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Joji P.
Arizona
Birth Date - December 02, 2009
Main Diagnosis - Chiari Malformation
THEME: Huddles
Biography
When Joji was born I could tell something was not right with him. Although the doctors and nurses kept telling me he was fine. His spine stuck out of his back irregularly, he could not suck hard, he limp, he kept his head to one side. At one month I asked about how he kept his neck to one side she said he just hadn't developed the ability to hold his head up. A month later the day before we moved from Phoenix to FL the doctor said he had torticollis and to do excercises.
> It took us six months to get Joji set up with insurance when we did we took him to the pediatrician at 8 months he asked if he could sit up. I told him he couldn't. I showed him how when I set him up his spine curved. He sent us to get an X Ray which showed Joji had kyphosis. He also sent us to a Neurologist for his development delays. Thankfully we were blessed with a very thorough doctor in the testing development. He ran an MRI which turned into two because the first did not work because he was only sedated, several labs, ultrasounds of his heart and kidney.
> These tests brought back that Joji had scoliosis, kyphosis, a syrinx, and pigeon chest. He got PT and got an orthopedist, neurosurgeon, geneticist, and was followed by neuro. Over time we needed to switch Joji's insurance so we had got a new Neurosurgeon who did a new MRI and found Joji had Chiari Malformation, the orthopedist said they believed the kyphosis was gone, and that the scoliosis was posturioral. The syrinx in his spine had grown. We decided at this point where we lived in Florida we were unable to take care of our children and get the treatment Joji needed so we moved back to Phoenix.
> We found a new Neurosurgeon who did a follow up MRI which found tethered cord, and the syrinx had grown extensively. He wanted to do surgery. So March 13, 2012 Joji got his first decompression. After he got very sick with a double ear infection, sinus infection, and severe constipation. They cleared up the infections and still he was very ill and on a feeding tube. We took him home two times only to go back within hours or days. Finally they did a CT, MRI, and two spinal taps, steriods. His heart rate dropped drastically and he was in the PICU for four days, when his heart started maintaining a more normal level. They wanted to see how he would do once he was home so they released him, this time he was ok to stay home.
> We went back the end of July for an MRI we were told it was full spine and brain, but turned out that it was only the brain after it was done. The doctor said we would hold off for six months and possibly not even do an MRI then. Only thing is 6 weeks later Joji began vomiting and lost leg function for 7 minutes, and became very unbalanced. We took him to the ER when they did an MRI, they found his syrinx had grown, his tethered cord was bad. They also found Joji's brain stem had a growth (they do not know what it is). They did a nerve study which they found his nerves were being blocked.
> September 24, Joji went in for a detethering of the spine, and to have a shunt placed in his syrinx. This time recovering was much quicker he had surgery Monday and Saturday he was home. He had a repeat MRI Nov 9, the syrinx has shrunk, and the tethered cord is looking good. His brain stem growth has not shrunk, but has not grown either. His pediatrician is working on getting him set up with a wheel chair as he cannot walk long distances yet and is getting too big for his stroller. So he will be set up with either a walker or a wheel chair. He is developentally delayed and speaks very little . He is being tested for seizures, autism, spd, and other psych issues. He has meltdowns where he cries, throws things, hits, bites, pulls hair, and bangs his head. He has headaches most days, foot, neck, and back pain.
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