Tears of joy, Sadie had a BM on the potty at school today and at home a few times this week!!! Yay Sadie!!!
Sent from my Verizon Wireless BlackBerry
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, September 30, 2009
Tuesday, September 22, 2009
Dada
Sadie has randomly said Dada just a handful of times in her short 4 1/2 years, but tonight she said Dada over and over and over again. She stood in the hallway and literally yelled Dada toward the family room where he was sitting with Shelbi. I just kept encouraging her by saying where's Dada and say Dada while pointing to my mouth! Such a wonderful feeling!!! I can only imagine how happy that makes Daddy.
Sent from my Verizon Wireless BlackBerry
Sent from my Verizon Wireless BlackBerry
Friday, September 18, 2009
Delayed Response
Dear Friends and Family,
Forgive me as I am typing on my Blackberry. If I had only gotten a Netbook and a cheap phone, I'd be typing easier on the comfort of my couch rather than getting a cramp in my pinky finger while I try to hit the right keys with my thumb nails on my phone.
Sadie's EEG results came back after the Labor Day weekend...NORMAL!!!! Yay!!!!
So this means, she is having little quirky behaviors. I guess that's not too bad. It just gives people more to stare at?!
As far as school goes, she is having a wonderful time and seems to have adjusted well. (Ouch my pinky is hurting). She is attending a Reverse Mainstreaming class (Inclusion) Monday to Friday. The teachers are amazing and so is the speech therapist. Sadie is working on many functional skills and assistive technology (buttons that say words for her). She is getting OT and PT also. I'm really enjoying my time with Shelbi especially knowing Sadie is being taken care of so well!!!
Sent from my Verizon Wireless BlackBerry
Forgive me as I am typing on my Blackberry. If I had only gotten a Netbook and a cheap phone, I'd be typing easier on the comfort of my couch rather than getting a cramp in my pinky finger while I try to hit the right keys with my thumb nails on my phone.
Sadie's EEG results came back after the Labor Day weekend...NORMAL!!!! Yay!!!!
So this means, she is having little quirky behaviors. I guess that's not too bad. It just gives people more to stare at?!
As far as school goes, she is having a wonderful time and seems to have adjusted well. (Ouch my pinky is hurting). She is attending a Reverse Mainstreaming class (Inclusion) Monday to Friday. The teachers are amazing and so is the speech therapist. Sadie is working on many functional skills and assistive technology (buttons that say words for her). She is getting OT and PT also. I'm really enjoying my time with Shelbi especially knowing Sadie is being taken care of so well!!!
Sent from my Verizon Wireless BlackBerry
Tuesday, September 8, 2009
Saturday, September 5, 2009
School Starts Tuesday
On Tuesday, Sadie is attending public preschool in a pilot program called Reverse Mainstreaming. The goal is to have an inclusion class for the preschoolers. They are having 6 special ed students and 6 typical developing students as models in the classroom. We are so excited to have Sadie in this new program. She is such a social and happy little girl. We want her to enjoy life and learn from seeing her peers do regular and normal activities. Yay!!!
EEG LAB
The video monitored EEG went pretty much as expected, the only difference this time is they used a type of super glue to keep the wires attached to her head. The tech was awesome with Sadie. She took us back to the room where she laid Sadie down on a hospital bed and wrapped her in a blanket burrito. We decided to use the glue instead of the goo because one tug would pull the wires off. The tech mapped out her head with the red grease pencil and then prepped each of the 26 spots for the electrode wires. Each wire has a small metal disc attached which is then placed in the goo or in our case she laid it on her head covered it in gauze and squirted the glue on the metal. Immediately after that she used a small air blowing thing and held the end to blow on the glue so it would quickly dry. The glue smelled like super glue, which she said it was similar to. After all 26 spots were finished, she wrapped Sadie's head in gauze. She wrapped all the wires together in gauze too and attache that to really really long wire. All of that was put in a backpack and we were sent into "the room." It was the size of a really small bedroom. There was one twin bed, one recliner hospital chair, on child size table and two chairs, a TV, and a sink. There were two closets which held too many toys and too many small parts. No child needs to dump a box of miniature sized legos all over a room. But we did. And the rest of the toys came out and made a huge mess.
Bill and I took turns going out for a break. Our main objective was to keep her in view of the camera and make sure she didn't pull out the wires. We succeeded!!!
Four hours later, she had a couple of her "episodes" and we were back to the other room to remove the electrode with straight Acetone. So much for all my organic food and not exposing her to chemicals. We were sent home. We expect to get some news Tuesday!
Her head has been pretty sensitive, obviously and she looks like she has a bad case of dandruff because the left-over glue hasn't come off yet.
Another test behind us.
Bill and I took turns going out for a break. Our main objective was to keep her in view of the camera and make sure she didn't pull out the wires. We succeeded!!!
Four hours later, she had a couple of her "episodes" and we were back to the other room to remove the electrode with straight Acetone. So much for all my organic food and not exposing her to chemicals. We were sent home. We expect to get some news Tuesday!
Her head has been pretty sensitive, obviously and she looks like she has a bad case of dandruff because the left-over glue hasn't come off yet.
Another test behind us.
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