Friday, December 29, 2006

A video Montage

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!

Wednesday, December 13, 2006

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.

Sunday, December 03, 2006

Update..It's been too long

It has been a long 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!!!

Monday, October 30, 2006

Update from our ENT visit (and a princess picture or 2)

Well, today was our visit with the ENT about Caitlyn's tonsils. She agreed that they are much larger than they need to be, and will be coming out. Her surgery will be in just 2 weeks on November 13th. Because of her seizures and her size, she will have to stay over night. We hope to be home by the evening of November 14th. We are hoping for a quick recovery. I will update after surgery on the 13th. Please keep us in your prayers.

Tuesday, October 24, 2006

Here's what's new!

Well, not a whole lot has changed around here. Caitlyn's potty success is very sporadic and we continue to learn together. She seems to be getting the whole thing a little bit. A good sign is that she peed on the floor while she watched daddy taking his sweet time putting the potty seat on the toilet! She just couldn't wait anymore!

Caitlyn had a fun bought with a sinus infection that she is finally beating. We have decided it is time to consult with an ENT. This is Caitlyn's bazillionth sinus infect, and we have had multiple doctors comment on the size of her tonsils. So, we got our referral and we will see the ENT on Monday October 30th. (incase anyone was wondering, the fancy long name for an ENT is Otolaryngologist. That's Ear, Nose and Throat doctor for the rest of us.) We are hoping they will have ideas for doing away with the ickies..We are preparing ourselves for needing to remove the tonsils..We'd love to see less illness in our house!

Well, that is about it for us for now. We will update after the appointment on Monday.

Wednesday, October 11, 2006

A Super Duper Huge Developmental Jump!!!!

i just had to share with everyone the wonderful news I recieved after coming home from class last night. Caitlyn went peepee on the potty at Grandma's house!!!!!! I am so very proud of my little girl!! So, we know it will be a long road, but are going to slowly start down the potty road...I feel like such a proud mommy right now!!!! Just wanted to share with everyone!!

Tuesday, October 10, 2006

October is Rett Syndrome Awareness month!!!

One of the Rett's in our lives...Caitlyn's stuffed dog. We went down for our appointment on January 27, but forgot to bring some toys for Caitlyn. We stopped at the Safeway, and had a lot to choose from because Valentines Day was just around the corner. In an attempt to make something positive with the word Rett, I named Caitlyn's stuffed dog Rett.

I know when everyone thinks of October in terms of medical awareness, you think if Breast Cancer, and the pink ribbons. Before January it was the same for us. October was the time when all of the pink ribbons showed up in the stores, and the check-out clerks at the grocery stores wanted you to donate. This year I am not thinking about the pink ribbons. I respectfully decline when I am asked to donate to Breast Cancer research.

Yes, I am a woman, and I have breasts. But the cause you donate to is so much more than that to me. (there's also the issue that we just don't have money to donate this year.) You see, October is Rett Syndrome Awareness month and that is our choice cause to donate for. Not just in October, but all year around. Yes I know people that have had breast cancer, and I pray for them and hope for success in their treatments. The thing is, my daughter has Rett Syndrome and if my money can make the hope and prayer for a cure more real, then that is where it will go! In honor of Rett Syndrome Awareness month, I wanted to write a little about what Rett Syndrome means in our lives, and how we came to where we are this October. (ok, it turned out being a lot...Read if you choose...)

Have you ever read the poem "Welcome to Holland?" It is the absolute best poem that presents an idea of what a parent goes through when they find out their child is disabled. I think these sort of feelings really hit me hard in February of 2005. Caitlyn was 18 months old, and had just started walking. She was very unstable on her feet, but we thanked God that the day had come where she could walk without our help. (little did we know that we should have been thanking God even more. Just a little more than half of girls with Rett Syndrome ever learn to walk without assistance.)

The reality of Caitlyn being different hit me when we were referred to have her evaluated for a birth-3 program. The main concern was that she was not babbling. We learned before the evaluation that Caitlyn would have to show more than a 25% delay in one or more area to qualify for early intervention services. Even with everything I was learning in school about childhood development, I secretly didn't want to think about that number...25% isn't bad, unless you think about it in more than one area. Well, Caitlyn qualified, and we started the in depth evaluations at The Little Red Schoolhouse. (our local birth-3 place.) At her very first IFSP (Individual Family Service Plan) we learned the results of those evaluations. Talk about a slap in the face! Caitlyn was about 20 months at the time of the evaluations. Imagine our shock when we read that Caitlyn's receptive (what she understood) and expressive (what she said) language development was at an 8-9 month level! She was a full year behind in her language development!

