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Slow and Steady

From Kate:

Since being admitted, the mantra for Getty has been slow and steady. When we abruptly try something, Getty’s recovery seems to take a step back. I know how important routine is for Getty and once you start changing her environment she can get a little overwhelmed. Don’t get me wrong, this girl likes adventure, but the fun kind. Take Norman the gull. He didn’t fly in her face and scare her, he just calmly flew near her and hung out. Getty’s closest friends come over to talk to her in a calm voice and she reciprocates with a smile or a soft coo. She doesn’t like abrupt situations, which is not ideal staying several days in a hospital.

A hospital can be a jolt to anyone’s system, let alone a child’s. The alarms, the beeping, strangers coming in and out of the room and the relentless need to poke, monitor and assess Getty has really taken a toll on her. We have been very worried that she hasn’t been getting the rest she needed to bounce back from this sickness. So we found a solution. Operation “Get the Hell Out” commenced yesterday. 🙂

It is our nice way of saying to the staff that she needs absolute silence and rest in between breathing treatments. So the RT and the nurses bundle their care at the same time, which leaves Getty with a good two and half hours of rest. And she uses every second of it. It also gives Mark and I the chance to get in a little nap and have the reassurance that no one will bother any of us.

The staff has been very respectful of our wishes so far and we certainly appreciate it.

So as I write this Mark is passed out on a pull out bed. I have no idea how he is sleeping the way he is only to suggest that pure exhaustion has left him with his body all contorted, yet he is sleeping like a baby. 🙂 Getty is also sound asleep and getting the rest she needs for the next demanding treatment at 8pm.

Sure, we would love to go home right now. It would be amazing to be able to snuggle with her in our bed. I want her to be back in a familiar and safe environment. I know it will take time to get her where she needs to be in order to continue to thrive, but she will get there slow and steady.

I want to thank everyone for your prayers and well wishes. I think there is such power when many people are sending healing wishes. Mark and I read and re-read the comments. After Getty’s health scare, I needed to ground myself with positive words. I turned to comments made by so many of you to help me relax after such an insane few hours yesterday morning. So I thank you all so much. Knowing that people are thinking of Getty touches all of us.


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  • Lots of positive thoughts being sent your way! Thank you for taking the time during this hospital stay to keep us posted. Your blog posts mean a lot to all of us!

  • Stacey Ball says:

    Love you guys, so glad I got some time with you all today. It meant a ton for me to come :o)

  • Leslie Braun says:

    I love it! Grouping treatments to allow Getty (and family) time to rest! Glad you were able to get everyone on board with this one. Great job Kate and Mark. …Sending healing thoughts to Getty!

  • Carol says:

    Sending healing hugs to Getty and her wonderful parents. A child could have no better advocate in the healthcare system! You two ROCK!!

  • Mitzi says:

    That’s a rigorous schedule, no wonder you’re all so exhausted! Well, your sleep deprivation definitely hasnt affected your decision making skills. Getty’s got some amazing parents!

  • Soooo glad things are going smoother now. I LOVE that you are having the nurses and staff leave Getty alone completely between treatments. I’m glad they are listening to you and working with you. You might be able to ask for a bigger bed to cuddle with her. At our hospital, we signed a waiver to have a bigger bed in Ally’s room so I could be closer to her, and her sister could hang out in bed with her too.

    Sending more and more prayers and cyber (((HUGS)))
    Tina, Ally and the Krajewski Family

  • JoEl Randall says:

    A day at a time….an hour at a time….a minute at a time….bless you all. In our thoughts and prayers Miss Getty, mom, and dad…

  • Deanna Palacios says:

    Please know that I am continuing to pray for Getty. I pray for you guys to have strength in this journey. . I also pray that the doctors and staff have the wisdom and patience necessary to help care for Getty. Please take care.

  • Sarah Pesce says:

    We are thinking of and praying for Getty! My daughter got a big flower for her hair in her swag bag at the craft fair. She loves it and every time she wants to wear it we think of Getty!

  • Chris says:

    Will say a prayer for all of you tonight. Have been thinking about Getty everyday. She is such a special child. I realize that and I have barely spent any time with her. Thank you for sharing so much with all of us.

  • We have been thinking about the beautiful Getty and her amazing parents. We are sending healing and loving thoughts your way.
    Jenny, Greg, Kaleb & Levi

  • bringupbee says:

    Thank you for the update, I’m glad you are all working so hard to get her out of there. I’m thinking of you all.

  • Katie says:

    Getty takes my breath away with her beauty and strength. I love her and I have never actually met her. Kate and Mark I think both of you are absolutely amazing. I think of you all throughout the day and am sending positive energy your way. Be gentle on yourselves. xxoo

  • John, Leslie, Rachel and Sarah says:

    Mark and Kate,

    We’ve been following your updates regarding the stay at the hospital. Sorry to hear about the harrowing experience a few days ago, but we’re happy that things seem to be normalizing. Wishing Getty a smooth transition back to your home.

    – John, Leslie, Rachel and Sarah

  • Pat Scott says:

    Thank you for the update. The three of you are amazing!! Love, Pat, your neighbor

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