Where is the year going?

Wow its December already. We finally got a tree up. I'm kind of slow about getting any other Christmas decorations up. Maybe NeVaeh and I will try to do some decorating next weekend. We finally got some pictures taken for our Christmas cards last week. Funny how many we need to take to make one kind of good one (or a couple sort of silly ones).

This year NeVaeh has been growing like a weed She is into 14/16 size clothes now and about 85 pounds. We have our newest addition little Sue Z Q our Sheltie puppy. Next year is sure to have a lot of events happening to our family! We will post later to update on that.

 NeVaeh had her Christmas concert at school the other day. It went pretty good. She actually looked like she was having some fun up there. She got to hold some bells and shook them with the music. She managed to stay up the through the whole concert!

We also caught her on a movie being goofy the other day. She is just a silly girl!

We need to start Christmas shopping. It seems like time is running out and I haven't even barely thought about it yet. NeVaeh has almost every thing she needs so not really sure what to get her. She is starting to enjoy playing with dolls now and as always loves her swimming. (She goes to every other week in the winter). She also enjoys watching many of her movies like signing times and she likes Strawberry Shortcake movies, and Alvin and the Chimpmunks now not telling what she will be watching a few days from now her interests seem to change movie wise. She is however a very decisive young lady and always knows exactly what she wants. When we go shopping it never takes her long to check things out and pick out anything be it food, clothes or toys. She is very good at filling the cart of things we really don't need though. NeVaeh is a very good girl though in that if I tell her we can't get it she usually will just put it back on the shelf......That is if I see it before its gone in the cart LOL. Little Miss has turned into quite the shopper! Well If I don't post again before Christmas may every one have a Merry Christmas!!

Halloween

Well its already November! Where is the year going? 

NeVaeh got to go Trick or Treating the Friday before Halloween at a votec in Sioux Falls and Main Street Dell Rapids. I worked Halloween so was glad they had this going on then. She had lots of fun but really wasn't into eating the candy once she got it. That really surprised me. She isn't a chocolate kid though and that's mostly what she got. She was the most excited about the can of pop she got and very clearly said POP. She signed "Thank you" after each piece of candy given to her. She was giggling and bouncing her bucket up and down as we walked down the side walk. It was so fun with her this year.

She was a bee this year as school assigned her a vocabulary word to dress as for school so that's what we went with for her costume. She is still doing great in school. When we went through the Votech in Sioux Falls we went with her cousins but when I tried to take their picture it was like snapping a picture of a moving target. LOL

 

The weekend before Halloween we got to go to my sisters to celebrate her youngest's 2nd birthday.  NeVaeh enjoyed playing with her cousins and many other kids there. She had lots of fun.

 This little blondie is her cousin Ruby. Now she is very small for her age but would you believe she's only 11 months younger than NeVaeh. NeVaeh is very tall and big for her age and looks like a giant around her . LOL

 NeVaeh could care less that cousin Clarice got presents as long as she gets the ribbons!!

Hair Cut

Well I went and did it. As you can see the final result looks kind of cute as we pose for a rather nonprofessional family picture (about 10 trys to get this one). 

I can't say I haven't gotten a lot of slack about this but I always trim NeVaeh's hair. I have only taken her to a hair dresser  a couple times before and figure since he only trims a little on the end I can certainly do that too. Well, In order to get NeVaeh to be "still" I put in a movie to distract her and then trim, a little at a time. Unfortunatly when she's excited she bobs up and down. This was a really good movie lol!! Clip!!! Oh Boy, My heart sank. I trimmed a little shorter then realized I went pretty short on one side. To straighten it OOOOOOOOO. Well after I combed it out I gave her a break because she was getting impatient and I pondered a while looking at her as the back stuck straight out.

  I knew then I had to layer it. I never tried it with ethnic hair before. Worried how much her hair would curl. I've done mine before but mine is straight but her's needs to be cut dry what  am I doing ugggggh.

Well I got brave and layered it. Keep in mind I had destroyed her bangs a couple weeks earlier...

She was not too happy with me. I gave her something to drink and a new movie so I kept her happy. After I washed her hair it didn't look too bad but when it dried she had horns sticking up.

Dan's comment.....If you don't have license to use a scissor don't use them! LOL

Well I took her to the Hair dresser the next day and he did some minor trims. He said I actually did a pretty good job...Yay me...(said bangs will blend in a couple weeks LOL) This (below) was right after we came home. I found some good moisturizer stay in conditioner called organic Olive Oil. Its like a cream so it tames it down a lot better. Oh yeah. When she was at the hair dresser I brought her portable DVD player and she watched Elmo saves Christmas. Otherwise Think she would have ran out the door and she would have not let him touch her hair. 

Thats why I have not taken her to a hair dresser all this time because of my fear of half a hair cut and her running out the door. Must say this is a very patient hair dresser! I think her was even going to start singing with Elmo! LOL

NeVaeh is enjoying her much shorter time of getting her hair done. School is going well and she continue to grow like a weed.

