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.