Friday, December 29, 2006
I hope everyone had a good Holiday! We sure did. It was great to spend time with family. We missed seeing my sister and her family this year, but charished the time we had together at Thanksgiving. Since my parents recieved their gift, I thought I'd share it with everyone else. It was fun to make!
On a happy note, we are back on the potty training band wagon after a break after surgery. Caitlyn is doing great! She got a one-touch communicator that we can put on the wall, so that Caitlyn can let us know when she needs to go. For now, we are visiting the bathroom every 1 to 1 1/2 hours. Today is the best day, so far. She goes with each visit to the bathroom, and has been dry all day! We are very proud of her!
Wednesday, December 13, 2006
We go back to the Neurologist on January 9th. We will be sure to update after that appointment. I will, of course try my hardest to update before that! Caitlyn's grandma and I will be taking her to the Parent-2-Parent holiday party this weekend. I am excited to do that! Hopefully she will like Santa! We will see.
Sunday, December 03, 2006
First...Caitlyn's Tonsil surgery update: We had a horrible surgery time, not going in until 12pm! Caitlyn hadn't eaten since 6am and was not a happy camper! The surgery went well, lasting only 10 minutes. They told us how well it went, and that she was waking up ok. We then went up to her room to wait for her. She came up at about 2:00. She was asleep, but then when they moved her into the bed in the room, she woke up. She was way over stimulated, but seemed to be doing fine. (a little drugged from the pain meds they gave her during surgery) The nurse came in to make sure her stomach was "awake" and check her vitals. We were given the go ahead to start with some ice cream and jello. She was doing great! Even ate some mashed potatoes and spagetti-o's for dinner! She started getting sleepy, so we tried to get her comfortable for going to sleep. I requested her seizure meds early, but they had been ordered for 8pm and it was only 6:30! Stuff then got a little scary..
Caitlyn started bleeding. I'll spare all my readers the graphic details..But it was very very scary as the parent! She lost about 200-300 cc's of blood. (the nurses estimate) The ENT team came in to check, and said it had clotted. But she would not swallow anything. Which means we couldn't get pain meds or seizure meds in her. We did Tylenol from the other end just to keep her comfortable so she could sleep. She didn't complain of the pain unless we were trying to get her to drink. She just lay on her side drooling everywhere! We slept fine the first night.
We woke up Tuesday morning to the ENT team in the room doing their rounds. Caitlyn was sound asleep, and they decided to look in her throat! Silly doctors! Anyway, they took a look and made the decision to take her back into surgery to cut the clot and re-cauterize. She didn't get to have breakfast, but that's ok..I don't think she would have eaten anything! It was also decided that since she started out doing ok after Monday's surgery but then went down hill, we would be staying Wednesday night as a precaution. She came out of surgery fine, and was more relaxed in her room. She rested for awhile. Then after pleeing with her nurse, we were able to disconnect from the IV for an hour. We took her on a wagon ride to the play room. She was very happy walking around and dancing! She wasn't all that stable, but seemed to be doing ok.
Wednesday morning came, and we were doing great! She ate real food for breakfast and lunch! Was very happy to be eating something she could chew! We got to go home! We were doing good at home on Thursday. We held her down for pain meds so that she would continue to drink. Friday she had a really rough day. We couldn't get back on top of the fluids, and ended up in the ER on Saturday for IV fluids. They gave her a bag, changed her pain med and sent us on our way. She stayed on the heavy duty pain meds for another 2 days, then we went down to just Tylenol. By thanksgiving she was doing great!
Today, at 3 weeks post-op she is eating more than she ever did before surgery! We are very happy and hope that this means we will see some weight gain!!!
Monday, October 30, 2006
Well, today was our visit with the ENT about Caitlyn's tonsils. She agreed that they are much larger than they need to be, and will be coming out. Her surgery will be in just 2 weeks on November 13th. Because of her seizures and her size, she will have to stay over night. We hope to be home by the evening of November 14th. We are hoping for a quick recovery. I will update after surgery on the 13th. Please keep us in your prayers.
Tuesday, October 24, 2006
Caitlyn had a fun bought with a sinus infection that she is finally beating. We have decided it is time to consult with an ENT. This is Caitlyn's bazillionth sinus infect, and we have had multiple doctors comment on the size of her tonsils. So, we got our referral and we will see the ENT on Monday October 30th. (incase anyone was wondering, the fancy long name for an ENT is Otolaryngologist. That's Ear, Nose and Throat doctor for the rest of us.) We are hoping they will have ideas for doing away with the ickies..We are preparing ourselves for needing to remove the tonsils..We'd love to see less illness in our house!
