So Rylie is still in the process of her kindergarten evaluation. Every time a therapist goes to her pre school to observe her, they also send me home a questionnaire to fill out and send back to them. It's just a way for them to get a little bit more info on Rylie. Yesterday the school district psychologist sent me home a behavior assessment questionnaire to fill out. It had the most ridiculous questions on it. What a waste of time! I actually wrote to her on the notes section that this was a waste of my time and that they need to come up with some more suitable questions for a 5 year old. No wonder everything with the "system" takes so long. Here are just a few of the questions.....................................
1. Does your child walk to their friends house by themselves and remember how to get there?- No, I make her take a map with her.
2.Can your child take part in a two way conversation about politics? -I always tell Rylie never discuss religion or politics.
3. Does your child budget her money well?-Yeah, when she gets money in a birthday card she throws it over her shoulder, but she never spends it all in one place.
4.Do others feel they can talk to your child about personal and emotional problems they are going through? You can talk to her about it, but she won't really care. LOL!
Thursday, March 27, 2008
Wednesday, March 26, 2008
Monday, March 24, 2008
My Lunch Date
I mentioned before when I posted Rylie's birth story that she was transferred to the local Children's Hospital after birth and she had a two week NICU stay. Those two weeks were the hardest two weeks I've ever had. Every day during the NICU stay, Vince and I would manage to leave the NICU and go somewhere to get something to eat. We would leave the hospital and go to a diner, but mostly we just went down to the cafeteria. I remember how we would sit in the cafeteria and talk about Rylie. What's going to happen to her? Will this test or that test come back OK? Down syndrome this and Down syndrome that! I was always so sad in that hospital and cafeteria. I would look at everyone in the hospital, the doctors, nurses, students etc, and think,look how happy and normal they are, will I ever have a normal life again? Lets just say I cried a lot during those talks with Vince about Rylie, while we sat there in the cafeteria......FAST FORWARD FIVE YEARS LATER.........................
Last week I took Rylie to the same Children's Hospital for her eye appointment and X-rays for AAI. We had time in between appointments for lunch, so we went to the cafeteria. Yes, there I sat with my healthy, beautiful, funny daughter who I love more then words can say. I sat with her and we had lunch together. She didn't want her french fries. She wanted my salad. She waved HELLO to every person who walked by us. It was five years earlier in that same cafeteria I cried, because I didn't know what life with Rylie was going to be like. I was so sad back then and couldn't imagine how great everything was going to turn out. I enjoyed our lunch together that day. I never could have imagined I'd be having lunch with Rylie five years later in the same cafeteria where I use to cry about her.
On a side note...........Her X-rays came back normal, but her eye appointment revealed that she needs glasses. She has far sightedness and astigmatism. I would have never thought. I didn't have any concerns about her eyes. But the doctor said she needs glasses. We had her fitted for them and she should get them next week. Then I'm sure she will break them and we will keep getting them fixed or replaced every other week. LOL!!! I just can't see Rylie keeping glasses on. She has already broken a few pairs of Vince's glasses. I think I should order them by the case. Oh well, we shall see!
She did have an eye problem at birth called Optic Nerve Hypo-plasmia, but thank God it never effected her vision. If her vision had been effected by this condition, it would not have been able to be fixed by wearing glasses or surgery. I want to make a whole post about this. It's a great story! I just need to find my notes and Rylie's old medical records.
Last week I took Rylie to the same Children's Hospital for her eye appointment and X-rays for AAI. We had time in between appointments for lunch, so we went to the cafeteria. Yes, there I sat with my healthy, beautiful, funny daughter who I love more then words can say. I sat with her and we had lunch together. She didn't want her french fries. She wanted my salad. She waved HELLO to every person who walked by us. It was five years earlier in that same cafeteria I cried, because I didn't know what life with Rylie was going to be like. I was so sad back then and couldn't imagine how great everything was going to turn out. I enjoyed our lunch together that day. I never could have imagined I'd be having lunch with Rylie five years later in the same cafeteria where I use to cry about her.
On a side note...........Her X-rays came back normal, but her eye appointment revealed that she needs glasses. She has far sightedness and astigmatism. I would have never thought. I didn't have any concerns about her eyes. But the doctor said she needs glasses. We had her fitted for them and she should get them next week. Then I'm sure she will break them and we will keep getting them fixed or replaced every other week. LOL!!! I just can't see Rylie keeping glasses on. She has already broken a few pairs of Vince's glasses. I think I should order them by the case. Oh well, we shall see!
She did have an eye problem at birth called Optic Nerve Hypo-plasmia, but thank God it never effected her vision. If her vision had been effected by this condition, it would not have been able to be fixed by wearing glasses or surgery. I want to make a whole post about this. It's a great story! I just need to find my notes and Rylie's old medical records.
Sunday, March 23, 2008
Tuesday, March 18, 2008
FRIDAY IS WORLD DOWN SYNDROME DAY
Friday March 21st is World Down syndrome Day. Click here for more info. I have been sharing Rylie's life with everyone via this blog for a few months now. I hope I brought some awareness as to how wonderful raising a child with Down syndrome can be. Sure there are some struggles, but I hope I have made known just how proud I am of Rylie. On Friday,I think I will buy Rylie a cake and spend some time just celebrating her. If you have a child with Down syndrome, maybe you will be celebrating or doing something special in honor of your child. If you do ,leave me a comment or e mail as I would love to hear about it. FAMILY AND FRIENDS WHO KNOW RYLIE PERSONALLY, I would love to hear from you on Friday or whenever you have time- leave me a comment here on my blog or shoot me an email telling me how Rylie has touch your life, what she has taught you about Down syndrome, maybe a time she made you laugh or impressed you with how smart she is(ANYTHING). THANKS
Monday, March 17, 2008
DOWN
I took Rylie to a new eye doctor today, and as she was examining Rylie she says-Is Rylie DOWN ? Not does she have Down's or Down syndrome -just DOWN. I actually thought it was pretty funny. I said do you mean Down syndrome ? And then, while she was explaining Rylie's astigmatism(that's another post). She said it's common with kids who are DOWN. I just never heard anyone say this.
I can't believe at 5 years old Doctors are still asking me if she has Down syndrome. I should have said no, what are you talking about? LOL!
I can't believe at 5 years old Doctors are still asking me if she has Down syndrome. I should have said no, what are you talking about? LOL!
Sunday, March 16, 2008
Grandpop Victor
My wonderful grand pop went to be with the Lord this past Thursday. Our family will miss him so much. The past year he had been sick. My grand mom Mary was 100% devoted to him. She spent every single day by his side at the nursing home and hospital. We always told her that maybe she should take a break~ she wouldn't have it and she will tell you that she doesn't regret one minute. They were a beautiful couple married for 65 years. And all married couples should strive to have the wonderful marraige that they had. My grandfather was a christian and loved the Lord. He was faithful to always be in church. In getting ready for his funeral service the Pastor asked everyone to come up with just one word to describe my grandfather. Nobody could pick just one word. Here are just a few that everyone came up with...Faithful, Precious, Humble, Inquisitive, Loyal, Devoted, Patriotic, Wonderful and Dedicated.
Grand pop - You will never be forgotten and will always be in our hearts. Thank you for being a wonderful example of what a husband, father, grandfather, and friend should be.
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