Wednesday, December 30, 2009

BM

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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Juice

Sadie just pushed juice on the twin talk and brought me the vecroed picture saying more (moe moe moe).
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Typo

Meant didn't in place of did with respect to if this originated from me or daddy.
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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.
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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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Tuesday, December 15, 2009

Speech

Sadie is swinging in this fabric sling in the gym at Speech. She had so much static in her hair.
That red fabric in the air is her in the sling.
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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.
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Saturday, December 12, 2009

Happy Girl

Hugging the giant stuffed monkey.
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Friday, December 11, 2009

New things...

Sadie has been showing more interest in the TV. She NEVER EVER used to watch it EVER. Snow White has captured her attention on the DVD at home and in the car.

A few days ago I signed and said No to Sadie, she responded with a modified sign of no and made the "n" sound. It was so awesome to see her copy me. That was the first time she's ever signed NO. Her only sign is more and clapping her hands for yes.

Saving the best new thing for last...Sadie got out of her bed at nap time on Monday. She managed to unlock the latch within a minute of being put down. When I left her room she was happy and laying down. I made a drink and walked to the sofa to catch up on my DVR shows. I immediately hear her calling MaMa in the kitchen. I couldn't believe it.

Well, sadly, this was end of nap time. I guess I was thinking it would end sooner or later for her, after all she'll be 5 soon. The big new thing happened at bed time when I went to lay her down. She had a normal developmental response and didn't want me to leave her. I guess this happens a lot earlier in life Shelbi always had separation anxiety, but Sadie was always happy to have her space at nap and bed time. She went completely hysterical and cried so hard. I couldn't bare to close and latch the door after that so I got the drill and took the door off. After 3 hours of her crying and using the Super Nanny back to bed routine, she finally fell asleep on the poof chair in the room adjoining her room. I picked her up while she was sleeping and laid her in bed. The next night we went through the same, except I attached a gate with eye bolts and cable ties around and to her bed. So the most logical place for her to go would be to stay in her bed. It worked and she cried 50 minutes. By Wednesday night she fell right to sleep after laying her down and she didn't cry at all. She went right back to her normal 11 to 12 hour nightly sleep. I am really missing the 20 minutes to an hour nap time in the middle of the day though.

Monday, December 7, 2009

Age

I just realized that today Sadie will be 5 years old in exactly 4 months. Wow! I love you baby!

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Sometimes

Sometimes I wish Sadie had a physical marker for her disability. It is exhausting explaining a chromosome disorder and Intellectual Disability to someone who sees nothing physically wrong with her. No one seems to understand and it is getting very frustrating. And they really don't care to understand. Everyone goes about their life in their own bubble secretly thinking this can't happen to them and pretending it doesn't exist or affect them. Oh shall we all be so lucky to be so naive.

If raising children is supposed to take a village then it is awfully lonesome. Thank goodness Sadie has a Medicaid waiver.
Sincerely,
A mother with a disabled child and everyone else is too afraid to touch her. She is the most wonderful, innocent child, full of kisses and hugs, eager to be held, and eager to look you eye to eye with her big blue eyes. I would trade anything to give her the power to learn.
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Thursday, December 3, 2009

Sooo tired

Sadie's 2 therapy sessions wiped her out, she fell fast to sleep in the car on the way home.
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Santa at the Aquarium


On November 29, we saw Santa at the Aquarium. Sadie doesn't understand Christmas or Santa yet, but she did have fun meeting someone new and saying hello. She blew Santa a few kisses and sat in his lap for a minute.
I'm so excited that Shelbi is interested in Christmas and Santa. It seems a long time coming for me to feel excited about having children during the Christmas season. I was so eager to do all the fun thing you do with children this time of the year that it has been disappointing to know that Sadie doesn't understand, but at the same time so joyful to see Shelbi show interest. And while Sadie might not really understand, she is enjoying going to see the man in the big red suit and getting joy out of seeing him either way.
Oh, this can't go without being said...Santa waved Meggie over to sit on his lap...honestly Santa?


staple removed

Sadie had her staple removed from her head November 27, 8 days after getting it put in. I got myself completely worked up about having it removed. When we went in to the exam room, I warned the nurse that Sadie would be difficult and she would cry and that she needed backup nurses to hold her down. Two other nurses came in and we looked at each other trying to get a game plan for the removal. I was holding Sadie in my lap facing me. Mary, our favorite nurse, wanted to see where the staple was. Sadie was so calm and when I lifted her hair the other nurse said quick pull it out (with the removal tool). Within 2 seconds the staple was removed before Sadie even budged. I was so relieved.