Graduation day!!

What a momentous day! Caitlyn graduated today from her Birth-3 Early Intervetion program today. They do this little ceremony for all the kids on their last day before they turn 3. They sing this little song about going to the big school. It was really cute! Caitlyn loved being the center of attention! Usually they walk over this little stair thing, and then down the other side, but they adapted to make it easier and less stressful for Caitlyn! She walked up the ramp like a pro! We are so proud of her! She has made such progress since she started in May of 2005! On September 11th, Caitlyn will start preschool at the "big school." She gets to go 4 mornings a week! She even gets to ride the bus!!! Thanks for sharing in this special day with us!! I can't believe she'll be 3 on Saturday!!!!

What love is all about..

This is just how sweet and perfect love can be!! I wanted to share this link to some pictures of a wedding. I look at these pictures and dream and wonder if the day will come that someone will fall in love with my Caitlyn. Her attitude sure would make some guy happy! I hope they touch you as much as they did me! It really is a beautiful marrage!!! I want to thank everyone for being there for our family! We really appriciate all of the support!!
http://www.time.com/time/photoessays/2006/special_wedding/

Caitlyn got her new glasses today!

Caitlyn got her new glasses today! Doesn't she look all grown up?

Look how pretty she looks with them on! They fit her face so nice! She has to wear them for now when she eats or is looking at books. The doctor is hoping that they can correct her eyes just with glasses. Her right eye crosses independantly. She is actually really good about leaving them on. After she gets more used to them, she'll wear them more often. They are bi-focals, so she's still getting used to where to look. We'll go back to the doctor in 8 weeks to see how it's going.

Just thought I'd say...my baby will be 3 in 2 weeks! My how time flies!!!

What a fun day!!!

We had a blast today!!!! Caitlyn and Mommy went with The Little Red School House (Caitlyn's school) on a field trip to the petting farm!! Caitlyn had a blast! The first picture is me and her with a calf. The calf came right up to her, and then ended up laying down right next to us. Caitlyn really liked the calf! (Though I'm not sure how much he liked Caitlyn...She got his ear a couple of times!)

The next picture is Caitlyn with her teacher, Leah, and a goat! The goat is pulling away because Caitlyn just got ahold of its ear! That explains the look on Leah's face!! We really had a good time...I got to talk to some of the other moms.

If you are the parent of a special needs child, you'll understand this (if not, I'm sure you can imagine.): When I am with other parents of special children, I feel at ease. Caring for a special needs child tests every ounce of bone in my body...I get frustrated and I sometimes get angry. With the other parents of Caitlyn's school, I don't have to be frustrated...Every other parent there knows what I go through. This is also why I am looking forward to our upcoming trip. We are going to the Northwest Rett Syndrome Foundation conference. Every other parent there will know what it's like...they will be able to ignore Caitlyn's screams in the middle of meals...Or understand when I have to excuse myself because she has reached her limit...To all the parents out there raising a special child: Thank you for excepting me into the circle, and making me feel like I'm not alone. To all the parents out there raising typical children: Thank you for being my friend, sister or parent even though my daughter isn't like your child.

Today we do the happy dance!!!!!

We are so happy around here today!!!!!!! On July 3rd, we faxed our script and letter of medical necessity to a pharmacist. He was to work as the in-between for Medicaid and Enabling Devices. When I asked him how long it would take, he said maybe about 2 months. Today Caitlyn received a package from the UPS guy. We weren't expecting anything, and her birthday isn't for about 2 1/2 weeks! Well, it was her communicator!!! Of course the picture isn't of Caitlyn, but that is her device. We can put frames in for 1, 2, 4, 8 or 16 pictures!! This is exciting. At school Caitlyn has pretty much mastered having two choices. Now she can move on!!! Even more exciting is that we own this! We can send it to and from school, so we can continue what she is learning at school!!

I think Caitlyn knew very well what was in the box. I told her "look Caitlyn, it's your communicator!" I was so excited about it. Caitlyn kept trying to pull it out of the box and was signing "more." She wanted to check it out!!

