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Highs and Lows

 Good news first. Paxton had a swallow study today and now is allowed to drink thin liquids! He’s been so thirsty and hated that he couldn’t drink anything. This gets us one step closer to getting the feeding tube out. 

Pax was unable to participate in any therapies today due to a migraine. Poor kiddo was nauseous, light sensitive, and had pretty bad pain on the left side of his head. It was concerning when he pointed to the spot of the brain bleed to show us where the pain was today. They kept the monitors on and watched his vitals very closely. He didn’t have any neurological changes so the doctors were comfortable treating it as a migraine and not needing any imaging right now. He’s feeling better tonight, hoping he gets a good night of rest.

We had our first meeting with his team. We do this every 2 weeks to get updates on progress. Brandon was able to join via Zoom. Everyone is thrilled with his progress but know he has a long way to go still. They gave us a possible discharge date for the first time, February 8th. This is a moving target and could be less or more just depending on progress. When we do go home he will need OT, speech, and PT on an out patient basis. We will also have follow up visits here in Denver. Also in this meeting they discussed starting the school group next week. They have a teacher who comes in daily to do coursework with the kids. He is beyond excited to be doing schoolwork.

Bray and Pax played together online tonight. I love to hear their giggles. They miss each other a lot. I hope the weather stays decent so we can have some outside visits with Bray next week.

Fingers crossed Pax gets some good rest and is feeling better in the morning. Thanks for the continued love and support.

Janell

Comments

  1. UnknownDecember 14, 2021 at 11:17 PM

    So sorry for Paxton's pain. ? The headaches? Met with 10 wonderful people tonight and we prayed for all of you. Love to all. Mom

    ReplyDelete
  2. UnknownDecember 15, 2021 at 9:55 AM

    Thinking about you Paxton. You have to get better so you can come up to Lincoln and see us. I will even take you for chicken strips at the Wheel. So is it a date? Get better buddy.

    ReplyDelete

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