Welcome to Julia's Site!

This blog is made available for several reasons. First and foremost, to keep those that know Julia current with what is going on with her and her progress. It is also my intention to educate those who do not know Julia about what happened to her, so they can make educated decisions about their own children. I want to welcome those of you with questions about her disease, treatments, and just the general life (the good and the bad) of living with a brain damaged child. Finally, it is a therapeutic release for me, Julia's mom, Susan. I love writing and need to get some of this stuff out of my head and onto "paper". Thank you!

Wednesday, July 29, 2009

feeding dog

Julia has always loved to feed Shawn's dog, Dakota. We usually say, do you want to feed the dog and she grabs the bowl and walks to the closet where the food is. WELL, tonight, she grabbed the bowl without us asking, and WE ASKED HER, do you want to feed the dog, and she IMMEDIATELY shook her head, YES. Immediate response. This is 100% new. Could it be the food?? Who knows, I am not saying it is, but it was very different!!! :)

Amazing..............

So, I have been trying to get Julia set up for an Augmentative Communication Evaluation for about a month now. Lots of paperwork, phone calls, etc etc etc.....and FINALLY the woman called me back last night to schedule it. She told me the appointments are always on Wednesdays, to which I said, PERFECT, because I am off wednesday mornings (well, off from work, julia has PT OT ST wednesday mornings). So, she said, the first available appointment we have is on Wednesday NOVEMBER 18TH at 9 am and it will need to be a 3 hour appointment. THIS IS OVER THREE MONTHS FROM NOW!!!!!! I could not get it through my head that there is such a long wait, as that means there are soooooooooooooooooooo many kids that need this service - so many kids that have such severe communication issues that they need a communication device (computer, etc) to communicate with the outside world. This led me to think about how there are NO special needs schools in Douglas County. One of the wealthiest counties in Colorado, with a TON of kids, many of which I am sure have delays of some kind or another - espeically with the autism rate at 1 in 150 boys now, and no place for them to go and recieve the intensive interventions that may benefit them! I am just shocked. Maybe this is my calling? To get out of Veterinary Medicine and vaccinations and do something to help all these kids????? But this, of course, requires millions of dollars and I have NO IDEA how those sorts of things get started, and liabilities, etc.....so likely will just remain a dream of mine, but it really should be done! I am sure that there are many, many parents in my same boat (but who are significantly better off financially) that would appreciate something like this HERE - not in Denver or Lakewood or Ft. Collins, etc. Just a thought.

Sunday, July 26, 2009

Diet change

Well, after much reading regarding autism and gluten free/casein free diets, we are trying it. I don't have a whole lot of expectations, but feel if I don't try just because it is "hard" and expensive, then I am not giving Julia every chance possible. So, we are on day three. I went shopping and spent about $160 for enough food for about 10 days.....and am still not sure about all the "rules" etc, but am doing my best. I hope to get her in to a nutritionist who specialized in autistic kids or a DAN! (defeat autism now) doctor soon for some guidance. I hope I am not just throwing thousands of dollars away for no reason, but my gut tells me to try, so I am. Those of you who know me, when I say I'm going to do something, I do it, so I am doing it. I have read all the autsim websites who swear by it, and all the other websites that say it is just desperate moms reaching for anything to help their babies, and wasting their time, energy, and money as there is no documented proof - but my view is, she has to eat....right????? So why not give it a go. Again, I know she does not have an autism diagnosis, but I think she has signs.

Will let you know if things improve. If anyone wants to send Whole Foods gift cards - they are welcome to! :)

Susan

Monday, July 6, 2009

The vaccine Julia got....she must not have been the only one.

http://www.fda.gov/BiologicsBloodVaccines/Vaccines/ApprovedProducts/ucm123798.htm

Don't know why my links don't work anymore - please cut and paste.