Well, that is about it for us for now. We will update after the appointment on Monday.
Wednesday, October 11, 2006
Tuesday, October 10, 2006
I know when everyone thinks of October in terms of medical awareness, you think if Breast Cancer, and the pink ribbons. Before January it was the same for us. October was the time when all of the pink ribbons showed up in the stores, and the check-out clerks at the grocery stores wanted you to donate. This year I am not thinking about the pink ribbons. I respectfully decline when I am asked to donate to Breast Cancer research.
Yes, I am a woman, and I have breasts. But the cause you donate to is so much more than that to me. (there's also the issue that we just don't have money to donate this year.) You see, October is Rett Syndrome Awareness month and that is our choice cause to donate for. Not just in October, but all year around. Yes I know people that have had breast cancer, and I pray for them and hope for success in their treatments. The thing is, my daughter has Rett Syndrome and if my money can make the hope and prayer for a cure more real, then that is where it will go! In honor of Rett Syndrome Awareness month, I wanted to write a little about what Rett Syndrome means in our lives, and how we came to where we are this October. (ok, it turned out being a lot...Read if you choose...)
Have you ever read the poem "Welcome to Holland?" It is the absolute best poem that presents an idea of what a parent goes through when they find out their child is disabled. I think these sort of feelings really hit me hard in February of 2005. Caitlyn was 18 months old, and had just started walking. She was very unstable on her feet, but we thanked God that the day had come where she could walk without our help. (little did we know that we should have been thanking God even more. Just a little more than half of girls with Rett Syndrome ever learn to walk without assistance.)
The reality of Caitlyn being different hit me when we were referred to have her evaluated for a birth-3 program. The main concern was that she was not babbling. We learned before the evaluation that Caitlyn would have to show more than a 25% delay in one or more area to qualify for early intervention services. Even with everything I was learning in school about childhood development, I secretly didn't want to think about that number...25% isn't bad, unless you think about it in more than one area. Well, Caitlyn qualified, and we started the in depth evaluations at The Little Red Schoolhouse. (our local birth-3 place.) At her very first IFSP (Individual Family Service Plan) we learned the results of those evaluations. Talk about a slap in the face! Caitlyn was about 20 months at the time of the evaluations. Imagine our shock when we read that Caitlyn's receptive (what she understood) and expressive (what she said) language development was at an 8-9 month level! She was a full year behind in her language development!
Time went by. Caitlyn couldn't feed herself with a spoon, but loved to color! A pen left in her reach meant that we would be washing walls! We invested in Crayola Color Wonder Markers, and Window Markers. Her walking was much much better. She still startled easily, but was doing really good! She was even starting to do some stairs, while holding both hands with an adult! Everything seemed to be improving except her speech. (she was able to learn to sign "more," which is something she has retained, and has been a God Send for us!) This was about September of 2005. Her speech therapist recommended we took her to see a Neurologist. She said it will take awhile to get in, but there is no hurry...We just want to make sure there isn't anything else causing her speech delay. So we scheduled our appointment for December 2, 2005.
December 2, 2005 would be the first time we heard anything about Rett Syndrome. We were told they wanted to test her for Rett Syndrome and Fragile-X to rule out. All we were told was that Rett Syndrome was mostly girls, and Fragile-X was mostly boys. (We were offered information handouts on both, but decided against it. No point in worrying ourselves, right?) They said they didn't expect anything to come out positive, but it would give them a direction to go after ruling these two out. So we had Caitlyn's blood drawn for the genetic testing, and scheduled our return appointment for January 27, 2006.
Caitlyn was still coloring like crazy, and ofcourse still very oral with everything...but used her hands pretty well. (so she couldn't use a spoon or have the pincer grasp, but we were happy with what she could do! Why do therapists always focus on the negative?) I'm the mommy, and I felt I needed to prepare myself for what might be around the corner, even if the neurologist was doubtful. So, I found the International Rett Syndrome Associations website. I read about wheel chairs, walkers, arm braces, seizures, scoliosis and much much more. One thing caught my eye. A very classic sign of Rett Syndrome was repetitive hand movements, and loss of purposeful use. Ha, I thought!!! It was like a thousand pounds had been lifted off of my shoulders! My Caitlyn could still finger feed herself, use both of her hands fairly well, and loved coloring!!!! I pushed those words "Rett Syndrome" out of my mind!
