Jack awake and watching a StarWars movie

Saturday 10:30am

Today’s picture is a baby photo of Jack taken on a plane trip to Florida.  Throughout this time at SickKids, I’ve looked back on a lot of happy photos throughout his seven years and they always bring a smile to my face.

Yesterday was a step forward again, which was wonderful to see.  He was more alert and stayed awake for most of the morning.  Jack still has his feeding tube in but was able to eat a bit of ice cream and three french fries.  Jack was also moved to a reclining chair for a bit yesterday, which really tired him out as he can’t even hold his head up on his own yet.  Rehab is hard work!  Jack’s body has been through so much and he still has lots of drugs in him, so it will take a lot of determination on his part over the coming weeks to get up and around.  I know he can do it and can’t wait for the day when he can run down the hallway here!

The most exciting news though is that Jack has not had a single post-op seizure so far, which is incredible and hugely encouraging.  While it is still early days and he has a long ways to go, Jack’s brain has finally been able to rest from seizures since Monday – the first period of time in six years.  Prior to surgery, Jack had near constant seizure activity in his brain and his medical team described his left frontal lobe, the section that was removed, as “fried”.  So there are no guarantees that the seizures won’t return, but for today we are hopeful and the possibility of Jack being cured is seeming more and more like a reality. Having lived with a heavy heart since his diagnosis and watching Jack bravely battle seizures every day for years, I can’t even comprehend the impact of a potential cure on Jack’s life and ours.  It would be a dream come true.


12 Responses to “Jack awake and watching a StarWars movie”

  1. June says:

    This is such good news – way to go Jack. Will continue to hold fast to this outcome and pray for it to be so. June

  2. Rev. Mike says:

    Hi Jack,

    Great to hear that your feeling a wee bit better today – so, you like Star Wars too. I wonder which character you like the best.

    And, I hear you’ve also progressed to french fries – I like those too! But don’t give up on the ice-cream!

    Yours in Christ,

    Rev. Mike

  3. Anne McEachnie says:

    Jack Just know that alot of people are really concerned and praying for your
    speedie recovery, but it don’t come easy, So please, take your time and learn
    all those tricks, to outwit the sparks,
    Jodi I loved the picture from the star wars great smile that’s the one I remember.

    I know its a longhal but those of faith don’t have a easy path just a continues one.
    Thank you for sharing you strugles , my prayers are with you and Jack.

  4. Henry & Mary says:

    Way to go Jack!
    Continue to get better, even though it will take time.
    We continue to pray for you.
    Hope mom and grandma and all the other caregivers
    experience much peace and hope and rest!
    love, henry & mary

  5. Darian Wiebe says:

    How awesome to think Jack could be done with seizures.What a testament to the power of prayer.By the way see if you can get some cookies and cream ice cream.It is awesome.

  6. Jenny Walton says:

    Jodi, Jack was one of the most beautiful babies I think I have ever seen! Those happy days will be back – just look how Jack has improved since his surgery on Monday. He is doing amazingly!

  7. Diane says:

    I have goosebumps… ice cream and french fries… amazing!!! I am so excited for all of you that things are looking good.

    Keep it up, you are an inspiring family!

  8. Tamsin says:

    Hi Jodi,

    It’s Lucie’s mom from 5C here. We just got in from the hospital- heard about your blog and thought I’d check it out. So great to see Jack out of the room and going for a stroll today! Fingers crossed for more progress tomorrow.

  9. Carol says:

    I sure hope your dream of a seizure free life for Jack comes true for Jack and his family.
    Will continue to keep Jack in my prayers.

    A Fan in Oakville,

  10. Carmine Naccarato says:

    Hi Jodi,

    Encouraging news. I hope that Jack will come out of this seizure free.

  11. Jen Di Fronzo says:

    It wasnt long until Jack walked into my preschool room…after that picture!!

    See you soon Jack

    Miss Jennifer

  12. Daniel says:

    Hello Jodi,

    this is wonderful news that Jack has had no seizure activity in his brain so far. This is so exciting.
    We’ll keep praying for you all!

    Daniel and Sunny

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