Tuesday, December 30, 2008
Anyway, Caitlyn and I got all of the padding pulled off that she didn't need, and sized the straps and got them in the right holes. So, here is the end result. Caitlyn in her comfy over sized new car seat!
Wednesday, December 24, 2008
Tomorrow we will enjoy a nice lunch with my parents at my Grandma's house. Friday Caitlyn and I will spend the day cleaning up and preparing for company. We don't have a lot of space in our small two bedroom apartment, but we do offer up our couch for a few nights whenever Eric's brother is home on leave from Texas. He's a great brother-in-law and a wonderful uncle to Caitlyn. He is all too familiar with our less than perfect house keeping skills, and doesn't seem to mind. But this year is extra special as he is on leave with his new wife! I will go into it nervously as I make sure Caitlyn is on her best behavior. Her uncle adores her, and hope that her new aunt will do the same.
My camera is armed with new batteries this holiday! I promise at least one picture! Merry Christmas, and remember....don't let Rett Syndrome win this holiday season!
Tuesday, December 09, 2008
In other news, Caitlyn has her first loose tooth! Be on the look out for a toothless grin!
Monday, December 08, 2008
Christmas is hard. The month of December is really hard. First off, it was December of 2005 when we first learned of what Rett Syndrome was. 6 weeks later we sat crying in the doctors office getting the results that would forever change our life. I am to the point where it pains me to even wrap Caitlyn's presents. I think to myself "why am I wrapping these, when I'm the one that has to open them?" We just wait until Christmas morning, then put everything under the tree unwrapped. It is really hard to shop for her too. I spend hours walking up and down the rows and rows of toys at Toys R Us looking for a toy that is both age appropriate, and safe. I just can't bring myself to purchase a '6-12 month' toy for my 5 yr old.
I really hate Rett Syndrome some days. I hate what it has taken from my daughter, but I hate even more what it takes from other kids. I can't believe that the thing that is responsible for Caitlyn's challenges can look so much more evil to another family. Caitlyn lost her words and her ability to use her hands in most ways, but she can still feed herself if she really tries, and she still holds her own cups. And she can walk. Don't get me wrong, I am thankful for what she does have. But I hate that there are other families that have lost so much more because of Rett Syndrome. Families who's daughters could once crawl, or walk. Families who have had to learn to use a feeding pump because Rett Syndrome has left their daughter so thin. Families who's daughters have lost all use of their hands. Rett Syndrome is such a difficult thing to face, I can only hope that despite the differences in our girls, we'll all come together and not let Rett Syndrome run our lives.
This year we will fight to make the most of the Holidays, and not let Rett Syndrome decide how we feel. I always loved Christmas growing up. I guess we just need to find our way...If our way means not using wrapping paper, then so be it. We need to make the season enjoyable for Caitlyn, some how some way our family will figure a way to make it through the Holidays.
Sunday, December 07, 2008
Thursday, November 27, 2008
Monday, November 17, 2008
Imagine being the mom of a child with Rett Syndrome. (I know most of my readers can do more than imagine) Imagine that you are reading over the evaluation report you recieved from the school. All of the sudden you stumble on two words that stab at the depths of your heart. No one used them in the meeting, but they sure didn't have a problem putting in the evaluation and labeling your daughter with "Mental Retardation." You wonder what gives them the right to use such an old, hurtful term...a term that not even an old doctor has used...You go into the next meeting, and ask that those words be removed from any documents in your child's file. You are told that can be done with written notice. You then ask why they even use it anymore. You are informed that the state WAC (Washington Administrative Code) gives them permission...What would you do?
This is my story, and here is what I did. I called my dad, who spent 8 years in the State Legislature, and asked him what could be done. He said if it is in the WAC, it must be in at least one RCW (Revised Code of Washington). So I get on the Internet and start looking. I do a search, putting "the term" in quotes. I find 48 WAC's and 35 RCW's that contain "the term." I'm shocked. I can't even believe that we are still using it! I understand that it is a medical diagnosis, and that is probably not something I can change on my own. What I can do is fight to have the wording in all 48 WAC's and 35 RCW's in Washington changed. I am working with my local legislatures who are speaking with their policy people. We are going to try to get this to vote for the 2009 session. I will of course update my readers as we go through this process.