Not more than 2 weeks later, Caitlyn started tapping her chest in a funny way, and holding her hands together really close to her eyes. Some people laughed. People thought, "look she's pointing at her shirt!" Family asked, "is she signing?" We brought our concerns of this new behavior to Caitlyn's speech therapist. (Now remember, I had taken the "Rett Syndrome" vocabulary out of my mind.) Mind you, we loved Caitlyn's speech therapist! She was the absolute best! Her team at the early intervention program was excited about this new hand movement! They said it meant that she was becoming aware of her hands, and that it would make teaching her signs easier! ("more" was still the only one she had learned.) We took their explanation and moved on...
About mid January I started thinking about the Neuro appointment that we had coming up on the 27th. I read online some more about Rett Syndrome. In the course of a month, Caitlyn had lost interest in her love for coloring. She just couldn't calm her hands enough to make any marks. I re-introduced the world of Rett Syndrome into my mind just to be prepared. As I read on about everything, I felt my stomach creep up into my throat! I cried a lot in private. I didn't want to worry Caitlyn or her daddy...I knew in my mind that she was going to get a positive test result...I felt that if I prepared myself before the appointment, it would be easier.
That didn't help! I still lost it and started crying in the doctors office. I should have been prepared for the words when they told us Caitlyn's test for Rett Syndrome had come back positive. They said they were surprised, and even with the hands that had started she would not have received a clinical diagnosis. We were crushed, but at the same time a little relieved because Caitlyn didn't seem to have any of the tough issues related with Rett Syndrome.
Ofcourse that too has changed. Since January, Caitlyn has started having seizures, holds her breath, lost most purposeful use of her left hand, and about 50% of her right, and have started the challenge with weight gain. Of course there has been developmental gain since we found out too! Caitlyn can stand up in the middle of the room now, she goes up stairs holding a railing, and one hand. (still can't go down, but we're working on it!) She is learning to communicate with pictures and buttons. She absolutely loves preschool. Learning about Rett Syndrome didn't change Caitlyn at all. She is still the same, and knows no different, and for that we are thankful.
As the poem "Welcome to Holland" describes, there is a grieving process that goes on when you receive the news that your child is disabled. I have to admit I am still going through it...I have come along way, but still cry a lot. I also get very angry with it all. I have gotten more brave with taking Caitlyn out in public. She is growing up. We still get some stairs..Caitlyn is tall for her age and doesn't talk, so looks are inevitable. The one thing I still don't like to do is take her places where people know that she has Rett Syndrome. (with the exception of school and day care.) It's not that I'm ashamed of her syndrome, and people knowing. That's not it at all. I know people mean well, but I get tired of the pitiful looks and the "how are you" questions from everyone. It's just easier to stay away. I'd love to talk about something other than my daughter and her condition when I go places!
Thank you if you got this far...I just wanted to illustrate to those who may read and aren't aware of the challenges Rett Syndrome can cause how much can change. In less than a year, we have gone from being worried about speech delays to: seizures, breath holding, weight issues and Rett Syndrome. So, as you see those pink ribbons in the stores, and the commercials about Breast Cancer Awareness Month, please take a minute, and stop and think...October is also Rett Syndrome Awareness month. Spread the word, and educate the community! Thanks for reading!
Monday, October 09, 2006
"My daddy's beard is rough."
So, no one told me my 3 year old would have homework! Well, Caitlyn came home on Thursday with her first "assignment." We were to go on a texture hunt for things that were smooth, rough, hard and soft. We helped Caitlyn feel some things around the house, then took pictures of the ones she was familiar with and liked. (daddy, fishy, bed and tractor." I wasn't sure how they were going to share what they had found, but I wanted her to be involved. So, I took the 4 pictures, and made a layout for her communicator. I programmed it with the captions you see above. That way, Caitlyn will be able to help share what she found on her texture hunt! It was a lot of fun to do. It is enjoyable to help find ways to include Caitlyn. She really feels good about being included.
