http://supportforspecialneeds.com/2010/07/21/eighty-five/ by my favorite blogger Robbert Rummel-Hudson, Schyuler's Dad
Sent from my Verizon Wireless BlackBerry
Wednesday, July 21, 2010
Friday, July 16, 2010
Microarray SNP results
Hello everyone! Sadie had the Microarray SNP test and a CBC blood test. We found out today that she is anemic and will be taking iron supplements. The SNP test showed that her new karotype is deletion 8p23.2 extra xp 22.13 to the terminal deletion. In short, she is missing more chromo 8 than we originally thought an...d she has a larger band of extra xp than we previously thought too. What does all this really mean....???? Not to much, nothing has really changed....I wish I could say differently, but Sadie is Sadie and she will continue to show us her path.
Tuesday, July 13, 2010
a disgusting topic, still funny none the less
While I haven't posted too much in the past few weeks, I found it funny to just go ahead and post this quasi-milestone....Sadie has been getting a complete giggle out of farting. There I said it. When the moment hits her, she will look dead at me, fart, then just so big and proud, she smiles, and follows that up with one of her classic squealing giggles.
With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.
I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.
And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.
On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.
Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.
Overall, we are having a wonderful summer.
With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.
I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.
And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.
On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.
Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.
Overall, we are having a wonderful summer.
Monday, July 12, 2010
Dear Universe
Thank you for the bizarre coincidences in the past couple of days....they are really getting me thinking. Although some say there are no such things as coincidences.....hmmmmm
Sent from my Verizon Wireless BlackBerry
Sent from my Verizon Wireless BlackBerry
Sunday, July 11, 2010
Sonnets
Elizabeth Barrett browning: 685. Sonnets from the Portuguese iv IF thou must love me, let it be for naught Except for love's sake only. Do not say, 'I love her for her smile—her look—her way Of speaking gently,—for a trick of thought That falls in well with mine, and certes brought 5 A sense of pleasant ease on such a day'— For these things in themselves, Belovèd, may Be changed, or change for thee—and love, so wrought, May be unwrought so. Neither love me for Thine own dear pity's wiping my cheeks dry: 10 A creature might forget to weep, who bore Thy comfort long, and lose thy love thereby! But love me for love's sake, that evermore Thou mayst love on, through love's eternity.
Sent from my Verizon Wireless BlackBerry
Sent from my Verizon Wireless BlackBerry
Thursday, June 10, 2010
end of school=beginning of summer
well...one more short week and another year of school will be over...summer school or extended school year begins...it still feels like a toss up to me...driving clear across town for 3 hours of summer school doesn't sound that exciting, but the 2 hour break I'd have would be great. ESY might also mess up our summer plans for the water park and beach, but then again ESY is only 5 weeks....see what I mean...I keep talking myself in and out of it. I guess the bottom line is...what is best for Sadie and the greater good of the whole family at the same time....ok still can't decide...
Saturday, June 5, 2010
recent obsession with ice
Sadie has replaced her bubble push talk obsession with ice. So I took one of her cheaper one push buttons and a photo of ice, I put it in a 4x6 photo sleeve and taped it to the refrigerator. Every time she wants ice she pushes the button. It seems that she is doing this every 2-10 minutes…. The idea is that she gets an immediate response and hopefully learns to push the buttons to communicate her desires…..hopefully….
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