You, too, can make a difference. Does your state still use "the term?" There will be a vote in the Missouri Legislature to remove "the term" from government us. It will not change eligibility for people who have had old school doctors that have given them such a diagnosis. In Washington, it is the Department of Developmental Disabilities (or DDD) in Missouri, it is the Department of Mental Retardation and Developmental Disabilities. This must change! Our loved ones do not need such a hurtful, derogatory term assigned to them. Wont you help make a difference?
Friday, November 07, 2008
Wednesday, November 05, 2008
Saturday, November 01, 2008
Caitlyn's teacher, Ms. Amanda feeding Caitlyn the pudding...Big open mouth...She kept spraying pudding on her teacher!
Caitlyn as Winnie The Pooh. She wore it for about 10 minutes before it just got too hot!
And one last picture to show...The adaptation made to Caitlyn's chair. She has a habit of pushing off of tables and sometimes flips her chair back! This is so cool, we are going to do it to one of our dining room chairs, also!
Thursday, October 30, 2008
An update on the crazy PE lady. Caitlyn will no longer be joining her classes in PE. When the life skills class goes on Tuesday mornings, [my favorite para ed.] will keep her and one other student behind to work on turn taking with rolling and passing balls. They will also work on some yoga poses to help with range of motion. They are going to try and re-work her therapy schedule so that she can have speech or motor therapy while the general education Kindergarten class is in PE. We are so thankful that we wont have to deal with the PE teacher anymore!
Everything in our lives is one day at a time...
And now for the announcement. Since my business cards came in the mail today, it all feels more real. I am the new Washington State Regional Representative for the International Rett Syndrome Foundation. I'm hoping that I am far enough along on my Rett Syndrome journey to help new families just starting out on theirs. I have been stock piling my resources in the last couple of months, and going through some training sessions to make myself familiar with educational resources in our state. I hope that this journey just furthers my own understanding and acceptance on the Rett Syndrome path.
Wednesday, October 29, 2008
First, the anger...There are some huge issues going on with the PE teacher that are very angering...She has issue with Caitlyn's hand mouthing. She makes them put her arm braces on, which in my mind makes the PE time no longer meaningful. Caitlyn can't do much in PE without bending her elbows! Caitlyn's aide informed me that during General Ed if she doesn't have her braces, the PE teacher makes her wear a sock over her hands!!! We are furious and I'm feeling as though it is border line abusive to humiliate her and restrict her in such a way! So, as soon as I received this information, I went to the Life Skills teacher. She said they have brought up the issue, but apparently hearing it from the teacher isn't enough. So, she asked me to please bring it up at our meeting on Thursday. I was actually in tears talking to the teacher. Can you believe it? A sock over my daughters hands because she can't handle the spit!
I have questioned our decisions to fight so hard at times...Just because I wasn't sure if it was my agenda I was fighting, or if it really was what is best for Caitlyn. Yesterday answered all of my questions. Mom's and Dad's you MUST get inclusion in your IEP if you expect your child receive any during the day. And being in the lunch room at the same time as typically developing children is NOT inclusion. That would be equal to putting a poster of the alphabet on the wall and say you taught it to the children! Caitlyn's class goes to recess alone, and they sit off in the corner during lunch. These are the two times that the school tried to sell me on their inclusion policy. The poor children in that room are essentially being isolated from the rest of the school...It just breaks my heart...I wish I could fight for all the other children in that classroom, too! Inclusion isn't just about academics! Children deserve the right to meet and be around their peers!
Caitlyn's off on her field trip today...I'll update what I know probably tomorrow, along with an update after our meeting.
Saturday, October 25, 2008
Back to those important meetings. Thursday October 30th, we will meet with the team to go over the results of the recent evaluations. This has me a little down. I try to keep in mind that the effects of Rett Syndrome on Caitlyn leave her unable to preform on a standard evaluation. She did relatively well. I was allowed to be there and help out with the evals, and for that I am grateful. We showed them how we sing "Old McDonald Had a Farm." Those that have seen Susan Norwell may find this familiar. Caitlyn picks the animal we sing about, and mommy sings. If Caitlyn looks away, I stop singing. She knows that if she looks back to me, I'll continue singing. She giggles and points at the animal the whole time. I think the eval team really enjoyed seeing that! The eval was hard for me. I have no doubt that Caitlyn knew a lot of what they were asking her to do, I think it was just too hard to make her body do it! My heart hurts for her, but she is such a good sport about it, and doesn't seem to be bothered! I know that Caitlyn is not at a 5yr old level developmentally. I am hoping to hear her put at atleast a 3 yr old level in one or more areas. If nothing else, it will show a developmental progression since diagnosis! Keep these numbers in mind, until I come back to update after that meeting. At 18 months, Caitlyn's receptive and expressive language evaluations placed her at a 9-10 month level. Please pray for our strength while we receive the results of her evaluations at 5 yrs.
