!

A story I have to share!!!

I have to first say, that this story had me in tears as it unfolded before my eyes...My little girl is getting sooo smart!!! (the word was amazing, but even more amazing was that she understood exactly what the lady asked her!)

We went to the doctor today so Caitlyn could get her flu shot. As we were walking out, there was a lady that was walking out too. She said hi to Caitlyn. The dialogue went something like this:

Lady: Hi! I like your shoes!
Caitlyn: [bent over and pointed at her shoes]
Lady: Do they light up?
Caitlyn: (as clear as day with a big smile) Yeah!

The lady continued to hurry on her way, not knowing what joy she just gave me. I go to sleep tonight knowing that my little girl understands more than we have ever given her credit for! I love my little girl! Here's to many more stories like this one. Here's to finding the little girl full of life trapped in a Rett body.

Wait, I forgot to tell you

Every once and awhile I like to read what I wrote and remember stuff. As I read the other day, I noticed that there were a couple posts I never updated...So here they are!

In this past July, I wrote about the scheduling frustrations at our local Children's Hospital's Neurology department. I can't believe I didn't update from that! Well, we got fed up, so we found a new neurology at Swedish hospital who could see us as a new patient in just 3 weeks! So we went and saw this wonderful new neurology who upped our meds to 125mg once daily. He said he is comfortable going up to 150mg before we look at adding another medication. So far, the 125mg has worked! He also said that if the med increase didn't work, he'd like to do a 24 hr EEG. But we talked about how difficult a 24hr EEG would be on Caitlyn. (she is a very active little thing...hmmm..no wonder she can't gain weight!) Ofcourse some things are too good to be true...Our appointment ended with the dr. telling us he was retiring! So we have an appointment in Feb. with his replacement and we will give him a try and see what we think.

Next, we found out last week that the stroller we asked for was denied! I think it was a plot, because they denied us so close to the end of the month. Our insurance is changing on the 1st of November, so now we'll have to start all over. We know already that the new insurance will most likely deny the claim, but then we can take that to another organization and ask for help. We have also decided to change our focus as to what we want. It is time to be realistic. Caitlyn will most likely slow in the coming years, and this means we need something that is transportation rated, just incase...Here is what we are looking at now..I like either this one or this one. We are leaning towards the first one, but we'll see.

Caitlyn says I should show everyone a couple of pictures and tell all of my readers that I'm trying to become healthier so I can be around longer for her. So here is me and Caitlyn during the summer of 2006

And this next one is me and Caitlyn yesterday.

I really just started the journey about a month ago, but already I am seeing results. I guess it is just nice to have as many supporters as possible!

Yesterday Caitlyn and I went to The Farm in Snohomish, WA yesterday. We had so much fun! This picture is from the horse swings made out of tires. She got a trout (with a little help) which we took to grandma and grandpa. We went on a hay ride, and watched duck races! The duck races were really neat! Caitlyn's favorite part was the wheel barrow ride out to the pumpkin patch, and it was a good work out for mommy too! We had fun, just Caitlyn and mommy!

a little update and a few pictures

This year is going good so far for Caitlyn in school. She really enjoys herself, and we are told that she has a little friend, Tristan, who likes to share whatever he has with Caitlyn. Eric hopes that this isn't the beginning of boy troubles! (daddy's...aren't they all the same?) As long as we can keep her healthy through the winter, I think this will be a year with great progress!

As for staying healthy, it seems to be easier said than done...If you recall last year around this time, we saw an ENT and decided Caitlyn's tonsils and adenoids had to go. That wasn't a fun experience by any means. But, Caitlyn started gaining weight in no time, and has put on 5 1/2 lbs since her post-op weigh in. She was also healthy for the first winter since being born. The first year, she just had bronchitis onces in February, followed by pnuemonia in August...The second year is when all of the problems really started...(looking back, this also happened to be right in the peek of her regressions. We thought the persistent 4 1/2 month long sinus infection was the cause of her loss of speech) The third year was a little better, but still not fun...between age 2 and age 3 Caitlyn didn't put on any weight. Anyway...That is just some background on the sinus issues that she suffers. The pattern she follows is: infection, antibiotics, healthy for 3-4 weeks, then it all starts over. Her ped. says there really isn't a next step, so we are trying nasal spray as a preventative...we shall see...I really don't want to lose the weight she has gained. So far we have sat at 34.5 lbs since April of last year...We'll take it! So we are just finishing our round of antibiotics, so we shall see what happens!

