Family 2014

Family 2014

Family 2010

Family 2010

Sisters - 2010

Sisters - 2010

Thursday, June 16, 2011

Warrior and Princess Cali- updates

Cali had another 10 viles of blood taken yesterday to test for another panel of genetic diseases. This panel is the Ataxia panel...not that anyone knows what that means. Basically we are ruling out another chunk of the endless named diseases out there. Picture a wall of balloons and we are throwing darts to pop each one and maybe, just maybe, we will find the diagnosis in one of those balloons. Our neurologist doesn’t think there are any named cases out there the same as Cali and Ryann. Which brings us back to our doc’s original idea that they may name a gene after our family. The Spooner Family Gene, oh jeez! We do not want that of course because then there will not be any other cases to compare to. We have to rule out every rare disease out there and from what i understand there are roughly 7,000 just in kids so this could take a lifetime if you ask me. Our geneticist doesn’t seem to know which direction to go. We just have to keep throwing darts at those balloons and see what we find i guess. Cali is the guinea pig and if anything comes out positive then Ryann will be tested. Cali is such a trooper. She didn’t even cry and they only used one vein! The nurse was shocked at what a great patient she was. She drank a juice box after and went to school Easy Schmeezy! What a warrior that little girl is!

As far as her foot reconstructions go she is done! Whoo hoo! She is out of the casts, into her braces and walking strong in her walker again. Doc says it will be about a year and a half for healing before she isn’t in any pain. Again, what a trooper! We are up and running with her walker and so is Ryann. It is funny to have Cali so tall in her walker and Ryann so little in hers. What a family we are :-). We are going to have to train Rae on how to walk with Ryann so we can handle the both of them at the same time. We can do it!

Lastly, We finally got what we were fighting for with the school district. We are happy to say that the district is hiring an aide for Cali next year. We know she deserves an aide by her side so she can have the opportunity to move about the campus freely and happily. So we will see how it works out. We are hopeful, happy and her biggest advocate and fan.

Wednesday, June 8, 2011

What is in store for Cali ??

Rick and I had our first meeting with the head of Adult Transition of Capistrano School District yesterday. He has been with the district and the program for over 30 years along with most everyone else involved. These people that run this program seem to really care. Even though they more than likely get paid crap and the Federal Government pays roughly $600 per year per kid they keep going. They are working hard everyday to help 116 young adults age 18-22 years old transition from school into the community. These young adults range from medically fragile to almost independent-driving a car and living in a group home. These young adults go to a college campus everyday 9am-3pm and work in the community. They have a schedule where they may work on reading in the class in the am, then on to working on life skills such as “how do you act in an interview” or what is inappropriate to say to a stranger or friend. Basically they learn how to be a good citizen in the community. Then after their morning lessons a few kids go with one teacher to maybe Costco food preparation, or maybe Howies Game Shack to do whatever is assigned. Each teacher travels with a handful of student, no matter what their disability, to a job site and they do what they can depending on their abilities. Another part of their day includes physical education such as swimming, etc. Then at 3pm the bus takes each student home to their doorstep.

We found out yesterday what Cali has in store for her at age 18-22 years. It was a huge question mark for us. We talk little about it. What happens next? Will Cali live with us for all of her life? Now we have to think about Ryann too. It’s hard to look at the big picture. There are so many unknowns and how is it even possible? But as most parents plan for college we have to plan too. We are even looking at Rae at 5 years old and asking ourselves what is she good at and in the back of our minds what will help pay for college? So it is only fair and obvious we do this for Cali and Ryann. Things will change and we are positive of that. Its still good to know and feel like we have as much insight and information as possible. So yesterday in our meeting we learned that Cali will have school from ages 18-22 years and she will be in the community and really focusing on the quality of life. Income or taking care of her own kids will not be a concern for her. She will live her life as HAPPY as possible, INVOLVED as possible and ACTIVE as possible and we will LOVE her as much as possible. The future or the big picture in its rough draft is sometimes overwhelming to look at. All we can do is look at what we see in a positive light and keep on smiling….