Ten weeks until we are back in New York for Hank's surgery. Time is flying! Hank talked about the trip and the surgery the other day. He is looking forward to the trip and understands about the surgery, but the poor little guy has no idea what the recovery will be like!
Looks like I will be out there for a week, by myself with Hank. Jeff is anticipating the real estate market to pick up in June, when banks start releasing foreclosures for sale. Which means Jeff will be crazy-busy! And that's good...we NEED Jeff to be busy, but bad timing to be away for two weeks.
Right now we are thinking that just Hank and I will fly out on the Sunday before the surgery and going through the pre-op stuff and maybe some sight-seeing fun on our own. And then Jeff can fly in for the surgery, and a few days of recovery before flying home. That will leave me with about 4 days (I hope...no complications!) of taking care of Hank by myself, as he recovers. Hoping he will feel good enough to get out and go to the store or something...
Not thrilled about being in New York by myself, but I am glad we got the chance to go in March, and at least I know the lay of the land. But I am still hoping a friend will be able to join us for the first part of the stay. (anyone?)
Processing the paper work for establishing a trust fund for Hank. Looks like we are two weeks away. I thought we were doing a non-profit, but that will come later. Right now we just need to get the trust done. I would really like to have a non-profit that can help other families who find themselves where we are now and need to get to NY for this surgery! Guess I will just get us through it first and then look at helping others. We will have another minor surgery (touch-up) 6 months after this one. I think we are going to be quite familiar with NY when this is all said and done!
In the meantime, my sisters and friends here and on the Central Coast are working on fundraisers for Hank. Can't believe that this is where we are...that we need fundraisers, that our child has a rare illness, and that we will have to leave our little ones behind again as we go through the surgery... I know God has a plan...this certainly is not MY plan...and so we keep our faith that everything will be alright.
Can't thank enough, those who are walking beside us as we go through this. The love and support for Hank and the rest of the family is overwhelming. We aren't used to having to ask...this isn't easy and we appreciate those who are helping to take some of the burden from us!
On October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.
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