Wednesday, April 29, 2009


The week has been a bit slow. At least today I had some excitement as I had two visits. The PT came in the morning, and then the OT came in the afternoon. Not that I have not done my exercises anyway, my day nurse gives me plenty of exercise, and reads to me, and shows me the flash cards… Yup, I get complete happy service while that one is around. We are joking around about cloning her, but who knows… desperate times call for desperate measures! And, really… It has been THAT hard getting to find someone like this one. I hope she sticks around for long. It is stressful enough handling crazy nurses in the afternoons if and when they come… Right now it’s off to the basic one day nurse, the other one that began last Friday didn’t make it after 3 days. Sometimes it feels like the company doesn’t listen to what we need… Well… we gave her time and we were patient… but you can handle someone that won’t talk or look at you? Gosh!

So, back to the therapists… PT session went well, hopefully she saw I have been busy working my muscles. The OT seemed a bit down with my lack of moving/grabbing too much. Well, since the long hospital stay THAT has been something we’ve been working on. Not that I don’t try doing anything. My strength is not too strong… I’m hoping that the L-carnitine starts helping me soon, at least giving me morte energy to keep trying.

At least everyone is noticing that I’ve been happier lately. Smiling more, trying to be more cooperative… You know, making my followers happier… Hey, if they are happy, they talk a lot to me, and read to me, and do more stuff with me… You know, it’s all about me! :P

Summer is hitting hard. Cold days followed by extremely sunny days and now drafty days… This weather is plain crazy. I prefer the stable sunshine in mornings and rain in the afternoons from my little island. At least you know what to expect. Here it’s all a big surprise… But, I’m coping in style. Mommy and Daddy found out some cool clothing so I keep on being divalicious in style. And even NurseMicheila pitched in bringing divalicious thinguies for when I am bigger. I am certain that there’s no way I’ll end up in What Not to Wear.

The wheelchair is in process… I have my date for stander selection in Monday. And now the thing with the bed drama is taking new shape… Don’t know if for the best or the worst. Well, Mommy got some info about a bed that is perfect for me, and that is more affordable than their old pick. Now we hope that Medicaid won’t start making a drama out of it… It was great to hear that this manufacturer has many SMA customers. Seems this is the right choice, as you are a face and a name, not just a number. Stay tuned and watch what happens…

The thing about the swine flu shivers me timbers! I’m so scared about it. But I know Mommy and Daddy are vigilant. It’s all just scary… Heck, even the common cold is scary for us…

God: Thank you for so many blessings. Thanks for a family that sticks with me no matter what, that cares for me and that loves me so. Care for those kids who are abandoned, who are alone on their own… Let them feel your presence, inspire them to know that Life is worth it. Protect them, and heal everyone that is sick… Guide us through the night. Keep watching over us. Amen.

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