Happy Easter

Getting ready for church and of course the girls are cooperating, Douglas is not sure what is going on, and Drake throws in the eyeballs. It is cute of the girls smiling!
So, we tried it again and again. But Alayna would rather eat her fingers like she does 90% of the day.
The family at Easter Brunch. We enjoyed that so much. No one had to cook or clean up!!
Alayna with mommy...we enjoyed this Easter so much more than her first one last year at the hospital. I'm so thankful she is healthy. I hope she stays that way.
Grandma holds Alayna. We ate brunch at this reception hall and they had a disco ball on the ceiling. It wasn't on, but it sure caught Alayna's eye and mesmerized her for awhile.

This is Alayna's new Jumperoo from Grandma Billie and Grandpa Richard for Christmas. We've been a little hesitant to put her in it, but after seeking advice from my 1p36 parent experts, we decided to use it for a few minutes a day. She seems to be enjoying it and if it will help strengthen her legs we are all for it!

I'm trying to practice more with her sitting on the couch. First, because it is soft and she needs to get used to it and second because she just seems to like it a lot. Maybe because it is just different and she feels like a big girl. See how she put her hand down on her right side? This is the first time I've seen her do this. She started to lean and she tried to catch herself. Yeah!
I mentioned to her therapist today that when she sits on the couch she takes her arms and flaps them up and down and hits the couch. I also mentioned how she put her arm out. She informed me that those two instincts usually develop together. Maybe we are getting ready to hit another milestone?!

Patti working with Alayna! We can't describe in words how grateful we are to have her.
This is Patti, Alayna's babysitter and personal trainer. Alayna loves her!
I'm sitting on the couch again and loving it! I fall over sometimes, but I'm finding my arms! Do you like my hip, new outifit? I've got to be stylish like Lexi!
Here I am banging my arms up and down on the couch. And I'm getting ready to go to therapy again. I've got it 3 times this week...ugh...I get tired! They make me work very hard.
Alayna, you are such a sweetie. We love you!!! We love the crazy hair too.

I hope all of you had a blessed Easter holiday. Our church service was wonderful, uplifting, and truly inspirational. Our pastor delivered the Easter message that is pretty simple: "we live because He lives and we will live for eternity." That thought provides me with a sense of calmness and peace. Another part of the message that sticks in my mind is the fact that God has a purpose for each and every one of us. We all have a purpose here on the Earth and he doesn't take us until that purpose is fulfilled. I know that is true. It just means more today than it might have, say 10 years ago. Because of Alayna of course. She has been sent to us for a reason and she has a great purpose. As a mom, wife, daughter, sister, teacher and a person, I openly commit myself to the Lord and will try to walk in his footsteps. That is what we all should strive to do.

Alayna continues to do well. Just this week she seems to be wanting to grab toys more and play with them. So, one of our PT's is going to contact Early Intervention and see if we could get a developmental therapist to come to our home or Patti's. I'm all for any additional services! We continue to work on the sitting. We are constantly pulling her up from a laying down position and trying to get her to use her own muscles. You can definitely tell when she does this on her own. It can be a challenge to keep her looking up at us. She likes to "dive downward" and put her fingers in her mouth. Then she looses all postural position. We are working/stretching her hips and legs and feet because we want full range of motion and she does tend to lay with her legs apart and her feet out. We are making her get her hands fully extended and flat on the ground and trying to get her to bear some weight on them while kneeling. That usually takes two people!

I know there are other things we do too, but it is difficult to list them all. They just get worked into everyday routine and we just do them every so often. I tried to get her to take a bite of a Ritz cracker tonight, but that didn't go so well. I'd love to try and introduce new things to her, but I'm not sure she is ready. I'm going to seek advice from the 1p36 parents and see if they have suggestions. Today at therapy, her speech therapist gave me a rubber type of brush to rub on the inside of her mouth, cheeks and tongue to stimulate her mouth and try and get her to recognize that her tongue can go side to side. Many babies are so used to the bottle that they thing their tongues can only go to the front and back and they need to make that new connection.

The 1p36 support group that we are members of is trying to organize this year's conference. Remember last year we went to Jacksonville, Florida and had the opportunity to meet some wonderful families and children. We are planning on going again this year and look forward to seeing familiar faces and meeting new ones. The parents are the experts and they have a vast knowledge base that is absolutely priceless. I can't begin to describe the compassion and support they provide to everyone in the group. It really is another part of our family. We all share the same connection and it feels good to know that you aren't in this alone and that someone else out there is probably going through the same thing you are. It could be illness, sleepless nights, medication concerns, or just questions on what to do next! I can't wait for a conference location to be determined and fill all of you in on the details.

There was a new article on 1p36 recently published by Dr. Shaffer and another doctor from Italy. Here is the link http://www.genetests.org/servlet/access?id=&key=&fcn=y&fw=Z-oa&filename=/profiles/del1p36/index.html It has some fascinating things in it, but a lot of scientific terminolgy as well. But I encourage you to take a look. I'm just thankful that Dr. Shaffer is so adament about researching these kids. Good has to come out of this and I think with her research and expertise, more children will be diagnosed earlier and get the services they need to progress.