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.
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
Friday, July 10, 2009
Thursday, July 9, 2009
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!
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.
Sunday, June 28, 2009
Signing
Sadie has been signing "more" constantly and saying, "momomo" (more) the whole time she is signing it. She's even using it appropriately too. But it is also taking the place of want and being generalized. I'm just so glad she has realized that when she signs and says mo that she is letting us know she wants or needs something!
Last week, Meghan told me she signed doctor (you point to your wrist like you are feeling for a heart beat). I just thought that is such an odd sign for her to know. Granted we do say doctor a lot and we do go to lots of doctor appointments. I really thought she'd sign something else like milk, drink, cereal, or something I use daily. But sure enough, the other day, I said doctor and Sadie started pointing to her wrist...amazing!
On Friday, we were in the baby pool on the deck, the birds were chirping and we were just enjoying the nice weather. Sadie started looking around as if she was listening and she started pinching her pointer and thumb together and signing bird. I asked her if she heard the birds and both hands just started signing bird...wow what a great feeling. I will be so thankful if she can sign to us. Everyone will have to learn...which I've been saying for 3 years =)
Sisterly Love.
Thursday, June 25, 2009
Mooosic
So the girls rarely watch TV and it is really not for lack of trying on my part. They just don't seem to be interested. The only thing Shelbi will watch is Signing Time.
So this morning, I turned on Sesame Street...Shelbi said nooooooooo...moooosssic. Who's that sound like? My husband.
I change the channel to 902. We love digital music around here, but I can't remember what type of music is on 902. I just figure that's a good place to start. The 900's are the music channels. Both girls are sitting on the sofa, one on either side of me. The second the music comes on, I see it is the Hip Hop R&B channel, both girls hop up and start dancing. Daddy will be so proud!
So this morning, I turned on Sesame Street...Shelbi said nooooooooo...moooosssic. Who's that sound like? My husband.
I change the channel to 902. We love digital music around here, but I can't remember what type of music is on 902. I just figure that's a good place to start. The 900's are the music channels. Both girls are sitting on the sofa, one on either side of me. The second the music comes on, I see it is the Hip Hop R&B channel, both girls hop up and start dancing. Daddy will be so proud!
Tuesday, June 9, 2009
DaDa
Wow, what a great day. Sadie has been signing "more" for the past 2 days!!! She also ran up to daddy when he got home from work yesterday and said "dada." Mama comes more naturally to her and we rarely hear her say "dada." We were so excited to hear it!!! She also started jumping with both feet coming off the ground. Great accomplishments Sadie!!! I love you.
Thursday, June 4, 2009
Summer Plans
There's only a few more days of school left before summer break. We aren't sending Sadie to ESY (extended school year) with the public school because her teacher doesn't believe it will be a good transition for Sadie. We also decided that sending her to the private summer program would take away financially from our family and we can all do a lot with the money rather than go directly to Sadie. Sometimes everyone has to have a equal vote. With that said and as much as I love her dearly, we had to find something for her to do to have a break from our house.
She will be attending a animal/farm camp for 2 weeks from 9am to 12pm. They were wonderful enough to allow our attendant to go with her. She will also be attending MyGym summer program, which is the same hours. They are also allowing Sadie's attendant to join her.
In addition to that, we plan to go to the water park a few days a week, the zoo, and also the aquarium!
So far we have been spending a lot of time swinging on the swing set in our back yard and playing on the deck.
We did have our environmental modifications done to the house and they turned out good. First we had a child height rail put on the front and back deck stairs and also on the stairs inside. We also had gates put up at the stair entrances on the back deck. They installed "pool" locks on the gates. This has been great because I can open the kitchen door and the girls can play on the deck while I make breakfast. Sadie has also been able to go up and down the stairs all by herself because she has a rail to hold. Of course, I still have to be near and I've caught her a few times before she has fallen. I think with time and practice, she will be able to maneuver the stairs on her own. They also built crib style doors for her bunk bed so we can get her out of her crib and into a "big girl bed." I'll post pictures soon!!!
She will be attending a animal/farm camp for 2 weeks from 9am to 12pm. They were wonderful enough to allow our attendant to go with her. She will also be attending MyGym summer program, which is the same hours. They are also allowing Sadie's attendant to join her.
In addition to that, we plan to go to the water park a few days a week, the zoo, and also the aquarium!
So far we have been spending a lot of time swinging on the swing set in our back yard and playing on the deck.
We did have our environmental modifications done to the house and they turned out good. First we had a child height rail put on the front and back deck stairs and also on the stairs inside. We also had gates put up at the stair entrances on the back deck. They installed "pool" locks on the gates. This has been great because I can open the kitchen door and the girls can play on the deck while I make breakfast. Sadie has also been able to go up and down the stairs all by herself because she has a rail to hold. Of course, I still have to be near and I've caught her a few times before she has fallen. I think with time and practice, she will be able to maneuver the stairs on her own. They also built crib style doors for her bunk bed so we can get her out of her crib and into a "big girl bed." I'll post pictures soon!!!
Subscribe to:
Posts (Atom)
Time is a Thief
I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...
-
and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
-
Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past mont...
-
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...