Time went by. Caitlyn couldn't feed herself with a spoon, but loved to color! A pen left in her reach meant that we would be washing walls! We invested in Crayola Color Wonder Markers, and Window Markers. Her walking was much much better. She still startled easily, but was doing really good! She was even starting to do some stairs, while holding both hands with an adult! Everything seemed to be improving except her speech. (she was able to learn to sign "more," which is something she has retained, and has been a God Send for us!) This was about September of 2005. Her speech therapist recommended we took her to see a Neurologist. She said it will take awhile to get in, but there is no hurry...We just want to make sure there isn't anything else causing her speech delay. So we scheduled our appointment for December 2, 2005.

December 2, 2005 would be the first time we heard anything about Rett Syndrome. We were told they wanted to test her for Rett Syndrome and Fragile-X to rule out. All we were told was that Rett Syndrome was mostly girls, and Fragile-X was mostly boys. (We were offered information handouts on both, but decided against it. No point in worrying ourselves, right?) They said they didn't expect anything to come out positive, but it would give them a direction to go after ruling these two out. So we had Caitlyn's blood drawn for the genetic testing, and scheduled our return appointment for January 27, 2006.

Caitlyn was still coloring like crazy, and ofcourse still very oral with everything...but used her hands pretty well. (so she couldn't use a spoon or have the pincer grasp, but we were happy with what she could do! Why do therapists always focus on the negative?) I'm the mommy, and I felt I needed to prepare myself for what might be around the corner, even if the neurologist was doubtful. So, I found the International Rett Syndrome Associations website. I read about wheel chairs, walkers, arm braces, seizures, scoliosis and much much more. One thing caught my eye. A very classic sign of Rett Syndrome was repetitive hand movements, and loss of purposeful use. Ha, I thought!!! It was like a thousand pounds had been lifted off of my shoulders! My Caitlyn could still finger feed herself, use both of her hands fairly well, and loved coloring!!!! I pushed those words "Rett Syndrome" out of my mind!

Not more than 2 weeks later, Caitlyn started tapping her chest in a funny way, and holding her hands together really close to her eyes. Some people laughed. People thought, "look she's pointing at her shirt!" Family asked, "is she signing?" We brought our concerns of this new behavior to Caitlyn's speech therapist. (Now remember, I had taken the "Rett Syndrome" vocabulary out of my mind.) Mind you, we loved Caitlyn's speech therapist! She was the absolute best! Her team at the early intervention program was excited about this new hand movement! They said it meant that she was becoming aware of her hands, and that it would make teaching her signs easier! ("more" was still the only one she had learned.) We took their explanation and moved on...

About mid January I started thinking about the Neuro appointment that we had coming up on the 27th. I read online some more about Rett Syndrome. In the course of a month, Caitlyn had lost interest in her love for coloring. She just couldn't calm her hands enough to make any marks. I re-introduced the world of Rett Syndrome into my mind just to be prepared. As I read on about everything, I felt my stomach creep up into my throat! I cried a lot in private. I didn't want to worry Caitlyn or her daddy...I knew in my mind that she was going to get a positive test result...I felt that if I prepared myself before the appointment, it would be easier.

That didn't help! I still lost it and started crying in the doctors office. I should have been prepared for the words when they told us Caitlyn's test for Rett Syndrome had come back positive. They said they were surprised, and even with the hands that had started she would not have received a clinical diagnosis. We were crushed, but at the same time a little relieved because Caitlyn didn't seem to have any of the tough issues related with Rett Syndrome.

Ofcourse that too has changed. Since January, Caitlyn has started having seizures, holds her breath, lost most purposeful use of her left hand, and about 50% of her right, and have started the challenge with weight gain. Of course there has been developmental gain since we found out too! Caitlyn can stand up in the middle of the room now, she goes up stairs holding a railing, and one hand. (still can't go down, but we're working on it!) She is learning to communicate with pictures and buttons. She absolutely loves preschool. Learning about Rett Syndrome didn't change Caitlyn at all. She is still the same, and knows no different, and for that we are thankful.

