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!!!

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.

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.

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!!

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!

Homework!

"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.

Update

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!

*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?

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...here 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!!!