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!!!