As the poem "Welcome to Holland" describes, there is a grieving process that goes on when you receive the news that your child is disabled. I have to admit I am still going through it...I have come along way, but still cry a lot. I also get very angry with it all. I have gotten more brave with taking Caitlyn out in public. She is growing up. We still get some stairs..Caitlyn is tall for her age and doesn't talk, so looks are inevitable. The one thing I still don't like to do is take her places where people know that she has Rett Syndrome. (with the exception of school and day care.) It's not that I'm ashamed of her syndrome, and people knowing. That's not it at all. I know people mean well, but I get tired of the pitiful looks and the "how are you" questions from everyone. It's just easier to stay away. I'd love to talk about something other than my daughter and her condition when I go places!

Thank you if you got this far...I just wanted to illustrate to those who may read and aren't aware of the challenges Rett Syndrome can cause how much can change. In less than a year, we have gone from being worried about speech delays to: seizures, breath holding, weight issues and Rett Syndrome. So, as you see those pink ribbons in the stores, and the commercials about Breast Cancer Awareness Month, please take a minute, and stop and think...October is also Rett Syndrome Awareness month. Spread the word, and educate the community! Thanks for reading!

Monday, October 09, 2006


"My bed is soft."

"My tractor is hard."

"My daddy's beard is rough."

"My fish tank is smooth."

So, no one told me my 3 year old would have homework! Well, Caitlyn came home on Thursday with her first "assignment." We were to go on a texture hunt for things that were smooth, rough, hard and soft. We helped Caitlyn feel some things around the house, then took pictures of the ones she was familiar with and liked. (daddy, fishy, bed and tractor." I wasn't sure how they were going to share what they had found, but I wanted her to be involved. So, I took the 4 pictures, and made a layout for her communicator. I programmed it with the captions you see above. That way, Caitlyn will be able to help share what she found on her texture hunt! It was a lot of fun to do. It is enjoyable to help find ways to include Caitlyn. She really feels good about being included.

We aime to make as normal of a life for Caitlyn as we can! What a sweet thing she is. We got an idea from another blog (thanks Doris!) to start taking pictures of things that Caitlyn eats so we can present them to her for choices...So, yesterday I took pictures of everything she ate. Ah the child does love choices! She likes honey with her peanutbutter instead of jam, although she gets to choose every day. If cheese is an option, she'll eat it all up until it's not a choice anymore. Then fruit is another favorite...Silly girl...a great eater. Tho she wont gain any weight! Well, that's all for an update for now.

Sunday, October 01, 2006


Well, it is time for an update! Caitlyn is loving preschool! She did great the first week. The second week started out strong, but Caitlyn ended up home because of a fever and some vomitting that we weren't sure what was causing it! (I'll get to that.) During the second week, Caitlyn really seemed distraut that all of the school buses were leaving without her! So we talked with her wonderful teacher and the para ed. ladies. They agreed that they would write a little note in a notebook so we could know how her day went. Caitlyn's third week started the beginning of her riding the bus to and from school! We have been very pleased with this arrangment so far! The teachers are really good about writing us notes, and it gives mommy some uninterrupted time for homework in the mornings! (Or going back to bed depending on how the morning went.) Caitlyn loves the bus! She gets off at home, and would rather run around outside then go inside for lunch. So we spend a little while playing outside before we make it inside! She is such a happy girl! She has done a great job of battling her first cold too! (well, the first one of the year)

Ok, back to Caitlyn's fever and vomitting. The fever came on and left two days later. We never really figured out what caused it. The vomitting however was occuring almost every evening at dinner time. Friday night when she threw up what she'd had for lunch, we decided it was time for a visit to the trusted doctors at the Children's Hospital ER. They did an x-ray, and we finally had our answers! It turned out Caitlyn had a stool back up! So we went home with a script for Miralax, and some relief for our little girl!!!!

Well, that's about it for our update. Tomorrow Caitlyn has her very first dentist appointment then on Tuesday we go back to the Neurologist. We will update everyone later on in the week. Thanks for following our journey!!

Some sweet pictures

Cuddles with Daddy at bed time just last night.

"Mom, you wanna put that camera down and help me up onto the deck?"

" Never mind! I can do it myself!"

Caitlyn and her Grandpa! They sure do cuddle go together!

A very happy little girl at a friends birthday party! She really is starting to like being around other kids!

Wednesday, September 13, 2006

*Sniff Sniff*

Come on, Mom! Let's go!!!!

