claire chair.

Aug 4, 2009

food time is now much more fun with a high chair! previously we used claire’s feeding therapy chair for meals but she was demanding a normal, more stylish dining option (i know, she’s a diva!) so we happily obliged. it just feels better to be in a big girl chair like all the other kids use and claire looks so very pretty in it too! and she can’t resist holding those little hands onto the tray, such a cutie!

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i wanted to give a quick update on what is going on with the early intervention services in our state. the day before claire’s therapies were to be cut, a judge issued an injunction and stopped the state from ending services to babies! our DDD coordinator says that therapies will continue until they hear otherwise. can i get an AMEN?! in the meantime, we are applying for federal long term care funding for claire since those programs are more protected than the state programs. it is difficult for babies to qualify but we are hopeful that with claire’s diagnosis, she will be accepted. so anyway, a big hooray for the judge who helped all the families and babies who benefit from early intervention therapies! i am so happy to see evidence of people in power who really have a heart for the citizens they serve and do what is right! i’ll try to keep you all updated as this situation progresses and rally the troops if needed! 🙂

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first the good news, claire finished her entire bottle for the first time ever! she has been making great progress eating by herself and we are very optimistic that she will one day be free of the icky feeding tube. she is still loving solid foods as well and is a huge fan of peas. go claire!

the bad news is what is going on in our state. arizona has somehow decided that is acceptable to cut funding for the early intervention program. what this means is claire’s feeding, physical and vision therapies will no longer be paid for. i am in utter shock that of all things the state could cut back on, they deemed innocent babies with disabilities as not worth the cost. it makes no sense fiscally or morally. early intervention helps many babies overcome delays so that they can avoid special education and even more costly services as they age. by cutting these necessary programs, the state is only creating a situation where older children will need more state services b/c they didn’t get the help they needed during the most important beginning stages of life. morally i am at a loss of even what to say. the fact that lawmakers in our current society could have such a disregard for the most vulnerable people in our state is pure horror to me. some people may ask “well what did parents do before the state paid for these things?’ that just shows complete ignorance to the history of how people with disabilities have been treated in our country. they used to TAKE your baby, send them away to an INSTITUTION and tell you to FORGET about them. we pay taxes just like any other family so your kids can go to public schools, you can ride a nice light rail system to work and if you get injured there is money there to help support your family. in the same way, babies with disabilities NEED therapies to have any chance at acquiring skills that most parents take for granted. i am not complaining that my baby may not get the cream of the crop education so she can become some scholar here. i am pleading for the chance for my BABY to learn to hold her own head, eat on her own, and use her eyesight for goodness sake. the fact that the state now thinks those kind of basic life skills are not worth it for my child to attain sickens me beyond belief. i cannot even imagine how a single mom on a low income with three other kids at home would even survive having therapy taken away from her baby with special needs. adrian and i have the opportunity to have a good income, have me stay at home and have the knowledge to implement therapy interventions with claire on our own if there is no way to keep paying her therapists for their work. i am so thankful for that but i am crying with the thousands of families who do not have those opportunities. i am sending my letter to our state representative to tell them of my outrage and have my voice heard. i encourage you to do the same.

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photos.

Jan 20, 2009

just a little note that there are tons of pictures if you want to browse around. click on “photos” on the right sidebar and then on whatever album you want to see. i added quite a bit more to the albums recently. enjoy!

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guess what? the phoenix suns season starts tonight against our arch-enemies, the icky spurs. get ready for hack a shaq, ginobli flops and tim duncan whining about every foul call! one thing i will be so happy not to see? robert horry and his nasty tactics on the court, bye bye horry! i think he retired or something. at least steve nash won’t be thrown into anything this game! oh how i missed nash, stat, the brazilian blur and especially raja. see, he isn’t so scary in this picture is he? just don’t get him mad! and now the game is about to start, bring it on spurs!

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