ENDOCRYNOLOGIST

We are back at the Endrocrynologist but this time for a different reason... Zachary's calcium is fine, but now we are having issues with his Vitamin D. Now is he back on medication for this. So we have added yet another doctor to the appointments that got rid of over a year ago.. Hopefully, we can get a handle on this and doesn't lead to any further problems...

March 10, 2011

It has been a while again since I posted. Zachary has been diagnosed by Casa Colina as High Functioning Autistic. Of course, Regional Center doesn't want to take the report of their own person who does their seminars, they want to waste resources and money and do their own. So we will do it again.

Casa Colina wants Zachary to have Speech Therapy/ Feeding Therapy, Occupational Therapy and Physical Therapy. Trying to figure out a schedule where we can do this. Zachary still has therapy from the school district which is also Speech, Occupational, Language and a Preschool Teacher 5 hours of week. So where do I find the time??? Trying to figure that one out.

Regional Center came over the other day to assess Zachary for Behavioral Therapy. Kids that are autistic need this, of course some that are not autistic do too. My old service coordinator who has no degrees and is not a psychologist tried to tell me Zachary does the things he does because he isn't around other kids. This is a crock... She knows nothing... The Behavioral Therapist assessed Zachary and her assessment was that Zachary needs the therapy that an autistic child would need since Regional Center doesn't think he is Autistic.

I will fight this battle again and again until Zachary gets the therapy he needs.. He is basically 3 years old mentally and some physically. Let me tell you he just started talking in July 2010 and WOW his vocabulary is amazing. It took 2 weeks of his teacher pounding him with Speech and then complete sentences came out... It was truly AMAZING!!!!

Autism

Well where to start.. Zachary has seen a Regional Center Psychiatrist and they stated he is too socialable to be autistic... A Neurologist at CHOC spent 5 minutes with him strapped in his stroller and stated he is not autistic because he is looking at me... The school Psychiatrist hasn't even begun the testing and stated he doesn't think he is autistic because he is too social.

Well I went to an Autism Seminar and the I asked the Autism Specialist. My son is very socialable and loving and has autistic traits. Since he is so socialable is there a chance he could still be autistic. She state YES! Now I am not stating that Zachary is Autistic, but this crap, "He is looking at me or he is too socialable" isn't cutting it. They haven't even performed the proper tests to see if he is autistic, so how do these other people know he isn't????

So we now are going to see a specialist at Casa Colina FINALLY!!!!



We finally got a signing teacher for the home 1 x a week for an hour... YEAH IT ONLY TOOK A YEAR!!! He also needs more Occupation Therapy for FEEDING... That may take another year lol.. Who knows... We will see...

Here we go again....

The other day Zachary was limping. I made a doctors appt to make sure his foot was okay. Before we went I picked up my mail and got a letter from Childrens Hospital of Orange stating that Zach's Vitamin D level was low. Now 1 1/2 to 2 years ago when he was Discharged from Endocrynology, they stated it was very unlikely for him to have problems like this again... Well HERE WE GO AGAIN!!

The good news Zachary's foot is fine.. We did XRAY and nothing is wrong...
The bad news Zachary will have to go back on medication. I finally got him off all his medication about November last year. Now he will have to go back onto the medication calcitriol that he stopped using 2 years ago.. Here is the kicker the medication costs $136.00 WONDERFUL!!

In other news... In June they will do an endoscopy on Zachary.. They won't be using a camera or anything, but the ENT will be able to see if he has any redness from acid reflux or if it is gone all together. He will also be able to see the submucosal cleft and how it is progressing..

Zachary has also been referred to a foot doctor. Zachary walk on the insides of his feet. Hopefully no surgery will need to be done and this is something that can be fixed without surgery.. I will cross my fingers and we will see.....Wish us luck!!

Zachary's WISH FUND

Zachary has done a wish with MAKE-A-WISH Foundation.



Unfortunately, they don't grant wishes that require permits.



Zachary's wish was to have a room built on the house of his own. Zachary can't be around other kids or go to playgrounds or play with other kids toys. So he wanted to have his own space where his therapists and teachers could have their sessions in a good area with lots of room. This way Zachary can have all his toys in one room and also his school stuff in the same. I was hoping maybe we could get enough donations that we can get the room built for him and then maybe MAKE-A-WISH could furnish the room for him. I would appreciate any help!!!

Zachary's 4th Annual Bowl-a-thon

This year I am doing the bowl-a-thon a little earlier. I am having the bowl-a-thon on

June 6, 2010
Oak Tree Lanes
990 N. Diamond Bar Blvd.
Diamond Bar, Ca 91765

3Pm to 5Pm

$20.00 per person
2 hours of bowling and shoes
1 Large 1 topping pizza and pitcher of soda PER LANE

There will be a raffle again this year and I will also have a 50/50.

I will start selling tickets early this year and also at the bowl-a-thon.

ALL PROCEEDS GO TO THE AMERICAN HEART ASSOCIATION WWW.OCHEARTWALK.COM

Cleft Craniofacial Team

We seen the 7 doctors at Choc's Cleft Craniofacial Team. It was very enlightening.

The ENT which I will not let touch my son wants to take out his Adnoids. Which is what my current ENT told me would happen. I will refer Zach back to my ENT due to the Cleft Craniofacial Teams ENT seems to give wrong answers and not know much.

The Genetics Doctor stated that if I want to have an assessment done for Autism to take him to OC4Kids. I called and they stated they only handle people who live in Orange County. Nevermind, all of Zachary's doctors are at CHOC in Orange County. Then I tried Gottschalk in Irvine and they don't take my insurance. So what is someone to do??? My other option is go to Casa Colina and pay $500.00 for initial visit... I don't know about anyone else, but I don't have $500.00 in cash... So this is on HOLD.

The Speech Pathologist stated Zachary has Apraxia, but the Genetics Doctor says he doesn't. So tell me which is it???? Who knows????? She told me I need to find a Speech Therapist to come into the home. I've been looking, but not successful...

The Orthodontist and the Plastic Surgeon hmmmmm this is where Zachary's surgeries will be. First of all, we need to do a sleep study... If Zachary has apnea then they will immediately do surgery and pull out his jaw. This will be done sooner or later but if he has apnea will be much sooner.. They would put something in his jaw and I would have to turn once a day. This supposingly won't hurt him, but I am sure it will kill me... Eventually, around 8 or so, he will have his pallet pulled down and his submucosal cleft fixed and everything wrong with his mouth corrected. These are the surgeries which will be a challenge.

The reasons I don't like this clinic is in the report they sent me states wrong things. I don't know if this normal but they stated post surgery for a VSD. I believe that is Ventricle Septal Defect which my son never had surgery for. So this bothers me a little. They state a couple other things which aren't really big but bothersome.

I will update soon. Getting settled soon in our new place, so I will able to update more often.. Take care..