On November 5th, we will go in again for the official IEP meeting to discuss permanent placement for the remainder of the year, as well as fine tuning her IEP goals. I want Caitlyn to be successful...That is ultimately my goal. I want whatever comes out of that meeting to full reflect the needs and abilities of Caitlyn. I will be sure to update everyone after this meeting!
Last month our family became victim to the economic downfall when Eric was layed off from his job. He is still without work, and looking hard. In the mean time, I have gone back to work. I am an Assistant Site Director for a before and after school YMCA program. I am really hoping that this will lead to a full time Site Director position in the near future! After one week, I am enjoying my position. I have also taken on a volunteer position, which you will have to wait to hear about!
I sent Eric to the store for batteries, so be on the look out for pictures in the near future!
Sunday, October 19, 2008
Thursday, October 16, 2008
Wednesday, October 08, 2008
Sunday, October 05, 2008
Thursday, October 02, 2008
The GOOD Things About Rett Syndrome (in no particular order)
1. It is a diagnosis. There are many families out there that are still on the road to find a diagnosis for their child. A friend of mine would respond to people saying "My son has GOK syndrome." (God Only Knows). As much as finding out your child has Rett Syndrome hurts, imagine how much more it would hurt if you were still trying to find an answer. It closes a chapter of the unknown.
2. You learn to celebrate the little things. We clap and cheer just for a little tinkle in the toilet. Sure, all parents get excited when their children become potty trained...But we cheer for each time they go, and they may be 5 before they go the first time! We celebrate food making it into their mouths, even if it will never happen again. We celebrate the little attempts at communication.
3. You learn the true meaning of unconditional love. You will never hear your child say "I hate you!" As they run out of the room. They depend on you for every aspect of their life, and are so in love with you. You can see it in their eyes. That is a love that will NEVER go away!!
4. You develop a compassion for people that isn't anything learned in a book. I admit there was a time when I would feel such pity for people with children who were disabled. It just broke my heart! Yes, it still breaks my heart, but their is no more pity. Now, I see the strength in everything that parents do. I secretly praise them for having the strength to go out. I appreciate people more than I ever have before.
5. You meet the most amazing friends. The Rett Syndrome community is so close knit. We lean on each other in the good times and the bad. We may only see each other once or twice a year, unless we live close. The friendships are lifetime. Tragedy brought us together, but hope and joy keeps us together. Interests change, and your other friends may drift away. The friends I have made as a result of Caitlyn having Rett Syndrome are the most cherished friends I have. We follow each other's girls like they are our own. We help each other keep it together. (Gals, you know who you are.) It isn't just the moms...The Grammy's become our friends to. They follow our girls and love them.
6. You become an expert. Sure, I could go to school and become a doctor, but why spend that amount of time in school, when I already know more than some doctors. I am an expert in the subject of Rett Syndrome. The thing about that is, I can also accept that things are changing, and there is always more to learn.
I can find the good in Rett Syndrome, but that in no way means I like it. It has had some positive effects on my life. It has taught me to slow down. It has showed me appreciate every step I take. I have learned that at the end of the day, when I am exhausted and tired, I know that I did everything I could for that day. I learned not to think about yesterday (unless it involves not having a bm) or tomorrow. I live in the now. I live one day at a time. I have the privilege and responsibility to not only be a caretaker, but also be a voice. We are our children's voice. They have the best advocates they could want.
Rett Syndrome has brought out a side of me that I didn't know exited. It has brought out a leadership side of me that I am learning to embrace. Through my own experiences, I am learning to give other parents the power. Rett Syndrome has changed my life for the better.
I have a lot of ideas running through my head for topics throughout the month. My husband has agreed to do a piece at some point, giving everyone a father's perspective on Rett Syndrome. This should be a great month of reflections on Rett Syndrome and our lives. I am opening up to my readers, and if there are any questions or topics you would like me to reflect on, please let me know.
Wednesday, October 01, 2008
So that is a brief overview of our story. You might ask "What is Rett Syndrome?"
