Wednesday, August 11, 2010

Interesting things that happened today that were positive...

This isn't a "real" medical update for Samantha (not all posts will be), but we did have some "positive" things happen today.

1. We had her 3 month review/check in of Early Intervention Services and it was decided (with a little nudging on my part) that in September her Speech (ST) and Occupational therapies (OT) will increase to once per week (rather than once every other week). Physical Therapy (PT) will remain the same at once per week. I think that going forward rather than putting so much focus on the PT, we will try to even things out a bit. If our little one has a limited amount of energy--no need to keep pushing her to walk back and forth across the house so much. Instead, I will torture her with crayons and puzzles!!!

2. I called her neuro Dr. B this morning to get an update on the Dr. C referral and he called me back. Yes, a doctor actually called me back. Not once, but twice--in the same day (we missed the first call)!! I believe this is a pediatric doctor miracle, but I am not certain. Unfortunately, our doctor hasn't heard back from Dr. C's office yet but will keep trying. In the meantime, we will probably be seen by CHOPs metabolic team in order to at least get started on a plan going forward. We hope to hear from metabolics soon to set up that appointment. In talking with Dr. B today I discovered that most of, if not all of the genetic tests they can do for something like this already happened at the hospital. Not all of the results are back yet--but it is good to know those tests are out of the way, so to speak. The way it was described to me in the past is that if they can find something in the genetic tests that may be a way to avoid the muscle biopsy. The muscle biopsy is not as "scary" to me as it once was (6 months ago I was against even getting an MRI with sedation--my how things have changed)--but it is still a medical procedure (complete with cutting and more sedation). So if we can avoid it, I would prefer not to do it. That being said, my guess is we'll probably have to do it at some point.

3. As already reported on Facebook earlier today, I created the "Dog Burger" for dinner. That's what happens when you want to make hamburgers but only have hot dog buns in the house. Make the burger to fit the bun you have. Samantha didn't care for the actual burger so much (she is hit or miss with meats in general), but she did like the cheese and the bun. So, 2 out of 3 ain't bad.

4. I discovered that Samantha likes Simon and Garfunkel as much as I do. The true confession is that Samantha likes any music that causes mommy to act a fool. Tonight was just the first time I played Simon and Garfunkel. As long as I am dancing around and singing my heart out, she is very appreciative and also tries to sing right along with me. Unfortunately, she's inherited my voice (or lack thereof). I know I can't sing (at all, it's sad), but I will always have an audience with this kid. I waited 36 years for someone to appreciate my hidden talent, so I sing to her every day. Multiple times a day. No one has called the cops yet. The stand out favorite tonight was "Bridge over Troubled Water". Interestingly, it is one of my favorites as well.

I took some video today of Samantha. The hat she is wearing is a hat my mom bought for her months ago--for Easter. She doesn't always want to wear hats in general--but whenever she puts this one on, it stays on. She loves this hat. It is her "play" hat. Her "goto" hat, really. It is the only hat she likes to wear---and it has a nice purse that goes with it. (Unfortunately, not in today's video.)

The clips are all joined together but it is three separate mini clips. She is using her walker in the first few seconds. In the 2nd clip I took it without her knowing as it was "unsolicited walking", which is becoming more common now that I've stopped most of the "solicited" walking. I just happened to notice her walking so grabbed the camera again--and that is what I got. It actually includes a turn, which is a big deal for her. The third mini clip is just her being cute at her play kitchen.