Monday, March 30, 2009

New York...Finally!

We've been back from New York now for a little over a week, and already it seems like it was ages ago! Can't believe we've been there and back and now we have a plan. It's such a relief and yet, now reality has set in. Our child really has a rare disease! We had to go clear across the country to find the right doctor...

The trip was all we hoped it would be! We landed in New York Monday night. Tuesday we spent adjusting to the time change, seeing the Empire State Building, Times Square and acquainting ourselves with Manhattan.

Our appointment was Wednesday morning. We were SO ready! We met with Dr. Siebert for about two hours and for the first time since Hank's diagnosis 5 months ago, we found ourselves speaking with a doctor who spoke to us with confidence and knowledge about Parry Romberg's Syndrome. What a new experience for us...and what a relief!

Dr. S. spent a long time just looking at Hank and talking to him. He really put all of us at ease. No poking, no prodding and no talking down to Hank. He told Hank that he had some slight differences in his face. That one cheek wasn't as full as the other, that his lip was a little thinner on one side, etc. (I was freaking out that he was telling him all this!) I was worried about Hank's reaction , but Dr. S. explained that he, too had a thinner lip and everyone has something different about them. He told Hank that we don't know why he has these differences but it was OK because he could fix them.

Hank seemed fine with all this and hasn't mentioned it at all. Jeff and I think that Hank has probably noticed these things in the mirror and is now relieved that someone else sees them too. That is one thing about this might not be noticeable when you are just looking at someone with PRS, but then if you see them in the mirror, the changes are obvious. It's because it is easier to see in two dimension than in three dimensions.

Dr. S. explained the surgery to us, which is essentially a tissue transfer...removing the infected tissue, replacing it with healthy tissue and healthy blood vessels. Thus changing the biology of the disease and stopping the atrophy. I asked if the atrophy could start somewhere else in the body or if it was in the blood system. He explained that it was "localized" and would not show up elsewhere.

The surgery is a 6-8 hour procedure. We are scheduled for July! Looks like Hank will miss the fourth of July festivities this year, since we will need to be in NY for almost 2 weeks. I was feeling bad for Hank, but then I remembered that he really doesn't like fireworks...too loud!

So, we have a finally have a plan! And now we start stage 2...figuring out costs...what will insurance pay for? How much will housing be? How do we leave the 2 little ones behind for 2 whole weeks? Will Jeff's business survive without him while we're gone? Lots of questions, lots to do, but I know we will figure it out!


  1. If any Mom is going to find a cure it's "YOU" All our love and prayers are with you. xoxo S

  2. Hi Terri, smart move on doing the blog. I just finished reading the history. My dad writes notes on my mom's health. Its good both for your sanity and a log of events in case you need to review. I have 3 friends in the NYC area. I will send an email for suggestions. You might be able to stay with them? What section or part of NY is the hospital in? You might try a youth hostel. Often, you can get more than 1/2 off rate than a hotel on the same block and private room. To keep us in the loop, maybe make a check list of your needs and then comment on items taken care so we can support you the best. Hanks fortunate to have 2 great caring parents. Love Keith

  3. Terri, I put you on the prayer list at church a few months ago when I heard that Hank had something wrong with him. I too believe if there is a person out there that will find a cure it will be you. You are an extermely dedicated mother, and once you have your mind set on something there's no turning back. It's the all or nothing for you. This is one of the things I have admired and loved about you since the day we meet. Please keep us posted of your needs as July draws near. I keep you and your family in my prayers daily. Love Sunday