Friday, July 31, 2009

Debatable Postings

Sometimes I wonder if I should post real scenarios with the really people in our life. I would hate it more than anything to offend anyone, but isn't that part of sharing her story??? Does anyone really read this anyway?

So here goes...Sadie had a speech evaluation on Monday, which I consider to have been a waste of time. While the therapist giving the evaluation truly meant well, I would like to think that when I tell you she used a standardized test you will understand that that means showing a notebook to Sadie with a choice of 4 pictures. She said please point to..., but when I told her that Sadie won't do that or understand that she said well I'll ask her to circle it instead. When she asked Sadie to circle/pat the skunk. Sadie didn't respond to pointing/patting/or kissing the pictures. She simply wanted to hold the therapist's pen. I asked her what level she started on...she responded 4 year old....AFTER, I had already told her that Sadie's receptive language is 18-20 months and expressive language is 6-9 months old. AMAZING. Needless to say, She went to the beginning of the test and got NO results. I continued to explain that we want to focus on basic communication/sign language/picture choices with photographs/concrete objects.

Who wears the Pants?

This morning we were all sitting on the kitchen floor doing goodness knows what...making breakfast holding Sadie then holding Shelbi? Shelbi took her pants off a few minutes earlier when daddy put her on the potty. Somehow she got some pee on her pj bottoms? Either way, I told Shelbi to go get some pants out of her dresser, which she is usually interested in going to do. A few seconds went by and Sadie bolts off to Shelbi's dresser by herself all the while Shelbi and I are sitting on the kitchen floor. Just a few seconds go by and Sadie walks back into the kitchen holding 4 pairs of pants and throws them on the floor next to Shelbi and me. Two pairs of jeans and 2 legging type pants. My jaw hit the floor, not only did she go get pants, she got them out of the dresser drawer and brought them to us! WOW! Good for you Sadie! I'm so proud of you!!!

Love, Mama

Photo was taken a few weeks ago at Surf Camp for disabled and underprivileged people

Saturday, July 25, 2009

The Skinny

Sadie has been off her anorexia medication that makes her hungry for 2 months. She hadn't been eating that much and I'd decided to just keep trying to push food on her rather than give her the medicine. The periactin is an antihistimine that was discovered to have a strong appetite stimulating side effect. It is used on anorexia patients. All things have a consequence and in her case it puts her a groggy cranky mood. Her temper tantrums increase and she just not happy.

Unfortunately, she's gotten that skinny look to her little body again and she can't bear to lose an ounce. She must have grown talls because I don't believe she's lost any weight.

I started giving her a small dose every other afternoon, which seems to be pretty effective right now. She's been eating better and I haven't had to work so hard to feed her.



Sent from my Verizon Wireless BlackBerry

Friday, July 24, 2009

fighting

I'm watching my girls fight and wondering if there is any good reason other than them hurting each other to cut in. I guess the positive thing is they are doing what normal sisters do and that is fight over space and toys. Funny thing is that I'm not really even that affected, it is almost humorous watching them fight over the big purple fluff chair in the playroom. Life is somewhat normal...sibling rivalry...OK i take it back they are crying now... and I'm having to console!

Thursday, July 23, 2009

Miss Independent

Driving me crazy! Funny how Sadie now spills her drinks less than her 2 year old very coordinated sister.
Sent from my Verizon Wireless BlackBerry

