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