Tomorrow is our field trip, and we will go pick up Caitlyn's glasses too!!! Big news around here!!! Caitlyn is starting to figure out little ways of telling us she needs her diaper changed. So, we're off to buy a potty next month!!! We'll see how it goes. I'm not in a big hurry, but I have talked to other mom's and it IS possible!!!! So we'll tackle it one day at a time, and teach Caitlyn all about pottying in the potty!

A fun weekend

We had a fun weekend! We drove across the state to Spokane for my niece, Trinity's 1st birthday. Caitlyn did pretty good on the drive there, although when we stopped for lunch she had a major anxiety attack because everyone else decided to stop at the same time, and the McDonald's was VERY crowded! (Not to worry, we learned our lesson on the way home! We picked up food through the drive-thru in Ellensburg, and took the food to the next rest stop so Caitlyn could play in the grass and not worry about being around all of those people!) She did soooo good! There were quite a few people at the party, but the weather was nice and Caitlyn was able to walk around if she needed to, without having to worry about being in someone's way!

We got back last evening, and Caitlyn slept like a pro last night! Unfortunately we all slept in, and she missed school. It ended up being ok, though because the sudden weather changes were messing with her system. We went from 93 and very dry yesterday to about 55 and wet this morning. She didn't want breakfast, and was extra mucusy all morning. Feeling better this evening, tho!

It will be a quiet week. Caitlyn gets to spend Wednesday with her grandma, then we have a field trip on Thursday! We're going to the petting zoo!!!

A poem for an Angel

Long ago when I was in high school, (ok, so not THAT long ago) I wrote quite a bit. I would work through whatever was going on in my life through poetry and an occasional story. Well, I realized today that it helped...So, as I deal with everything that having a disabled child brings to life, I decided to take up writing once and awhile. I wrote this poem today. If you follow the link to the right for "Mommy's Scrapbook Blog" you can see the scrapbook page I did to go with the poem...Well, here it is...I hope you enjoy it.


Sweet Dreams


When your eyes are closed
And you are sound asleep,
Your whole body rests.

I sometimes sneak in
Just to watch you sleep.
With a heavy heart, I begin to weep.

I wonder where you go...
When you are in this state....
Do you dream?

Do you dream in silence....
Or are you full of voice?
I wonder...will I ever know?

My tears that fall
Are tears of happiness.
At last, you are at a rest.

My dreams for you will always be...
Full of voice and energy.
This I wish for you.

Our Neurology update

We had a great appointment! Caitlyn's Grandpa went with us, since daddy had to work and Grandma had a meeting. Caitlyn fell asleep on the way to the doctors, so she was very happy and rested when we got there! We found out what the whole abnormal results on the EEG mean...Dr. Coleman said the scan showed brain activity consistent with Partial Seizures. The ultimate goal is to have Caitlyn completely episode free, if possible. When she first started on the medication in May the eye rolling and screaming fits stopped...But, she got very very drowsy and just sorta out of it...(then again we also found out she had an ear infection at that time!) So, the doctor okayed lowering the dose to see if it still helped...She got energy back, but also a few more episodes. So, the doctor wants to try and increase the meds slowly to see if she handles it...We go back in 3 months, unless her episodes increase or change...Thanks for following our journey with us!

Special Needs, but normal in so many ways...

As I type this with one hand, Caitlyn is fast asleep on my shoulder! I just wanted to share with every one the perfectly normal day we had yesterday... Caitlyn loves her John Deere Tractor. Taking her outside to play reminds me that even though she has some physical challenges, she can do and enjoy a fun day as a normal almost 3 year old. Caitlyn needs a little help getting on the tractor, but she can make it go all by herself!! As you can see, she doesn't use her hands enough to steer, so I ran in front to take some pictures, and Eric is running along side steering when it is needed.

Here's to treating every child special...as though they were normal!

We said bye to Toby today...

