1p36 Deletion Syndrome Conference in SLC Utah

In July we were able to attend and help plan for the 4th Annual 1p36 Conference. Luckily it was here in Utah so we could finally go. This year was our first one. It was really nice to be able to meet other families and to get the know the other kids. They are all so sweet and little angels.

I liked what Rachel Coleman from 'Signing Time' said "It's amazing to think about all the people I would know if I didn't have a deaf daughter" It's so true for all us 1p36 families. We wouldn't know any of you if Shay didn't have her syndrome. I am thankful we live in these days that I can communicate with other Mom's and to be able to meet so many other families who know what we are going through. It is was so amazing and a huge blessing in my life! Here a few pictures to remember the weekend by....Shay and Sammie

Shay's Speech and Occupation Therapist's were able
to come and help out. Love them!!!

Getting ready to go to the Discovery Gateway MuseumAt the Children's Museum Shay, Joseph,
Sammie, Callie, and TaylorWe took a few people out to Antelope Island to see the Salt Lake
Shay and her friend Abby, they are only 1 day apart

Another trip to Vegas!

We decided to take a break from life and go down to Las Vegas to stay with John's Dad and family. We had a great time with them, and the kids really enjoyed their Uncle Wyatt. We mostly just played in the water, it was too hot to even go to the park in at 9 in the morning. It was a blast and well worth the drive.(At the park at 9am)

(Those goggles look a little tight)
(At the water park with Uncle Wyatt)
(Shay loved this fountain I think more than me)
(My beauty Shay)

What are Sisters for????

Roxy has been such a big help to Shay in the past couple years. She has really come to love her and teach help me her all the time. She teaches her to count and teaches her letters. When they do play good together, she teaches her to pretend play. Roxy is an excellent role model for Shay! Shay is a lucky girl to have such a smart, almost always kind sister. :) We love her too!!! SO MUCH!!!

A few pictures of Shay & Roxy over the years:

so PROUD!!! & Easter

I am so proud of this little girl. She has come so far it's amazing, she always surprises and amazes me. The little things are the big things for Shay. Like the other day how she wanted to go home and she told me "I want to go home!" I didn't even care that she was complaining because I was so excited she said "to" in her sentence. This was a complete sentence for Shay and it was awesome!! It's little things like this that make me a proud Mama to my little Shay Shay.

EASTER!!!!!
It was a good day and weekend. Cold by Fun!!

I can finally pull Shay's hair up in the back,
BARELY! But still, yeah!!!

At the rodeo...

My friend Karen invited us to the rodeo in Ogden on Friday. It was the girls first rodeo! We had a good time eating junk and watching the show. (Enjoying her cotton candy and sprite)

Shay was a little overwhelmed because it was loud and a lot of people. But she still had a great time! When we got in the car to go home I asked the girls if they had fun and what was their favorite part. They both told me "the horses and sheeps" were their favorite. :) It was nice to get out on a Friday night for once and thank you Karen for the invite and for the free tickets! YEEEEHAW!

(Karen and her little one Logan)

(Shay and her good bud Jaxon)

(Only at the rodeo)

(Shay and her awesome Mama :)! )

WORD GIRL has been arrested!!

Lately Shay has been wanting to watch this cartoon on PBS Kids called WordGirl. She asks for it often. So today I was on the computer while Roxy and Shay were having quiet time, and I hear Shay start to cry really hard. I knew this was serious because I just know I'm her Mom. So she comes to me with tons of tears in her eyes and can't even tell me what is wrong. So I rewond the show (thank you DVR I love you!) and saw that WordGirl had been arrested for some reason. Shay was devisated! She was still crying holding on to me tight and I asked her if she wanted to watch something else. Of course she said yes and she said "ya, that will make me feel better". She is such a innocent little girl and thinks that everything on TV is real! She cries at monsters on Scooby Doo, but she loves Scooby! She is my little sweet heart and I love being her "Mama"!

Tubes Again??

Today was Shay's appointment to get tubes. They called on Friday and reminded me that I have to be there at 6:45 am. So being the wonderful mother that I am and having to babysit the night before and had guests all weekend, I forgot!! I think I deserve the worst mother of the day award today! I felt like an idiot when the surgical center calls at 7:15 and woke me up and reminded me. So I asked if we could rush over, if they would still do it. They said yes, and we rushed very quickly over to Layton.

I have been trying to get these ENT doctors to give Shay tubes for almost a year now. She always has negative pressure when I take her in to get her hearing tested. I have noticed some regression in her speech sounds and I knew she needed these tubes. So 3 ENT appointments, 3 hearing tests, and 9 months later finally they said there was enough evidence for Shay to get her tubes.

This is her second pair, so I knew what to expect. Shay was a bit shocked because I forgot to talk to her about it before. (I am terrible, I know) So she was a bit anxious and upset. The only thing that helped her from not kicking and screaming on her way in the surgery was this cute little wagon. So thankful for that thing. Her surgery went well, and the Doctor said she had lots of fluid in both ears and the left was worse than the right.

Now on to more hearing tests to see if this was the issue with her hearing problems lately! She is my brave little girl and I love her sooooo much!

Fun with Family!

This past weekend we had company. John sister and her family came down to visit John and we had a great time. In the picture is Shay's cousins, London and Derek. We got to ride on a carriage down town at the Gateway, while we were going I thought about it, this was my very first carriage ride and I'm 25. Shay got to ride on one at 5! How lucky and spoiled are my kids, I am so glad that they have these opportunities to do so many fun things here in Utah!

After the carriage ride, I had some free tickets to the Discovery Center for kids down there. This is called the beehive, there are just tons of balls and holes for them to go down and up and all around. The kids LOVED this beehive! Shayanne especially. There is one part where you slide up this plastic cover and put the balls in a hole that blows air to push the balls up a tube. She was doing this for like 25 minutes I swear. Every time she would open it, the air would blow and she would started her flapping and smiling. It was hilarious and fun to see her enjoying this so much! If you know Shay, you know she does not pay attention for very long, so this was a great toy for her. We need to go down there more often!
Derek, London, Roxy, and Shay in the Helicopter saving lives at Discovery Gateway.