a room of our own

SO incredibly happy the PICU is behind us. For now.

The quarters were so cramped. And we didn’t really connect with our nurse.

Now at least if we don’t connect with our nurse…we have a nice big private room to find some breathing space away!

Oh and here’s your second fair warning. Trevy wriggled out of his wrap earlier today. I couldn’t help snapping some pics. Although the camera had issues finding a focus point. Some are a bit blurry. There are also some sweeter pics in the mix. Trevy looking a bit puffy but playing with his new cars. Given to him by Emma and family…who stopped by to bring us a delicious chili dinner! It was so nice to hug another IS mommy friend!

They took SO much hair! I know it’s for a good reason and all. But still…

We have to record all of Trevy’s seizures on a paper like above. You can see he had no trouble filling it up. In fact…Dr. EEG told us to only press the button if we see something outside of his norm. Which means we can sleep! Not that we will or anything…

Okay…so maybe he (see below) will!


6 thoughts on “a room of our own

  1. What a brave little guy (and his mom and dad too). It sounds like you are coping with everything so well. I am proud of you. And glad you are in a private room for a little while anyway. Nothing beats that. I think he looks great and will look even better shen the seizure monster is gone….FOR GOOD!!!!!
    Thoughts and prayers are covering you hon!!!

  2. Aw they did take a lot of hair. Note it will look odd for the next month. Then it will look odd close up for another month. Then you will find ways to cover it up for a few months. Then one day you will notice it standing up on end and it will be different for a few weeks till it gets some weight. And then very soon it will look normal again. But it's easy to take if the seizure monster is gone too. I hope he will be gone forever. I'm glad you got a private room. It's good that Jonathan is sleeping cause at some point you will be glad to do the same. Poor Trevor is all swollen. It was hard for me to see Emmas misshapen head but it got better very quickly. And trevors will too.

  3. Aww, sweet baby! Those swollen eyes were the worst for Julia during the grid phase. Reminds me of my baby. I'm so glad we said goodbye to those horrid blue benches. It seemed luxurious after coming out of the PICU that first night. 🙂 Thinking of you guys constantly. We had a few great nurses and some that were SO annoying. If you get Wafa or Chris during your stay they are wonderful. Wafa is a personal favorite of mine.

  4. I bet you are happy to be out of the PICU…being in your own room together is much better! Trevor looks sweet playing with his new cars. Only 1 more day until the big day! You all continue to be in our thoughts and prayers!

  5. I love the pics of him playing with the cars!!! I'm so glad you have the brain surgery brigade to cheer you on also & to tell you what to expect, b/c i'm at a loss on all of this. All I can say is you all are in my hearts. I just can't begin to imagine the realm of it all.

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