Rett Syndrome (RS) is a neurological disorder often misdiagnosed as autism, cerebral palsy or non-specified developmental delay caused by a defective regulatory MECP2 gene, found on the X chromosome seen almost exclusively in females. Unlike females, who have two X-chromosomes, males have an X and a Y chromosome. Because males lack a "backup" copy of the X chromosome that can compensate for a defective one, mutations in MECP2 are lethal to the male fetus. This is why RS is found overwhelmingly in females. Rett Syndrome occurs in a variety of racial and ethnic groups worldwide now known to occur from 1:10,000 to 1:23,000 female births, but incidence may be far greater as new genetic evidence is discovered.
Development appears normal until 6-18 months of age followed by loss of acquired speech and hand skills, slowing of head growth and development of stereotyped repetitive hand movements, loss or difficulty with mobility hand movements include handwashing, hand wringing, hand tapping, hand clapping and hand mouthing. Stereotyped hand movements may change over time and additional problems may include seizures, breathing irregularities (hyperventilation and apnea), teeth grinding and curvature of the spine (scoliosis). 99.5 % of cases of RS occur only once in a family. Barring illness or complications, survival into adulthood is expected.
This month I will be doing a series on Rett Sydrome and our family. Join as I share our most deep and private struggles with this devastating syndrome. I will also share the happy moments, and the positive effects Rett Syndrome has had on our lives. If you find yourself asking "what can I do to help?" stay tuned.
Tuesday, September 30, 2008
Sunday, September 28, 2008
Just when you think you've got it all under control, something happens and you lose it...That pretty much describes my day. Since Caitlyn is in Kindergarten now, she is bringing home the occasional homework. We had two things we had to do today. The first was decorating a box that would hold all of the books they are making at school, so that she can read them at home. This should have been a simple project, but it tore open old wounds. We have these cool pen adapters (I'll post a picture soon) that Eric made for Caitlyn so that she can't throw the markers. She has one at school, and one at home. So we went to the craft store and bought a cute box and some stickers. We sat down after a short nap to decorate our box...It ended up with her running off laughing and me crying. It was such a simple task...But sometimes it is the simplest of things that remind you of what you thought life would be like. I never in a million years thought the simple project of decorating a box would hurt so bad. I can't explain the pain...It hurts to see her not be able to do simple tasks. My logical thinking knows that it shouldn't hurt. I know she knows know different, and doesn't seem frustrated...but the pain persists. We did finish our box...I decided not to venture into the Jack and Jill assignment, thinking we would do that in the morning. (We have to count the words in each line, marking them on a little graph)
With everyone one of these feelings, questions come up in my mind. Today I find myself wondering...In those moments that the tears escape before I can be alone, what do I tell Caitlyn? How do I explain the pain I feel to her?
With every tough day, comes a good ending. On the hard days, I strive to make the ending enjoyable for both of us. Caitlyn had a very enjoyable bath, which left us both soaked. We then read the book that she brought home from the school library on Friday, by flashlight. She loved it! We curled up in her bed together, she turned the pages and I read the words. She was so excited to turn the pages and see what happened next. It is hard, but we try to find a drop of joy in everyday...
I feel like Caitlyn was just diagnosed with Rett Syndrome yesterday...
Tuesday, September 23, 2008
Anyway, the reason I am bringing you all down memory lane is because tomorrow I am leaving to go over to Yakima with 4 other moms of children with special needs. We are going to attend the Valued Lives Conference. Tomorrow night I will have the opportunity to hear Chris Burke speak. I'm thrilled to have this chance. I will be sure to fill everyone in on my experience after I get home on Friday.
This is just the first of some exciting opportunities I have in the next couple of months. Next month I will be attending a KIT training (KIT-Kids Included Together). This training will train me so that I can train others on KIT. This is so exciting for me to take part it these trainings. I look forward to a day when our children can go to the same fun kid places and not be turned away. A day when parents wont have to worry about what they are going to do with their children when they are forced to get a job...There will come a day when all childcare providers will be trained on including all kids together in their centers. Dream with me, and let's make the step to make a difference!
