Oh and she pushed the "go potty" button and Sadie's attendant got her to the bathroom in time to go BM on the potty.
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Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife
Wednesday, December 30, 2009
Juice
Sadie just pushed juice on the twin talk and brought me the vecroed picture saying more (moe moe moe).
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Sent from my Verizon Wireless BlackBerry
Typo
Meant didn't in place of did with respect to if this originated from me or daddy.
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Sent from my Verizon Wireless BlackBerry
Getting it
Would it help you to get it if I say...
90% of oral language development is finished by age 5...Sadie will be 5 in April and says mama dada aahhh (open) moe (more) daaaiee (Daisy)
Genetically, she will NEVER be able to have children, assuming that she is able to reciprocate in a relationship.
She will not go to college.
She doesn't poop in the toilet.
She would just as easily pee in a diaper as on the carpet.
She CANNOT dress herself AT ALL.
She cannot go up/down stairs unattended.
She will pull a hot pot of water on herself (she doesn't understand danger).
She will wrap a cord around her neck.
She will put chokable objects in her mouth.
She looks normal, but her brain is not working properly.
Please don't be in denial, it is what it is, we deal with our lot in life.
We love her sooo much and she has accomplished so much in her own small ways. We are so proud of her, but listen people ... Do you hear me? We all are not the same and we are heartbroken that our daughter did not have normal genetic material. If you wonder...or ask like some do...no it didn't come from me or my husband. It was a random occurrence.
And we do love her so much, but that doesn't change the irritation when people starr because she is baby babbling or looking at her funny in the grocery cart because she is trying to bite the frozen green beans. She is different, but the most important thing to remember is the reality of her is that she IS intellectually disabled, but she is a little girl that loves and feels and she belongs to us. Ignoring her disability only pains us and we are open to discussion. But how many times do I have to explain the same thing to the same people. Just love her and don't ignore her that's all we ask.
Enough of my soap box.
Sent from my Verizon Wireless BlackBerry
90% of oral language development is finished by age 5...Sadie will be 5 in April and says mama dada aahhh (open) moe (more) daaaiee (Daisy)
Genetically, she will NEVER be able to have children, assuming that she is able to reciprocate in a relationship.
She will not go to college.
She doesn't poop in the toilet.
She would just as easily pee in a diaper as on the carpet.
She CANNOT dress herself AT ALL.
She cannot go up/down stairs unattended.
She will pull a hot pot of water on herself (she doesn't understand danger).
She will wrap a cord around her neck.
She will put chokable objects in her mouth.
She looks normal, but her brain is not working properly.
Please don't be in denial, it is what it is, we deal with our lot in life.
We love her sooo much and she has accomplished so much in her own small ways. We are so proud of her, but listen people ... Do you hear me? We all are not the same and we are heartbroken that our daughter did not have normal genetic material. If you wonder...or ask like some do...no it didn't come from me or my husband. It was a random occurrence.
And we do love her so much, but that doesn't change the irritation when people starr because she is baby babbling or looking at her funny in the grocery cart because she is trying to bite the frozen green beans. She is different, but the most important thing to remember is the reality of her is that she IS intellectually disabled, but she is a little girl that loves and feels and she belongs to us. Ignoring her disability only pains us and we are open to discussion. But how many times do I have to explain the same thing to the same people. Just love her and don't ignore her that's all we ask.
Enough of my soap box.
Sent from my Verizon Wireless BlackBerry
Thursday, December 17, 2009
Cardiology Appointment
This morning Sadie's Cardiologist said he was unable to get a good look at the holes in her heart (ASD, atrial septal defect; VSD, ventricular septal defect) because Sadie would not lay still enough during the ultra sound. Therefore, Sadie will be going under sedation at the children's hospital for a 30 to 45 minute thorough ultra sound sometime in January. The Cardiologist will also have scheduled a catheterization (at the same time) to repair the ASD hole at the same time IF it is found during the ultra sound that the hole NEEDS to be repaired. The idea is to sedate her once and just do the repair rather than tell us the results and do the procedure later. Best case: sedated ultra sound. Worst case: catheterization and repair the hole, which is called an Amplatzer Device (http://www.amplatzer.com/products/asd_devices/tabid/179/default.aspx ). Both of which we will be prepared for the same time if needed. This is obviously surprising news, but the doctor has reassured us that with all procedures there is risk, but that the catheterization repair is performed by a well trained Cardiologist who does nearly 50 a year.
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Sent from my Verizon Wireless BlackBerry
Monday, December 14, 2009
The tree
Sadie has been soooo good with the Christmas tree. She has become very taken with a few ornaments, which Shelbi promptly runs over to rescue and asks me to move higher. Other than that she hasn't tried to grab it or drag it or knock it over.
Saturday, December 12, 2009
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