Sesame Place

The Philadelphia Children's Variety Charity is hosting their Sesame Place
Challenge tomorrow. I am so excited were going! They buy tickets and give them to families who have children with disabilities. The park will only be open to such families. To receive the tickets all I had to do was fill out an application and list that Rylie has Down syndrome. See, there are so many great things about having a child with Down syndrome. LOL! They sent us five free tickets for the whole family. I haven't been to Sesame Place since I was a kid. Karlie went to Sesame Place a couple times when she was younger because her Aunt Kim and Uncle John took her! I think Rylie is absolutely going to love it there. She was excited today when I was showing her the Sesame Place website. I'll have a follow-up post with pictures! They also have this event in the fall, so if you live in the Delaware Valley area, don't forget to sign up for tickets next time if you have a child with a disability. If anyone in the area is going tomorrow, let me know! This is a great event to meet other families!

Created For Good Purpose

When I was pregnant with Cesalie I found a baby/pregnancy website where pregnant women go on and talk about their pregnancies with other pregnant moms week by week. Then after you have the baby you can share your babies experiences month by month. You can create your own VIP page and it's really a lot of fun. They have a site search and every once in a while I will go on the site search and type in Down syndrome. A lot of the expectant mom's are having Nuchal scans, CVS's, Ultrasounds and Amnios. I just feel like if I found someone who's baby is going to be born w/ Down syndrome, I could send them a message and tell them about my Rylie and offer support to them. Actually I have done this! Anyway, today I decided to do a site search on Down syndrome and this is what I found:


had a nuchal scan..thats when they 1st thought my baby mght have a chromosome problem. and sure enough i got the cvs and the baby has down syndrome. its so0 depressing reading about how the baby looks right now. im terminating the pregnancy. i dont want to but im so0 young and i think its for the best. i think its the right decision for me. i feel horible and im extremely depressed. 2 miscarriages and now this..hope you all have healthy and happy pregnancies and never have to go thru nething like im goin thru. baby dust to all!

By the time I went to this persons VIP page(which was as soon as I read this) I realized she had already terminated the pregnancy. I am shocked and saddened? WHY? Because, apparently if you are going to have a child like Rylie, then that child does not deserve to live. Why didn't anyone in the medical field direct this poor girl to another parent of a child with Down syndrome. Why couldn't someone in the medical field convince this poor girl that people with Down syndrome can do things like walk, talk, run, learn, have fun, enjoy their families, make friends, fall in love, get married, swim, ride horses, play t- ball, play soccer, go to dance class, gymnastics and countless other things. Why didn't someone tell this poor girl that children with Down syndrome don't suffer from some horrible disease. Down syndrome is not a disease by the way.

Now, believe me ,I know that there are children with Down syndrome who have multiple health issues. I know there are children with Down syndrome who are not verbal and maybe will never walk. But does that mean their life is not worth living? Absolutely not! Their parents love them just the same and know they are blessed, despite health issues. Any child can be born healthy and then unfortunately can end up getting sick, or having a tragic accident that could leave them with brain damage. Would anyone then say, this child who was once perfect and healthy should no longer live. Of course nobody would ever say that! Why do some people think only healthy, perfect babies have the right to be born. I'm so sick of it. Some people in this world think a person like Rylie shouldn't be born. People need to be informed. Our blogs need to reach all types of people, not just those of us who have kids with Down syndrome. Doctors need to send the expectant parents to us , not the genetic counselors whose job it is to tell the expectant parent how much time they have left to get an abortion. By the way, I know there are good doctors and counslers out there, who do encourage the parents and give them the positives, but since 90% of Down syndrome fetuses are aborted, I don't think there are too many. Just my opinion.

Expectant parents need to be informed of the positives. And, yes they should also be aware of the health issues that may or may not arise. But they shouldn't be pressured or talked into an abortion just because the baby has an extra chromosome. I wish these doctors and genetic counselors would push for ADOPTION. There are hundreds if not thousands of people out there who would love to adopt a child with Down syndrome.

I don't think there is anything wrong with having Nuchal scans, ultrasounds or amnio's. I had the Nuchal scan when I was pregnant with Cesalie and ultrasounds with all three of my girls. I just don't think these test should be used as ELIMINATION tools.