Thursday, July 16, 2009

Putem' Around Assistive Tech Device

One of those days

This morning has been one of those insanely stressful mornings. Our electricity went out minutes after I heard Sadie through the monitor. She was sweetly calmly listening to the Baby Einstein Aquarium crib toy. Unexpectedly, the electricity went off. I guess the only way you might expect that is if you didn't pay your bill. This was unexpected. Our house is secured with an alarm system, which obviously needs power. Needless to say, the alarm started beeping 3 beeps every 2 minutes running off battery. That was the beginning of the freaking out. Small unexpected sounds really affect her sensory processing. The beeping also signaled to the dog that the alarm might go off and and she started shivering and trying to get me to hold her too. Sadie at that point refused, absolutely refused to let me put her down. Every time I tried to put her on her feet, she arched her back and started freaking out. Holding a 34 pound 4 year old constantly isn't getting easy. My wrist is starting to hurt again after I finally started getting relief from wearing my wrist brace for severe tendonitis.
To top it all off, my cell phone didn't charge properly last night because the "baby proof" outlet cover didn't allow the proper contact with the plug. So not only is there no electricity, there's also barely a phone. It has made me realize I should buy a regular old land line phone for emergencies.
So I call Bill and quickly ask him to call our neighbor. Our sweet "grandmotherly" neighbor runs over to give me some help. Sadie absolutely LOVES her and immediately reached out for her when she walked in the door. It's like passing a crying child over to someone who you know can calm them. It is a relief!
After the newness of our neighbor wears off, 5 minutes, Sadie starts freaking out again. Continuing to arch her back and throw herself down when the alarm beeps. She threw her self back and hit her head on the seat of a bench and then really let loose with the wails and tears.
Finally, the electricity comes back on and the only thing on my mind is getting that coffee maker on!!!
As the morning goes on for the next hour, Sadie manages to squeeze her juice box on the floor, crumbly a whole chocolate chocolate chip cookie in her mouth and spit the whole thing out in a 3 foot area, strip down to her birthday suit 2 times, flip off the couch backwards, and drool a red Flinstone vitamin all over our white tile kitchen floor. As for the juice box and cookie at 9 am, I will give her what ever it takes to calm her down and make her happy. It is just not worth it and I choose my battles wisely.
Meanwhile, we are in the playroom and she is wandering around and calm for hopefully a few minutes longer, so I can finish my venting and find strength to make it through the next 40 minutes. Nanny is picking her up at 11 and I can't wait!!!
Oh and I must give credit to our other sweet angel for handling the situation with grace.
Gotta run, Sadie is now stripping for the 3 time, time to alter some more clothes so she can't get out of them.

Friday, July 10, 2009

sadie

Yesterdays 'test' message was a mobile test from my phone. So cool that I can send blogger a text and it will post to sadies blog.
Some new things with Sadie...she signed her own variation of shoes a few days ago. We watch signing time a lot. So after seeing the song segment on shoes, I asked her to sign shoes. It was so sweet. We just need her to functionally learn and use milk, water, eat. On a positive side, we've been using the one picture switch and she really seems to be picking up on the idea of pushing the milk picture and hearing it say "milk."
She has been very clingy lately leaving me feeling like a mama monkey at the end of the day. Her arms wrapped around my neck and her legs gripping my hips, she doesn't give me a second alone. I increasingly feel guilty as I see Shelbi fight for her own place. Which is why I let her stay up later, she has been harder to get to sleep because I love to cuddle and read to her when Sadie is already in bed. I often wonder how Shelbi will be shaped by her sister's disability.

Saturday, July 4, 2009

Blueberry Picking




We went Blueberry Pickin' with Memaw on Wednesday. The girls had a great time. Sadie mostly rode in the wagon, but Shelbi had a great time picking and eating. It was really hot and both girls got super red faced. We picked a small sand bucket full. Meghan also joined us, which always makes the outings more enjoyable!



After about an hour we had enough of the heat. I had to put cold water bottles around Sadie and Meghan rubbed her head with an ice cube. She doesn't regulate her body temperature well, so she over heats easily in the summer. Same goes for the winter season, she gets cold fast and her hands and feet turn purple.



Afterwards, Memaw treated us to a chicken stuffed pizza from Pungo Pizza, it's a locals favorite! Sadie was definitely over stimulated and had a minor breakdown in the restaurant. She doesn't eat well outside of our house, but she was hungry. She got feed when we got home. Shelbi enjoyed her pizza, I did too, but it is stressful taking them both out.