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!!!!!