Wednesday, October 1, 2008

Keep on keepin' on

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Another day here in the Annex and Shimmy's doing everything he needs to do. He's napping like a champ. Not hurling as much. Keeping his heart rate nice and low and having quick recovery after we do something that pisses him off (like changing his NG tube after it got nice and clogged today). So no big changes.

We're getting ready to go up on our calories again tomorrow morning and hoping to do it nice and slow over a couple of days so he'll have a chance to acclimate to the richer formula. He needs more calories but while he hasn't been gaining as much weight as we'd like, he's not losing any and that means that we can be gentle with the approach even as we're going to be aggressive with the plan. We'll hear about his BNP tomorrow and we've skipped an Echo so far this week.

Really, we're in for the long haul now and what Dr Patel said today rings very true. We're not looking at any big changes in his plan at this point so it's the little changes that are important now. Things like making sure he's getting enough calories, watching to see how he'll handle his first cold (which I think he is coming down with as I type), things like that.

We met a wonderful circle of women today in the waiting room. I was out eating a little lunch before taking Simon for a walk with Dianne. There were several women visiting a new patient and his Mom and we got to talking (one of them thought I looked familiar from around Oakland). We immediately had a great rapore and I said that I would bring Simon through on our way to the courtyard. 10 minutes later Shimmy was making eyes at all of them and they were blessing him and making sure that I knew that he was "going to be all right, that boy is gonna be just fine."

I think so too. Almost completely. Almost. We have a long road ahead of us but I think we are at least on it. There may be some detours. Rough spots. Pot holes. Construction ahead. Other byway metaphors...bring 'em.

It's been three, count 'em, three days in a row that I have gotten out for a good break in the afternoon thanks to the "get Laura out" team. Roxie and I even went to the beach yesterday and we were both overjoyed about it. My back is too.

The sad news is that I officially resigned from my job at Creative Arts Charter School and while I can't imagine going back to work even part time after Shimmy is out of the hospital (for at least a year) I do love working there and miss those folks and students something fierce.

We are privileged in that I can get on Jaime's health benefits and so don't have the added cost of Cobra right now. So far so good.

Thank you all again for taking the trip with our family through these peaks and valleys. It's been just amazing to have folks from near and far, recent and distant past, let us know that you're thinking of us.

-Laura

3 comments:

Justyn said...

We are so with you guys for this long, (oh please) steady haul. Many prayers and wishes for Simon and you two now and through Yom Kippur and beyond. Kim and Amira passed your house the other day and A said, "waaa, ball, woof," which, as you know, means, "I keep Simon and his whole household in my heart always." I keep wanting to schedule a visit, but we've been trading colds for what is now an eternity. Please tell us (or ask someone else to tell us) if there's anything we can do.

Stephanie said...

Dear Laura, Jaime & Simon,

Just wanted to let you know we are all still holding you deep in our hearts and prayers. We are so happy to hear Simon continues to make little steps in the right direction! We were saddened to read Laura has resigned from Creative Arts but obviously know this is the best thing for your family. We will really miss having you at CACS. L'Shanah Tova to all of you.

With love,

Stephanie, Ellen, Avidan & Chava Novogrodsky-Godt

Fresh Ground Knits said...

Yes, just keep on keepin' on. I wish there was something that I could do for you two all the way out here. I just keep on sending my love and hope that Simon just gets a little stronger everyday and that soon he'll be home with his mommies.