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!!

Summer Time

We are having a great summer so far! NeVaeh is loving every chance she can to go swimming. She does adaptive aquatics weekly during the summer and she goes swimming in her pool in our back yard any chance she gets weather permitting. We try to go for a walk most every evening to burn off some energy so she can get good and tired for bed time. She really enjoys that too. Her impulsive need to eat is getting a little less now. We always make sure she has plenty of water to drink as she loves that and I believe that does help curve her appetite. She loves carrots, dill pickles and popcorn. So we have some alternatives that are a bit lower calories for her to eat.
She gets 5 weeks of school of 4 half days this summer spread through out the summer. She has completed two of the weeks so far and they are going well. She seems to be retaining everything she learned through out the year. Yay!! She loves her school so much!
Daddy staying home with her has been a God Send! I believe the consistency and not needing to leave her at a sitter has been very beneficial for her. She has not had any behavior issues yet this summer. Just like she is a different girl than last summer. We hope she stays this way!! She is so content sleeps in a bit in the morning usually sleeps well at night.  Won't sleep in her bed anymore LOL. She sleeps on the floor by our bedroom door. I quit trying to get her to sleep in her bed. She would just grab her pillow and blanket and camp out at our door anyway as soon as I tucked her in so at least she sleeps well. After a couple books for bedtime now she automatically just takes her pillow and blankets and settles in there. Kind of cute. She blows me kisses and turns the light on. (she's scared of the dark).

 NeVaeh Got an Ipod that she likes to share. Her and her cousin Ruby were having fun playing with it.

NeVaeh's Adapted Aquatic instructor is so impressed with how she has all of a sudden taken off with her swimming. She now only uses a floatation belt in the deep end of the pool. She said she may be able to compete in the Special Olympics next year. That's what we are shooting for!!


I was looking through some really old emails and found this picture with this email of an update of NeVaeh. Thought I would share it. She was 3 years old. She's grown so much but still is mesmorized by flowers and mud puddles. How our little girl has grown!!

Every day is a new and exciting discovery for NeVaeh.
She can't wait to go outside. She explores everywhere.
She thought it was great when I was running the garden
hose the other day. She would run her hand under it
then pretty soon she got her head under it and ended
up all wet. She discovered dandelions. She also
discovered that sand-burrs hurt. I will make a country
girl out of her. The other day when she was all muddy
I took the garden hose which was sitting in the sun so
the water was warm and told her I was going to teach
her the farmers way to clean up. I sprayed her legs
and arms. She giggled the whole time. Today We went
out exploring the lilacs in the dry weather and
snapped a picture. She also challenges the wind. She
lifts her arms and leans forward and walks right into
the wind. Very seldom does she fall. Its amazing how
determined she is. Her determination will take her far
in her life.
Take care.
Talk to you later.
Patti

School's out for Summer!!

Well the school year is done. This last month NeVaeh had several activities. The spring program was in early May. She seemed like she enjoyed it and did participate in some of the actions of the music.

 

She had a couple field trips. One to a children's museum in Brookings which she really liked and one Bowling. I guess she really enjoyed watching the others bowl and when she tried she wanted to run after the ball down the lane. Then they turned the big light out and she got scared and just sat  back and watched the others. I got to go and watch their field day. She actually did some participating. It was cute. She especially liked the gunny sack race and the race that they were supposed to put their foot into the pool and fish out marbles. She however had in her mind to just get in the kiddie pool. Each of the kids took one turn at the pool but she went back 3 times. The third time her one on one had to hold her up as she was trying to get in with both feet and sit down LOL.  Keep in mind it was only the low 60's that day so it really wasn't swimming weather.

 NeVaeh is in a gunny sack jumping

 Crawling under the hurdles in the obstacle course.

 still working on the obstacle course

 at the pool in the red pants

 One more time running back to the group from the pool.

 putting her feet in the pool and more.......

running back to the group .... again.. She had do much fun!!

Thought I would share this little clip too. I caught of NeVaeh. She was having a chuckle out of watching her movie.......

We got NeVaeh a little Ipod for working with at home so we can do little things with educational apps like what she was doing in school. It was a bit cheaper that the Ipad but we will break down and buy one of them for her one day too.

Now its time for summer fun!

Hopefully it will be dry enough to get outside and play!!

We hope everyone else has a good summer too!!!!

Picture Day!

Took Miss muffet to get her pictures today. She did very well with them.

Only a little more than a month left of the school year left. Would be nice if we could actually see spring. Easter is on Sunday!! She has been healthy since my last post and doing well. Hope all has a Happy Easter!!

Here's our family picture taken in January at church.