Sunday, September 21, 2008
As we all know, October is Rett Syndrome Awareness Month. It is right around the corner. My suggestion is that we all post on the same topic for our Awareness post. Our first October I did a quite long post on our journey to learning about Rett Syndrome, and what it has meant in our life. That was a little more than 6 months after our diagnosis. Last year I did a shorter post talking about what year 2 brought us in our journey. If other Rett blogger's would like to partake in a post topic for our Awareness posts, please leave a comment with any suggestions you might have, then we can have a vote. Imagine how therapeutic it would be for newly diagnosed families, or families who have their diagnosis for years to be able to spend some time reading several different views on one Rett related topic.
Also, if you are a regular reader of my blog, or just stopping by, and you would like your child's blog listed on my list, please leave a comment and let me know.
Lastly, it is a long time away, but let's start thinking about the IRSF conference 2009. If you think you might be attending, let us know! I will most likely be arriving on Thursday so that I can enjoy a little bit of time before the conference starts. (if nothing else, that's what I learned from Chicago. Spending that money to go, I need to arrive early or stay late so that I can enjoy some vacation!) Maybe we can plan a Rett Syndrome blogger get together at some point.
Take care everyone!
Saturday, September 20, 2008
Where to start...School first, I guess. Caitlyn's second week of school went much better than her first. She is getting the hang of things. She loves going to school. I drove her on Tuesday last week, and it was so cute! Her Kindergarten classroom is right next door to her life skills classroom. When we show up in the morning, she tries to break away and go into the K class. She knows that is where she enjoys being the most. We decided to try letting her buy lunch, thinking it would save some time and let her have more of a variety. There is a lot of choices, so we'll get to the point of letting her choose what she wants each day.
Tuesday night was curriculum night. Eric and I seem to be on the young side of K parents in her class. We enjoyed the evening. We had the opportunity to speak with her K teacher for a couple minutes. Turns out no one thought to tell her that Caitlyn's placement was only until the end of October. This is huge for us because she really seems to enjoy having Caitlyn in the class. The other kids are really warming up to her. It's great to hear about!
On the Benecalorie front, we are doing ok. We don't know yet if she is gaining, but we are able to get one container in her each day. We mix it in her propel flavored water, oatmeal, mac and cheese, pudding. I also put it in her scrambled egg mixture, or in the mixture of french toast. She is handling it pretty good. It does make her a little less constipated, but all of you other Rett parent's know that's not a bad thing! The real test will be if it is putting on any pounds...I struggle with this decision. I know she is healthy, but I also know that she is too skinny. What I struggle with is what do I do when she gains 5 pounds? Will I still be able to take care of her as easy? Will it get too hard if she gains?
Caitlyn had a great eye doctor appointment on Monday. She will be getting glasses, but first we have to find a place that will take our insurance for frames. Hopefully it will improve things over all for her.
I promise next time I post I will try and get some pictures up...
Friday, September 12, 2008
In other news, starting Monday we will be using Benecalorie. Here is the description: There are two reasons why BENECALORIE® is the ultimate solution for fighting fatigue; a formula that packs 7 grams of high-quality protein and 330 calories into a single 1.5-oz serving, and its ability to blend easily into liquids and most foods. Maximum nutrition, maximum flexibility, maximum variety, with a minimum serving size.
We got this as a prescription from our doctor, so it is being payed for by our insurance! We can mix it in Caitlyn's food and drinks throughout the day. That's an extra 330 calories a day! I know Caitlyn isn't all that small at first sight, but her weight for hight puts her right at or just below the 5th percent. We are being proactive and trying to avoid the possibilities of weight loss if Caitlyn gets sick this winter! I'll let everyone know how it goes, but I encourage you to check out this product!
Caitlyn has an eye doctor appointment on the 15th, and then we have another meeting on Thursday at the schools to discuss assessment. I promise to update soon, and also get a picture up!
Thursday, September 04, 2008
What an emotional proccess. It took us 3 hours to get to this...It was 2 1/2 before they even offered it! A piece of advice to all of those out there...When writing IEP goals, think of things that can only be met in a general ed environment. And make sure every conversation you have with teachers are in writing!!! We are happy with this for now. Caitlyn and I will go meet her teachers tomorrow morning, then she will start school on Monday. We faught for her...and we won this round...Now on to round 2...Thanks for everyone's support...it means the world!
Tuesday, September 02, 2008
Tuesday, August 19, 2008
I am still without internet at home...Hopefully soon! I'm wondering if anyone would like to have a blog set up so we can all share calorie boosting ideas? I'm willing to set something up in my free time if anyone is interested!
Thank you everyone for your support.
