Our day

I don’t seem to have much to say lately so I think I will just start writing short posts about our day, that way I can still keep everyone posted.

We’ve hit our groove lately. Nathan’s new nurse started a week ago and she is A-MAZ-ING. She’s so on top of her game, making sure Nathan takes all of his meds and supplements, eats and drinks enough during the day, and gets EVERYTHING he needs. She is with him 7 hours a day and in just one short week Nathan has gained weight, looks better hydrated, and seems happier in general.

Today Nathan had a good day at school, he was really happy and enjoyed his time with the other kids. His team worked on improving his calibration on his Dynavox and on new ways to incorporate it into the curriculum. He did great in his Medek therapy and stood really straight – we can see that his back is stronger and his hips are more stable.

Izzy ran a fever all of last night and was a mess today, very achy, tired, whiney. She wasn’t her usual rambunctious self and spent most of the day hanging on to me. I took her to Target to buy some toys for her, as I am preparing to start a program called Play Therapy with her, and she fell asleep in the Ergo baby carrier, which has never happened before.

Gryffin had a great day. We assembled his new exersaucer and he loved it. He figured out how to make it turn around in circles immediately, and even though it is not a bouncing exersaucer, he figured out how to bounce in it. Our boy is a bouncing fool. He spends most of his free awake time on the floor crawling and playing but I like having this alternative so he can be upright after he eats for a little while.

We met with the RN who manages our LVN and she was really pleased with how everything is going with the new nurse.

I was able to write in my journal today and I now have a clear vision of what I want to accomplish this year. I plan on working on my vision board in the next few days now that I know exactly what I want. I felt grateful for all of the changes that the last 12 months have brought to my life, journaling being a major one that has changed everything for me.

Anyways, today was a good day.






  1. I miss you sooo much Love u nathan

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