April 29, 2012

I didn't realize how long it has been.  It has been since October since I have posted anything.   After the pagent.   The day after Christmas Zachary ended up in the hospital for his blood sugar level.  He said his tummy was hurting and he couldn't walk.  I poked his finger and it was 43.  It should be 70 or higher.  So I poked it again because I didn't believe I did it right.   Well I rushed him to the hospital and they admitted him for 2 full days.  They found out absolutely nothing lol.   They ran all sorts of tests and even brought in Metabolic Dept.  They tried to starve him and get his blood sugar to drop again so they could take more tests but it didn't work.  So we came back in January and did more blood work to see if he had something wrong with his liver call glycogen storage disease.  I didn't believe he had it but figured better to rule it out then to always wonder.    Let's see othen than that the only other hospital visit was when he fell off the bed backwards.   I rushed him to the hospital and they did a CT Scan and said everything was fine.  

This year is real tough.   We have started behavioral therapy everyday an hour a day mon thru fri and saturday for 2 1/2 hours.  Soon I will try and put him in Karate and possibly bowling.  I am hoping with the Karate and behavioral therapy it will help with him bouncing off the walls.  So when he goes to school in August he will be able to manage himself better.   I am trying to put him in a regular class hopefully with an AIDE.  He is really smart and reads and adds already, so I believe he is ready for 1st grade but emotionally not so sure.  So needs a lot of redirection and attention span is like the Autistic Doc said "He has an attention span of a flea".   LOL.   So true.    He will get his first live vaccine in July for Chicken Pox and not too sure if I will follow with MMR.  I figure with the Autism I don't want to make it any worse witht that shot if there is any truth to autism and then shot.  

Zachary has come so far since 3 years old.   Just alone with his talking since almost 2 years ago.  He speaks like a 7 year old.  He still has feeding difficulties and muscle issues.  But he is thriving more and more everyday.  He has truly been a miracle baby.  From going from not exactly knowing how bad he would be to this talkative little monster.  He has his heart defects still and we will continue to watch those.  But overall he has made extremely miraculous progress.    I have been lucky to have the teachers and therapists I have had.  The school teacher he has that comes to the home has been a miracle for Zachary.  Without her Zachary would not have come this far with his talking.  I do credit that to her completely. 

We are coming up this June on Zachary's 6th Annual Bowlthon.  This year the prizes are phenomenal!!!  The best prizes yet.  

Everyday Health Heroes

This month Zachary was in a pagent for Seriously ill children. We had a blast! Zachary was a ham like normal... He walked out on stage and said Hi Uncle Paul and then walked down the runway Hi ----- Hi and waved at the Judges and then walked to the end and said Hi Susan.... then looked at the camera and gave a big ROOOOAAAARRRRR..... Everytime they had the microphone he wanted to talk and they would put it up to his mouth and he would say I'm 5 years old.. I'm 5 years old... LOL... He was funny..... Someone who worked for the show came up to me right after I think Zachary said on the microphone... Thank you all for coming... Have a good night... She said is he your son?? I said yes.. She wanted to know his name and said almost definetly that would be the end of the show and he would be on TV... This show airs in December.... Can't wait to see it!!! Zachary made many friends that day.. Of course all Adults and all girls!!! hahahaha.... He is a HAM!

Report from Neuro Doc

We received Zachary's report from the Neuro Psych Doc and he concluded that Zachary is Autistic. Now 2 specialist have concluded this and that he would need 25 hours of Behavioral Therapy in order to be able to function normally when he gets older.. So I took the report to the Regional Center and their team of Doctors (same ones who said he isn't autistic) that he doesn't need an Intensive Behavioral Therapy Program.. So here we are again Regional Center decides and the 2 Specialist don't know what they are saying.. BULL... 2 Specialist know why more than the Regional Center Docs. The Regional Center Docs are still saying Zachary isn't Autistic... HERE WE GO... Time to start the fight all over...

