Good news today! We have rented the apartment across the street from the hospital in NY. It is offered through an organization called "Forward Faces" and the gal I talked with was extremely helpful. It's not free, but it is about half the cost of a hotel room in Manhattan! Unfortunately, it is not available the first 4 days we are there, but at least we will have it when Hank goes in for surgery and while he recovers. What a relief!
I heard back from Dr. Siebert's nurse on our surgery dates. Hank will have pre-op testing on Monday, June 30th and the surgery will be July 2nd. So we will need to fly in to NY on June 29th and were told not to plan on going home until July 11th. So, two weeks in New York...wow! That feels like a long time... And of course there is always the risk of complications, so let's hope that we won't have to stay longer for that reason!
I spent the past week doing some spring cleaning in preparation of our garage sale this weekend. Hopefully we will raise some money to offset some costs! We have a lot of baby items to sell, and are hoping for a good turnout.
I met a new friend through the online support group. She has a daughter with Parry Romberg's who went through the same surgery Hank will have. She lives in Ireland and they made the trek to see Dr. Siebert a few years ago. This mom is terrific. I have sent her a ton of questions about what to expect when we go in for surgery...and she is telling it like it is, complete with pictures! I am so grateful. Although the situation is scary and the photos are heartbreaking (who wants to see their child bruised and bandaged after surgery?) I think it's much worse to not know what to expect. At least this way, we go into this ordeal with our eyes wide open!
My heart pounds for you all, with fear, excitement and anticipation. I am glad you found someone that can share the intimate details on what to expect and photos will help to prepare.
ReplyDeleteRegarding the garage sale, you should contact neighbors to see if they would participate in a neighborhood sale with all proceeds going to Hank (and contact the news about it & his story) - if you would want it to be that open to the public that is. Let me know when you have the account set up our family would like to help.
Hugs, Terry