I am officially the mother of a preschooler! I have shed a few tears as she started school this week. What a big girl! The first couple of mornings we drove her in. I can't believe how much she has grown up! We waited by the buses, and then she walked in with her class...She didn't need mommy and daddy walking in with her! Then, at the end of class (2 1/2 hours a morning) we wait again, and she walks out like a big girl with her class! The transition as been great! She has been so excited when we get home, and in a great mood! Then today it was like the beginning all over...

We decided that Caitlyn would ride the bus to school in the morning to save some time, cuz Mommy wouldn't have to get ready to leave the house. So, this morning was Caitlyn's first trip on the big girl bus! I took her outside at about 8:05am to meet the bus...About 5 minutes later it arrived. Her driver is really nice! Caitlyn pulled her leg up high enough to make that first step. The driver helped her into the seat, and buckled her in. (state law requires her to have a car seat.) She looked a little nervous as I waved, but she wasn't crying. Mommy on the other hand...that's another story...I waved and off drove the bus with my baby on board! I proceeded to go back inside with my eyes full of tears. So when I went to pick up Caitlyn today, she tried to steer me towards the buses!! She wanted to go home on them! We'll have to think about that one some more....I just like being able to hear from the teacher how her day went, since she can't tell me herself...

Let me tell ya...I can't believe how much of a baby itch I have after sending my daughter to preschool! She is a big girl now! The only signs we still have of her being a baby is diapers! I have been looking for the pause button...I haven't found it yet...Have you seen it?

Tuesday, September 05, 2006

Getting Creative with PediaSure: Take 2

Just when we were about to throw in the PediaSure towel, I decided to give it another shot...If you read the original Getting Creative with PediaSure post, you are familiar with the challenges of getting a picky drinker to take it on. After success with freezing it, a new challenge developed: Timing it right throughout the day so that she wasn't full, and would still eat food. Some recent weather changes have caused her a little bit of an appetite change. She hasn't been too interested in food of any kind...Sunday morning we all slept in, so we had a snack then had lunch...She was doing great...Then all of the sudden, with out and warning coughs or anything, out it all came! Since then, she hasn't eaten much in a sitting...

So, I went to the store and got a couple new PediaSure flavors to try out: Strawberry and Vanilla. Caitlyn's grandma suggested using it whenever we would use milk, just to add calories...So, we've tried that once so far for a typical breakfast:
  • Corn Flakes
  • 1/2 a banana cut up in cereal
  • Banana Cream flavored PediaSure, instead of milk...

Well, Eric thought it stunk, and was gross...But not Caitlyn! She ate it up just like she does with the milk in it! So we'll keep up with that. She doesn't get much, but it does add a little bit of calories! Lastly, I am pleased to report that the Strawberry PediaSure was a huge hit! She even drank it! Slowly, but there wasn't any spitting it out!!!! Hopefully this will work after all! Then again, school starts next week..And who know what will happen when Caitlyn comes home with her first bug. Stay tuned!

Another Poem for my sweet girl!

I had forgotten how relaxing, and yet stressful, it can be to come up with just the right words to tell a story. I took this picture after Caitlyn's bath a couple of weeks ago. I was trying to capture the spirit in her eyes. (I wasn't counting on the bare shoulder, tho...I hope it's not too risky.) Anyway, so I did a scrapbook page to go with the picture...And a poem came out of it is

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.

That's it...I hope you enjoy the poem. Caitlyn's daddy liked it...He said he was impressed that I wrote it. I guess it's time to bring home my writings from my mom's house. It was my outlet in highschool! Hopefully I will find the inspiration to write more in the future!

All about music

As you can hear, we finally have our theme song up and running! "In My Daughter's Eyes," by Martina McBride. This song just seems so perfect for Caitlyn.

My Attempt at a sales pitch....Whether you are the parent of friend of another Rett girl, or know our family directly, please check out this link that I found through the Rettnet. If you have children in your family that loves to dance, please check out the Girl Power 2 Cure! cd. All the proceeds for this cd go to Rett Syndrome Research. We are so close to reaching a cure. (well, closer than we were 5 years ago.) Researchers know that Rett Syndrome is caused by a mutation of the MeCP2 protien on the X chromosome. (technical terms I never knew before Caitlyn) They have been able to reverse the symptoms in some lab rats....Please check out this cd. If you think your kids, or any kids you know might like the music purchase the cd and help fun research for Rett Syndrome. Thank you so much!