We aime to make as normal of a life for Caitlyn as we can! What a sweet thing she is. We got an idea from another blog (thanks Doris!) to start taking pictures of things that Caitlyn eats so we can present them to her for choices...So, yesterday I took pictures of everything she ate. Ah the child does love choices! She likes honey with her peanutbutter instead of jam, although she gets to choose every day. If cheese is an option, she'll eat it all up until it's not a choice anymore. Then fruit is another favorite...Silly girl...a great eater. Tho she wont gain any weight! Well, that's all for an update for now.
Sunday, October 01, 2006
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!!
Wednesday, September 13, 2006
I am officially the mother of a preschooler! I have shed a few tears as she started school this week. What a big girl! The first couple of mornings we drove her in. I can't believe how much she has grown up! We waited by the buses, and then she walked in with her class...She didn't need mommy and daddy walking in with her! Then, at the end of class (2 1/2 hours a morning) we wait again, and she walks out like a big girl with her class! The transition as been great! She has been so excited when we get home, and in a great mood! Then today it was like the beginning all over...
We decided that Caitlyn would ride the bus to school in the morning to save some time, cuz Mommy wouldn't have to get ready to leave the house. So, this morning was Caitlyn's first trip on the big girl bus! I took her outside at about 8:05am to meet the bus...About 5 minutes later it arrived. Her driver is really nice! Caitlyn pulled her leg up high enough to make that first step. The driver helped her into the seat, and buckled her in. (state law requires her to have a car seat.) She looked a little nervous as I waved, but she wasn't crying. Mommy on the other hand...that's another story...I waved and off drove the bus with my baby on board! I proceeded to go back inside with my eyes full of tears. So when I went to pick up Caitlyn today, she tried to steer me towards the buses!! She wanted to go home on them! We'll have to think about that one some more....I just like being able to hear from the teacher how her day went, since she can't tell me herself...
Let me tell ya...I can't believe how much of a baby itch I have after sending my daughter to preschool! She is a big girl now! The only signs we still have of her being a baby is diapers! I have been looking for the pause button...I haven't found it yet...Have you seen it?
Tuesday, September 05, 2006
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!
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!
My Attempt at a sales pitch....Whether you are the parent of friend of another Rett girl, or know our family directly, please check out this link that I found through the Rettnet. If you have children in your family that loves to dance, please check out the Girl Power 2 Cure! cd. All the proceeds for this cd go to Rett Syndrome Research. We are so close to reaching a cure. (well, closer than we were 5 years ago.) Researchers know that Rett Syndrome is caused by a mutation of the MeCP2 protien on the X chromosome. (technical terms I never knew before Caitlyn) They have been able to reverse the symptoms in some lab rats....Please check out this cd. If you think your kids, or any kids you know might like the music purchase the cd and help fun research for Rett Syndrome. Thank you so much!
A general update: We are all doing well. Caitlyn and mommy are ready for summer to be over. We have an open house Thursday September 7th at Caitlyn's school. Then on Monday she starts school! My baby is growing up! I'm sure she will enjoy the break from me, as will I. The following week mommy jumps back into the school scene with three classes this quarter: Creative Expressions: teaching young children about art; Special needs children in Early Childhood Education; and another one that I can't remember the title of at this time, but is a class on Curriculum development. I am really looking forward to classes this quarter! It is the starts of my 3rd year in a 2 year program. I guess having children makes it all go a little slower! The diagnoses of Caitlyn in January made for an emotional winter and spring quarter. Luckly my teachers know Caitlyn because she attends the campus childcare, so they knew her history, and our journeys to helping her succeed. Unfortunately, I had to put off one of my required courses, setting me off for Graduating this Spring. As of today, I will graduate some time next year. I'm sure it will all be worth it when I'm all done!
Don't forget to check out the Girl Power 2 Cure! cd!!!
Tuesday, August 29, 2006
Frozen PediaSure continues to be a success! Who would have thought something could be so simple!! I really think PediaSure should come out with a custard or IceCream type thing. I vote for a custard! I can't believe that I'm the only parent who's child wouldn't drink it!
Monday, August 28, 2006
It is common for SSI to want to do there own exams and such, which I totally understand. The thing is we have not received any formal contact or any request for more information from anyone. This is such bull!!!! (Can you tell it's just a tad frustrating to us?)
