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Once a preemie…

March 31, 2010

(Submitted by guest blogger, Melanie – Josh’s Mom)

Today I was asked to submit some feedback for a trade magazine about the therapy Josh received from the time he was in the NICU. So I decided I would chime in to Josh’s blog and share some of the info I wrote that some may find useful.

Josh’s prematurity, unfortunately, did not end when he left the NICU. He received regular physical and occupational therapy for about six weeks while in the NICU, yet Josh’s muscle tone was so low and weak that even when he turned one, the possibility that he had mild cerebral palsy had been presented to us. I thought we had dismissed that a long time before, so however shocking it was, I kicked into high gear, found a phenomenal PT who knew how to not just stimulate Josh’s muscles but also to train me to work with him in between those three-times-weekly sessions. I remember sweating, pushing Josh like a personal trainer would, sometimes even like a drill sergeant, many times so frustrated I just wanted to give up but not letting either of us quit day in and day out until Josh finally began to show progress.

First he started pulling himself up to a stand and then side-stepping, moving around furniture while holding on, to eventually when he was two years and one month to the day he took off walking solo. A day we will remember forever!

Josh's first steps on his own! He was 2 years and two months old.

Fine motor and speech delays were also huge obstacles in Josh’s first five years of life. His frustration with eating certain foods and not being able to communicate sometimes was so great that I couldn’t control his frequent outbursts in behavior. But we didn’t give up until we found the right OT and speech therapists who were not just experts in their field but who Josh responded favorably to – a very important factor in making progress! Josh finally spoke when he was three and a half and hasn’t stopped talking since. Which is more than okay with us!

And as for his fine motor skills, what better compliment than from the President of the United States who said Josh has great handwriting when we visited President Obama in the Oval Office in February.

Who knows what could have happened if we didn’t push Josh so hard? All we know is that with the proper team of specialists and perseverance, Josh mastered, though later than most, all of the developmental milestones. We can only hope that other parents and caregivers do the same for their preemies as we did. Because even though the slightest signs of Josh’s extreme prematurity remain, all of the hard work and dedication, hope and belief in the impossible, sure paid off.

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4 Comments leave one →
  1. Rick Gallo permalink
    March 31, 2010 10:31 pm

    Melanie, I’m sure you realize and have been told this hundreds of times but here it goes again…your family is a tremendous inspiration to thousands of other families that are dealing with the challenges of severe prematurity. You are truly amazing. Thank you for sharing.

  2. April 1, 2010 7:21 am

    Way to go Josh! I know what it means to put in all that hard work. You have so much to be thankful for with such wonderful and loving parents and your little brother Alex. You are my inspiration!

    Love,
    Katelyn Hall

  3. Leslie Adams permalink
    April 1, 2010 9:00 am

    Mel,
    All of your blogs bring back such memories. I remember the therapists telling me they are not sure if Emma will ever walk or talk. I remember ALWAYS comparing her to her twin sister Sophie. Well today (April 1st) they turn 6 and I am happy to say I pushed as did you and she is a happy walking very talkative little 6 year old girl. (With lots of Kudos and Thanks to the March of Dimes). I remember all of the back and forth to the Therapy appts., the weak mscle tone etc. And she was not as preemie as Josh. So it is not the # of weeks.
    You are a true inspiration.
    Love you guys!
    Leslie and Family!

  4. April 1, 2010 11:47 am

    I needed to read this today. Thank you for the motivation to keep going!

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