It was a sad day today. We decided that we just couldn't afford the stuff that comes along with having a puppy, so we found him a new home. We found a nice couple that were looking for a small breed dog. The guy is in the army, and Toby will keep his wife company since he is leaving for Iraq soon. Although we miss him terribly, we feel that he has gone to a good home. Later on when we have more room, and more money we will get ourselves a new dog. He really was a part of our family, and he will be missed!

Mommy's new hobby

I decided I needed a hobby to keep myself busy. So, I took up digital scrapbooking! I am really enjoying it! (There is a link on the right to my site where I'll share my pages) I just wanted to share this page here because it is truly Caitlyn. One of the common characteristics of Rett Syndrome is the uncontrollable hand movements. In the top picture you can see Caitlyn's most common movement. When she puts her right pointer finger up to her mouth like that, she also makes a raspberry sound. She does this a lot. Forever our princess! About the Silent Angel: Girls with Rett Syndrome are commonly referred to as Silent Angels due to their inability to talk. Caitlyn truly is an Innocent Silent Angel trapped in her body. She has so much to tell us, but just can't get it out. She is forever our love!

We head back to the Neurologist on Tuesday the 11th. Wish us luck! I'm hoping to have a good report to share! We were informed that her EEG showed abnormal brain activity, but I'm not really sure what all that means! I guess we'll find out!

Fun in the Sun!

The weather has been beautiful lately! The sun is out every day, and in the 80's most days. Ok, so it is a little too warm for all of us, but still fun! Yesterday we found a new park in town! The have a sprinkler area, where the water comes out of the ground. Caitlyn loved it! The water was a bit cool. We tried to get her to sit and warm up for a few minutes, but she got right up and went back to the water! She loves the water!! I wanted to share these pictures. She doesn't match, as we didn't go to the park in shorts, and those just happened to be in the car...but she didn't care, and still had a blast!

It's been awhile

I have been playing with the picture software. I found this cool cartoon effect! The bottom picture is before, and the top one is after! Enjoy!

It's been awhile since I posted, so I figured I'd update everyone on how we're doing. Everything is really going well...Caitlyn is on a two week break from school. She'll start back on July 10 for the summer session. She only gets to stay until her birthday, which is August 5! (yes, our baby is almost 3!!! She is doing well. We haven't noticed any more seizures as of now. (That doesn't mean she isn't still having small ones.) Her neurologist did say that the EEG came back abnormal. She will remain on the medication for now, and we go back in on July 11. I will definitely post more after that. We were sad to find out in June that her speech therapist was moving on. We have been so pleased with what Jenny has done for Caitlyn! So Caitlyn will have a new therapist for summer, and then change to another one in September when school starts!

I decided this week that I don't take enough pictures of Caitlyn! I'm going to start taking more pictures, and will definitely post some on here! She is growing so fast. Over three feet tall, and 30lbs! We wouldn't mind a little bit of weight gain, but she's still eating, and that's what is important! Well, that will be all for now...

Stroll and Roll for Rett Syndrome!

Last weekend we went down to Puyallup for the Rett Syndrome Research Foundation Strollathon. www.rsrf.org We had a great time! Team Caitlyn brought in just under $2000!! I was amazed at all the support we received! Caitlyn was a little under the weather, but still enjoyed herself. My sisters family, Marsha, Jason and Trinity; my brother's wife Thomasina (Jim had to go to the democratic conference.); Caitlyn's grandparents and our best friend Kelli, and her son Jaymes all came out to walk with us. We all had a really good time! Kelli and I bought some raffle tickets, and I got a 1 hour massage, and 2 tickets to the flight museum! She got a bunch of stuff as well! Eric and I were a little nervous about seeing other families, but it ended up being a great experience! We will also be attending the Northwest Rett Syndrome Association conference in August. www.nwrettsyndrome.org We are really excited for that!

Thanks again to all of those who supported us financially and emotionally for our walk!

