A long but good weekend

Although I wrote this weeks ago, I am still publishing it for the consistency to our story…


Hello 🙂

Sorry I haven’t written. Although it has been a good weekend and I have had lots of free time… hospital rooms seem to sap my inspiration. We are all so ready to go home!  We have one more night here in Boston…. one more night in a boring hospital room where we switch from looking at our phones, to the TV, to the computer, out the window, roam the halls, and then close our eyes. Somehow boredom is exhausting.

It’s strange too how normally I thrive by being around people… talking to them, getting to know their stories… but I’m finding that I am not chatty during surgery time. There are a few gems that have broken through the dullness. Dull – that’s a good word for what it feels like when your child is admitted to a hospital. Not bad for us… Jack is healthy and was a serious champ these past two weeks. We have seen him come alive – which is the best gift I could have asked for. But dull explains the rest of it. Jack is still in pain. A lot of it. We have to keep up on it. He is also frustrated. He can no longer hold his own bottle or even rub his eyes when he’s tired.

It’s really cute to watch him make the best of it though. We brought in a piano so he could bang on the keys… kept him busy for awhile. Sleeping is a bit of a challenge as well… I feel bad for him. I am up a good portion of the night helping him adjust his casts so he can sleep better. I’m hoping the length will increase from 2-3 hours at a time once the central line is out. They put it in his neck this time…. I hate the IV’s… I know it makes sense to leave it there until we leave in case they need it… it just looks uncomfortable.

That’s the thing… I know all of this “makes sense”. I know he needs the surgeries… I just don’t like it.

Want to know something I DO like though?

JACK HAS 8 FINGERS NOW! and 10 TOES! I cannot wait to see them.

I also like how Seth got to stay here in Boston with me 🙂  I like that he brings me coffee every morning and stays with me all day… whether I am happy or grumpy.

I like how Jack gets all happy to see Seth too in the mornings…  all giddy and smiley…

I like how Jack’s casts are christmasey. I can’t believe christmas is next week!  Whaat? Where did December go?

I like Boston. For as dull as I feel inside the hospital room, I feel alive as I walk the streets. The city energy is fun for a change. Plus, I don’t have my normal responsibilities which helps…. it’s nice to have a maid take the trash out. haha…

I really like Jack’s doctors. They are all very down to earth, approachable, and intelligent.

Medical update:

Jack’s MRI yesterday was good!  His hydrocephalus has decreased and looks stable since surgery. his head size has decreased 2 cm. and the pressure is no longer crucial. We will return in three months for an MRI and re-check with Dr. Warf. to determine if there has been any scarring on the brain from the procedure. The doctor is optimistic at this time as are we that he will not need a shunt – but only God really knows…


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