Sunday, July 3, 2011

Always knew Joseph had a problem...

After asking the nurse at the NICU was Joseph taking his four ounces of formula without a problem and she said yes I had NO idea how complicated my life would become when Joseph came home. The hospital released Joseph, just two days off of oxygen and weighing only 4.4 pounds, home. The night he came home I fed him his four ounces and laid him on the bed. I stepped away for a few minutes to rinse out his bottle and when I came back he was blue and had quit breathing. I tried to revive him but I could not so after a moment of panic John told me to start CPR while he called 911. That was the most terrifying time in my life. That I was holding my child in my hands and he was going to die.

I was able to get him to start breathing again right before the ambulance arrived. I was able to do this by doing a combination of CPR and what you do for someone who is choking. I had NO idea why he had quit breathing! It was a long ordeal but in the end it was determined that Joseph was suffering from an extreme case of GERD. He was refluxing high enough to interfere with his breathing but not high enough to vomit.

During this time we also took Joseph to a pediatric neurologist. I was not ever fond of her because she just did not see Joseph the way I did. She kept telling me that Joseph will be fine and that he was making great improvements but I felt different. I knew Joseph was different and having severe problems but the medical people just did not seem to agree with me. I did not have time to fight this because I was trying to take care of three babies that had to be fed every three hours around the clock and then had to sit up 30 minutes afterwards to help prevent reflux.

The neurologist told us that Joseph's MRI (done when he was 14 months old) was fine. She said Joseph had microcephaly (small head) and had a small brain but it was ok because it was in proportion to his head. Then she said all of the parts of his brain where there so he was in good shape. It was not until a few weeks ago that I got the actual MRI report. So my husband and I have been thinking Joseph's brain was normal and then I read the report. The report said, "there was mild swelling in the subarachnoid space along with swelling in the lateral and fourth ventricles. This is consistent with global parenchymal volume loss. " Now if you are like me I had NO idea what this meant so I had to google the information.

What I found is that this is synonymous with brain or cerebral atrophy. There are lots of things that can cause this. Too numerous to mention. Brain atrophy though is something seen in people with multiple sclerosis, Alzheimer, and Parkinson Disease. It is also seen in people with cerebral palsy (CP). Now this is important to mention because the reason I pressed the neurologist to do the MRI when he was 14 months old was to look for something that would cause CP. I told her that when Joseph was first born he had his fists clenched shut for about 6 months or so and I thought I say signs of his eyes doing something called "sundowning". This is where the eyes want to look forward but then slowly rotate downwards towards the feet. Sundowning is a sign of neurological damage. Later Joseph did finally open his hands but then he twiddled his hands in front of his face and that was all he did for another 6 months. Joseph seemed to have no awareness of brother or sister much less my husband or myself.

The neurologist just kept putting me off and would not diagnose Joseph with CP. She insisted that Joseph would get better. She said he was behind because he is a preemie and then had so many set backs and surgeries. Again, on instinct, I knew she was lying. She gave Joseph the diagnosis of developmentally delay with hypotonia.

It has been 2 years basically since I have been trying to get Joseph the diagnosis of CP. Being diagnosed with developmental delay does little in getting Joseph the services, therapy, or equipment he needs. On July 1 I took Joseph to a pediatrician and showed him the MRI report, a letter Joseph's physical therapist wrote describing his motor issues, and had an autism specialists also go with me so she would tell the doctor Josephs other medical issues. This doctor actually listened to everything I had to say. We talked about Joseph and his development for about an hour. At the end the doctor said he would be comfortable in diagnosing Joseph with CP. I was floored! Finally, after 2 years and 15 doctors, a doctor listened and helped! The pediatrician was interested in Joseph, the whole person, and not just the "sick" parts of Joseph. Now my little boy has been medically diagnosed with CP, hypotonia, expressive apaxia, gross/fine motor delay, subglottal stenosis (narrowing), dysphagia, GERD, blindness and incontinence. The diagnosis of incontinence was given because Joseph is NO WHERE close to being potty trained and with the cerebral atrophy there is a high chance he may always be incontinent.

This is a HUGE victory for Joseph. Maybe now I can get help for him! : )

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