WORDS!

Bad news first:  Still no 'real' diagnosis, although Autism as basically been pulled off the chart and a general diagnosis put in its place.  What it means?  They STILL don't know.  He's also had another ear infection, after almost a two year hiatus.

Great news next!  We've put Julian in at Mercy Therapy center in New Philadelphia, Ohio.  His occupation therapist there is fabulous, don't get me wrong.  However, his speech therapist there is AWESOME.  Both Ryan and I LOVE her for what progress she's made with Julian  TONS of new sounds, and major effort from him ALL the time to try new words.  AWESOME!!!!!!  She's not exactly the 'nicest' person.  I thought that was just me, because she's very pretty (go ahead, laugh), but Ryan asked me the day he went back with them if I thought she was, well you know.  And I agreed and told him I thought it was just me.  But Julian likes her, and is doing so well.  We are keeping him at this facility for therapy even after school starts.  In FIVE days!!!!  Preschool, here we come!

Julian Turns 3!

In two days, Julian Michael will be Three! It's so hard to believe.

With my Grand-fathers' passing, I haven't had the time to blog about Julian's last two appointments, one with the neurologist, Dr. Abdalla, and one with his pediatrician, Dr. Gigax.

At the neurologist, we received the results from his speech and hearing evaluation (Well, he didn't stay for the 'hearing' portion, he had a meltdown). He was diagnosed as Autistic, outer spectrum. We really didn't get alot more than that. I asked 'where do we go from here?" The doctor was adamit that we have to find out WHY. I'm a little torn. On one hand, this means more test and specialist for Julian, on the other, I'm not the 'accept and ignore' type of mom. I do want to know WHY. And let's be honest here, Julian is so used to most of this stuff.....he takes it in stride. Kids are truly adaptable, even Julian! This is is normal, and he's okay with it most of the time.

I still felt that we didn't really get any ANSWERS (yes, I'd still like to go into an office and get my WHAT WHEN WHY) I had Ryan call Dr. Gigax's office and make a pre-well check visit for Julian, hoping that we'd get a least a 'do-this-next or call-here from her, before his well-check (it's actually this wednesday). We went and talked to her, for TWO HOURS. She read through the results that Dr. Abdalla had us bring to her (since brining them would be quicker than him mailing them). She says that while technically, he scored borderline, thus the outer spectrum autism disorder discovery, she still feels he doesn't have Autism. She feels even stronger now, though with the results, that he has a genetic disorder/condition causing these symptoms, so her reccomendation was to continue to search for WHY. She gave me another hospital option, one about 3 hours from her called Northwestrn Children Hospital (she actually did her residency there) since I wasn't really comfortable with the University Hospital option AND they were not calling us back (STILL). We have a call into the Neurologist, to change the refferal, then they are going to make us an appointment for Julian there, to get a second opinion from their Neurologist, finally get that muscle biopsy, and schdual most test. I'll keep everyone up to date on that as we get more information. I talked to Dr. Gigax also about some of these 'diet' changes that are said to benefit children with Autism. Right now, we are choosing NOT to change Julian's diet, as all of his doctors feel that it's a genetic cause. She also felt that most of those treatments help mostly the bowl problems in these children, and we don't know WHAT Julian's bowl issues are, only that he has them. He goes back to her on Wednesday, and I haven't decided if I'm going to presure that talking about that option more then, or wait until we see the new doctors. Our friend Jenn had also mentioned the vaccines and wondered if I thought that could be the cause. We brought this up, shortly, with the doctor. She actually feels that we should push this gentic cause thing, and if we don't get anywhere, look into it. The thing is, Julian only received a couple boosters (what people are blaiming the Autism cause on mostly are the boosters, out of those accusing the vaccines) because he had such sever reactions to the original vaccines. We asked why the diagnosis if they didn't think that was really what was wrong. She explained that while they feel he has a cause with Autism as a symptom, the fact his he HAS the symptoms, and needs the resources (speech/behavioral thearpy). So for right now, this is how it needs to be, for Julian. I also asked if we could remove that diagnosis in the future if we find out the Cause, and she said absolutly, so I'm comfortable with that. Whatever it takes.

So we are still looking and searching.

Neurology Appointment

Julian had his follow up with his Neurology doctor, Dr. Abdalla Abdalla, today at Akron Children's. I've decided to post this short, to let everyone know the basics of what was said at the appointment, however, I am VERY overwhelmed right now, and feeling kind of alone, so explanations and such of medical terms and meanings will come in a later blog. Soon though, I promise. Julian will follow up with Dr. Abdalla in 4 months. Due to the lack of information I feel I obtained today with a very weighty diagnosis, I asked Ryan to make an appointment with Julian's pediatrician for Wed. Sept. 30 to go over options and be directed into the right direction.

My mother took Julian and I to his appointment today. We received the report from (results) the speech and hearing evaluation that was done on Julian a couple of weeks ago. It says that he indeed in classified into the Autism Spectrum Disorder. Basically, from what I have gathered on the internet so far today, the is on the outer sides of the spectrum, so not considered 'severely autistic'. I asked the Neurologoist 'where do we go from here?'. He said that we did need to find out why Julian has autism, what part of his brain in affected, and what kind. So, yes, MORE testing. I mentioned that the test that was ordered (muscle biopsy) at cleveland clinic could not be done because our insurance does not cover it, and he wrote a referal to the University Hospital *still not sure about that, but not seeing any options*.

I spent a lot of time researching when I got home from that appointment. Lots of sites with all kinds of information. I have found some grants that can be applied for to help obtain the test he needs (mirroarray) that we can't afford, as well as educational toys for his special needs that are crazy in price. I applied for one that I was able to apply for online, the rest have to be downloaded, printed, and mailed, so I have asked my mom (via email) to print them. I'm also going to keep looking and send some via email to my mother in law to print too for us so we can get them in. One thing I'm sure of after searching all day online is this is going to get pricey.

I'm scared for my son. I'm nervous. I'm anxious about his future. I'm worried how we are going to be the best and get the best for him, because he DESERVES it.

As far as Julian's behavior recently, he has gotten slightly more aggressive, he hits himself, routine is more important than ever, and he seems to be smarter every single day. He's the most loving child I've ever seen.

The main site that I'm looking on right now is autismspeaks.org. Check it out.