MRI Day!

I write this from the busy hallways and waiting rooms of Nemours, where Jack is currently under anesthesia for an MRI to make sure that the tumor is not reemerging. This is just a regular procedure, no need to worry, but I can’t help but worry anyway. This is the one thing that keeps me up at night, the one thing I have nightmares about.

We also had a hearing screening this morning which showed fluid buildup behind the eardrum, which explains the three ear infections he’s had in the past two months. The screening was interesting- you sit with your child in a dimly lit studio room, which has speakers with light-up boxes to the left and right. IF the child looks to the proper side when he hears a sound, the box lights up and a puppet does a little dance. Puppets on a table straight ahead draw the attention forward between trials. Jack didn’t respond to anything but the loudest noises on either side, which tipped us off to a larger problem. Thankfully, we were able to get an appointment on the same day for the ear nose and throat specialists, so it’s time to talk about ear tubes with them later this afternoon.

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I had promised an update on Jack’s experiences with eStim and the UD Pediatric Mobility lab. We had a great time at the lab last week, met with Dr. Michelle Lobo, Physical Therapy researcher, who met Jack and talked to Jack’s Auntie Meghann and I about the research that is ongoing there, and how Jack may fit in. Because the lab has a very flexible schedule, it is not out of the realm of possibility for us to bring Jack at the end of the work day, which is super exciting. The specific study Jack may participate in and deals with providing him with a harness and allowing him to practice moving and transitioning from lying down to sitting up, etc. Some groundwork will need to be done before we can get started; Jack will have to be formally enrolled in the study, so I’ll update again when we actually get started.

There isn’t much yet to report on eStim. An odd set of coincidences pointed me to a specific therapist who works out of the Christiana system, and as it turns out, she works with children directly within Jack’s daycare. I am still waiting on a call back, but with any luck, we’ll hear about that soon.

Just waiting now for our little man to come out of anesthesia following his MRI.. then it will be a waiting game for a few days until we hear about the results. God willing, there will be nothing much to report!

I’ll be posting a video shortly. My words don’t really do justice to how well Jack is doing. He’s loving life and having a great time being 13 months old!!

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7 thoughts on “MRI Day!

  1. Sandy Lonie

    Awesome news about Jack. Our Jake had tubes done and what a difference they made. Prayers and thanks still being sent upwards. Hugs to you all,
    Sandy

  2. rudisell

    Meg, I’m so pleased to hear more about Jack’s progress and see that great picture of him. Sending positive thoughts your way!

  3. Karen

    Good luck, Jack! It is so good to see you enjoying yourself on the swing. ❤ – Karen and Nora

  4. Jill Gaffey

    Dear Meg, I am so hopeful about the therapies that you are investigating! Aren’t you glad to be living in this age and not 20 years ago when things like this were not on anyone’s radar? Regarding ear tubes, I have both personal (David) and professional experience with them so if you would like to discuss it with me, call anytime. Jack looks great! Can’t wait to see the video!
    Love, Aunt Jill

  5. Maggie

    Thanks for the update and I will be sending good thoughts your way for some good test results.

  6. Darlene

    Great update, Meg. I am so excited for Jack! I will also be praying about his MRI results — and for Jack’s new opportunities.

  7. Ruth Gaffey

    Thanks for the update Hoping to hear good news tonight after you talk to ent’s At Nemours I was worrying about him when I was there last because he wasn’t responding to his name the way he had been – poor little guy couldn’t hear! So happy he made it to the park! Can’t wait to hear about it. But I really can’t wait to hold him – and his brother! Xxxx mom

    Sent from my iPhone

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