JOURNEY WITH JONAH

Freedom

I know its been a while….here’s what’s been going on?

Feeding Tube

Way back on May 11th Jonah had his g-tube surgically removed then replaced with a smaller button-type device called a Mini-One.  Basically how this works is the hole in Jonah’s belly now has a button-like device that has a balloon on the other end that is filled with water which holds it in place.  We then use a couple of different attachments to get the food into his belly.  It is much smaller than before as you can see from the pictures.  This little contraption has been an incredible blessing for our sanity and Jonah’s health and thrivability. (yes I made this word up)

Old feeding tube

New Feeding Tube

Oxygen Saturation

Now to our ‘other’ current major issue…his lungs and oxygen saturation levels.  On June 26th at Jonah’s most recent  appointment with his Pulmonologist  Jonah was able to keep his O2 levels up so they decided it was time to take Jonah off of oxygen.  Hallelujah is all that I can say!  It seems like forever that we’ve been hauling that oxygen tank around.  Actually it’s been since Jan 18th when he was released from the hospital for RSV so a little over 5 months.  Jonah is one happy camper now…no 7 foot cord to keep hindering him now; he loves the freedom to play and roam around…his mode of transportation is rolling and of course being carried!

We aren’t out of the woods on this one but this was a huge hurdle indeed.  He hasn’t been sick in months either which has given him the time he’s needed to heal.

Here he is…with no oxygen tube protruding from his nostrils:

 What a good lookin’ boy ‘eh!

With his new freedom he is starting to get stronger and is moving around a lot.  He isn’t close to crawling yet, but hopefully will be sitting up soon.  He is such a joy!  He claps and gives high fives too, always with a huge smile on his face.

Like this one:

Woops wrong pic…I just think this picture is hilarious… that’s Zeke getting the news he needs a bath!

Jonah’s Service Coordinator

If I were to put together a list of doctors and therapists and others whom we have met because of Jonah already it would be in the hundreds.  Today we bid farewell to one of the first of these that we met through the NC Infant-Toddler Program, his Service Coordinator Sarah.  She is the one who has kept detailed records of Jonah’s life up until today, from his surgeries to coordinating in home therapy and everything in between.  Today she passed that torch to another with Jonah turning 1 recently, as she only stays with the babies through there first year.  We could clearly tell that she cared for Jonah as if he were her own and we are forever grateful for her contribution in Jonah’s life.  Here’s a photo of Jonah and Sarah from today:

Jonah is definitely still keeping us busy, but we can see a light at the end of the tunnel.  Praise God for His grace, mercy and patience He has had with us as we continue to walk this  journey out in faith. ~ D

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2 comments on “Freedom

  1. Michelle Parker
    July 11, 2012

    D and family
    So good to hear Jonah is free of extra tubes and oxygen what a great big step for all of you. Now is the time to enjoy that big smile and the rest of the summer with freedom and God’s grace beside you Say hi to your MOM from me I am so thankful to hear all about Jonah he is so cute and happy in the pictures
    Your cousin, Michelle

  2. D
    July 11, 2012

    Hey Michelle,
    It is good to hear from you, I appreciate that you are keeping up with Jonah. I will let my Mom know that I heard from you!
    God bless you!
    Dan

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This entry was posted on July 11, 2012 by in Feeding Tube, Jonah, Lungs.

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