A general update: We are all doing well. Caitlyn and mommy are ready for summer to be over. We have an open house Thursday September 7th at Caitlyn's school. Then on Monday she starts school! My baby is growing up! I'm sure she will enjoy the break from me, as will I. The following week mommy jumps back into the school scene with three classes this quarter: Creative Expressions: teaching young children about art; Special needs children in Early Childhood Education; and another one that I can't remember the title of at this time, but is a class on Curriculum development. I am really looking forward to classes this quarter! It is the starts of my 3rd year in a 2 year program. I guess having children makes it all go a little slower! The diagnoses of Caitlyn in January made for an emotional winter and spring quarter. Luckly my teachers know Caitlyn because she attends the campus childcare, so they knew her history, and our journeys to helping her succeed. Unfortunately, I had to put off one of my required courses, setting me off for Graduating this Spring. As of today, I will graduate some time next year. I'm sure it will all be worth it when I'm all done!

Don't forget to check out the Girl Power 2 Cure! cd!!!

Tuesday, August 29, 2006

SSI Continued

Ok, so maybe SSI isn't all bad. The problem really is the men in our lives...(love ya Eric!!) No, it's not fully his fault. What happened is that the address on his request to be the payee was different than the address on everything else because they took it off of his drivers license. When you change your address with the DOL they don't require you to get a new license, so his license has an address from 3 years ago! So a decision was made yesterday and we have been reinstated!!! Thank you so much Marsha!!!!!

Frozen PediaSure continues to be a success! Who would have thought something could be so simple!! I really think PediaSure should come out with a custard or IceCream type thing. I vote for a custard! I can't believe that I'm the only parent who's child wouldn't drink it!

Monday, August 28, 2006


What a day! That's about all I can say. So, if you are another parent with a special needs child, you know may know something about SSI. Well, we were sitting around this morning thinking about bills and such, so Eric (daddy) called Caitlyn's social worker with the Social Security Administration to find out how much her check was going to be at the end of the week. At which time her case worker ever so kindly (really, she is a nice lady, and we know it's not her fault) informed us that we were no longer receiving benefits for Caitlyn. That means as of August 31 she wont have any health insurance. It also means that we are going to have to figure out a way to come up with rent money because she wont be getting a check this week! You may be wondering "why on earth have they cut off your benefits?" Well, the reason we received is...There is this wonderful thing set up for disabled people so they can collect benefits while the Social Security Administration makes their final decision. It is set up so there is no hardship on families while SSA researches the claim and gets all the info they need. This is where our benefits have been coming from. We were told today that we have reached the end of the 6 months. Our case worker doesn't know why they haven't made a final decision, all she knows is she doesn't have record of one, therefore we cannot receive payment, and Caitlyn wont have health insurance next month.
It is common for SSI to want to do there own exams and such, which I totally understand. The thing is we have not received any formal contact or any request for more information from anyone. This is such bull!!!! (Can you tell it's just a tad frustrating to us?)

Now for a little good news. Caitlyn and I had a wonderful day today! We went and hung out at Grandma's house again so that I could type up a letter and fax it to get something started. She was so well behaved! Didn't get into anything in Grandma's office, just sat on the little couch looking out the window. We had a "picnic" on the living room floor. We stayed a little bit later that last time, then it was off to catch our bus! Caitlyn really loves riding the bus! We decided to stop off at McDonalds with our last $8 bucks for an early dinner. Aside from throwing her head back on the seat and bumping it which upset her, she was great at McDonalds! Then back to the bus and home we came. She passed out at 7:30 tonight! I love days like today that are so happy and perfect!

Sunday, August 27, 2006

It is working like a charm!!

I just had to say that the frozen PediaSure is working like a charm!! Caitlyn gets her special little dish of "Ice Cream" three times a day. So, we are able to get one can in her without having to fight her to drink it!! If anyone ever reads this that works for PediaSure, make the suggestion that they do Ice Cream!

I am here to tell everyone today that Caitlyn is your typical 3 year old in more and more ways every day! For example, when I have something to tell her and she is interested in it, she makes eye contact and listens! Tonight we talked about dreams. Ever since I wrote A Poem For An Angel last month, I have thought about Caitlyn and her dreams. Tonight I said to her "When you see your friends in your dreams, do you talk to them?" She kept eye contact the whole time I asked her, and then started hyperventalating and grunting like she does when she gets really excited about something. (usually food) Now yes I'm the mom and am looking for any sign of communication in my little girl, but I took this as a yes! It must be so frustrating to her to have so much inside her head that she wants to tell us, and no way of getting it out. Slowly but surely we will all learn together.

