Johnny Rodriquez our Schizencephaly super hero June

⦁ I was 18 when I found out I was pregnant. When I was 3months pregnant, I had passed out at work and hit my stomache on a metal table. when the ambulance got there, they said my sugar was 24 (way to low). They got me to the hospital and said the baby was fine I had nothing to worry about. 2 weeks later, i started cramping really bad, I was rushed to the hospital and was told that i was probably miscarring but they decided to admit me over night. I was released the next day, and was told to go home and rest.. A month later i was rushed back to the hospital and was told that i was trying to deliver early, I was given medication to stop my contractions and sent home I went from 4 months to the time i delivered my son going into labor and they always gave me medication to stop him from coming. I was put on bed rest at 7 months. Johnny was due May 19, 1999 and they finally gave me medication to start my labor on June 6, 1999 and he was born 45 mintues later…
During birth I had passed out, and finally the doc got me to wake up and pretty much told me if i didnt push my baby would die. So i pushed. When he was born he was white and had a cone shapped head. The doctors told me that he was absoulatley fine.. We got to go home within 48 hours of him being born! He was such a great baby, he did everything early and was sitting up at 6 months and rolling over.. Never even thought there was anyting wrong with him!
1 day old
11 days old Johnny was such a great baby, he did everything early and was sitting up at 6 months and rolling over.. Never even thought there was anything wrong with him.
All a sudden he stopped doing anything and could not set up at all by his self. When he was 6 months old he stopped breathing on me and was put on a sleep apnea monitor. Finally at 11 months old they did a MRI. I was notified by phone 2 weeks after the test was done that my son had a rare disorder called Bi lateral open lipped schizencephaly.. I was devasted and felt like I did something wrong even though i knew i did everything I was suppose too. I went and got on the computer tried to find out what this was and what caused it. The doctor told me that Johnny was his first case to diagnose with this in Oklahoma. He was put in therapy at one year old and has continued it since. I was told that Johnny’s schiz was so bad that he would probably die before his third birthday and be mentally retarded.
From that day on we took it day by day. Johnny started having ear infections at 1 year of age and had to have tubes put in every six months or so. When he was two he had to have surgery on his middle ear where they said he needed to have a pulip removed. When the doctor got in to the ear, he noticed that he had a tumor that was bigger than a softball.
He decided to not go any further. He came out to the waiting room and I could just feel that there was something wrong! We were sent to Childrens Hospital Oklahoma City. They admitted Johnny to the hospital and scheduled him for surgery that next morning. We were told that this was a dangerous surgery. They had to do a mastoidectomy and also removed all his hearing bones in that ear. He had a Cholestoma (tumor) that had damaged the inside of his ear. Which made him deaf out of that ear. Family from both sides was there for us during this time and It took 12 hours to do the surgery, then he had to stay in th hospital for 1 month untill he was infection free. When we was sent home, we had to administer iv antibiotics every 6 hours, to keep infection from coming back.
Every 6 months he had to have surgery on that ear so they could go in and clean it out.. He has had over 30 surgerys on the ear alone.. At 2 1/2 he had to have surgery on his eye muscles his eyes would wonder up and down. He has not had any problems since with his eyes. He does where glasses for stigmatisms. At 3 he had surgery on his right hand to release his tendons.. this surgery made his hand worse. He is paralyzed on his right side, he has had braces and cast on his leg to help release his muscles… At age 5 he started to have some stomache spasms, the doctors could not figure out what was causing this, so they kept sending us home with pain meds . Finally at age 6 I took him to the ER and told them that I was not leaving untill they did something. He was always doubling over and in pain. They finally did a MRI and ultrasound on his stomach.
It ws then they found a blockage to his right kidney. He had to have emergency surgery. They went in and cut away the blockage and some of his kidney. He finally stopped having as much pain in his stomach.. At age 6 he also was finally started on regular seizure meds Topamax. He was already on ativan and Diastat for emergency use.. They had tried him on several seizures meds buth he could not take them. Topamax did help with the seizures.
By age 6 he finally got his Baha hearing device placed. I remember the day he finally go his box put on and the doctor told me to cover his good ear and whisper into his bad ear. I whispered I LOVE YOU BABY BOY and he looked at me with a smile and said I LOVE YOU TOO MOMMY
When I knew Johnny heard me say I love you and His little voice responded back I was in tears.. My baby could finally hear!!!… Then we walked out side and he looked at my mom and said nanny I hear birds and its sounds beautiful. This device only worked for about 6 months before it started causing severe migraines. So he no longer can wear his device on that ear.
At age 11 1/2 He started having some really bad abdominal pain once again. I took him to the ER and was told that he had 5 tumors in his uterer and was taken by ambulance to Maine Medical Childrens Hospital, They imformed me that it was not tumors that it was kidney stones. He had to have a neprostomy bag place in his back to help drain the tube.. We went through about 6 months with these tubes, finally we were sent to a nephrologist and was put on some meds that will help with stones. He was in and out of the hospital every few weeks for about 7 months. We were told that the seizure meds he was on was what was causing his kidney stones. Finally This past January they took him off the seizure meds. We was told since he was seizure free we no longer need them.
We moved to another State so made him appointments with new doctors. Was told that he had been misdiagnosed. I decided to get a second opinion. He has also started to show signs of possible seizures. He went seizure free from 2010 – 2014. I had made a appointment with a different Neuro and told him what the first one had said. Once the test results came in, we went in to find out results.
January 2014 Johnny started having seizures again. He was seizing all day everyday and we never knew it. His Neuro order a bunch of new test. We finally got a new MRI (last one he had done was in 2000) The doctor informed me that he does have Bilateral Open lipped Schizencephaly, Porencephaly,Seizure Disorder, Cerbral Paulsy. I knew about all except the Porecncephaly. He started Johnny on new meds and they help alot. He does still have seizures when he gets stressed or over heated.
In summer of 2014 we were able to purchase him a cool vest and a local business also bought him a back up. This way he can go outside and play.
Since getting the seizures taken care of he is doing great. He is now 16 years old and a Junior in high school. When we moved to Louisiana he had some IQ testing done. He had always been in special needs classes. (which i faught and hated) I always asked please test him, I know he is smart. Well finally Lousisiana did. He scored so high that he is now in regular classes. He just finished his first year with A’s and B’s. He wants to go to college and be a movie director.
I will tell you all this. when he was 3 1/2 he was trying to walk and just couldnt do it alone without falling. My mother in law took his shoes, and pacifier to a church in Florida and had them prayed on She came home and put those shoes on him and with minutes he was walking by his self.. We was told that he would never walk, talk or do anything. He does it all. I believe that he does do everything because of God.. Prayer is everything.. Remember the doctors told us by the way his MRI looked that he would pretty much be a vegetable and would die by three years old.
Thanks for reading our story…

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