Getting through

Our entire household has been sick with Streph throat. We are all on antibiotics. We have all been pretty miserable – streph is very uncomfortable! Nathan is baring it well but struggling to eat,so he keeps getting thinner and thinner. He’s been home from school all week getting a lot of TLC. Izzy is sick too but she’s so strong, she’s been baring it with grace, going to school, playing, enjoying herself. And Gryffin, my good baby, has been a bear. Grumpy, whiney, unhappy. I’m not sure if it’s the streph, or if he’s teething, or if he’s getting a little more spoiled as he gets older. But he just wants to be held all day.

On other news, Nathan continues to do great with his Dynavox. He is answering comprehension questions, and getting better and better at telling us what he wants. Yesterday, at the end of his session with Dr. Rogers, he went to the snack button, and asked for ice cream. I told him I’d get it for him but he had to wait a little bit, but he wasn’t satisfied with that. So he kept repeating over and over again, snack, ice cream, snack, ice cream. He repeated it until I finally gave up and got it for him (soy, not dairy, ice cream from Trader Joe’s). He is so good with that device, I am so impressed by him, when I try to calibrate it to my eyes and use it, I don’t do nearly as well.

And on to some AMAZING news. After 10 months of dealing with insurance, we finally got APPROVED for a nurse!!! We have been going around and around in circles, waiting and waiting, making phone calls, pushing papers, etc for EVER. Finally at the beginning of January I said – ENOUGH, and started calling all of the parties involved EVERY DAY. You heard me right. Every day. I picked up the phone and called. 90% of the time I left messages as these people never answer. But leave messages I did, again and again, until finallly I lit a fire under everybody. And it all came to fruition as we finally have approval for 150 hours of nursing / month. I interviewed a few candidates and picked somebody that seems smart and caring. I am hoping she will help us a lot to make sure Nathan gets everything he needs. She will be the one programming the device, helping him at school, making sure he eats enough, drinks enough, gets all his meds, gets stretched every day, his breathing treatments, etc etc. I am SO excited! I will let you guys know how it’s going.

And with that, I wish you with a warm wish to have an excellent weekend!

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