SSI Continued

Ok, so maybe SSI isn't all bad. The problem really is the men in our lives...(love ya Eric!!) No, it's not fully his fault. What happened is that the address on his request to be the payee was different than the address on everything else because they took it off of his drivers license. When you change your address with the DOL they don't require you to get a new license, so his license has an address from 3 years ago! So a decision was made yesterday and we have been reinstated!!! Thank you so much Marsha!!!!!

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!

SSI.......

What a day! That's about all I can say. So, if you are another parent with a special needs child, you know may know something about SSI. Well, we were sitting around this morning thinking about bills and such, so Eric (daddy) called Caitlyn's social worker with the Social Security Administration to find out how much her check was going to be at the end of the week. At which time her case worker ever so kindly (really, she is a nice lady, and we know it's not her fault) informed us that we were no longer receiving benefits for Caitlyn. That means as of August 31 she wont have any health insurance. It also means that we are going to have to figure out a way to come up with rent money because she wont be getting a check this week! You may be wondering "why on earth have they cut off your benefits?" Well, the reason we received is...There is this wonderful thing set up for disabled people so they can collect benefits while the Social Security Administration makes their final decision. It is set up so there is no hardship on families while SSA researches the claim and gets all the info they need. This is where our benefits have been coming from. We were told today that we have reached the end of the 6 months. Our case worker doesn't know why they haven't made a final decision, all she knows is she doesn't have record of one, therefore we cannot receive payment, and Caitlyn wont have health insurance next month.
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!

It is working like a charm!!

I just had to say that the frozen PediaSure is working like a charm!! Caitlyn gets her special little dish of "Ice Cream" three times a day. So, we are able to get one can in her without having to fight her to drink it!! If anyone ever reads this that works for PediaSure, make the suggestion that they do Ice Cream!

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!!

Getting Creative with PediaSure!

So I'm know I'm not the first person to venture into the world of PediaSure with a child who is so very picky about what they drink. Caitlyn will drink any kind of juice, flavored water or plain water. We can sometimes get her to drink a little milk here and there...But not enough to make the introduction of PediaSure a smooth one! So our challenge has began. We need to get some weight on our girl. Day one gave us no results...Banana was our flavor of choice, and Caitlyn wouldn't even drink half a bottle. (Our goal to start with is a bottle a day.) So, we decided to start day two with a new flavor. We tried chocolate. She drank a little more than 1/2 a bottle. Ok, so I lied and told her it was "Chocolate Milk." (Have any other parents tried this stuff? Do I blame her for not wanting it, no not at all!) After a recommendation from Grandma, Caitlyn and I picked up Strawberry Icecream today! For day three, Our pediasure came in the following form:

• 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!

We are in the process of adding music

After reading another blog with back ground music, I decided to figure out how to do it for ourselves. We wanted to pick the perfect song to represent Caitlyn. Right now, it is "Angels Among Us." The final decision is "In My Daughter's Eyes (Everyone is Equal)." I hope to have it up by next week. Give some feedback and let us know what you think of our musical touch!

Tall and Skinny...3 year check up

Well, we took Caitlyn in for her 3 year check up today. Let me first just tell you how good it feels to go in for a typical doctors appointment with a special needs child!! Caitlyn did wonderful!! She is 39 inches tall (that's 3 feet 3 inches...At what point do we stop saying "she is ____ inches tall"?) and weighed 30.2 lbs. Her doctor was on with us with our concerns that she hasn't been able to keep on any weight in the last year. She has gained and lost the same 1 pound like 10 times! So, we are going to start her on some pediasure to try and get her to gain some weight!

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 :(*

Arm Braces

When Caitlyn was first diagnosed, and I began to read about arm braces, I told myself..."I'll never do that..It just doesn't seem cool...and I don't want my daughter to stand out!" Well as you can see from the picture, We are trying it out. She doesn't cry. She puts up well with them. I wont make her wear them all of the time...Just some of the time so that her poor little hands can have a break! She is still able to touch her hands together...she can still pick up toys and climb on the couch. This is just to give the mouthing a break. Her poor little fingers have gotten to where they are wet all the time! These braces are just simply a child's pair of wrist guards for rolling blading. They seem to work ok, but are a little bit more stiff that what I'd like. I think we're going to try and come up with something different. We'll do anything for Caitlyn...If the time comes when she fights the braces, and doesn't like them, we'll discontinue use for awhile. For now, we'll use them a little here and there so she can have a break!

So much information!!!

Our heads are exploding today with so much information! We got home tonight from Portland, OR. We had an exciting time at the NW Rett Syndrome Foundation Conference! This picture is of all the girls together...You can see the range of abilities. Our Caitlyn is the second girl in from the right in front. The lady behind her is the area "expert" Dr. Budden. We learned so much...A lot about genetic stuff that we had a little trouble processing...Some massage techniques...And something very interesting...Alot of Rett girls deal with bad constipation. Well they have found that girls in Italy don't deal with it. Can you guess why? Well the speculation is that it's the olive oil! So, I think we may give that a shot! It can't hurt, and it'll boost her calorie intake! It was sooooo exciting to see the older girls that were still walking, and able to feed themselves! I know that every girl is different, but Caitlyn is young and if we can teach her now, just maybe....just maybe she'll catch on and be a feeding expert!!!

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!!!

Happy Birthday, Caitlyn

Caitlyn turned 3 on Saturday, August 5th!!! Three years ago today she wasn't even 24 hours old. I can't believe that just 3 years ago are biggest concern was breast feeding! So much has happened since August 5, 2003. The biggest of which has just been in the last 6 months...At age 1, we were so blessed with a fast crawler! She was saying momma, dadda and waving goodbye. She seemed so on track with everything. Our biggest concern was trying to figure out why she wouldn't chew anything without a crunch to it! At age 2, Caitlyn had been walking for 6 months. We weren't hearing momma and dadda anymore and she wasn't waving goodbye. She was seeing a speech therapist, a physical therapist and going to a group class 2 mornings a week. She had seen a speech therapist who specialized in eating difficulties. Her chewing had improved!

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!!!!!

Are we crazy?

Tomorrow morning we are leaving to go to a Rett Syndrome Conference put on by the Northwest Rett Syndrome Foundation. http://nwrettsyndrome.org Here's the crazy part...We decided to take the train instead of driving. It is a 4 1/2 hour ride. Hopefully it will be a good experience for us. Since Eric's car accident last year, he just doesn't like to sit that long...This will give him the opportunity to walk around. Caitlyn doesn't like to sit that long either! I'll be sure to post and let everyone know how it went. We'll be back Sunday evening! I am excited to meet some other families that are dealing with the same Rett monster we deal with. It should be fun!