Fall 2011

First grade is going well so far this fall. Of course she spends lot of time in her own self contained classroom and little time actually with the actual classroom but she is doing well. No real behaviors or anything this fall like last fall was. She got her glasses a few weeks ago and will wear them for half hour to an hour at a time them take them off and sign all done. Much better than I expected. She is so much more mature this year than she was last year. She still works on an IPad in school and plays with her Ipod at home. Hopefully we will get it figured out if they are actually going to use the IPad for the communication device so we can purchase one. She still also uses her GoTalk but its getting old and we need to get something more complex that will better meet her communication needs. At home she's great to use sign language but school they work harder on using the device. She loves playing with her IPod at home!

She is vocalizing a lot more but not really saying too many words yet. She has the important words down... Mom, Dada, & Yeah, I can't begin to list the amount of signs she uses. She is consistent with her yes and no's when she signs them but not necessarily when she says them as she always says Yeah. She is a very decisive child and always knows what she wants.

I took pictures of her and thank goodness for digital camera as she wont stand still for anything!! LOL

NeVaeh is actually fun to go shopping with. She will pick things out as we go. I always tell Dan if there's something odd in the pantry its because NeVaeh insisted. She always remembers it too and asks as soon as we get home to eat it or play with it. 

We went shoe and winter coat shopping yesterday and she was great. I was even able to try them on her without any complaints or tantrums. She didn't even wander away while I tried to look for other styles of coats. This is such an advancement....last year she could only stay in the shopping cart or stroller now she walks along, cooperates and we have fun!!

She's growing up!

Where has the Summer Gone????

Sue Z Q

We got a new puppy about a month ago so we have a bit of a new adventure at our house! What NeVaeh doesn't get into anymore Sue Z Q does. NeVaeh had a little bit of warming up to do with her as it was last fall when old Copper passed away and he was a calm slow moving dog. Sue Z is pretty calm but very quick. She can jump. Very high might I add. Poor NeVaeh was holding food as high as she could and Sue Z Jumped up and grabbed it out of her hand. Boy was there yelling going on!! LOL NeVaeh is getting very aware now what she is doing  and more alert when she's eating :) She is also saying "No" loud and clear. Sue Z is good for her. NeVaeh will sign and say more when she has her 3minute puppy run barreling through the house and running into the walls. I don't know whats funnier watching Sue Z run smack dab into the wall or hearing NeVaeh laugh and scream. Oh yeah our shoes are no longer safe. If they are left on the floor we will find them in Sue Z's bed :(.

School starts next week. The summer has flown by! Not sure where this year is going. Took NeVaeh to the eye doctor today. I ordered glasses for her. Am not sure if she will wear them but she was starting to squint in school and look real close to the TV screen so we will give it a try. She has been healthy this summer! She will be excited to go back to school full days though I'm sure it will be an adjustment. This has been a really good summer. Her behaviors have been pretty good :) Seems to have done well in her summer school so all is good.

Wow I don't believe I have any new pictures of NeVaeh since last entry. Only puppy pics.

1p36 Conference

We have been having a great summer so far. NeVaeh even reached a wonderful mile stone that folks with a child of "normal abilities" wouldn't think much about. But our beautiful brown eyed 7 year old has been walking through stores.....YES...I said WALK. She up to this point has been crammed into a shopping cart despite the fact she doesn't hardly fit but now since she has matured and listens (ok sort of) she is well behaved enough to walk through even Walmart!! What an accomplishment!

 

We got the pleasure this last weekend to go to ST Paul MN to go the 1p36 conference and meet many families and children with this syndrome. We are all family! It is so amazing how close we are to one another. Each child is so similar and so different. That is what is so unique and mysterious about this syndrome that they can't quite figure out why even two children or four children with identical deletions can be completely different children with completely different behaviors and abilities.
We got to meet people that I have been corresponding for quite some time over the internet but this is the first time I saw them in person. It's quite funny how I never knew most of them because they (and I) only post our kids pictures not ours.
They had some very interesting speakers. They even had Dr Hopkins an genetics from Cincinnati, a Speech therapist with a new technique called MNRI thats supposed to show great new improvements with children, amongst other speakers and a dance night and they released balloons in memory of the 1p36 angels who went to heaven before us.
We met many new friends!

 The kids got to pet and sit on a horse

The kids even got to try new trikes out!

 

In Memory of the 1p36 Angels!!

 NeVaeh with PJ's and Blanket ready for the movie!!

We  had movie night one night. This of our new friends Vicie and Her son Hunter!

A few candid shots of NeVaeh and Daddy!

 

Daddy and NeVaeh all tired out taking an afternoon nap!!

It was sad to say goodbye to everyone but we still have facebook to talk to most of them and hope to get to see them again someday!! Its an amazing tight support system!!