July 22, 2011

Today is the end of extended home studies... It will continue with the normal school year on August 23, 2011 when the school year starts up again. Zachary has 4 weeks off from the Occupational Therapist, Speech Therapist and Preschool Teacher 4 times a week. Don't let this fool you, he still has to go to Casa Colin for his Physical Therapy, Feeding and Speech Therapy and Occupational Therapy. He was still has for now 2 hours a week of Behavioral Therapy at home. Hopefully, this will soon change to 25 hours a week so Zachary is getting all the help he needs to become fully functional as a high functioning autistic child. Hopefully the next time I notate it will be stating we got the services.. Will wait and see...

Autistic Doctor (Casa Colina) 7-20-2011

We went for our follow up with Dr. Baumann, Pediatric Neurologist Specializing in Autism. She seen the progress Zachary has made with talking and believes Zachary will be able to have a full and normal life provided he gets the help and therapy he needs now. She is requesting 25 hours a week of behavioral therapy. The same that two other neurologists have requested since before he was 3 years old, but everyone (regional and school district) has ignored. She states Zachary is a very smart child who will go far in life. :) If the regional center would have listened before Zachary would be further ahead of where he is now. They think he is a normal child because he is not the typical autistic child. This is what absolutely is sad that kids who are not the typical autistic kid suffers because they don't want to help and pay for the therapy.

Orthopedist 7-19-2011

Finally, we seen the Orthopedist after trying to get an appt since November 2010. We went for Zachary's feet and back. His feet are flexible flat feet and he walks on his arches. We also thought he might have scoliosis. Thank god he does not have scoliosis, but his feet are less fortunate. He will need orthodics coming up next year but for the meantime in the summer we can just use his sandals that have an arch in them. The doctor didn't want to make him wear shoes and socks when it is soo hot.

Zachary ER 7-16-2011

Friday, my family and I went to dinner and Zachary fell asleep at the table. (This is so not Zachary) Zachary is usually talking to anyone and everyone who walks by. I thought it was unusual but figured his cousins were here and he was just pooped. The next morning he woke up and walked to the couch and went back to sleep. This too was unusual but I let him sleep. He woke up a few minutes later with liquid coming from his mouth and nose and wasn't able to breathe. I thought he was going to throw up and was scared because he has never really thrown up out of his mouth. As a baby he always regurgitated out of his nose. So I called the nurses line and they stated to take him to emergency since he was having a hard time breathing.

The ER Doc listened to his lungs and they took temp and all looked good. The only thing that was strange is my son wasn't talking and he was just laying there lethargic. The doc said ,"Everything is good, but you know your son what would you like me to do?" I replied, "This is not my son! My son would be talking and pulling at your pockets and stethascope and talking to anyone and everyone. There is something wrong with my son, so please do all the tests to find out what is." So they did and the found he was dehydrated and his blood sugar level was 50. The normal blood sugar level should be 70 which I just learned. This is not a Digeorge Syndrome problem or Autistic problem, so I am unfamiliar with this and it kinda threw me for a loop. Basically, he is not getting enough calories and liquids. Don't know how this happened since he drinks and eats all the time... So now it is time again to change what I am doing.. No more raviolis or spaghettios unless they are whole what instead of the can stuff. I have to be careful because he can only eat things that are easy to chew due to his feeding issues. Now more gatorade instead of juice.

Took Zachary back to docs on Tuesday the 19th and had his finger stuck and his blood sugar was 86 which is just fine.. I just have to watch him for this now and be aware of it.

Neuro Psychologist 7-15-11

Today was the last appt of 3 that we seen the Neuro Psych. He has concluded that Zachary is Autistic. I will wait and see if he puts with that ADHD or/and ADD... We had spoken about ADHD because Regional Center wants to put Zachary with that only.... and he mention Attention Deficit at one point.. We will see what the reports states when I get that....

July is for Doctors

This month I had originally had planned on being laid off, but my work offered an extension to stay for a little bit longer, so I did... I had planned many doctor appts for this month. We are seeing the Neuro Psych to evaluate what is going on in Zachary's head. So far seems to be Autism... We have seen him twice and have one more appt today...