Now for a little good news. Caitlyn and I had a wonderful day today! We went and hung out at Grandma's house again so that I could type up a letter and fax it to get something started. She was so well behaved! Didn't get into anything in Grandma's office, just sat on the little couch looking out the window. We had a "picnic" on the living room floor. We stayed a little bit later that last time, then it was off to catch our bus! Caitlyn really loves riding the bus! We decided to stop off at McDonalds with our last $8 bucks for an early dinner. Aside from throwing her head back on the seat and bumping it which upset her, she was great at McDonalds! Then back to the bus and home we came. She passed out at 7:30 tonight! I love days like today that are so happy and perfect!
Sunday, August 27, 2006
I am here to tell everyone today that Caitlyn is your typical 3 year old in more and more ways every day! For example, when I have something to tell her and she is interested in it, she makes eye contact and listens! Tonight we talked about dreams. Ever since I wrote A Poem For An Angel last month, I have thought about Caitlyn and her dreams. Tonight I said to her "When you see your friends in your dreams, do you talk to them?" She kept eye contact the whole time I asked her, and then started hyperventalating and grunting like she does when she gets really excited about something. (usually food) Now yes I'm the mom and am looking for any sign of communication in my little girl, but I took this as a yes! It must be so frustrating to her to have so much inside her head that she wants to tell us, and no way of getting it out. Slowly but surely we will all learn together.
Yeah!!! My laptop cord has been ordered and should be here by the end of the week. I will be sure to post new pictures then! *sigh* my baby starts Pre-School in just 2 weeks!!
Friday, August 25, 2006
- One scoop of Strawberry IceCream
- 1/2 a bottle of Banana Cream flavored PediaSure
- 1/2 a banana
I threw it all in the bender, put it a tupperware container and froze it. My thinking is: Caitlyn will eat just about anything! A special IceCream treat just for her! So, after she got up from her nap, we gave it a shot...Success!! She will "eat" her PediaSure, but not "drink" it. So, I decided to try just freezing the PediaSure in small containers. I divided one 8oz. bottle into 3 containers and it is now freezing. We will try them tomorrow. My thinking: She did like the mixture from today, but it was cold, and too much. She only ate half of it. So, tomorrow she will get 1/3 of a bottle at three different points in the day. I will let everyone know if it is a success!
Wednesday, August 23, 2006
Tuesday, August 22, 2006
We also got our script for diapers!!!! Yeah!!! Since she is 3 now, and diagnosed and registered with a disability we are eligible to have diapers payed for! We are very excited about this! Now if only we can get the insurance to pay for the pediasure which goes for about $8.50 for either 6 or 8 cans. (I can't remember) And if we start out at a can a day...that's 8.50 a week...*sigh* no one ever said parenting was cheep!
Caitlyn got her Chicken Pox shot today, and also had blood drawn. She cried a little with the shot. She cried when they drew her blood, not because there was a needle in her arm but because mommy was holding her still! She did great, and earned herself a trip to McDonalds for lunch! It isn't very often that we actually go inside...I admit, I don't particularly care for the stares that we get when our child starts screetching and screaming...Some days I can just laugh it off, but it seems like for some reason places we go have been oddly quiet lately! Well, today we gave it a shot. Caitlyn did great!!!!!!! She sat on the bench with no booster seat, and ate her lunch one bite at a time. I was really proud of her!
Since she did so good at McDonalds, I decided maybe we'd go hang out at Grandma and Grandpa's house to get a change of scenery! So Daddy dropped us off. (Our car broke down yesterday, so we are living with only one for now.) Caitlyn and I hung out, cuddled and found Cheetos at Grandma's house! (Caitlyn LOVES Cheetos!) Then we road the bus back home! Caitlyn thought that was the coolest thing of the whole day! Ah to be 3 and so easily pleased! She is such a joy to us!!
If you also follow the link to Mommy's Scrapbooking, please be advised that Mommy's computer is out of service until we can buy a new plug..."Toby was a blessing during his short stay with us, but he did chew on a lot of stuff!" I have to use Daddy's computer until we get a new plug, and all of my scrapbooking stuff is on mine!
*My baby starts Pre-School in less than 3 weeks :(*
Sunday, August 06, 2006
The area doctor met with us Friday night. She is so nice! I think we might start taking Caitlyn down to Portland for her checkups. It would be a bit of a drive...But I think it would be worth it to take her to someone that sees Rett girls all the time! Dr. Budden said that had she seen Caitlyn for the first time this weekend before having a blood test, she would have clinically diagnosed her. She has the breathing issues common with Rett Syndrome (imagine your child going from heavy shallow breathing to holding their breath in a matter of minutes. I think it makes my heart stop!) She has the crazy hands, the crossing eyes, partial seizures...