What would an update be without any pictures? Here's a few!

Have you ever seen that comercial for the Campbells Soup to go drinkable containers? Caitlyn really reminded me of that on this night while she was drinking her yogurt smoothie! (ofcourse you can see that some missing was involved)

And here is this one, just because I think she has the most beautiful profile. And look, she's getting red in her hair!

And here, just because she is so peaceful when she sleeps! She is just really getting into pillows, and doesn't she just look soooo comfortable?

Thanks everybody for reading!

It is October again...Rett Syndrome Awareness Month..

Last year in October, I wrote a quite long post about Rett Syndrome and what it meant it our life. It was really a story of Caitlyn. There is no point in repeating all of that this year, you can go back and read it to refresh your memory, if you'd like. This year let me just say a little about our last 12 months in the world of "Rett." (I promise it wont be as long.)

Today Caitlyn started an extended day program at school. On Monday, Tuesday and Wednesday she will go to school from 8:45-1:45. Her diagnosis is the only reason she gets this extra education. In our district the extended day program is specifically for kids on the Autism Spectrum, and Rett Syndrome still remains on that list. We take what we can get in the education department.

It has been nearly 2 years since we first heard the words "Rett Syndrome." It still feels soooo new to me. Sometime over the summer it clicked in my head that we weren't the very last family to get a diagnosis of Rett Syndrome. It occurred to me that other families may be expecting that I can offer them some support and that they may be encouraged by my strength. I can do anything in my power to offer all the support I can, but between you and me, don't be encouraged by my strength. I still cry at night, it still breaks my heart to see typical 4 yr olds, I still secretly dream that there is nothing wrong...Up until recently I still held onto hope that someone made a mistake. The truth is, I got the results in the mail, and Caitlyn does indeed have Rett Syndrome, a mutation of 901insAC to be exact. So, My daughter has Rett Syndrome...It only took me a year and a half to let go of the dream of someones error...Now, I can begin my road to acceptance. If you are new to Rett syndrome, learn more about it here.

This year, how about if you have read this, you post a comment saying something...Tell me what Rett Syndrome is in your life, and how you came to know about it. If you are a fellow Rett parent, hug your child, and spread the word!!

School is underway and going well...

Well, Caitlyn started school on the 10th. So far things are going well. She loves going to school! I am excited to announce that we were able to get Caitlyn a 1:1 aide for school! We are thrilled that she has this, and think it will make a huge difference in her ability to participate! We are looking forward to just sitting back and enjoying this year of preschool. I know the time to think about next year will sneak up on us, and I'm not ready for that. I just hope that everyone is able to see her potential in the next year. We will not give up on Caitlyn's academic abilities, and will not let anyone else give up!

We are awaiting the results of our stroller claim. Here is a picture of what we are asking for. At 41 inches tall, she has completely out grown our umbrella stroller, and has about an inch before she outgrows the travel system stroller. Those that know Rett Syndrome will laugh as hard as we did when we found out they want to know why Caitlyn can't MANUAL propel a wheel chair! Even if she could learn to push those great big wheels, can you imagine her going like half an inch in between mouthing her hands? just picture that...

Well, I'd like to leave you with some recent pictures of a princess...(Taken by Thomasina Cooper)

Enjoying the Pacific Ocean with Uncle Jim



Deep in thought


And this one...because you can't get much more "Rett" than eating that hand..



And please visit the link to my scrap booking blog for a pretty new page. Thanks for looking!

4 yrs old, here we come...

