Thursday, March 27, 2008

Nonsense!

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!

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.

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!

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.

Wednesday, March 12, 2008

Inclusion-Special Ed- So many thoughts........

Rylie is in the process of being evaluated for kindergarten. Obviously, because of her age she qualifies to go to kindergarten, but the million dollar question is -where will she be placed???? I keep hearing how great our school district is and how they really work with the parents, so I won't jump the gun or start worrying yet. I know that inclusion is the goal. I want Rylie to ride the regular bus. I want Rylie to go to a regular kindergarten classroom with a one on one aide. And, I want her to go to our home school(The school where her big sister goes). All five schools in our district are wonderful schools. If I didn't have other children it wouldn't even matter to me what school she went to, because like I said, they are all really great. I am afraid "they" are going to tell me that "they" think Rylie's needs will be better met at a school, other then our home school. I've also heard some things thrown out there like, maybe Rylie can go to art class and gym class with the reg. ed kids and then special ed kindergarten. Isn't the home school suppose to accommodate Rylie's needs or am I dreaming? Is inclusion always best? Does anybody reading this have a kid who only does special ed? I know I'm just rambling on. I have so many thoughts going through my head, and I just want to be 100% prepared for the IEP. I want what is best for Rylie, but I'm not sure what that is anymore. I'm afraid I'm going to make a mistake that I'll regret. I could even keep her in pre school another year, but something tells me It's really time to move on. Well, I would appreciate any advice or thoughts.

Wordless Wednesday-Rylie -Three Years Old



Click Here for more Wordless Wednesday

Monday, March 10, 2008

EASTER PHOTO SHOOT

My girls are picture perfect when they get their photos taken individually...


But try and get them all together for a picture and it's nothing but chaos...

Sunday, March 9, 2008

Random Questions


RK has started asking some random questions over at her blog. We can either answer her questions by leaving a comment on her blog or posting them on our own blog. I've been answering them by leaving a comment on her blog, but since I seem to be having bloggers block today, I think I'll make my own post. So here are the latest questions she has for us......

1.How many TVs are in your home? All hooked up to cable/dish/etc? Have you gone HD?

2. Do you have any VCRs in your house still or are you full DVD?

3. How many computers are in your house? All hooked up to the internet? How many video game systems (i.e. XBOX, Wii, etc.)?

4. What age is ok to have a TV/computer/game system in the child's bedroom?

5. Do you have DVD players in the car?

6. The big one.... Would you be able to take a media/technology break, like a day without? How long could you do it?

MY ANSWERS..........

1. We have 4 TVs. We have one in the living room, Our bedroom, Karlie's bedroom and one in Rylie/Cesalies bedroom. We have cable on all 4 TVS (basic). We get almost every channel except movie channels, which is fine with me because I never have time to sit down and watch a movie anyway. Sometimes we will rent a movie on Saturday nights. All of our local channels are in HD. It's pretty cool!

2. We had one VCR left in our house, but Little Miss Rylie jammed something in it and broke it. Can't remember what she tried to shove in there , but it wasn't a VCR tape. I would like to go out and get another VCR, because we have so many tapes on VHS cassette that we aren't able to watch, like our Wedding video, and tapes of when Karlie was a baby. Also a lot of kids movies.

3. We have one lap top computer. That's enough for us. Every so often we fight over it, but I win, so it's all good. I have no interest in video games, but Vince and Karlie enjoy them. Karlie has a GameBoy and a Nintendo DS and Vince has an XBOX and a GameCube.

4. Well let's see... Ceaslie has a TV in her room, so I guess 8 months old is OK, lol! I'm kidding, she shares a room with Rylie. Rylie has had a TV in her room for a few years and honestly, sometimes Rylie watching TV is the only break I get. So, I have no problem with TVs in kids rooms, as long as the TV watching is done in moderation. Sometimes we let Karlie take the lap top into her room, but we monitor every single site she goes onto. She is not allowed to receive Email or go onto any new site without our permission. I will keep it this way until she is grown up and moved out of the house.

5. No, we don't have a DVD player in the car, but we do have a portable one that we could hook up if we were to take a long road trip somewhere. We don't usually travel far, so it's really not necessary.

6. I wouldn't have a problem with taking a media/technology break for a few days. I could do without a TV more then a computer. I know when we go on vacation, I don't use a computer or a phone and I never have a problem with it.

Thursday, March 6, 2008

Somebody Likes Cesalie's Crib......


Thanks to everyone who offered advice on my Cesalie sleep dilemma. We are trying a few things, like trying to have Cesalie hang out in her crib more during the daytime.

Look who decided to join her, well at least somebody likes the crib......

Wednesday, March 5, 2008

Tuesday, March 4, 2008

The Professional Picture~Daddy/Daughter Dance


The photographer told Karlie that this was the best picture he took the whole night. I agree!

Monday, March 3, 2008

Spring weather, I love it!



About a week ago I posted pictures of the girls playing outside in the SNOW. Today they are playing outside, without coats and blowing bubbles. We have some strange weather. Tomorrow we will probably get a blizzard. LOL!!

Sunday, March 2, 2008

Cesalie, Please Go To Your Room!


Karlie was in her own crib, in her own room by 5 months old. With Rylie, it was 4 months. Cesalie is a little bit over 8 months old and she is still sleeping in a pack n play next to our bed. She has a nice crib waiting for her in her room, which she shares with Rylie, but she wants nothing to do with it. We put her in it and she cries and cries. It's so heart breaking. Well, on Friday night and Saturday night, we made the decision that she just needed to cry it out. She cried it out both nights, and finally fell asleep, but both mornings she was up at the crack of dawn crying again. Also, all this crying is disturbing Rylie's sleep, and Rylie needs her sleep. Believe me! So, tonight we gave in to Cesalie's demands and put her back in the pack n play next to our bed. I'm at a loss, I just don't know what to do. We even tried putting the pack n play in her room, but she just screamed. She does not like her room. And, also she is not napping well either. She will take a morning nap, but not an afternoon one. I feel like all she does is cry lately. She doesn't have any teeth yet, so I guess she could be teething, but I don't see anything coming in. My other girls were pretty laid back as babies. But not Cesalie, nope. Anyway, I am open to suggestions if anyone has any advice.

On another note, Cesalie is so very cute. She is really babbling away and on the go!
She is starting to eat solids a little bit better, she is finally showing some interest. We have also been giving her some Gerber puffs. At first she would gag and make a face, but now she is doing better and I think she likes them.