Recently Alaskan Governor Sarah Palin gave birth to a baby with Down syndrome. You can read all about it by clicking here. I love what the family said in a press release:

Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

That is music to my ears. And that is the whole point of this post, that every baby is created for good purpose.

Reflux

I was so happy we were able to scratch a doctor off our list this year. Rylie had been seeing a GI doctor since birth due to her anal stenosis. I previously wrote about it here. This problem was fixed at birth and hasn't been an issue since. The GI doctor just wanted to follow up with her each year. But I soon realized this appointment was kind of a waste of time. He would come into the office ask me a couple questions and leave, saying- see you in a year. After talking with her regular pediatrician, we decided it was not necessary to see the GI doctor anymore unless any problems ever came up.

I started noticing lately that at times Rylie makes a noise as if she is clearing her throat and then spits up. It can be during any time of day, sometimes even hours after she has eaten. I called her pediatrician and described everything to her. She said it sounds like reflux and prescribed her Zantac. She said wait and see if the medicine works and if not we will have to see the GI doctor. I thought it was strange that she is five years old and developing reflux. I honestly thought that was something babies got and then outgrew. Rylie didn't even have reflux issues as a baby.

After talking with some other moms from the Downsyn forum(in my opinion that is where the real experts are) it sounds like reflux is pretty common with our kiddos who have Ds, and after listening to some of their advice, I think I just want to take her back to the GI doctor and have her thoroughly checked out. I have started giving her the Zantac in the mean time. It's only been one day so I'm not sure if it's working yet. Actually, Rylie is great at taking medicine, but apparently this stuff is really yucky. She has been spitting it out. I started putting it in her juice , so I'm not even sure if she's getting it all.

Rylie is a healthy girl. I am grateful. I just remember this GI doctor saying I was gonna be seeing him for a long time and I thought we were going to prove him wrong.

Wordless Wednesday~She even talks to the animals!!

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Cesalie Moved Out!

Cesalie finally got the hint, packed up her things and went to her own bedroom. YAY!!!!

For four days in a row she has slept in her crib in her and Rylie's bedroom. They have both been falling asleep at the same time with no problems and no crying.

When Cesalie was sleeping in our room she would wake up in the morning crying and making her demands. I had to instantly jump up, pick her up, change her and get her bottle. Now when she wakes up she sees Rylie and Rylie sees her and they are having fun! Rylie is keeping Cesalie entertained for at least a half an hour before I have to go in and get them. It is so cute hearing them on the baby monitor. Rylie has been dressing up in a costume and funny hat and playing her wiggles guitar for Cesalie. All you hear on the monitor is Rylie singing and Cesalie laughing

So I hope I didn't jinx myself by posting this. I am just so happy she is finally in her own room and they are both doing great!

Karlie took this picture!

This past weekend we went to Peddler's Village. Karlie asked me if she could see the camera, because she saw something she wanted to take a picture of. Nice, huh? Maybe she will be a photographer someday.

Social Butterfly

When you go shopping at the mall, do you smile and say hello to everyone you see?-I do!
When your in line at the grocery store do you say Hi, How are you? to the person in line next to you?-I do!
And when your eating at a restaurant do you turn around to the people sitting behind you and say Hello, and also to every single person who walks by you?-I do!

I do, because Rylie does. If she makes eye contact with you, she is going to tell you hello, and ask you how your doing. Could you imagine if we were all like this, smiling and saying hello to each other everywhere we went? I know I can spend a whole day out by myself getting errands done, and I don't even look at anyone, let alone smile and say hi, but when I'm out with Rylie, I have to say hello and make small talk with everyone, and this is not my personality. Rylie challenges me to be more social, She challenges me to smile more at people. It's a good thing.

Rylie used to run up to people she didn't know and give them hugs and kisses, but she has stopped. It really isn't appropriate, especially since she's getting older!

With all this being said, this doesn't mean that she is your stereotypical sweet, loving Down syndrome girl. She will also throw a tantrum at the mall. grocery store and restaurant. She constantly yells NO! and she is very grouchy at times.

I just love how sociable and friendly she is. I hope when she goes to kindergarten next year, other kids will accept her. I hope she makes friends. I can't see how anybody who meets Rylie wouldn't want to get to know her more. She is also very funny and full of energy.