Well, as Caitlyn fastly approaches 4, I set into my birthday depression...Caitlyn's birthday is the hardest for me. It is so hard to see the other 4 yr olds playing and talking. It is even harder at times to see 2 and 3 yr olds that have already passed my daughters developmental levels. Caitlyn is amazing in her own way, I know...And she continues to make strides. In fact, just the other day she walked up a grass incline for the first time all by herself! I love to see her make advances in her development. But every year when her birthday is coming around, I morn the loss of the typical stuff. My friend's all tell me what their 4 yr olds are doing, and all the funny things they say. I know they are excited, and don't get me wrong, they have every right to be and I don't mind that they share their excitement with me. I still struggle with it all. Last year and this year have been the hardest. Before finding out she had Rett Syndrome, she was simply "delayed" and it was much easier to deal with the missed milestones, because we had so much hope of her catching up! At 2, she had finally mastered the sign for "more" and this was huge for us. She loved to color and still had very precise hand use. Then all of the sudden she turned 3, and she had Rett Syndrome, and all she did was chew on things, and didn't color any more. She could still feed herself with help, and was learning to walk up stairs. Now, she is going to be 4 on Sunday. She still can't talk, (tho says the cutest momma you'd ever hear with these drawn out m's that comes out as mmmmmmuumma. so adorable!!) She struggles with her hands every day, and struggles with siezures. She is my beautiful angel girl, and I love her like crazy, but I am struggling still with the acceptance of seeing typically developing children pass her more and more.

We will celebrate Caitlyn's birthday quietly, with a trip to the Olympic Game Farm in Sequim, WA. We are excited for this family time, and think Caitlyn will really enjoy herself. I continue to know that she is who she is, and will continue to surprise us with all she can do. I ofcourse, still don't forget that my little girl isn't a typical little girl, and I wont get to brag to others about the funny things she said as she opened her gifts. She can't even do that herself...But still, I lover her.

What a day...

(This is another picture that my talented sister-in-law Thomasina took. It is from last summer)


So, as if we didn't have enough to deal with in our wonderfully full lives! Caitlyn's seizures have increased to at least 2 a day, if not more. (prior to this, she was fully controlled by medication, with the exception of maybe 1 or 2 a month) She is also experiencing some random crying fits, during which she will bang her head on the floor, or hit herself in the side of the head. So, being the pro-active mother that I am, I called to make an appointment with her wonderful Neurologist. (no really, we like him a lot!) We were due to see him at the beginning of September anyway, but I hadn't scheduled the appointment yet. Would you believe my anger and surprise when I was informed that the SOONEST appointment they had was 10 weeks away on October 16th? I kept my cool, as I knew it wasn't this gals fault that the scheduling system sucked. She advised me to call the nurses hot line and find out what we should do for now while we await that appointment 10 WEEKS AWAY!!


So I did my duty and left my message. Now, let me just say that the nurses line at this *un-named* hospital has a reputation of not calling...I have only called once, and I don't think they ever called me back. Since I am such a nice and understanding person (most of the time) I feel the need to give them a chance. Their recording said due to high volume, it may take 48 hours to hear from someone. So let's see...That would mean I should hear from someone by Wednesday evening. They have my work number, and my home number. In the event that we don't hear something that is an acceptable plan, we will begin to look for a new doctor. I will not wait 10 weeks, while my daughter becomes increasingly irritable and uncomfortable! I will update every so they can follow our adventure!


On a more positive note, we are planning some fun for the summer! On Sunday, August 5th Caitlyn will be 4 yrs old! We are going to go as a family to the Olympic Game Farm for the day. It should be fun, and I think Caitlyn will really enjoy it! I can't believe my baby is going to be 4!!! The following weekend, Caitlyn, my mom, and I are going to drive down to Seaside, OR for the annual NWRett Syndrome Conference. I have to be back at work on Wednesday, so we will go down Sunday and come home Tuesday late afternoon. It should be fun! I plan on coming back with a lot of pictures, as this will be Caitlyn's first trip to the ocean!

I will write again later this week when we find out what the plan is...Thanks for reading!

Things are looking up!

My sister-in-law, Thomasina took these pictures at the parade on the 4th of July! Go Cooper!!!


Well, Caitlyn handled the week inside with the Chicken Pox pretty good. Her dad was laying around with Strep throat, which I had the week before. They both got better, and Caitlyn started getting sick again. We took her in to the doctor and they did a rapid strep test which was negative, and chest x-ray which the doctor said nothing jumped out at him. But he decided to give her antibiotics to be on the safe side. We got home after filling the prescription, and the doctor called to say the radiologist said there was pneumonia! The next day she was feeling a little better, so we went and had some fun! Well, the next day (two days after seeing the doctor) the doctor called to say Caitlyn's 48 hour culture from her throat grew, and she did indeed have strep throat! Well luckily she was already on the antibiotics!

