the update of my son joshua

WELL THIS IS MY UPDATE OF MY SON. SINCE THE LAST POST, HE WAS DOING A LOT BETTER. HE WAS CALMING DOWN WITH THE SEIZURES. ABOUT CLOSE TO TWO WEEKS AGO, HE WAS LOOKING VERY WEAK, NO COLOR TO HIM, AND NOT DOING ANYTHING. SO HE HAD A APPOINTMENT TO HIS PEDETRICIAN. THEY SAID HE SOUNDED A LITTLE FUNNY. SO THEY GAVE HIM A NEBULIZER. ONCE I STARTED IT HIS FINGERS WERE TUERNING BLUE. SO MY MOTHER WAS CALLING THE NURSE. SO WE TOLD THEM WHAT HAPPENED. THEY CALLED THE AMBULANCE. THE HOSPITAL WAS RIGHT DOWN THE BLOCK FROM THERE. THANK GOD FOR THAT. THEY TOOK HIM IN QUICKLY. HE ALWAYS HAD A PROBLEM GETTING BLOOD FROM HIM. THEY NEVER COULD FIND HIS VEINS. WELL THEY COULDN'T GET ONE ON HIS HEAD, NOT IN HIS ARMS, NOT ON THE LEGS, AND THEY COULDN'T GET ONE ON HIS NECK. SO THEY HAD TO DO A CENTRAL LINE IN HIS GROIN. IT WAS A PROCEDURE SO I COULDN'T BEE IN THERE. ONCES THEY DID THAT THEY GAVE HIM SOME LIQUIDS AND THEY TOOK SOME BLOOD TESTS. HE WAS DOING BETTER AGAIN. HIS TEMP WASN'T NORMAL. IT WAS 96.5. SO THEY SAID THAT IT WAS HYPOTHERMIA. I DON'T UNDERSTAND THAT. AND THEY TOOK AN X RAY. THAT SHOWED THAT HE HAD NUEMONIA. HOW THE HECK MY SON GOT NUEMONIA AND HYPOTHERMIA? THEY SAID THAT HE CAN GET IT FROM KIDS WHO GO NEAR HIM WHO ARE SICK. I HAVE TWO OTHER BOYS AND THEY WEREN'T SICK. BUT THEN AGAIN THEY GO TO SCHOOL. EVERY TIME THEY COME HOME FROM SCHOOL I TELL THEM TO GO WASH THERE HANDS BEFORE THEY TOUCH HIM. ANYWAYS, THEY GAVE HIM SOME ANTIOBIOTIC CALLED CEFDINIR FOR THE BACTERIA. WHAT EVER IS THERE IT WILL KILL IT. THEN HIS NUEROLOGIST UPPED HIS KEPPRA MEDICATION. SO YOU CAN SAY HE WAS ON 4 MEDICATIONS. WHEN I FINALLY GOT OUT OF THE HOSPITAL, HE WAS ACTING A LITTLE DIFFERENT. HE STARTED YELLING AND SCREAMING. HE HASN'T REALLY SLEPT. HIS MOUTH HAD ALL WHITE STUFF ON IT. I'M ASKING MYSELF WHAT IS THIS? SO HE HAD A FOLLOW APPT WITH HIS PEDETRICIAN. SO I TOLD HIM ABOUT IT AND HE SAID THAT IS CALLED THRUSH. IT IS FROM THE CEFDINIR. AND SO HE GAVE ME ANOTHER ANTIBIOTIC CALLED NYSTATIN FOR THRUSH. I HAVE TO GIVE IT TO HIM 2 TIMES A DAY FOR THREE WEEKS. IT IS GONE ALREADY BUT I STILL HAVE TO GIVE IT TO HIM. NOW HIS HEAD IS GOING SIDE TO SIDE. HE NEVER DONE THAT EITHER. NOW I HAVE TO FIGURE IF THAT IS FROM THE CEFDINIR OR THE NYSTATIN OR WHAT? HE DID THAT WHEN I WAS COMING OUT FROM THE HOSPITAL. I REALLY HATE MEDICATION FOR MY SON. HE HAS BEEN THROUGH SO MUCH. I FEEL SO BAD AND SO USELESS. SOME TIMES I CA'T SLEEP AT NIGHT BECASUE SINCE HE IS TEETHING HE IS CRYNG TWICE A NIGHT. I HAVE TO CALM HIM DOWN. THANK YOU SO MUCH FOR LISTENING TO WHAT I HAVE TO SAY ABOUT MY SON JOSHUA. I JUST NEED TO TALK TO SOMEONE THAT IS IN THE SAME BOAT AS I AM. I HAVE BEEN DEALING WITH THIS FOR ABOUT 11 MONTHS. WE ALL HAVE PRAYED ON HIM. I HAD A PASTOR COME TO THE HOSPITAL WHEN I WAS THERE THE 1ST TIME AND HE PRAYED OVER MY SON. WHAT ELSE CAN I DO? THE ONLY THING THAT I HATE IS THAT I HAVE TO JUST WAIT IT OUT. I WOULD LIKE TO DO SO MUCH FOR MYSELF AND FOR HIM AND I CAN'T REALLY DO ANYTHING. IF ANY ONE CAN HELP ME OUT WITH SOME INFORMATION ON ANYTHIN I WOULD LOVE SOME FEED BACK.