Monday, August 11, 2008
Thursday, July 31, 2008
Today is also my last day as Children's Program Lead at my job. I will work the next two Wednesday's and then I'm done, except for the occasional subbing. It is a little bitter sweet. I love the feeling working for a non-profit gives you. I have really enjoyed my time there, and it is hard to leave. But, I will no longer have to wonder where the money will come from for Caitlyn's medication. We are excited to get Caitlyn set up in some therapies outside of school. We also have Well Child Check scheduled for the 8th of August because my baby is going to be 5 on Tuesday! And we have a eye doctor appointment for September 15th. (We are also very excited about having our pull ups payed for again!) So, has I say goodbye to my job, I am saying hello to all of the doors that are once again opening for Caitlyn. Stay tuned as I fill you in on all of the exciting volunteer work I will be doing in the future!
Monday, July 21, 2008
Thursday, July 10, 2008
Wednesday, July 09, 2008
"They fell victim to Rett Syndrome beginning at age 2.
They don't hear my brain when it tells them what to do.
Don't bother trying, they wont listen to you either.
They do their own thing,
And make me so mad at times."
"Why don't they listen to me?"
"I tell them not to go in my mouth, but they must not hear me."
"Sometimes they hit...Please know I can't stop them."
Tuesday, July 08, 2008
We had such a blast painting this bank together! (Of course I did the name) There were so many colors to choose from, that I would bring down just a couple at a time for her to pick from. She picked all the colors, but mommy picked where they went. We also painted a little heart shaped trinket box for Grandma. (Well, I did most of that because she was feeling kind of done after the tiara bank.) I love that we can do things like this together! It required a lot of pre-thinking and was done almost fully with hand-over-hand to prevent her from eating the paints. But what a blast we had together!!!
Personal Plug: Since I'm feeling a little lost with summer and my baby girl being gone for 3 hours a day, I am scrapbooking away...I've challenged myself to a page a week, though this is only day two of her being gone, and I'll probably do a lot more than a page a week! Anyway, here is the link to my scrapbooking blog so you can check it out! Of course, you will find that Caitlyn is the subject of most pages!
Monday, July 07, 2008
Caitlyn and Mommy July 2008
I just wanted to show these three shots for a trip down memory lane...Looking at it, I can't believe how much she grew between almost 3 and shortly after 4!!! And now look at her! She keeps getting bigger, and I keep getting smaller! (Sorry we didn't look at the camera in that last one...Daddy didn't get us looking before he snapped the picture!)
Saturday, July 05, 2008
Wednesday, July 02, 2008
I can't tell you how pleased we are that Caitlyn is at Linda's house! When I finish working, I am going to keep sending her there one day a week. She has never been in a care situation where the adults tried so hard to educate the other children. Caitlyn is truly making friends! (And I'm a very proud momma)
So when I went to pick Caitlyn up, Linda told me another story. She said Caitlyn and this little girl were outside with a couple of other kids and Linda's helper. The little girl brought Caitlyn inside. Linda said they were both wet down the front, and Caitlyn was wet on her back. (She has a water table in her back yard) The other little girl proceeded to say "Caitlyn did it." I suppose you can blame it on the non-verbal kid, huh! It made me think of stories my mom tells of my brother blaming stuff on my sister when she was a baby in her crib! I love that my little girl is being accepted in this environment. This just goes to show you that she can have a blast in a general ed classroom!
Tuesday, July 01, 2008
Monday, June 30, 2008
Another benefit of moving...A new SSI caseworker. And she is much nicer than the old one! We got in with one day to spare...had we not been in until tomorrow, we would have had to start the whole application process over. So, we were approved!!! We qualified for the month of June and for July, but not for August. Every month that has 5 Friday's we wont get a check, but we should still get insurance, and that is by far more important! The funniest thing with this switch in caseworkers...Back to May of 2006, nothing has been verified on our account. Our last check was in July of 2007. Everything was just estimated. So, the gal said she is going to go through and verify everything. (poor thing...2 years worth of pay stubs she has to go through!) If it comes out that there were months in there we could have gotten money and didn't (I know there are a few) or didn't get what we could have, we will get more...also is true that if they gave us too much at any point, we will owe. Let's hope the first is true!!! Yippy for health insurance!!!
Friday, June 27, 2008
I forgot to add that she got made there at the end because I was filming and not reloading her fork...I guess she doesn't think I have my priorities in the right order.
