Physical Therapy at Home!

Posing pretty!



Alayna rubbing her eyes when she's tired!



Alayna doing some important tummy time!

Not a lot has changed within the week. But I know some of you out there check Alayna's blog daily, so I thought I'd better give you some new photos at least! We continue to work with Alayna at home. Little did I know that my living room would turn into a physical therapy "pad" with a bumbo seat, bouncer seat, exersaucer, wedge, lights and sounds, boppy pillow, and a bucket full of toys. I'd say we average about 1-1 1/2 hours of PT each day. She does very well and is a good sport. As you can see, one of the photos shows her doing some tummy time. I've actually got her wedged up against my thigh and she is kneeling on the floor. Again, she would still rather stick her hands in her mouth instead of look up. I use a mirror which helps sometimes to get her head up and for her to focus. I can't tell you enough what a wonderful baby she is. So easy going, so lovable, and so content. She is eating well and gaining weight. I truly feel blessed by God that she can eat and is growing. Lots of kids with 1p36 have eating issues and difficulties gaining weight. Many have g-tubes or feeding tubes. I've joined two support groups online for parents with 1p36 kids. I was reading today about a little girl 15 1/2 months old that is only 11 pounds. She is so tiny in her pictures. Can you imagine? And Alayna still likes her veggies and we are working on the fruits. She makes funny faces and they seem a bit "tart" for her right now. Oh, and parents with kids with 1p36 are planning a big conference in Florida in November. I've tried to contact the mom organizing the big event to see if it's too late to sign up. I haven't heard back yet, but Dana and I are seriously considering going if possible. We could gain so much insight and valuable information from these parents. They come from all over the US. I hope we can make it work. But if not, there will be other opportunities.

On Thursday we are heading to Peoria to meet with her genetic doctor from Chicago. Alexis and Drake are going to ride with us. They want to see where their baby sister has been going and I think they are looking forward to the trip. I'm interested in seeing what the doctor has to say about her progress and what his exact role is in this journey. I will probably post the next blog with the news from this meeting. Again, thank you for all of your thoughts and prayers. When something of this nature happens to people, it really makes them aware of who their true friends are. We've got lots.