I feel like after this weekend I can say "My daughter has Rett Syndrome," and feel a little less sadness in my heart. For the first time I was able to take a stand for my disabled daughter. When we left on the train I went and asked at the counter..."We are traveling with a disabled child. Would it be possible to get an early seat assignment and board early?" Our request was granted and we boarded the train...
Today begins my journey as an advocating mother of a disabled child. I have the strength to handle life one day at a time, learning from my special child. It was a great experience. We will go again next year. The conference will be in Seaside, OR! I can't wait!!!
That brings us to now. Our bright and shining 3 yr old is the light of our life! We have known about Caitlyn's Rett Syndrome for 6 months now. We no longer can think that all of her delays were caused by a lack of oxygen at birth. We know now what she has, and she is still Caitlyn...Even with the day to day challenges of bring up a special needs child, we remember that Caitlyn is still a typical 3 yr old in so many ways! Here's to many more years to come!!!!!
Wednesday, August 02, 2006
Monday, July 31, 2006
What a momentous day! Caitlyn graduated today from her Birth-3 Early Intervetion program today. They do this little ceremony for all the kids on their last day before they turn 3. They sing this little song about going to the big school. It was really cute! Caitlyn loved being the center of attention! Usually they walk over this little stair thing, and then down the other side, but they adapted to make it easier and less stressful for Caitlyn! She walked up the ramp like a pro! We are so proud of her! She has made such progress since she started in May of 2005! On September 11th, Caitlyn will start preschool at the "big school." She gets to go 4 mornings a week! She even gets to ride the bus!!! Thanks for sharing in this special day with us!! I can't believe she'll be 3 on Saturday!!!!
Saturday, July 29, 2006
Saturday, July 22, 2006
Look how pretty she looks with them on! They fit her face so nice! She has to wear them for now when she eats or is looking at books. The doctor is hoping that they can correct her eyes just with glasses. Her right eye crosses independantly. She is actually really good about leaving them on. After she gets more used to them, she'll wear them more often. They are bi-focals, so she's still getting used to where to look. We'll go back to the doctor in 8 weeks to see how it's going.
Just thought I'd say...my baby will be 3 in 2 weeks! My how time flies!!!
Thursday, July 20, 2006
We had a blast today!!!! Caitlyn and Mommy went with The Little Red School House (Caitlyn's school) on a field trip to the petting farm!! Caitlyn had a blast! The first picture is me and her with a calf. The calf came right up to her, and then ended up laying down right next to us. Caitlyn really liked the calf! (Though I'm not sure how much he liked Caitlyn...She got his ear a couple of times!)
The next picture is Caitlyn with her teacher, Leah, and a goat! The goat is pulling away because Caitlyn just got ahold of its ear! That explains the look on Leah's face!! We really had a good time...I got to talk to some of the other moms.
If you are the parent of a special needs child, you'll understand this (if not, I'm sure you can imagine.): When I am with other parents of special children, I feel at ease. Caring for a special needs child tests every ounce of bone in my body...I get frustrated and I sometimes get angry. With the other parents of Caitlyn's school, I don't have to be frustrated...Every other parent there knows what I go through. This is also why I am looking forward to our upcoming trip. We are going to the Northwest Rett Syndrome Foundation conference. Every other parent there will know what it's like...they will be able to ignore Caitlyn's screams in the middle of meals...Or understand when I have to excuse myself because she has reached her limit...To all the parents out there raising a special child: Thank you for excepting me into the circle, and making me feel like I'm not alone. To all the parents out there raising typical children: Thank you for being my friend, sister or parent even though my daughter isn't like your child.
Wednesday, July 19, 2006
We are so happy around here today!!!!!!! On July 3rd, we faxed our script and letter of medical necessity to a pharmacist. He was to work as the in-between for Medicaid and Enabling Devices. When I asked him how long it would take, he said maybe about 2 months. Today Caitlyn received a package from the UPS guy. We weren't expecting anything, and her birthday isn't for about 2 1/2 weeks! Well, it was her communicator!!! Of course the picture isn't of Caitlyn, but that is her device. We can put frames in for 1, 2, 4, 8 or 16 pictures!! This is exciting. At school Caitlyn has pretty much mastered having two choices. Now she can move on!!! Even more exciting is that we own this! We can send it to and from school, so we can continue what she is learning at school!!
