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...
Monday, May 10, 2010
Tuesday, April 20, 2010
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!!
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!!
Friday, March 19, 2010
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!!!
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
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
Sunday, March 7, 2010
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..
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..
Tuesday, January 12, 2010
January 12, 2010
This month is going to be a long one. Zachary has many appts this month. Zachary will meet with a nurse from Regional Center due to his swallowing/choking problems. He will also need to get blood drawn to check his numbers. He will go to the Immune Doctor to see how he is doing with his Tcells. Zachary will see a team of 7 Doctors/Professionals at the Cleft Craniofacial Team again to see when they will scope him. Unfortunately, it will be at Childrens Hospital of Orange since the Dr. Elmendorf kicked Zachary out of the clinic for me reporting his nurse for not doing her job.
Zachary will have to re-establish a primary doctor again due to his first doctor Dr. Koffman had to undergo a bone marrow transplant. Thankfully, he is doing really well. We switched to Dr. Longknecker and then he disappeared and finally found out he left St. Jude and is opening his own practice. So we went back to St Jude in Diamond Bar and went to Dr. Celio. Dr. Celio has treated Zachary in the past and is a great doctor... I was just worried if he wanted to take on this case. Hopefully he is up to the challenge...
Zachary will be relocating most likely this month... I have lost the home to foreclosure and am not able to save it. With no child support coming in and only being able to work 30 hours a week due to Zachary's issues, it makes it difficult to do anything about it. But he will adjust he is still young.
I am looking forward to a better year in 2010.. Hopefully this is the year that will turn things around.!!!!
Zachary will have to re-establish a primary doctor again due to his first doctor Dr. Koffman had to undergo a bone marrow transplant. Thankfully, he is doing really well. We switched to Dr. Longknecker and then he disappeared and finally found out he left St. Jude and is opening his own practice. So we went back to St Jude in Diamond Bar and went to Dr. Celio. Dr. Celio has treated Zachary in the past and is a great doctor... I was just worried if he wanted to take on this case. Hopefully he is up to the challenge...
Zachary will be relocating most likely this month... I have lost the home to foreclosure and am not able to save it. With no child support coming in and only being able to work 30 hours a week due to Zachary's issues, it makes it difficult to do anything about it. But he will adjust he is still young.
I am looking forward to a better year in 2010.. Hopefully this is the year that will turn things around.!!!!
Saturday, January 2, 2010
December 09
This month has been lots of sickness. Zachary has had many colds this month, more than normally. Zachary had his flu shot and 2 h1n1 shots. Who knows if that is why Zachary has been sick so many times.
Zachary was discharged from the new neurologist. She seen Zachary for a whole 5 minutes and had this duck puppet and moved him around so Zachary could follow it and then she said okay I am discharging him. I inquired about autism because of all his autistic traits and she stated he is not autistic he interacts and looks at you, so he is not autistic. Basically shut me down and didn't want anymore questions.
Zachary will face other issues in 2010. He will be scoped to find out what is not working in his throat and then we can proceed to see why it isn't working and if surgery will help it. We are still looking for help in getting him medically based speech therapy since Loma Linda pulled the garbage on him they did. How do you not treat a child because someone makes a complaint on your nurse. That is a horrible person let alone a doctor.
Zachary will see a plastic surgeon again this year regarding his chin and soft pallet. We will see how this will go this time.
With us losing our place this month 1/10 we will see how Zachary adapts to the change. With not having a place for all his stuff and school stuff for himself will be kinda interesting to see how he reacts. I have asked places if anyone knows of any charities to see if we can get help in reverting my mom's garage into a room or making the patio into a room. Don't know if we will get help but hopefully god willing.. People get help all the time even when they don't need it. Why is it when you really need the help you can't get it?
I can't get social security for my disabled son because I make too much money. When I just went back to work and got one pay check they gave me $75.00. I don't understand when you really need help it just seems like you don't get it. But these people that do everything crooked get all the help they need. They lie and tell them things that aren't true and never get caught. I try and do everything honestly and get screwed everytime!!
Zachary was discharged from the new neurologist. She seen Zachary for a whole 5 minutes and had this duck puppet and moved him around so Zachary could follow it and then she said okay I am discharging him. I inquired about autism because of all his autistic traits and she stated he is not autistic he interacts and looks at you, so he is not autistic. Basically shut me down and didn't want anymore questions.
Zachary will face other issues in 2010. He will be scoped to find out what is not working in his throat and then we can proceed to see why it isn't working and if surgery will help it. We are still looking for help in getting him medically based speech therapy since Loma Linda pulled the garbage on him they did. How do you not treat a child because someone makes a complaint on your nurse. That is a horrible person let alone a doctor.
Zachary will see a plastic surgeon again this year regarding his chin and soft pallet. We will see how this will go this time.
With us losing our place this month 1/10 we will see how Zachary adapts to the change. With not having a place for all his stuff and school stuff for himself will be kinda interesting to see how he reacts. I have asked places if anyone knows of any charities to see if we can get help in reverting my mom's garage into a room or making the patio into a room. Don't know if we will get help but hopefully god willing.. People get help all the time even when they don't need it. Why is it when you really need the help you can't get it?
I can't get social security for my disabled son because I make too much money. When I just went back to work and got one pay check they gave me $75.00. I don't understand when you really need help it just seems like you don't get it. But these people that do everything crooked get all the help they need. They lie and tell them things that aren't true and never get caught. I try and do everything honestly and get screwed everytime!!
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