Yeah!!! My laptop cord has been ordered and should be here by the end of the week. I will be sure to post new pictures then! *sigh* my baby starts Pre-School in just 2 weeks!!

Friday, August 25, 2006

Getting Creative with PediaSure!

So I'm know I'm not the first person to venture into the world of PediaSure with a child who is so very picky about what they drink. Caitlyn will drink any kind of juice, flavored water or plain water. We can sometimes get her to drink a little milk here and there...But not enough to make the introduction of PediaSure a smooth one! So our challenge has began. We need to get some weight on our girl. Day one gave us no results...Banana was our flavor of choice, and Caitlyn wouldn't even drink half a bottle. (Our goal to start with is a bottle a day.) So, we decided to start day two with a new flavor. We tried chocolate. She drank a little more than 1/2 a bottle. Ok, so I lied and told her it was "Chocolate Milk." (Have any other parents tried this stuff? Do I blame her for not wanting it, no not at all!) After a recommendation from Grandma, Caitlyn and I picked up Strawberry Icecream today! For day three, Our pediasure came in the following form:
  • One scoop of Strawberry IceCream
  • 1/2 a bottle of Banana Cream flavored PediaSure
  • 1/2 a banana

I threw it all in the bender, put it a tupperware container and froze it. My thinking is: Caitlyn will eat just about anything! A special IceCream treat just for her! So, after she got up from her nap, we gave it a shot...Success!! She will "eat" her PediaSure, but not "drink" it. So, I decided to try just freezing the PediaSure in small containers. I divided one 8oz. bottle into 3 containers and it is now freezing. We will try them tomorrow. My thinking: She did like the mixture from today, but it was cold, and too much. She only ate half of it. So, tomorrow she will get 1/3 of a bottle at three different points in the day. I will let everyone know if it is a success!

Wednesday, August 23, 2006

We are in the process of adding music

After reading another blog with back ground music, I decided to figure out how to do it for ourselves. We wanted to pick the perfect song to represent Caitlyn. Right now, it is "Angels Among Us." The final decision is "In My Daughter's Eyes (Everyone is Equal)." I hope to have it up by next week. Give some feedback and let us know what you think of our musical touch!

Tuesday, August 22, 2006

Tall and Skinny...3 year check up

Well, we took Caitlyn in for her 3 year check up today. Let me first just tell you how good it feels to go in for a typical doctors appointment with a special needs child!! Caitlyn did wonderful!! She is 39 inches tall (that's 3 feet 3 inches...At what point do we stop saying "she is ____ inches tall"?) and weighed 30.2 lbs. Her doctor was on with us with our concerns that she hasn't been able to keep on any weight in the last year. She has gained and lost the same 1 pound like 10 times! So, we are going to start her on some pediasure to try and get her to gain some weight!

We also got our script for diapers!!!! Yeah!!! Since she is 3 now, and diagnosed and registered with a disability we are eligible to have diapers payed for! We are very excited about this! Now if only we can get the insurance to pay for the pediasure which goes for about $8.50 for either 6 or 8 cans. (I can't remember) And if we start out at a can a day...that's 8.50 a week...*sigh* no one ever said parenting was cheep!

Caitlyn got her Chicken Pox shot today, and also had blood drawn. She cried a little with the shot. She cried when they drew her blood, not because there was a needle in her arm but because mommy was holding her still! She did great, and earned herself a trip to McDonalds for lunch! It isn't very often that we actually go inside...I admit, I don't particularly care for the stares that we get when our child starts screetching and screaming...Some days I can just laugh it off, but it seems like for some reason places we go have been oddly quiet lately! Well, today we gave it a shot. Caitlyn did great!!!!!!! She sat on the bench with no booster seat, and ate her lunch one bite at a time. I was really proud of her!

Since she did so good at McDonalds, I decided maybe we'd go hang out at Grandma and Grandpa's house to get a change of scenery! So Daddy dropped us off. (Our car broke down yesterday, so we are living with only one for now.) Caitlyn and I hung out, cuddled and found Cheetos at Grandma's house! (Caitlyn LOVES Cheetos!) Then we road the bus back home! Caitlyn thought that was the coolest thing of the whole day! Ah to be 3 and so easily pleased! She is such a joy to us!!

