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!

Saturday, August 8, 2009

Good Ol' Roy

I am FREAKING out. Last night Shawn and I went on a date and went to the Douglas County fair with NO KIDS. It was fun. We rode some rides, ate A LOT of BAD food, and then were watching the little pony rides thinking about how much Julia would love that. There was a litte pony there named Roy, that nobody wanted to ride because he was so small, and not that cute, and looked really sad. Shawn fell in love with Roy. He said he looked like he and Julia were kinda "on the same page".

After the fair, we went to Sienna to have a drink before heading home - didn't want to get home too early and have to put the kids to bed - that's what I was paying the sitter for! Anyway, they had a painting on the wall that looked EXACTLY like little Roy. We got the name of the artist and Shawn emailed her today about the painting.

Tonight, me and the kids, and thank God, Anna (my asperger's babysitter), went to the fair. Roy was there - not walking in the circle, but tied to the fence. I took Julia over there to see him. She, of course, loved him. I walked over to the pony ride person and asked when Roy would be back out...she looked at me inquisitively, and then at Julia with her brace on and obviously not a normal kid, and she said she wasn't sure when he would be out. I asked who owned him and she said, "my sister" and pointed to a woman who was out walking with a kid in the pony ring. I, half jokingly, said I was interested in buying him. She yelled to her sister, "HEY, this person wants to talk to you about buying Roy". When the ride was over, the sister, Kurin, came over to talk to me. She said she wasn't sure he was for sale, as he was her son's "therapy horse". She told me her son was autistic - and now 10 years old - and that he had a deep attachment to that horse and it would be up to him when he would leave. I introduced her to Julia and told her about Julia's affliction and that Julia rides weekly and that I am a veterinarian, and that I understood her son's attachment and that I had expected no as an answer, even before I knew the whole story. Kurin looked at Julia and asked if she wanted to ride. We put Julia on Roy and Kurin took Julia on a 20 minute free ride around the WHOLE fairgrounds (while Anna, bless her heart, watched Jack). We talked about special needs kids, her son, treatments she has done, his progression, etc. Towards the end, she said that she actually was thinking it was time to get her son a bigger horse, as Roy is tiny and her son is big, but she was afraid about where he would end up. But she seemed to like Julia, and I think, me, and we had a mutual understanding of what it means to raise a special needs kid, and she said she would consider it, but would have to ask her son. She introduced her son to Julia.

Later in the evening, her son saw us and came over and said, "I think it would be OK for RoyBoy to go with Julia". I almost cried. I spoke with Kurin again, we exchanged numbers, and we are both going to think about it. I just need to find a reasonably priced place to keep this horse that is not much bigger than a Great Dane. He is only a five year old pony, but looks 18, and does not spook at all. She said she wanted to rename him EeeOrr (or however you spell it from Winnie the Pooh, because he is so mellow. Really good pony. ANYWAY - CRAZY!!!!! All because SHAWN, who isn't even a horse person at all, fell in love with the sad looking thing yesterday at the fair. I hope I can make this work.

THEN.............. a little later, I went down the big slide with Julia and when we got to the bottom, there was a woman there who saw Julia and came up to me and asked if she was autistic. I, of course, said, no.....she has a brain injury, blah blah blah....and she said, well, my son is autistic. He is 10 years old. He didn't learn to talk until he was FIVE and now talks. She owns a little shop here in castle rock called "Regina's" and asked me to keep in touch. Regina's is ACROSS THE STREET FROM SIENNA'S where Shawn and I had our drink and saw the picture of the horse that looks just like ROY!!!!!!!!!!!!!!!!!!! I AM FREAKING OUT! What a good night!!!!!!!!!!

THANK YOU GOD for your "little" displays of caring and helping lately!

Susan

Tuesday, August 4, 2009

Met with the "Life Coach" today.........it went well, I think. We talked for about an hour. Mostly the conversation went towards letting it all go to a higher power - God. Well, as several of you know, I have been wanting more spiritual enlightenment for a while. My problem has been, time, and finding the right church.....i don't like the traditional churches so much, but find the arm waving a little much for my style. Anyway, I agreed that it would be great to find peace in this, and he prayed with me and prayed for me to have the Lord more effectively in my life. I agree, but also disclosed my anger about what God let happen to my daughter. So, we will see. He is off to Germany for treatment of cancer (I didn't probe on what type, etc....), but he seemed sincere and wants to help however he can. He has two daughters my age, both with young children, and was very interested in the whole vaccine thing.....I, again, told him I am not anti-vaccine, but think people need to be educated. I hope the relationship continues. We will see. He seemed like a very compassionate man who was suprised at how open I was willing to be with my issues. I just want help. If he can - great. If he can't, well, I didn't lose anything either. I am not going to hide my issues from those who want to see my life go in a positive direction - which is what I want. I know NOBODY can FIX it, but any direction, if positive, is appreciated.

Susan

Monday, August 3, 2009

Interesting Day yesterday....

So, yesterday I called someone who had come into my clinic and given me his card and brochure - he is a "life coach" if you will, and works with people who are struggling with life's stresses, etc. He had come into the clinic on Friday and for whatever reason gave me his info. I asked him if I just looked overly stressed out or if he gave his info to everyone, and he said, "no, something just told me to give it to you". We are going to meet tomorrow to talk about some of my "crap" and see if he has any more positive ideas for me to improve my family's situation. He also told me he wanted to do this at no charge......I asked him why - what's the point in that for you, and he just said it wasn't all about the money. So we are meeting tomorrow (in a public place)....hey, you have to be careful these days! But I have a good feeling about him. Then, MINUTES after I got off the phone with him, I got a call from someone I had met at a neighbors house on Friday who is an EMT, but also a chiropracter, and he asked if he could come over last night and treat Julia - again, I said of course and offered payment - which he declined. He used some "activator" thing on her and said he would do it a couple times a week and just see if it helps. All these complete strangers coming out of the woodwork.....its kinda freaking me out! Little angels everywhere.

Susan

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.