MY SON

I would like to say that I had a very different and harsh pregnancy. I was 5 months pregnant when the doctors told me that I was high risk because I had to much amniotic fluid, and the baby had an enlarged liver and he had a cyst near his bladder. I had a lot of ultrasounds. The next two weeks I had to go back and get another ultrasound. The doctor told me that the cyst is gone and the liver is back to normal size. But i still had a lot of amniotic fluid. They did a lot of tests on me to find out why. They couldn't find the reason. All the test that they did on me came out negative. No infections no nothing.As time went by, it was time for me to deliver. The mid wives had me pushing in about 4 different positions. I was standing up holding a bar pushing. I told the doctor that he was finally coming out. So she was trying to pull him out but it was a little to hard. so i gave her one last push and she finally got him out. Everything was ok for the last 4 months of his life. Until he was 5 months old. One day, i woke up early in the morning and was giving him a bottle. He stopped drinking and his arms elevated and was stiff and he was staring into space. That wasn't a good site to see. I was scared. I took him to the hospital and I had to stay there so they can see what he did. They, the doctors thought it was reflux. it only happened while he drank and when he woke up from a nap. But they didn't know so they sent me to a different hospital that has nuerologist and doctors that have the machines that could know what is is going on.Ok, now we are in a different hospital that is 45 minutes from where i live at. I had to tell residents and the nuerologists o what had happened. So they took mri's cat scans, blood tests, fluid from his spine, etc. Everything that they did came out negative. But the last thing that they did was an eeg. It said that he had abnormal brain activities. He was diagnosed with infantile spasms. He has been on medication for the infantile spasms since he was 5 months old. from that he ended up back in the hospital for an overnite. Then they saud that he has generalized seizures. So they gave him another type of medication. the medications that he is on still hasn't worked. it just makes him sleep. He can't walk, he can't talk, he can't hold anything, he can't grab, he can't roll over or walk. He has been in therapy on and off. They has been no change. I have helped him too nothing. I can't work because of this. I go crazy because i do my research and i can't help him. He was supposed to start a ketogenic diet. When i go see his doctor about it he tells me no we aren't going to do that. It's really for seizures. The only thing that i can do is change his diet to a healthier diet. I gave him healthy foods but he is still the same. I have to help him going to the bathrrom too. He has to take miralax to help him. I have been out of work since I was 5 months pregnant. I am looking for ways to make some money. I feel useless. I would like to speak to someone that has the same problems. maybe i would be able to feel better. thank you.