I think Caitlyn knew very well what was in the box. I told her "look Caitlyn, it's your communicator!" I was so excited about it. Caitlyn kept trying to pull it out of the box and was signing "more." She wanted to check it out!!
Tomorrow is our field trip, and we will go pick up Caitlyn's glasses too!!! Big news around here!!! Caitlyn is starting to figure out little ways of telling us she needs her diaper changed. So, we're off to buy a potty next month!!! We'll see how it goes. I'm not in a big hurry, but I have talked to other mom's and it IS possible!!!! So we'll tackle it one day at a time, and teach Caitlyn all about pottying in the potty!
Monday, July 17, 2006
We got back last evening, and Caitlyn slept like a pro last night! Unfortunately we all slept in, and she missed school. It ended up being ok, though because the sudden weather changes were messing with her system. We went from 93 and very dry yesterday to about 55 and wet this morning. She didn't want breakfast, and was extra mucusy all morning. Feeling better this evening, tho!
It will be a quiet week. Caitlyn gets to spend Wednesday with her grandma, then we have a field trip on Thursday! We're going to the petting zoo!!!
Thursday, July 13, 2006
When your eyes are closed
And you are sound asleep,
Your whole body rests.
I sometimes sneak in
Just to watch you sleep.
With a heavy heart, I begin to weep.
I wonder where you go...
When you are in this state....
Do you dream?
Do you dream in silence....
Or are you full of voice?
I wonder...will I ever know?
My tears that fall
Are tears of happiness.
At last, you are at a rest.
My dreams for you will always be...
Full of voice and energy.
This I wish for you.
Wednesday, July 12, 2006
Monday, July 10, 2006
As I type this with one hand, Caitlyn is fast asleep on my shoulder! I just wanted to share with every one the perfectly normal day we had yesterday... Caitlyn loves her John Deere Tractor. Taking her outside to play reminds me that even though she has some physical challenges, she can do and enjoy a fun day as a normal almost 3 year old. Caitlyn needs a little help getting on the tractor, but she can make it go all by herself!! As you can see, she doesn't use her hands enough to steer, so I ran in front to take some pictures, and Eric is running along side steering when it is needed.
Here's to treating every child special...as though they were normal!
Saturday, July 08, 2006
Friday, July 07, 2006
I decided I needed a hobby to keep myself busy. So, I took up digital scrapbooking! I am really enjoying it! (There is a link on the right to my site where I'll share my pages) I just wanted to share this page here because it is truly Caitlyn. One of the common characteristics of Rett Syndrome is the uncontrollable hand movements. In the top picture you can see Caitlyn's most common movement. When she puts her right pointer finger up to her mouth like that, she also makes a raspberry sound. She does this a lot. Forever our princess! About the Silent Angel: Girls with Rett Syndrome are commonly referred to as Silent Angels due to their inability to talk. Caitlyn truly is an Innocent Silent Angel trapped in her body. She has so much to tell us, but just can't get it out. She is forever our love!
We head back to the Neurologist on Tuesday the 11th. Wish us luck! I'm hoping to have a good report to share! We were informed that her EEG showed abnormal brain activity, but I'm not really sure what all that means! I guess we'll find out!
Monday, July 03, 2006
The weather has been beautiful lately! The sun is out every day, and in the 80's most days. Ok, so it is a little too warm for all of us, but still fun! Yesterday we found a new park in town! The have a sprinkler area, where the water comes out of the ground. Caitlyn loved it! The water was a bit cool. We tried to get her to sit and warm up for a few minutes, but she got right up and went back to the water! She loves the water!! I wanted to share these pictures. She doesn't match, as we didn't go to the park in shorts, and those just happened to be in the car...but she didn't care, and still had a blast!
Saturday, June 24, 2006
I have been playing with the picture software. I found this cool cartoon effect! The bottom picture is before, and the top one is after! Enjoy!