Tuesday, June 24, 2008
We will of course start with Chewlry!!! I am in love with these stretchy plastic things! When I was in Chicago, I saw a girl chewing on a necklace, and I asked the dad to tell me all about it! They are called Chewlry. So that night Kelly (Brooklyn's mom and fellow Internet junky) and I looked it up on line. We found where they could be purchased, and I went home prepared!! Well, I finally got around to looking it up again a couple weeks ago. I of course had to get the mega chewlry because it said it was stronger! (well, they are also bigger and that is why it is twisted) The whole point was to give Caitlyn something to chew on other that her shirt. Let me tell you, this plastic necklace does so much more than that! We have 7 colors-blue, purple, green, red, orange, yellow and white. They haven't totally replaced the hand chewing, but they have helped. What they have done, is changed her hand pattern. She doesn't chew on her shirts (but darn it they are still wet a little because the necklace gets wet) and probably the big thing is the fact that she has almost completely eliminated the "crotch grab" from her hand patterns. I don't think I've ever talked about this, but there are days when she constantly looked as though she had wet herself because she would suck on her hands and then grab herself! (not a "i need to go potty" grab...that is a single finger point...this was a full on grab) These necklaces are a wonderful thing!!! And so worth the outrageous price I paid for them! And, no matter what color Caitlyn is wearing, she always gets to choose the color of her necklace...she wore orange one day with a brown shirt...
I couldn't find if I had posted about Caitlyn's neurology visit or not, so here is a little update. I had to work, so my wonderful loving husband Eric took her. Don't get me wrong, I love him like crazy and appreciate so much that he is an active father...but he's not the best at telling the story after the appointment...He says it went fine...next appointment is December 1st. Yippy! We have control, and are being bumped to every 6 months instead of every 3. Cross your fingers that we can keep this control...She is so much more happy seizure free! So last week the report from the doctor came...There was all this stuff about weight and follow up with nutritionist...(momma freaked out!!) Yes Caitlyn is skinny...her weight percentage is 50% for her age, but her BMI is right at 5%. Under 5% for a BMI is considered underweight. I have the BMI calculator listed on my favorites, and I run it every time we have a growth spurt! So I got all nervous wondering if the doctor was expressing concern with her weight. She has been 37 lbs since about October I think, but she grew again...she is 3'8" now. So I said something to Eric about the doctors notes...Apparently he expressed the concern to the doctor, and he said it wouldn't be a bad idea to have the nutritionist follow her...I want to live in a world where I don't have to worry about every single calorie that goes in my daughters mouth...some mom's say "please don't feed my child the high calorie juices and whole milk..." I say "please don't give my child fat free foods...she needs her fat!!!"
Another thing that through me off from the report was that they wanted another EEG before her next appointment...So I will have to call and see if they really do because Eric couldn't remember anything being said about that. I am really not looking forward to another 24 hours in the beautiful hospital...but if it really needed, we'll make it work! hmm...Maybe it is Eric's turn to stay over night!
Well, that's about it for today. I think Caitlyn and I are going to take a picnic to the river tomorrow for lunch since it is suppose to be so beautiful, so hopefully I'll come back with a lot of pictures to post!
Friday, June 20, 2008
Thursday, June 19, 2008
Sunday, June 08, 2008
Sunday, June 01, 2008
Caitlyn was in the nursery at church with my niece. Caitlyn had a fairly big seizure (big for her) and then was laying on the floor upset. (she gets upset when people freak out about them...Eric and I have learned to just be casual about it and then she doesn't get scared) So she is laying on the floor crying and banging her head and I am told that my niece Trinity (who is now almost 3) was quite concerned. She told the nursery gal, in a very concerned voice, "I think you better get Caitlyn's mommy." Caitlyn is so lucky to have such a wonderful cousin, who just this morning told her mom "mommy, Caitlyn talks...We all talk." Isn't the innocence of a young child the most wonderful thing. I am sure that they will grow up to have an amazing bond.
Another little story...Let me go back a couple of weeks first..Caitlyn was invited upstairs to play with the neighbor. She had a blast. The little girl took Caitlyn's hand and just towed her around the house showing Caitlyn all of her toys. Then the little girl came and played here while I was in Chicago. The girls had a blast running around together, and she doesn't see Caitlyn as being any different, except that she notices she can't talk. So today Caitlyn and I were coming home from our morning walk with my sister and her daughter, and the neighbor and her little girl were outside. I wasn't sure if Caitlyn would look up and see them, but she did. The mom said "hi Caitlyn," and Caitlyn didn't react much...But when that little girl said "hi caitlyn," Caitlyn started sputtering and babbling and dancing around...she had the hugest smile on her face....This is so cool to me, because I remember a day when Caitlyn loved adults but could care less about other kids. Now she loves being around other kids. My little social butterfly!!
