Life with CP

A family's story living with cerebral palsy in Chicago

Life with CP - A family's story living with cerebral palsy in Chicago

About Us

My name is Natalie and I started this blog to raise awareness about Cerebral Palsy.  My family consists of myself, my husband Mert, and our son Jacob.   Our hopes for this blog is that is helps families who are facing cerebral palsy themselves, or people who are researching the topic.

    Mert and I have been married for almost 5 years. We met on (gasp!) Match.com and after a few months of dating, decided to get married.  We were both family minded and knew we wanted a few children. I moved into the actual city of Chicago from the suburbs to join Mert .  I love our neighborhood and the fact that we can go walking and there is always something going on.  We live a mile away from The Lincoln Park Zoo and try to walk there whenever we can.

 

    We waited a few years until having Jacob.  Thinking about it now, I wish we didn’t wait. It’s the kind of thing where you just take a deep breath and dive right in.  Our fears were the same as any young couple starting their life- Would we have enough money? Would we have enough time to devote to a little baby?  Could we really both work full time and put him in daycare?

       I had what could be described as a pretty normal pregnancy, that is up until 32 weeks of gestation.  I woke up one morning not “feeling well”, up until my water broke that night.  What a terrifying time for us- we were 2 months early!  I delivered little baby boy at 9:00 then next morning.  It was like in the movies, when something is wrong they just whisk the baby away… I missed what was the first of many mama milestones that most women get, holding your newborn baby. I didn’t even know what he looked like.  I half joked with Mert to count the fingers and toes but was so scared when I heard the doctor report that his ring and middle fingers on both hands were fused together. This is called syndactyly.  Jacob had surgery last October and it looks like there was little or no nerve damage to his fingers.  His left hand was more affected so after surgery those fingers and not exactly straight, but besides the scars, you would never know! Amazing!

 

        Jacob spent a month in the NICU of the hospital.  He weighed a little less than 6 pounds and looked like The King Kong of the NICU. Those babies were so tiny! Can you imagine if I carried him full term? He would have been at least 10 or 11 pounds!  Oh the ups and downs we went through. I would go twice a day there.  Once in the morning, then I would drive back to the city to get Mert and we would go back in the evening. – Everyday for a month. This truly had been the worst period in my life…. I am not comfortable with situations where I cannot control anything involved.  All we could do was wait…..

    One evening, in particular, I remember we hit an absolute low.  Mert and I took a Saturday night off, as we  were preparing for Jacob to be released from the NICU.  We went for a nice dinner, and I called to check- in. He had several apnea spells throughout the afternoon/evening.  The even had to bag him to get him breathing.  At 2 in the morning, I gathered my things to go there. The nurse was so sweet to assure me that if there was anything that I needed to know, she would call me immediately.  This gave me some reassurance to get a little sleep.  Needless to say, he was not released that weekend.

Jacob was released from the hospital after 1 month.  He came home on an apnea monitor, which we had for 4 more months.  This monitor helped us when we needed to hospitalize him when he caught RSV. Most people have no idea what that is… it is basically a cold that could be detramental to preemies.  He spent one night in the PICU.

     

   Jacob was delayed in meeting his early milestones. He was not sitting up… and HATED tummy time.  Laying down to play was his preferred position..and still is.!  We had switched pediatricians to one closer to our home and it was such a huge mistake.  While she did initiate the calls to Early Intervention, she kept telling us that what Jacob’s problem was that his heel cords were tight and would need to be lengthened. She was completely unqualified to handle our son and I can’t believe that we spent a few more months wasting our time with her and missing out on therapies.  We had a wonderful P.T. who suggested a pediatrician and he is amazing.  He is very proactive and treats all of Jacob’s needs (or referres us to other doctors.

    I’m so sad that we started this blog so late…. there is 3 years of history than this little man has..and it’s hard to sum up in one page.  But we are on the right track with our team of doctors. He is meeting his milestones… however late he may be.  The past year, we have been working so hard on speech, physical therapy, and occupational therapy. I think the biggest change in him that we have seen, is after I made the decision to stay home with him full-time.  I will try to catch up his changes over these past few years on further posts… but I am mainly focusing on our future.  There are so many challenges and accomplishments this next year that will keep up busy.  I hope you choose to follow us through them and get to know our little Jacob, as he is one special boy!

 

  *This blog is through OUR experience with Cerebral Palsy. Since there is such a wide spectrum of what they consider to be CP, there are many aspects that I haven’t or won’t discuss because we simply haven’t experienced them.  I invite anyone to share their own experiences with us- we would love to learn from you too!

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