Tuesday, September 22, 2015

3 Years Later...

By Joe Mata-

A quick recap...Our son, Isai, was born at 26 weeks weighing 1 lb 14 ounces and measuring 13 inches long.  He was diagnosed with a grade 3 brain bleed on the right side and a 4 on the left.  He spent almost three months in NBICU, and every day was just as the nurses said it would be...a roller coaster ride.  Some days were great, others his alarms were going crazy all day with adjustments to his breathing machines, medications, blood draws, IV's, blood transfusions...etc..  As a result of the brain bleeds, he was left with a dead spot in his brain that affects his motor skills.

Isai, now three years old, has been receiving physical and occupational therapy twice a week since he was six months old but shows no signs of neurological problems.  The therapist treat him as they would a stroke patient because Isai has weakness on his right side, especially with the use of his right hand.  He is considered a fall risk, and has been diagnosed with slight cerebral palsy.  He continues to see specialists, a Neurologist, and a Gastroenterologist but the visits are just for follow ups with regard to his treatment plan.  We have had him tested several times for speech therapy, and a year ago, he was treated for a couple of months then treatment was terminated because the therapists said he was where he should be for his age.  The second time, therapy was declined for the same reason.  We had noticed that he began to stutter and delay in initiating his first word so we requested that he be tested.  His therapy is focused on core strengthening to help him with his balance and walking, and occupational focuses on his upper body and fine motor skills to help prepare him to learn how to dress and feed himself and to help prepare him for school.

Isai is a happy and fearless boy and is quite vocal and posseses an amazing set of lungs.  He does not know that anything is wrong with him.  As far as he knows, this is life for him and he finds a way to adapt and use what he's got to do what he needs to do.  Isai loves to explore and because of his lack of fear, he finds a way to get into everything and he has even figured out how to climb onto things.  We know that as he becomes more aware of himself, he will make more of an effort to rehabilitate himself.  My wife and I do not raise him as though he is handicapped.  Instead, we encourage him to try and when we see that he is really struggling, then we will help him and show him how to do things.  It is difficult to see him at therapy but we know that we have to continue to push and encourage him for his own well being.

Eight months ago, we welcomed our 9 lb 14 oz baby boy Diego into our family.  I can not say that it was planned or that we researched the risks of having a normal baby after our experience with isai.  We decided to leave the pregnancy in the hands of the Lord and accepted whatever fate He had in store for us.  Our pregnancy did have some difficulties.  It was discovered that my wife had a short cervix so the doctor had to stitch the cervix shut to give us a chance of carrying to full term and my wife was on bed rest for the last four months of the pregnancy.  By the grace of God, we went to term and Diego was born without any problems that we have detected thus far.

With Isai, we were completely unprepared and alone during his time in the NBICU.  We knew nothing about what was happening and how to deal with it.  When we found POP, a whole new world opened up to us and going into the pregnancy with Diego, we were confident because we knew that we had the support and love of the POP community as well as all of the knowledge that we had gained since the birth of Isai.  We knew this time that we would chance nothing and question everything.  Yes, I'm sure I drove the nurses crazy during our emergency runs to the ER because of what we thought were contractions, but I didn't care.  We already knew what was at risk and were not going to take any chances.  My good friend Jordan told me that "We are their voices" and we have to stand up for our children.  With that always in my mind, I expected nothing but the best care for my child.

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