Alayna, Our Little Ray of Sunshine!

A gorgeous rainbow popped up right outside our house one recent afternoon. I couldn't resist taking a picture. Everyone wonders about rainbows and usually stops to awe at their beauty and uniqueness. They are rare and not found all of the time. Kind of like Alayna - one in a million and full of beauty! She's our little ray of sunshine.
Can you believe that we had to wait close to 5 months to get her to smile for the first time? Now she smiles tons and it will brighten anyone's day. She just has this toothy grin and bright eyes that look at you so innocently.
Smiling up at big sister Alexis.
Here is a major problem that I have a feeling we will battle for quite awhile. Yes, her hands are constantly in her mouth! She is teething, but it has been shared by other 1p36 parents that sometimes it gets worse. Maybe a little Tabasco sauce would do the trick! Just kidding.

Yes, I am completely over the helmet. We've had it in the family now for a little over 5 months. I'm ready to see it go! But we are still waiting on one particular spot on the back of her head to pop out someday. Believe me, I check it every single morning. I continue to clean the helmet each night with soapy water and sometimes rubbing alcohol, but it is taking on an odor of its own and I can't seem to do anything to get it away. Plus, summertime doesn't make it any easier because she sweats in it so much.
She continues to be such a good sport wearing it though. But she enjoys pulling at her hair when it is off. I think she does this just because she can! One benefit of having the helmet on during our therapy sessions at home is that I can easily grab the back of it and pull her head up.
More hand in the mouth and more swinging. She is absolutely addicted to movement.
Often times throughout the day or night, especially after she has eaten, I still put her in the infant carrier. Mostly to keep her upright and to reduce the chance of spitting up.
Now this picture was taken right after the above one and at the same angle. See how she has the carrier rocking? She loves to kick her legs and get it rocking as fast as she can. It's so funny and she smiles the entire time. One day when she is able to swing on an actual swing set she is going to be one heck of a "pumper" with those legs!

More time in the swing and more hands in the mouth! She is beginning to arch her back and try to sit up in the baby swing like in this picture. I wonder how much longer she'll be safe in it? We keep a close eye on her and I know the day is coming when we will have to put it away. (I'm crying)
A cutie in one of my big sister Alexis's old outfits. Bins of clothes around here are so handy.
Here is a picture of what she does to her hands. She has a tiny callous on one of them from all of the sucking she does. Thankfully right now the only time I've seen her bite her hands is when she is frustrated and that is usually at therapy.

Glad to be back everyone! I'm on summer vacation and honestly I have been too lazy to do any blogging. You know I truly feel that I get more done and I'm much more organized when I have to work during the actual school year. In the summer time I tend to "shut down" so to speak knowing that I really don't have any deadlines to meet. It's been very busy around here lately and I'll try to update you on some things happen with little Miss Alayna.

Portable Swing

One of my teacher friends loaned me a portable swing to take to ball games. I thought what can it hurt. I'm willing to try just about anything to get Alayna comfortable enough that I might actually be able to enjoy a game. We took it to Lexi's ball games about 2 weeks ago and it was heaven! She loved swinging (of course), the toys to play with, and the sounds and lights. She was an angel. Instead of normally fighting her sleep during nap time, she fell asleep quickly and easily and I got to watch the games. We've taken it to every ball game since. Thank you Nikki! It is a lifesaver.

Speech Therapy

We had our second try at speech therapy last week. She did pretty good tolerating it for about 20 minutes and then completely shut down on us. But I did get some great advice from the SLP (speech language pathologist) to begin to try on Alayna. Since then I've bought her a new Hello Kitty electric toothbrush to try to get her to allow me to put it in her mouth and brush her teeth. This will not only stimulate her mouth, gums, sides of her mouth, but she may also like the vibration feeling. Right now she tends to put her lips together as tight as she can and not allow me to put it in. However, once I get her to open up she does much better. I was also given a rubber NUK brush to use to stimulate her tongue and sides of her mouth so that hopefully she'll learn the "boundaries" of each one. They have to realize that their tongue is a separate thing and can move from side to side. This helps transition to eating more solid foods and plays a big role in chewing. Wow! These are definitely things I just thought naturally occurred. This is tough work for Alayna and it boggles my mind!

Vocalizing

Alayna has been more vocal again for the past few days. She goes through spurts of this. I just love hearing what her voice may possibly sound like in the future. I love that brief moment where I think she is trying to chime in the conversation and tell us something. It is priceless. Most of the time she is all smiles, but no sound. So as you can expect this type of "cooing" melts my heart and I freeze and watch her every single time. It gives me great joy to see her make a sound and actually move her tongue. Today in therapy her PT and I kept saying "mom-mom" and I swear she said it. Her PT and I looked at each other and we were thinking the same thing. Her PT really enjoyed hearing her voice today too!

Occupational and Physical Therapy

Since therapy has been cut back to 40 minute sessions instead of 80 minute sessions, it has been going much better. 40 minutes is about her limit right now before she starts to completely shut down. Today we had PT and on the ride over I had to pull over twice to replace the infamous pacifier. She cried nearly the entire ride. I thought oh great, this is going to be another wonderful therapy session. At that point I wanted to throw in the towel, but that would be the easy way out and Alayna would love that too. And that gets nothing accomplished. So, I let her take about a 10 minute snooze in the van and took her in to PT. As soon as the sound and lights toy was turned on she instantly perked up and away she went! Therapy went so smooth and I was so proud of her. So was her PT! Good job Alayna.

Both OT and PT set new goals for Alayna at Comprehensive Rehab this week. We are working on so many things that it is nearly impossible to write all of them in the blog and you actually know what I'm talking about. But here are a few things we are focusing on: trunk rotation and looking side to side, sitting, getting on all fours, laying sideways, going from a sideways position to sitting, stretching her hamstrings, joint compressions, ankle stretching, "righting" position (keep herself upright in the proper position without falling to the side or backwards), reaching for toys, cause and effect, and the list goes on and on. It literally could be my full time job because we could do something every minute of the day.

Feeding

We had a very exciting moment two days ago. I decided to try a Stage 3 baby food with Alayna to see what she would do. It has more pieces of food in it or I guess you could say it is chunky. I gave her the first bite and figured she'd gag on it. So I was ready with the paper towel. But she didn't and actually loved it. She ate her first bites of macaroni and cheese with carrots. Yeah! And then I gave her the sippy cup, which I try and make a habit of at dinner time, and helped her get it in her hands and hold it up. She normally sucks it out and then spits it or just lets it run out the corners of her mouth. But not today! She sucked it and swallowed it continuously without spilling it out. I was amazed and her big brother Drake was so proud of her. He witnessed it with me. We clapped and cheered and of course Alayna eats up all the attention.

More 1p36 Family

I've added some more links to the right hand side of the blog. We've had some new members join our Yahoo support group and they have blogs they share. So, check them out if you get time. They too experience very similar things as we do with Alayna. And you will see how many of the kids have the same characteristics. Again, I can't say enough about the support I get online with these families. They provide me with a wealth of knowledge that is right at my fingertips and I'm so grateful.

Developmental Therapy

Developmental therapy continues 3 times a month through Early Intervention. She comes to our home and works with Alayna. Tomorrow is the first time that I will actually witness it since school is now out. I will update you on how it goes later, but I'm hopeful that Alayna enjoys it because after all she loves to play and loves toys.

Alayna continues to teach me new things every day. She really is our ray of sunshine. We love her so much and enjoy watching her grow and develop each day. She is getting stronger and much more mobile and I just have this feeling that one day very soon she is going to sit up and things are going to really take off!