Sharon, the social worker, came by this morning to check on us. We talked about a lot of different things, and at the end, talked about our conversations re: when if/when we might need to consider palliative care. She said, "I talked to Dr. Rosenfeld this morning and unofficially, he said he doesn't think you guys are at that point. He's the kind of guy who would tell you." We almost peed our pants we were so happy.
Then Dr. Patel who is one of the regular cardiologists, who knows Simon really well, came by this morning. We talked about choosing not to have a transplant and then about what our other options are. He then went on to say that we were no where near needing to think about the end right now. Simon is happy, all his other systems are doing well, and we can just stay on Milrinone for months if that's what it takes. Basically, he still could get better and aside from his heart being a little bigger and his stats being a little worse, he's okay.
There is a lot of room for hope. Bring on the love, bring on the fighter energy, bring on the miracles.
Can I just say for the record, I HATE roller coasters?
11 comments:
WOW! Simon has you two practicing for his teen years :) If his spirit is this strong now ~ imagine what it will be like at 16 or 17! Look out!
Simon you are the man!!!
Congratulations on todays good news. I just had a msg from Fitch and I bet she and Bernie are doing cartwheels.
Sending much hope from sunny Florida!
love and a hug to all (that includes Roxie),
Carol, Pat and Katie
(Z and Cecelia, too!)
Go Simon! The news today is wonderful. We are friends of your Auntie Jen's in LA and have been sending you lots of love and healing ju ju.
Hope is an amazing thing. Sometimes you carry it and other times it carries you.
We are holding your family with the power of our whole hearts. Yes, indeed.
continuing to send you all love and light and faith and grace and the wish for many many more beautiful moments
love,
deb l.
oops...
signed in to look at the calender and forgot to change my user name before leaving my comment..sorry if it confused.
deb
I'm praying for wee Simon Lev and your entire family. I wish him a refua shlema, and that he'll make it through this ordeal with a miraculous ending.
I never stopped planning for the cake sampling menu for our 1st shared birthday party... I can't wait. So much love, as always. Alicia
Back for my almost daily fix on Simon and the positive outlook is great to hear. Way to go, Simon!
Love you guys, hang in there!
RP & Vidhya
In times of deep challenge I always try to find the lesson. This one has been so deep for me I haven't been able to see it for the longest time. Finally this weekend I got the grace and bounty of our extended community- the over 80 (I'm sure it's more now) independent visitors to Simon, Laura and Jaime, the people all over praying, sending light, the dinner with kind and sweet friends the night Frank and I could barely hold it together.
Ok, so I didn't really desire a conversation with my two and a half year old about fear and death, but in having to figure out how to do it...what beauty. I get to see how deeply she feels and understands. How much she loves her cousin. And I get more and more proof of how generous and beautiful is my husband's spirit. Again, not that I really wanted it this way, but we get to see how it's not just talking to say our friends are our family. All those Seders for well over a decade now- this year we said it was no longer the Fitch Sister's Seder, and that we really had to come up with another name because we have truly all become family. I didn't want proof of it this way, but I will certainly take it.
I do know that Simon's spirit is stronger than strong, and he is delighted, if not with what his body feels, with what his soul is experiencing.
I am so grateful for you all.
Jen
Sending positive and healing energy and prayers. Your love for little Simon is absolutely incredible.
Laura, Jamie and Simon,
I am thrilled that you had a great day and a great night. I'm keeping you all in my thoughts and sending giant love.
--Laura M.
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