Friday, July 13, 2012

Life at Home in the New Normal

Since we've been home it's been both wonderful and strange. There was definitely an adjustment period (it might still be going on) between the kids. Yael desperately missed Sam but is having a hard time sharing with him. Sam desperately missed Yael and can't understand why she still can't share with him if she missed him so much! No beeps or whistles, no nighttime nurse visits. (Michael keeps threatening to poke him at 12, 4, and 8 just to keep him on his toes...)

We had a visit from our home-care nurse to draw a lab and just check in. Since then, I've become a pro at flushing the IV lines.

We went to a movie (Madagascar 3) and ate a whole bag of popcorn. Friends and family alike are so happy to share in the love.

Michael and I are trying to balance our fear that "something" will happen against our desire to give Sam great experiences while he's home. Last night we were very nervous when he threw up his whole dinner....and then some. We immediately called the hospital - the nurses told us to call them directly for any concerns, which is like an amazing 24-hour hotline with incredible competence on the other end. The charge nurse assured me this was ok and helped to calm me down...and he ended up going back to bed with no more trouble. Perhaps three helpings of spaghetti and a whole bag of popcorn and whatever else he ate WAS too much.

Today we had a clinic visit. Originally we had been scheduled for a bone marrow biopsy but they decided to push it back to next week. It was so weird to go back to the hospital (clinic on the 2nd floor, HOT unit on the 5th) and see all the staff that had become like family in the 28 day stay. They answered questions and gave us a tentative return date for bone marrow biopsy, spinal tap, and the beginning of Chemo Round 2 (next Friday or Monday)...I felt a little comforted that we brought him home and didn't "break" him. It does feel a little hardto believe that we have him home...there's a sense of fragility, not in his physical presence but in the whole situation around him.

Then a quick visit with Bubbie and Bionic Zeyde (proud recipient of a new knee)...Zeyde hasn't seen Sam since his knee surgery a couple of weeks ago so he was glad to hug his grandson and share hospital stories!

Last Shabbat was spent in the hospital.
This Shabbat we are headed up to one of our favorite places on earth...OSRUI.
Sam told me how much he wishes we could spend even just one night sleeping over at Shabbat dinner will have to suffice. I know it will fill our cup to overflowing with the love that we will give and receive in the 53066 (my favorite zip code). (And giving my biggest kid a hug won't hurt either...but I'm sure he is way more excited to see his brother than his evidenced by the lack of letters I have seen in my mailbox)

Wishing you all a Shabbat as wonderful as I hope ours will be.

(I'm posting from my phone so all the pics are at the end...scenes from life at home and on the road!)


  1. Enjoy Shabbat all together at the best place on earth. xoxoxo

  2. Shababt shalom. Sending you all prayers for blessing, joy, and wholeness together!

  3. Furklempt, totally furklempt!

  4. Shabbat Shalom; that Shabbat should bring you health, and peace, and love and happiness1 All you deserve it! Enjoy the Shabbat at your lovely place and be happy together!

  5. Enjoy, and yes he probably did overeat.
    It's nice to have a chance for "normalcy."
    G-d willing refuah shleimah