Orthopedist... Finally, got an appt with the doctor for Zachary's feet. St. Jude Doc stated it is perfectly normal to walk on the inside of his archs... He just has flat flexible feet. hmmm it is getting worse doesn't seem so normal.... But we will get a second opinion 19th...

Autism... 20th we go back and see Dr. Baumann the Autistic Specialist.. She diagnosed Zachary October 2010 with High Functioning Autism. But since Regional Center will not take the Specialist Diagnosis we have to go get another Specialist who does more testing to back up or shoot down The Doc. Soon we will know...

Zachary is doing fantastic other than the repetitive questions and things. The lights, fans and music continue to be a problem along with the smelling everything... These are problems and need to be watched..

Zachary's 5th Annual Bowlathon

Zachary's 5th Annual bowlathon went great this year.. We occupied 22 lanes of the 36 lane bowling alley. We had great raffle items and wonderful help from the donating companies and individuals... Right now it stands at $2,305.00 all together being raised by donatings, matchings and bowlathon.... This is the best year yet and we are still going.... This year was the first year that Zachary did his own thank you speech... Every other year he hasn't been able to speak. This year he did and did a phenomenal job over and over and over again.. lol

April - MAKE A WISH

Make-a-Wish came in April and made Zachary a playroom/therapy room. Zachary can now do school in his own little room. Zachary loves his room and loves to play and do school in it. This was an awesome thing that Make-a-Wish did for Zachary.

MARCH 2011

March was an eventful month... A new Speech Teacher started and come over sick.... An assessment was done by Regional Center... Zachary was in the hospital for RSV and 2 new therapists at Casa Colina.

The Assessment was done by Regional Center and they state Zachary isn't Autistic and they would be looking at ADHD when he turns 6 years old.. Of course they are going to look at that then they don't have to pay for him anymore....

A Specialist in Autism states Zachary is High Functioning Autistic just so happens to be the same Specialist Regional Center uses for their Seminars(This I don't get, they wont take her diagnosis and she specializes in Autism). Regional Center states the lights, fans, vaccuums and the smelling everything is not an issue. hahah what a joke... They assign a behavioral therapist to come and do therapy on Zachary at my home. While I am sitting here on the computer Zachary leaves his playroom/therapy room where he is with the behavioral therapist and runs into the room I am in and grabs the vaccuum and smells the bag. The Behavioral Therapist looks at him and then looks at me in disbelief.. I said Oh don't worry Regional Center said this wasn't an issue... She looked at me HUH? She said this is an issue.. I said I know I was being sarcastic. I told her Regional Center wanted to look at ADHD when I come back in one year and she replied he is not ADHD he is Autistic. While they are assessing Zachary, he is playing with the lights. They finally after an hour of him playing with the lights they finally tape them down, so he can't play with them. How is this not an issue??? Anyone who has been around Zachary would know lights, fans, vaccuums and music is what he is all about. I have people who have met him once and they know this and see this. How is it that a group of Doctors don't see this???

In the next few days, Zachary landed in urgent care and they gave him an antibiotic and sent him home. The next day he got worse. I took him to Emergency Room and on the way my tire blew out on the freeway. (Talk about luck) When I finally got to the ER Zachary was at 103 and usually we get in real quick due to his issues, but this time they had us waiting an hour by then Zachary was 104. I told him they needed to do something because he is at 104 now. They took him in and took care of him.. They did all the usual tests blood, xrays and bulb syringe and came back and said he had RSV... It is an infection that attacks the lungs and this white blood cells and tcells where the lowest they have been in a couple years and needed him to stay overnight for them to monitor him. 24 hours later they let him leave with an appt to get blood drawn in a week to rule out any other issues that could prove to be something far worse with the tcells and white blood cells being so low.. Everything was okay the virus is what brought the #'s down.. It was a little scary...

Zachary started Therapy at Casa Colina. He now attends therapy for Physical Therapy, Speech/Feeding Therapy. These are 2 therapies that could greatly help him.

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..

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.!!!!