Thankful

Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find any other families who write about their children. I know I do this when I'm feeling on the blue side. It always helps me to read about similar situations and find some comfort in other stories. The compassion that one mother has for another mother who also has a disabled child is an unbreakable bond.
Mostly my mood was prompted because my husband watched a 20/20 segment about a girl with Autism who they thought was severely disabled and unable to communicate. On day at the age of 11 she spontaneously started typing on the family laptop. The family had no idea their daughter had so much to say and she really was able to tell about her disorder in her own words. I'll post a link to her site soon.
So like I occasionally do, I googled chromosome disorder blogspot and family stories. I scrolled down the list and clicked on Noah's story. http://noahgrantjohn.blogspot.com/
I feel so touched and moved to have read part of Noah's story. He was born September 2005, the same year as Sadie. The first picture on his site was a picture of where he was buried last week. He wasn't yet 4, but he shares a common bond with Sadie...they were both born with RARE Chromosome Disorders. I feel so thankful that Sadie is here on this Earth and with us. Tonight I grieve for little Noah and his family. May they somehow find peace and comfort. My heart goes out to them.
Sent from my Verizon Wireless BlackBerry

speech

We are having a new speech evaluation next week at a new therapy office...

Pretty Girl

This in one of Shelbi's princess dresses from her birthday! So Pretty!
Sent from my Verizon Wireless BlackBerry

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

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

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!