We will be getting a new camera this summer, but Eric says I have to wait. For now, he promises to find the cord to my camera so I can get the swimming video off and take more pictures! Stay tuned for super cute pictures of my princess!!
Saturday, May 31, 2008
On the thought of meals...We found Jimmy Dean breakfast bowls...They have sausage (or bacon), potato, egg and cheese in them. Full of yummy fat and protein and Caitlyn loved it! I'm all for quick and easy breakfast on school days!
My camera is having technical difficulties, so I'm not sure when I'll be able to get a new picture up. I think I might try and talk my wonderful husband into letting me buy one for my birthday..So be on the look out for cute pictures. And if you really need a cute kid picture fix, you can always head over to Brooklyn's blog...Her mom is great with the picture taking!
Friday, May 30, 2008
- I will never have to worry about her running to the street
- We can be around a pool and even though she has the fearless love of water, she wont go in alone because she wont step down off of ANYTHING (lakes and oceans are another story)
- She stands right by the car while I unlock it (standing in fear of her surroundings, but standing still)
- I can go to the laundry room with her, and do my think with the clothes, and not worry about her running into the parking lot...again there is a step
- She loves to hold my hand and will reach for it...I'll never have to worry about her pulling away from mommy
- She loves sitting in her stroller(to the point that she almost nose dived off of Santa's lap this past Christmas because she wanted to get back in!)
- She makes me take my time-She doesn't walk very fast, and every time she holds her breath she has to stop going places takes awhile. And then she is such a people person that she stops and looks at everyone who passes!
I used to take for granted my ability to get where I wanted to go. I never even considered how I got that way, or what it might be like otherwise. I was always in a hurry, and never really noticed my surroundings. Caitlyn has made me appreciate mobility. I see the fear on her face when we walk down a hill, or when we walk onto the grass. She is literally terrified that she may fall. I hate seeing her go through that, because at home she is so comfortable and shows no fear. I never complain about the mobility that she does have. I don't complain for the same reason that parents of children who talk shouldn't complain about the things they say. Or the same reason that parents shouldn't complain about having options for their child. I don't complain because I know first hand that their are parents out there who are thinking or might even say "at least she walks."
Chicago was hard in a lot of ways. Ever since Caitlyn was diagnosed with Rett Syndrome, I have struggled with being around other families. The first time we met another family, we drove to their house for dinner. I left feeling like I didn't fit into this community her diagnosis had put me in. I hate that she has this Rett Syndrome monster, and sometimes I feel guilty that she has the abilities that she does, even though they are limited. I hate that two girls with the same diagnosis can have it so different. I struggle to find where we fit into the community. (of course I'm in tears as I write this) I'll never forget our transition meeting when Caitlyn was aging out of birth-3. The nurse said to us "I've seen girls with Rett Syndrome, are you sure this is what she has?" This was the same lady who said to us and the staff when the year started. "It's not a matter of if the seizures get worse, it's a matter of when. They will get stronger and they will get worse and eventually the medication wont work." These are things I'll never forget. I'm proud of Caitlyn for the things she does. I know she's worked very hard to be where she is. She's come along way from the 2 1/2 yr old that the doctors said would pretty much be 2 1/2 mentally forever. She continued to gain skill even after she came out of her regression. Being handed a diagnosis is scary and it leaves you feeling even more lost. You feel like you're doing it all alone. And when your child has a condition like Rett Syndrome with such a vast difference of how it effects people you still feel all alone. Caitlyn's Rett Syndrome has made it so I've made connections that I wouldn't have made otherwise. In Chicago I met people in person that I felt like I knew everything about. I know they have Rett Syndrome in their life, but even though we share that common diagnosis our girls are all sooo different.
On a happy ending, even though our girls are so very different, they all have one thing common. Each and every girl with Retty Syndrome that you will ever see have the most amazing eyes. Let's go back in time now and look at this picture. This is from September of 2006...I think more than any other picture this shows the beauty of Rett Syndrome. The Eyes of an Angel
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.