She is feeling much better, and even went and looked a daycare today! We found a place we are all very happy with! It is a in home childcare center, so it is a smaller group of kids. Caitlyn isn't the only child with special needs. It seems to be a good mix of kids, and they all seemed really happy! The neurotypical kids are used to having kids around that have special needs, and just in the short time we were there, kids were handing Caitlyn toys and being really nice to her. I think it will be a good match for Caitlyn! And there are a couple of others that go to her school, so she will ride the bus with others! And of course the best thing is it is almost $200 less than the big corporate centers!

So since Caitlyn starts daycare on Monday, Eric has to start work too!!! We are thrilled that he got a really good job, and he is happy to be going back to work! Finally, things are looking up for us! Next week will be busy: I go back to work on Monday after 2 weeks off, Caitlyn starts daycare, and then on Tuesday or Wednesday Eric will start work!!

It never ends...

Aparently we can't keep Caitlyn in a bubble....so this is what happens. She has a mild case of the Chicken Pox. It is very mild because she has had the vaccine, but even still Caitlyn couldn't be protected. Hmm...maybe we should give the bubble another try. Have you ever seen Bubble Boy? Well, if I can't protect her, we'll just keep her comfortable. Other than this she seems to be doing ok. The siezures have increased slightly with the illness, but that is to be expected. We will update more at another time.

Been a long time...

First, before I update everyone on the past couple of months, I'd like to show this picture. This is soooo much more than a little girl sitting on a swing. This is my little girl sitting on a big girl swing for the first time! She did very well holding on, and had fun with mommy pushing her. She has completely outgrown the baby swings now...I am so happy that she can hold on to some extent. It was a short ride, as her bum is so small and had trouble staying on the swing...But as you can see, she really enjoyed it.

We have all been doing very good around here. Caitlyn is doing wonderfully with her potty training. She hits her button when she needs to go a few times a day. We take her in every time she hits it even if she doesn't need to go. We are so pleased with her progress!

Medically, Caitlyn is doing well. The Zonegran increase that we did in January really helped. The episodes decreased. We do see occasional breakthrough seizures, maybe about once every couple of weeks. At this point, we will not increase her medication. As far as growth, Caitlyn is growing like a weed!! She is sitting comfortably at 33 pounds. That is only a 1/2 lb increase since early January. That's not too terribly bad and wouldn't be a cause for concern, except that that 1/2 lb went to the 1/2 inch that she increased, setting her at 41 inches tall! So, we will see again what we can do to add a little that will stick to her ribs!!




I don't know I have talked about Caitlyn's toe walking here or not. Well, here is her new hardware!! We started out with the lower ankle model, and it was going ok...Until Caitlyn realized that there was a notch behind her heel just deep enough to bend and go up on her toes! So, she has been moved into the taller model that goes up to her middle shin. She seems to be tolerating them well, and is only toe walking with her shoes off!

We are preparing now for Caitlyn's upcoming IEP. It is on May 22. We are hoping that we will walk away still feeling good about her current situation. There are a few things we are looking at and am hoping that we will be able to get them in writing without too much of a fight. If we don't get around to updating before then, we will after. Our 3 main issues that we will bring up are: a 1:1 aide, Hydrotherapy for Caitlyn's PT, and inclusion of some sort for Caitlyn.

I hope this update has found everyone else doing well.

Helping out around the house

Well, we decided it's time Caitlyn help out a little around the house. :) We got this new vacuum for Christmas, and Caitlyn has been scared of it until a couple of weeks ago..Today, she even helped daddy vacuum! Yes, that is a smile! She is really enjoying herself!

Caitlyn is doing so amazing these days! Her speech therapist says she can identify the cow with eye-gaze! And last week she spent 3 whole minutes working on her collage at school! We are so proud of all of the progress she is making! Every day she seems to learn something new. We couldn't be more excited about all she can do. She has been calling me "momma" a lot..and even some mommy's! She is so amazing!

