Mother's Day, Dentist, & Amanda

I may be a bit late, but Happy Mother's Day to all moms all over the world! I know that Mommy had a nice day. I gave her a present I made myself, a nice set of flowers that even smelled like perfume, and a nice card promising to be better and put my best effort in all I do. Yup, I even promised to not roll my eyes all the time and be nicer. She was very happy about it all. 

Last week I also had a visit from... My Tooth Fairy! And she left me a book, along with $5 bucks! I really liked the book as it explained why in blazes she takes away the tooth that she demands us to put under our pillow. Awesome!

This week I had my third dentist appointment, this time in a new place. Kudos to the staff at Dental Kidz, they rock! I loved the service. No cavities, my teeth were cleaned, and I had a good time. I must return within 3 months to give my gums a second look and maybe an x-ray. Since it was my first visit there they did not want to scare me away. Ah, if they only knew... I have been through so many things, that appointment was a breeze!

In other news, I hear that I may finally have a new speech language therapist soon. About time! It's been 3 months, which is unbelievable! I'm looking forward to seeing what new insight comes my way. Also, the school system will allow me to go to the Museum's Camp Jr during Summer. I was thrilled with this news! Alas, Mommy won't have to be trying to figure out how to get funding for that. Now she can have time to get funding for other things that I need.

I heard something about hippotherapy and aquatic therapy on the horizon... I hope that the people that make decisions see that I need them to strengthen my lungs and to better my posture. With those therapies I can improve the amount of time that I remain seated, and even improve at which degrees I sit (I cannot sit straight yet, and just doing that is a big goal). Who knows, it would be awesome if I could start it and go back to my 2-5 hours of being without bipap. I miss my nose breaks (my nose hurts sometimes because of the constant pressure of the mask, sometimes it is too tight, other times it is a positioning thing... there's never a perfect situation with the mask).

My stander and my new power wheelchair are still in process... of being completed so the requests are finally sent to insurance... The key word there is “in process”. Oh my! I've been hearing about this for weeks, and it is all still in process? Erm, like... I need my stander and a new chair right now! I've outgrown everything! I wish I could become a priority for the people in charge of making things happen. I know there are other kids out there in need of services as well, but come on. I have been patient enough. And I really need my basic equipment. I need to stand to keep my body functions fine tuned, and I need a new wheelchair because I need to get off my bed and go places being safe and as independent as possible. So people, no more razzle dazzle. Just move your booties and send in the paperwork! Gosh... at this pace, I'm going to get my stuff in Christmas and only if I am lucky!

So... Life keeps on being hectic but good. Having OT Gail around most of the week makes things fun. I really look forward to all her crazy projects. It is almost as if she were competing with Mr. Farina for creativity, they both have something new and exciting for me to learn and for me to do. And PT Marda keeps my legs and toes moving! Daddy made sure I am back on track in my daily cycle “riding”. And Mommy is revamping my daily care handbook, as it is a bit outdated (a bit as it is from 2009). Yup, it needs new juicy details from all the things that now I do during my day. And all is not for the faint of heart! My little sister has pitched in to the big affair of being in my room... of course all she wants is to watch what I am watching and then sing along to annoy me... but as long as she doesn't reach for my nasal mask all is well. I can't complain. The days keep zooming away, and everyday has something new to offer me... Every day I open my eyes and I see many reasons to smize. And I wouldn't have it any other way!

God: Thank you for surrounding me with the right people, and for allowing just what is right for me to come to me. I trust Your big design. Work through me so that every life that I touch gets Your magic. This time I also have to ask You to give plenty of Your special love to the family of my little friend Amanda. I know she now dances and runs and flies all around You in Heaven, but still... sometimes knowing is not enough. Give my love to Amanda, as I am sending big warm hugs and many kisses to her. Thank you God for all Your blessings, especially for allowing me to bring so much joy to my family. Thank You for all the miracles You bring into my life, every second. Amen.