If you also follow the link to Mommy's Scrapbooking, please be advised that Mommy's computer is out of service until we can buy a new plug..."Toby was a blessing during his short stay with us, but he did chew on a lot of stuff!" I have to use Daddy's computer until we get a new plug, and all of my scrapbooking stuff is on mine!

*My baby starts Pre-School in less than 3 weeks :(*

Sunday, August 06, 2006

Arm Braces

When Caitlyn was first diagnosed, and I began to read about arm braces, I told myself..."I'll never do that..It just doesn't seem cool...and I don't want my daughter to stand out!" Well as you can see from the picture, We are trying it out. She doesn't cry. She puts up well with them. I wont make her wear them all of the time...Just some of the time so that her poor little hands can have a break! She is still able to touch her hands together...she can still pick up toys and climb on the couch. This is just to give the mouthing a break. Her poor little fingers have gotten to where they are wet all the time! These braces are just simply a child's pair of wrist guards for rolling blading. They seem to work ok, but are a little bit more stiff that what I'd like. I think we're going to try and come up with something different. We'll do anything for Caitlyn...If the time comes when she fights the braces, and doesn't like them, we'll discontinue use for awhile. For now, we'll use them a little here and there so she can have a break!

So much information!!!

Our heads are exploding today with so much information! We got home tonight from Portland, OR. We had an exciting time at the NW Rett Syndrome Foundation Conference! This picture is of all the girls together...You can see the range of abilities. Our Caitlyn is the second girl in from the right in front. The lady behind her is the area "expert" Dr. Budden. We learned so much...A lot about genetic stuff that we had a little trouble processing...Some massage techniques...And something very interesting...Alot of Rett girls deal with bad constipation. Well they have found that girls in Italy don't deal with it. Can you guess why? Well the speculation is that it's the olive oil! So, I think we may give that a shot! It can't hurt, and it'll boost her calorie intake! It was sooooo exciting to see the older girls that were still walking, and able to feed themselves! I know that every girl is different, but Caitlyn is young and if we can teach her now, just maybe....just maybe she'll catch on and be a feeding expert!!!

The area doctor met with us Friday night. She is so nice! I think we might start taking Caitlyn down to Portland for her checkups. It would be a bit of a drive...But I think it would be worth it to take her to someone that sees Rett girls all the time! Dr. Budden said that had she seen Caitlyn for the first time this weekend before having a blood test, she would have clinically diagnosed her. She has the breathing issues common with Rett Syndrome (imagine your child going from heavy shallow breathing to holding their breath in a matter of minutes. I think it makes my heart stop!) She has the crazy hands, the crossing eyes, partial seizures...

I feel like after this weekend I can say "My daughter has Rett Syndrome," and feel a little less sadness in my heart. For the first time I was able to take a stand for my disabled daughter. When we left on the train I went and asked at the counter..."We are traveling with a disabled child. Would it be possible to get an early seat assignment and board early?" Our request was granted and we boarded the train...

Today begins my journey as an advocating mother of a disabled child. I have the strength to handle life one day at a time, learning from my special child. It was a great experience. We will go again next year. The conference will be in Seaside, OR! I can't wait!!!

Happy Birthday, Caitlyn

Caitlyn turned 3 on Saturday, August 5th!!! Three years ago today she wasn't even 24 hours old. I can't believe that just 3 years ago are biggest concern was breast feeding! So much has happened since August 5, 2003. The biggest of which has just been in the last 6 months...At age 1, we were so blessed with a fast crawler! She was saying momma, dadda and waving goodbye. She seemed so on track with everything. Our biggest concern was trying to figure out why she wouldn't chew anything without a crunch to it! At age 2, Caitlyn had been walking for 6 months. We weren't hearing momma and dadda anymore and she wasn't waving goodbye. She was seeing a speech therapist, a physical therapist and going to a group class 2 mornings a week. She had seen a speech therapist who specialized in eating difficulties. Her chewing had improved!

That brings us to now. Our bright and shining 3 yr old is the light of our life! We have known about Caitlyn's Rett Syndrome for 6 months now. We no longer can think that all of her delays were caused by a lack of oxygen at birth. We know now what she has, and she is still Caitlyn...Even with the day to day challenges of bring up a special needs child, we remember that Caitlyn is still a typical 3 yr old in so many ways! Here's to many more years to come!!!!!

Wednesday, August 02, 2006

Are we crazy?

