updates

An Update on Micheal and what is going on in his life right now. As of today, he has been through a lot. The last year of his life has been MUCHO testing going on. In October of 2000 Micheal had a seizure that put him in the hospital for two days. It was diagnosed then as Febrile Illness and was left at that. We then were given training and medications to try to control his seizure. Ater that Micheal did okay an didn't do too bad. We just had to watch him when he got sick incase of fever so he dind't have another seizure.

After a few months things were fine but Mommy got preganet and went on bedrest so that we dind't have to go through what we did with Micheal. As a matter of Fact Mommy got preganet on Christmas of 2000.

Soon after that it was noticed that Micheal had trouble with his hearing. So we took him to get a hearing screening and it was determined that his ears were full of fluid and tubes needed to be placed. Since Mommy was on bedrest we postponed this until after the arrival of the baby.

In the mean time, Micheal started going to a special school for children with special needs. Here he recieves his PT, OT, and ST. He has made some improvements but is still behind in development.
His PT had some concerns about his condition and thought that he may have Cerebral Palsey. So after a few more seizures and his regular family Dr. not understanding what he was doing we sought out another opinion from a different Neurologist then we saw before in October with Micheals first seizure. It took a few months to get in to see this Dr. But it was well worth it.

Now, October of 2001 a year after the first seizure he is being re evaluated by the new Neurologist. His findings after examination and an EEG were that, Micheal has a seizure disorder but his brain function was fine. They can not determine the cause of his seizures because the last three were not fever induced so they don't go along with the Febrile Illness diagnosis to begin with. He also diagnosed Micheal with Cerebral Palsey and discussed more intense physical therapy and possibly getting Micheal in some AFO's which are braces for his legs. They also found on the EEG something else that is leading to more issues. They found an irregular heart beat also known as and Heart Murmur. We are going to see a specialist, pediatric Cardiologist tomorrow about this (Dec 19th 2001). Hopefully we will find out some good news!

Now I have also had the baby and she was premature also, six weeks which was alot better then Micheals 12 weeks. The day I came home from having the baby Micheal had two seizures that night. So we are trying to get all the appointments and things done for Micheal. So now we go on to get the ears taken care of. He went in for another screening and was found to be partialy deaf. In November we took him in to have tubes put in his ears. It was a really quick and easy procedure and has done wonders for him. Now he can hear! We took him to another screening last week, December 10th 2001 and his hearing is in the normal range now and his tubes are still in and there is a clear wave through his ears. Now with the hearing loss for the peroid of time he had it, it affected his speech severly.

We got a new speech eval done by an speech pathologist with SSI away from the school and the same findings were noted that there was a sever speech delay and he needed intense therapy to catch up with it. So he is now getting a therapy session pretty much everyday, not with speech those are twice a week but with all the other therapies he is a pretty busy two year old.

We also recieved the decission on his disability this month which stated he was found disabled due to a combination of health issues. The combination stated that he had a documented seizure disorder, with a documented heart disorder, and a sever speech delay, accompanied with Cerebral Palsey. He will remain on SSI now until he is five then he will be re evaluated again by SSI. As of today all of his evals have put him in the age rage of 18-26 months of development and he is now 31 months old.

That's pretty much all that has happened in the last year and hopfully he won't have to go through anymore issues but there is not any promises of that. All I can do is keep praying the good Lord will help him get better! I don't like to think of him as disabled because he is ABLE to do things, just not what others expect of him. We just don't expect too much from him and he keeps us very happy!

We went to the Cardiologits and they said he did have an very irregular fast heart beat and that he also heard an heart murmor. He said it all sounded benine and that there shouldn't be anything to worry about. Just to be on the safe side though they did a 24 hour monitor of his heart beat and heart sounds and such. We took the monitor off of him yesterday at noon (12/20/2001). He is doing fine now but didn't like the montior to sleep with, it made for a very long night. It also made me kind of upset because it was hard seeing all those wires hooked up to him again, the sight brought back alot of old memories that I had tried to bury in the back of my mind. They will send UPS truck to pick up the monitor some time soon, and then I am supposed to call the office next Thursday (12/27/2001) to find out the results.

I didn't get the results until late Jan. So here they are. It is just a heart murmur, nothing to be worried about and they will run the test on him every year to keep an eye on it. Right now he is doing good. His hearing is doing great and his vocabulary is building and he is starting to talk more to me an daddy. Now talking in front of strangers is a different story, it's like he goes mute. He is getting so big now, just today he told me exaclty what he wanted for lunch, bread, cheese, and he couldn't say salad dressing so he just pointed at that when I opened the fridge door. Then after making it he said there ya go thank you much. I almost cried it was just was just too cute!

We will try to keep the web page updated on his progress but Mom is also pretty busy with a new baby now so it may not be very often. Thanks for checking up on Micheal and following him through the story of his life.

NEW UPDATES: As of today, August 9th 2004 Micheal is five years old now and I have neglected the site for a while. So time for some new updates and changes to the page. Right now Micheal is doing great, he still has a problem with seizures slightly but not very often mostly at growth spurt times about once every three months. He's getting ready to get assessed for school next week. I had called to find out about the assessments and the school replyed back that those are only for "Normal" children. So I got kinda peeved at the school and decided that since I didn't tell the school Micheals name at that time when I described his disabilities, I'm going to just take him in there and enroll him as one of thier "Normal" children and if he doesn't pass thier assessments I will hold him back a year and enroll him next year. I have decided this because automaticly with out assessing his disablities the school decided that he would be placed in the "slow special learning disabled class's" . I must explain that my husband went to this school also growing up, and well he was placed in these special class's they planned on placing my son in. My husband graduated from this school not knowing how to read and with an F average grade point. So, this is why I have decided to do this. I will make sure he is not put in the class's that he will be left behind and forgotten about. I also realized that it was part of my mother in laws job to make sure that he knew how to read growing up and so it' is also partly my job to make sure he is learning what he is supposed to learn in school which I hope I live up to being the best teacher he has ever had and we may be considering home schooling if the school isn't cooperative.

He loves playing video games and wrestleing with his father. He's a Normal lil five year old boy right now and doing great. I'm proud of him and happy I was blessed to be his mother.

Updates On Micheals Progress

08/09/2004