Caitlyn had her EEG on May 31st

On Wednesday, my mom and I took Caitlyn up to Children's Hospital at Providence for her EEG. She had to go in sleep deprived...Imagine in your mind an almost 3 yr old sleep deprived...She actually did great! The lady let Caitlyn just lay there while she put marks on her head. Then, Caitlyn's arms had to be wrapped up tight with a sheet so that I could hold her head still while the Tech. put he electrodes on her head. Caitlyn loves her hands, and did not like having them wrapped at all! She did put up with it tho. Then the test started. Caitlyn got to watch Barney, and we waited. They really wanted her to fall asleep, but she was definitely fighting it! She never did go to sleep all the way. After the scan, the Tech. said that depending on the doctor, they may want to repeat it. She said that Caitlyn entered a drowsy state about 5-6 times. Since she was fighting it, she kept pulling herself out of the drowsy state. The Tech. said that whenever Caitlyn would almost be asleep, something showed up on the scan, but since she never fully fell asleep, we don't know if anything would have come from it. We will find out the results from the doctor in a week or two..I will post more about it then.

Tomorrow is the Stroll-a-than in Puyallup to raise money for the Rett Syndrome Research Foundation! We are overwhelmed with emotion from the generous response we have received! I will post after the walk, hopefully with some pictures, so everyone can see how it went! We're hoping for good weather!

More update on possible Seizures

Today we spent a good part of the afternoon in the ER at Children's Hospital in Seattle. Caitlyn got to be transported via ambulance after having multiple episodes that the doctor said were probably seizures. Caitlyn was a trooper at the hospital. Happy most of the time. She even got overly excited when the nurse was getting ready to draw her blood, and left a nice little bite mark on my hand. The doctors consulted with neurology, and neurology felt that since we already had an EEG scheduled for May 31st, we'd be ok to wait. They gave a script for a seizure medication, and off we went. They did say if she has any more seizures to come back. Caitlyn's smile is what helped me get through the day. Thanks to Kelli and Jaymes for hanging out at the hospital with us. Caitlyn is doing better now...Took her new medicine like a champ, and fell fast asleep. Keep us in your thoughts.

Update from our Neurology Visit

Last Friday we went in for Caitlyn's Neurology appointment. Her grandma and mom went with her. She was very well behaved, and we all enjoyed the new building down at children's hospital in Seattle. Her doctor was very excited with Caitlyn's large motor progress! He did feel that there was a concern with her eye rolling. On May 31st we will be heading up to Everett Providence Hospital to have an EEG. We should know a week or two after that what's going to happen next. Keep us in your thoughts while we investigate exactly what is going on. We will update after we know something, and I will try to take a picture so that everyone can see what Caitlyn thought of her helmet!

Caitlyn's new friend

Caitlyn got a new friend! This is Toby, an 8 week old schnoodle. (poodle schnouzer mix) Toby is a great little puppy. He follows Caitlyn around trying to play with her. She's not quite sure what to think of him. I help her to pet him, and she smiles. When she is done, she gently pushes Toby away. I hope they will grow to be great friends.

New Pictures of Caitlyn

I just wanted to post these pictures that Eric took of Caitlyn today. You can see from the blurriness around her hands how much they are constantly moving. I think they even frustrate her at times. At night, she actually sleeps on her hands so that she can relax. It pains me some days to see how much they move. I wonder if it drives her crazy.

Hydro-Therapy and other Therapy news

Caitlyn got to start hydro-therapy back up this week! She has this amazing love of water! At home, she will go into the bathroom and hit the inside of the tub, telling us she wants to play in the water. So we got her back into hydro-therapy at her school. Thursday was her first day. Grandma got to take her, and she had a blast! She will alternate between hydro-therapy and regular physical therapy every other week. Her therapist is excited with her progress!

Caitlyn is also making great progress in speech therapy! Her therapist feels that she is making the choice of what she really wants about 60-70% of the time. She does this by pushing a button with a picture on a communication device. The device gives her two choices. She loves to push the button with the picture of the goldfish crack on it. Food is such an incentive for our little girl! I will try and get some pictures, if they'll let me.