It's been awhile since I posted, so I figured I'd update everyone on how we're doing. Everything is really going well...Caitlyn is on a two week break from school. She'll start back on July 10 for the summer session. She only gets to stay until her birthday, which is August 5! (yes, our baby is almost 3!!! She is doing well. We haven't noticed any more seizures as of now. (That doesn't mean she isn't still having small ones.) Her neurologist did say that the EEG came back abnormal. She will remain on the medication for now, and we go back in on July 11. I will definitely post more after that. We were sad to find out in June that her speech therapist was moving on. We have been so pleased with what Jenny has done for Caitlyn! So Caitlyn will have a new therapist for summer, and then change to another one in September when school starts!
I decided this week that I don't take enough pictures of Caitlyn! I'm going to start taking more pictures, and will definitely post some on here! She is growing so fast. Over three feet tall, and 30lbs! We wouldn't mind a little bit of weight gain, but she's still eating, and that's what is important! Well, that will be all for now...
Saturday, June 10, 2006
Last weekend we went down to Puyallup for the Rett Syndrome Research Foundation Strollathon. www.rsrf.org We had a great time! Team Caitlyn brought in just under $2000!! I was amazed at all the support we received! Caitlyn was a little under the weather, but still enjoyed herself. My sisters family, Marsha, Jason and Trinity; my brother's wife Thomasina (Jim had to go to the democratic conference.); Caitlyn's grandparents and our best friend Kelli, and her son Jaymes all came out to walk with us. We all had a really good time! Kelli and I bought some raffle tickets, and I got a 1 hour massage, and 2 tickets to the flight museum! She got a bunch of stuff as well! Eric and I were a little nervous about seeing other families, but it ended up being a great experience! We will also be attending the Northwest Rett Syndrome Association conference in August. www.nwrettsyndrome.org We are really excited for that!
Thanks again to all of those who supported us financially and emotionally for our walk!
Friday, June 02, 2006
Tomorrow is the Stroll-a-than in Puyallup to raise money for the Rett Syndrome Research Foundation! We are overwhelmed with emotion from the generous response we have received! I will post after the walk, hopefully with some pictures, so everyone can see how it went! We're hoping for good weather!
Friday, May 19, 2006
Thursday, May 11, 2006
Tuesday, May 09, 2006
Caitlyn got a new friend! This is Toby, an 8 week old schnoodle. (poodle schnouzer mix) Toby is a great little puppy. He follows Caitlyn around trying to play with her. She's not quite sure what to think of him. I help her to pet him, and she smiles. When she is done, she gently pushes Toby away. I hope they will grow to be great friends.
Sunday, April 30, 2006
I just wanted to post these pictures that Eric took of Caitlyn today. You can see from the blurriness around her hands how much they are constantly moving. I think they even frustrate her at times. At night, she actually sleeps on her hands so that she can relax. It pains me some days to see how much they move. I wonder if it drives her crazy.
Friday, April 28, 2006
Caitlyn is also making great progress in speech therapy! Her therapist feels that she is making the choice of what she really wants about 60-70% of the time. She does this by pushing a button with a picture on a communication device. The device gives her two choices. She loves to push the button with the picture of the goldfish crack on it. Food is such an incentive for our little girl! I will try and get some pictures, if they'll let me.
Sunday, April 09, 2006
Thursday, March 16, 2006
*Edited to say Caitlyn luckly didn't end up getting the Chicken Pox.
Caitlyn is growing so fast. She is doing well, although we are dealing with it a bad a cough. We're are hoping it will go away soon. All of her doctors appointments have gone well. Her genetics doctors said her spine looks great!!! (scoliosis can be a side effect of Rett Syndrome.) It is hard to tell where our journey will take us. Caitlyn is shocking everyone as she continues to learn to do stuff. Just this week she started standing up in the middle of the room on a regular basis. Eric said he has seen her do it once or twice, but it is much more regular!!! It is so exciting! We never thought she would be able to!
Right now Caitlyn's all time favorite things are books, (though we have had to switch to more soft fabric books because she has taken to eating the cardboard ones) and her stuffed doggy that is named "Oggie Doggy." Once and a while she actually says oggy!!!! We are so proud of everything she is doing!!!!
Monday, February 27, 2006
On January 27, 2006 Caitlyn was diagnosed with Rett Syndrome. I thought I'd start this blog so that her friends and family could follow her progress and development. Her latest thing is she is saying "daddy"!!! We are so excited to hear it. We know that the words may not stick around, and are so pleased to hear what we do! We will continue to post so that everyone can know how Caitlyn is doing.