Monday, June 30, 2008

Social Security meeting today-update

Just a quick note...If you see this post before 2:05 pacific standard time, please say a prayer! I have a meeting with the new SSI caseworker to see if we can get Caitlyn's benefits reinstated. If the meeting ends on a positive note, she should be fully insured by August 1! This will mean pull-ups payed for again, being able to get her therapy outside of school, no co-pays on meds or doctors appointments, no premiums, medicaid personal care hours, and a little bit of money. The money isn't as important to us as all of the other benefits. I will update later today or tomorrow morning with how things went.

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

The Fork

Learning to use a fork is a slow process for Caitlyn. When we first started, she wasn't quite sure what to do. She would pick up the fork with her left hand, and then pull the food off of the fork with her right hand to eat it. The food made it in her mouth, and the fork became air born. We did some hand over hand until she realized the food stayed on the fork, and then started letting her do it again. Everything went smoothly, except the fork still became air born. Picking up the fork 20 times in one meal was enough to say "forget this." Well, that and the fact that it makes meal time take extra long. I'm all about her forming some sort of Independence, and we are trying hard to always make time for her to do stuff herself. So here is where we are today with the fork. This is a super quick video because I shot it with my cell phone. But as you can see she picks up the loaded fork, brings it to her mouth...and...ready for this...doesn't throw it!!!! Mostly we have her aide Kim from this past year to thank for this! They encouraged us to send in things that needed a fork for lunch just for this purpose. The short video doesn't show it, but she will sometimes put the fork on her lap because the routine with Kim was "eat the food, put down the fork, and put your hand back in your lap." They really stressed the waiting and having her hands in her lap because other wise she couldn't eat at the table with the other kids because she'd steal their food! So here is Caitlyn's Fork Process...Who knows if she'll ever be able to poke the food...but for now we'll take this...(we tried the spoon...We both ended up covered in yogurt, so for now it's all about The Fork)

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.







video

Tuesday, June 24, 2008

Chewlry, Neurology and school



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

In My Daughter's Eyes

It occurs to me that not everyone in the world has the same love for country music that I do. That being said, if you love someone with Rett Syndrome, you absolutely must hear this song!!! Even my manly husband will admitt that this song brings slight tears (never full on tears) to his eyes. Every time I am in the store or at the park and some stranger comments on how beautiful my daughters eyes are, I just have to smile. It is then more than ever that I stop and think of every other Rett child in the world. Our daughter's eyes are amazing, and they show everything...Enjoy

Thursday, June 19, 2008

A quick school update

Wow, I think this counts as twice in one day since last nights post was after midnight! Anyway, I spoke with some nice man from the school district today. Caitlyn will attend school July 7th-August 1 for 1 1/2 hours a day Monday-Friday. I guess this is better than nothing. It will give me the ability to breath for a couple of hours, since she will ride the bus. Well one thing is figured out...Still no idea what September will bring...hmm..Should I test them and see if they read EVERYTHING in the IEP, or let them know that she will indeed need an aide? I think they'll figure it out...I'll just send a note in that says "Please don't let my daughter eat the Lego's." It will take them about 5 seconds to see that she needs someone there to help her direct herself...We shall see how the month goes, and then we can decide for next year if it was worth it or not.

Blog Worthy Things

I think I posted too much for a few days, because now that I haven't for awhile, people are asking what's up! I wish I had a ton of pictures to show you, but I don't...I will soon, hopefully.


Thursday June 12th was Caitlyn's end of the year party. I went and it was a blast. She has a total of 10 kids in her class, and she is one of just 2 girls. One little boy (whose mom I know well) took Caitlyn's hand and lead her to go line up to go inside. (I have a picture of this...but they are old fashion and I don't have them developed yet.) And the highlight of the whole day...I have pictures from this, but I truly wish I would have been able to capture it on video...They always do musical chairs for their parties. (no chairs go away, everybody wins) Well, Caitlyn had had enough of walking in circles, so she broke away from her aide and started dancing on her own. The other little girl (who is almost a full head shorter than Caitlyn) came up and said to Caitlyn's aide "I want to dance with Caitlyn." So the aide held out Caitlyn's hands for her to grab. The danced together, and then (ok...mommy eyes tearing up as I type) the little girl put Caitlyn's hand up in the air and turned, so it looked as if Caitlyn was spinning her. I got teary standing there in the classroom seeing how much each of those kids really cared about my Caitlyn. (until I get my act together and develop the pictures, I hope you can picture in your mind this Kodak moment)