A new found hope

A year ago when we recieved the news that Caitlyn has Rett Syndrome, we lost a sense of hope. Yesterday, with the results of a ground breaking experimental study, we recieved a new, enormous kind of hope. Here is the article from cbs news..At 3 1/2, Caitlyn is a special person in our lives...She brightens up our day with each smile. This news that sometime in her life, she may be able to do all of the things that typical children do, is just amazing! It's kind of like when you have cancer and they tell you the odds of over coming it...When Caitlyn was diagnosed last year, there was a very very low chance that she would ever have a normal life...I feel like the statistics have just changed, and my daughter now has odds in her favor that she will someday live a normal life....That she will some day be able to care for herself..That she will be able to come home and tell mommy and daddy all about her day. As we do have this new hope, we are still cautious...It is still many many years away, but the news that scientists are making huge progress in their research is just wonderful!! Our hope will remain alive!!

Here you can see the change. To the right of the screen, there are video clips of before and after!! amazing!

One Year Ago....

caitlyn...just one month before we first heard the words "rett syndrome"
Tomorrow is 1 year for us...I wish I could tell you that on the eve of this day, I'm ready to head in to the day head first and full of excitement. More likely is that I am ready to curl up in bed and skip the day all together...the day that our lives changed forever. I wish I could say that I have come to grips with everything that Rett Syndrome has brought into our lives. The fact is, it is a work in process. We will continue to go one day at a time to make it through everything. There has been hard times and there has been happy, easy times.

The words "Rett Syndrome" lifted a burden for us. It closed a chapter of the unknown. At the same time, it opened a new chapter in our lives. Another chapter of the unknown. A year ago while we sat in the office of our Neurologist and had the attending (our resident was much nicer about it all) basically tell us that Caitlyn would be mentally 2 1/2 forever, we lost a sense of hope. We grieved for the loss of dreams. Althought we still deal with some grief, as well as some anger...Today we have a new sense of hope. Caitlyn is learning to communicate with us in very clever ways...She enjoys doing what mommy and daddy tell her not to, and is even able to communicate her needs to use the potty!

A year ago as our hope was stripped from us, I spent many hours crying...Today, I still cry...I still struggle with the loss of hope..but at the same time, we have a new found sense of hope. We have learned so much about ourselves and Caitlyn in this past year. We have learned how differently everyone deals with the changes that life has given us. We are forever thankful to all of the support that we have recieved. We hope that everyone that comes on line, and reads about Caitlyn will be struck by her...Her smile is not something that you can see, and then just simply forget about.

One year down...and hopefully many, many, many more to go...Here's to learning about unconditional acceptance from a child!

Let it Snow, Let it Snow, Let it Snow!!!!

We had some beautiful snow hit us this week. Caitlyn was thrilled. She fussed when I was bundling her up, but once we got out it in, she really enjoyed it...I just thought I'd share this scrap book page of her hanging out in the snow!

Nuero Update

Well, Caitlyn went in for a checkup with the nuerologist. It was mostly un-eventful. We have had some increasing activity, and have raised her Zonegran to see if it improves. We are pretty sure that the increase in activity is due to weight gain, which we are happy to see! Caitlyn is weighing in at 32.5 lbs now! This brings her BMI up to 25%, taking her out of the danger zone! We are very happy to see a healthy weight gain.

Potty training is pretty on and off. Currently we are off...Well, not completely off. She is still going, just not as much as she was..We have some hurdles we needs to overcome with accomidations for potty training before we can be completely successful! Well, that is our update for now!

What technology does for us..

Amazing technology has entered our home once again. Here is a video of Caitlyn letting me know she needs to go potty, using her new one-choice communicator that hangs on our wall. It is hit or miss that she actually needs to go when she pushes it. We think she sometimes pushes it while she is going, too. She is growing up soooo fast!!! I just can't believe it! She is doing great with the pottying! We are using pull ups. She even pottied at school this morning! Apparently they have every imaginable potty seat or chair at the school, and used what she uses at home! Well, here is the short video

A video Montage

Photo and video editing at onetruemedia.com

I hope everyone had a good Holiday! We sure did. It was great to spend time with family. We missed seeing my sister and her family this year, but charished the time we had together at Thanksgiving. Since my parents recieved their gift, I thought I'd share it with everyone else. It was fun to make!