Tomorrow morning we are leaving to go to a Rett Syndrome Conference put on by the Northwest Rett Syndrome Foundation. Here's the crazy part...We decided to take the train instead of driving. It is a 4 1/2 hour ride. Hopefully it will be a good experience for us. Since Eric's car accident last year, he just doesn't like to sit that long...This will give him the opportunity to walk around. Caitlyn doesn't like to sit that long either! I'll be sure to post and let everyone know how it went. We'll be back Sunday evening! I am excited to meet some other families that are dealing with the same Rett monster we deal with. It should be fun!

Monday, July 31, 2006

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!!!!

Saturday, July 29, 2006

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!!

Saturday, July 22, 2006

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 baby will be 3 in 2 weeks! My how time flies!!!

Thursday, July 20, 2006

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.

Wednesday, July 19, 2006

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!

Monday, July 17, 2006

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!!!

Thursday, July 13, 2006

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.

Wednesday, July 12, 2006

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!

Monday, July 10, 2006

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 though they were normal!

Saturday, July 08, 2006

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!

Friday, July 07, 2006

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!

Monday, July 03, 2006

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!

Saturday, June 24, 2006

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...

Saturday, June 10, 2006

Stroll and Roll for Rett Syndrome!

Last weekend we went down to Puyallup for the Rett Syndrome Research Foundation Strollathon. 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. We are really excited for that!

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

Friday, June 02, 2006

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!

Friday, May 19, 2006

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.

Thursday, May 11, 2006

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!

Tuesday, May 09, 2006

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.

Sunday, April 30, 2006

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.

Friday, April 28, 2006

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.

Possible Seizures?

When Caitlyn was diagnosed with Rett Syndrome, we were given the news that she could develop seizures at some point. Our chances were 75-85% that she would develop them at some time. Well, she has been having these episodes of rolling her eyes into the back of her head. We decided it wasn't something we wanted to sit around waiting to see if it went away. So, on May 5th we'll head to the neurologist to see if it is anything. Please think of us as we make this journey to yet another appointment.

Sunday, April 09, 2006

Mastering the Stairs!

Caitlyn's therapists have worked so hard with her on going up stairs. They started with simply layering mats for her to walk up. Well, she can do it! This week at daycare she discovered the four stairs up to their loft. There is a railing, and she went up all by herself! I am so proud of my baby girl!!! To go down, she had the choice of a ramp or the stairs again. She gripped the railing with both hands, and went down the stairs sideways!!! Each and every new thing that she does makes us celebrate. The littlest sign of furthering development gives us all hope that she will continue to do more things. Another thing that she has mastered is standing up in the middle of the room! When Caitlyn figured this one out, she would drop to her knees over and over again just so she could stand up in the middle of the room. We are so excited that we can share our joy with everyone!

Thursday, March 16, 2006

Chicken Pox?!?!?!

On Sunday night we took Caitlyn to the ER because she was having a lot of trouble breathing. The doctors said it was nothing, and sent us on our way. On Monday, we received a call that she had been exposed to the Chicken Pox while we were there. So, Caitlyn is stuck home for this week and next until we know if she ends up with them. (Aside from going to Grandma's house.) I will post next week to let everyone know what the outcome of her exposure what.

*Edited to say Caitlyn luckly didn't end up getting the Chicken Pox.


Caitlyn is growing so fast. She is doing well, although we are dealing with it a bad a cough. We're are hoping it will go away soon. All of her doctors appointments have gone well. Her genetics doctors said her spine looks great!!! (scoliosis can be a side effect of Rett Syndrome.) It is hard to tell where our journey will take us. Caitlyn is shocking everyone as she continues to learn to do stuff. Just this week she started standing up in the middle of the room on a regular basis. Eric said he has seen her do it once or twice, but it is much more regular!!! It is so exciting! We never thought she would be able to!
Right now Caitlyn's all time favorite things are books, (though we have had to switch to more soft fabric books because she has taken to eating the cardboard ones) and her stuffed doggy that is named "Oggie Doggy." Once and a while she actually says oggy!!!! We are so proud of everything she is doing!!!!

Monday, February 27, 2006


On January 27, 2006 Caitlyn was diagnosed with Rett Syndrome. I thought I'd start this blog so that her friends and family could follow her progress and development. Her latest thing is she is saying "daddy"!!! We are so excited to hear it. We know that the words may not stick around, and are so pleased to hear what we do! We will continue to post so that everyone can know how Caitlyn is doing.