Father's day was fun! We drove to the top of the pass to meet my husbands aunt and pick up my brother-in-law. He is home on leave after 11 months in Iraq. We are all very thankful that he came home safely. On our way down the mountain, we stopped in Snoqualmie to go to the railway museum. (my husband is a bit of a train person) They do train rides throughout the day, and since it was Father's day, dad's road free! We took the short ride (about 25 minutes) that goes down to the falls and back. Here is a picture of the falls...They are just beautiful. Just on the other side is where the track runs. (I love Washington landscapes) We did this train ride when Caitlyn was about 2 weeks old. It was neat to do again, and Caitlyn loved it.


I wish I could say I had an update on the educational front, but really I have no clue. We still don't have a clue what is going to happen next year, right now we are trying to get answers on what will happen for the summer. I hope by the end of the week I will know a little more.
I quit my job because apparently not working is the only way to afford health insurance! Hopefully by the end of the summer we will have SSI up and running, and also have some Medicaid Personal Care hours to give me a break...
I promise to update again soon. Thanks for reading about my princess and her crew...(yes, she runs the show around here.)

Sunday, June 08, 2008

A fun long weekend-and a book


Well, since Eric headed over the mountains to spend time with his family this weekend, Caitlyn and I have been enjoying some mother-daughter time. Since Caitlyn's diagnosis, I have become active in the ARC. On Friday they had a Special Connections Carnival. There is nothing more exciting than being around other parents who "get it" while our children have fun. As you can see, Caitlyn had a blast with the bubbles. I kept moving her back to the bubbles so she wouldn't be so irritated that mommy wouldn't let her go in the bouncy house. She saw all the kids having such fun, and wanted to go in...But mommy knew she'd be terrified, so we stayed on solid ground. They had a petting zoo which consisted of some poodles dressed up in costumes, and a couple of quite large golden retrievers. Of course Caitlyn loved the doggies!!! Yesterday was a little big more low key. And then today I felt brave and took Caitlyn and her friend Jaymes to church. (what was I thinking?) They had fun, but Caitlyn was obviously tired. I decided it was time to go after she sunk her teeth into my arm fairly hard in front of everyone! Luckily we had made it through the service and I got my 30 minutes alone...Now both kids are napping for another 20 minutes or so and then I will drive Jaymes to his mom. I hope Caitlyn will put up with a little bit of shopping after that...
A few months ago I bought a book called "Writing to Heal the Soul: Transforming Grief and Loss Through Writing." It is written by Susan Zimmerman. She also had a book called "Grief Dancers: A Journey into the Depths of the Soul" (or called "Keeping Katherine.") "Keeping Katherine" was the first book I read having to do with Rett Syndrome, even before I ventured into the great big "Rett Bible." Some days I think I read it too soon, and then I think about how much I related to the feelings that Susan had. I was able to relate to the anger and the wanting to be away from it all. In "Writing to Heal the Soul," she says about "Grief Dancers/Keeping Katherine": "I had always sought the miracle of a cure for Katherine. I wanted her to wake up one morning and start walking and talking. I wanted to be one of the lucky ones who beat the odds. By the time the book was finished, a different type of miracle had occurred: I'd stopped hurting." She also says "How do I let people know that only through writing was I able to let go of my dreams for Katherine and love her as she is, and my life as it is?" Susan's daughter is older, born in the 70's. It wasn't until Katherine was 7 that they realized what it was that she had. As a mom of a young girl with Rett Syndrome, I feel very fortunate to be raising her in a time where there is a real possibility of a cure. Even though that is a real possibility, I still know that I need to let go of the dreams I have for Caitlyn. The dreams that every mom has for their daughters when they are born. So, I have decided that after over 2 years I am going to take the grief head on and deal with it. I will start making my way through "Writing to Heal the Soul," in hopes that I can begin to reach a sense of acceptance for everything that we have been dealt. It helps going through a grief acceptance book that is written by the mother of a daughter with Rett Syndrome. As I go through the book, I may share some of my writings, as I know from experience that it helps to know others are in the same place you are. I will for sure let everyone know what I think when I am done.
In case you are wondering, we still have no clue what is happening for Kindergarten. It is crunch time with only 2 weeks before school is out.

Sunday, June 01, 2008

A couple sweet stories to share

I have been thinking a lot about cute little things that have happened in the past year and thought of this sweet story I wanted to share.

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!!