On a happy note, we are back on the potty training band wagon after a break after surgery. Caitlyn is doing great! She got a one-touch communicator that we can put on the wall, so that Caitlyn can let us know when she needs to go. For now, we are visiting the bathroom every 1 to 1 1/2 hours. Today is the best day, so far. She goes with each visit to the bathroom, and has been dry all day! We are very proud of her!

Weight Concerns have been Lifted for now!!!!

We had our appointment this past Monday with the Nutrition doctor, and are pleased to say that weight concerns have been lifted! Caitlyn put back on the 1.5 lbs that she lost after surgery, plus an additional pound!!!!!! That's a 2.5 lb increase in 3 1/2 weeks! That sits her steady at 5% for BMI, according to the BMI calculator. So for now, we will continue with her normal diet and hope that she stays at a healthy level of increase! We are armed with calorie adding recipe's in the event that her growth slows again. We will continue to watch, and make sure she continues to put on weight as she gets taller, but for now there is no need to do Pediasure or pack her food with fatty, calorie adding food. This is hopefully good news for me too! The idea of adding calories to her food is hard, because extra calories is the last thing mommy needs!

We go back to the Neurologist on January 9th. We will be sure to update after that appointment. I will, of course try my hardest to update before that! Caitlyn's grandma and I will be taking her to the Parent-2-Parent holiday party this weekend. I am excited to do that! Hopefully she will like Santa! We will see.

Update..It's been too long

It has been a long time..here is an update.

First...Caitlyn's Tonsil surgery update: We had a horrible surgery time, not going in until 12pm! Caitlyn hadn't eaten since 6am and was not a happy camper! The surgery went well, lasting only 10 minutes. They told us how well it went, and that she was waking up ok. We then went up to her room to wait for her. She came up at about 2:00. She was asleep, but then when they moved her into the bed in the room, she woke up. She was way over stimulated, but seemed to be doing fine. (a little drugged from the pain meds they gave her during surgery) The nurse came in to make sure her stomach was "awake" and check her vitals. We were given the go ahead to start with some ice cream and jello. She was doing great! Even ate some mashed potatoes and spagetti-o's for dinner! She started getting sleepy, so we tried to get her comfortable for going to sleep. I requested her seizure meds early, but they had been ordered for 8pm and it was only 6:30! Stuff then got a little scary..

Caitlyn started bleeding. I'll spare all my readers the graphic details..But it was very very scary as the parent! She lost about 200-300 cc's of blood. (the nurses estimate) The ENT team came in to check, and said it had clotted. But she would not swallow anything. Which means we couldn't get pain meds or seizure meds in her. We did Tylenol from the other end just to keep her comfortable so she could sleep. She didn't complain of the pain unless we were trying to get her to drink. She just lay on her side drooling everywhere! We slept fine the first night.

We woke up Tuesday morning to the ENT team in the room doing their rounds. Caitlyn was sound asleep, and they decided to look in her throat! Silly doctors! Anyway, they took a look and made the decision to take her back into surgery to cut the clot and re-cauterize. She didn't get to have breakfast, but that's ok..I don't think she would have eaten anything! It was also decided that since she started out doing ok after Monday's surgery but then went down hill, we would be staying Wednesday night as a precaution. She came out of surgery fine, and was more relaxed in her room. She rested for awhile. Then after pleeing with her nurse, we were able to disconnect from the IV for an hour. We took her on a wagon ride to the play room. She was very happy walking around and dancing! She wasn't all that stable, but seemed to be doing ok.

Wednesday morning came, and we were doing great! She ate real food for breakfast and lunch! Was very happy to be eating something she could chew! We got to go home! We were doing good at home on Thursday. We held her down for pain meds so that she would continue to drink. Friday she had a really rough day. We couldn't get back on top of the fluids, and ended up in the ER on Saturday for IV fluids. They gave her a bag, changed her pain med and sent us on our way. She stayed on the heavy duty pain meds for another 2 days, then we went down to just Tylenol. By thanksgiving she was doing great!

Today, at 3 weeks post-op she is eating more than she ever did before surgery! We are very happy and hope that this means we will see some weight gain!!!