Tuesday, April 21, 2009

Countdown to Surgery

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!

Sunday, April 19, 2009

Not Charlie Too!

It's been a tiring week and I'm not sure why... I think the stress of all we've been through and what lies ahead may be getting to us.

Had a scare on Monday, when Hank's brother, 5-year old Charlie woke up with a small rash on the left side of his face. Didn't think much of it, but when I picked him up from school, the rash was a lot bigger!

Flash back to when Hank was 5... red rash on the left side of his face...the start of his symptoms...

No...it couldn't be happening to Charlie too, could it?! I took him to the doctor who thought it was probably a bug bite. "Of course it is," I thought to myself..."It can't be Parry Romberg's...that would be too much!" And as the doctor was telling me to just put cold compresses on his face, I found myself blurting out (all in one breath), "Charlie's brother has Parry Romberg Syndrome and it started when he was 5 and the first symptom was a rash on the left side of his face that looked JUST LIKE THIS!" The doctor's eyes got big as she gaped at me. And finally she said, "well, I can see why you would be very concerned...don't worry, we will keep a close eye on this, but I really do think it is just a bug bite." I wonder how familiar she is with Parry Romberg's? Regardless, she was right, for the redness was gone the next day. Whew! But I will still be staring at Charlie's cheek for a long time...

We are working on opening a trust account at our local bank for Hank. We thought it would be easy, just go down and open one. Not so. Jeff talked to a lawyer who said he would do it for $1,500. I'm thinking that if we had $1,500, we probably wouldn't need a trust account! But, lucky for us, I have a friend who is an attorney who will do it for free. So keep your fingers crossed that we get this done this week and then can move forward with fundraisers and donations!

Monday, April 13, 2009

Surgery Dates Confirmed!

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!

Tuesday, April 7, 2009

The Waiting Game

It's Spring Break, and Hank is in great spirits. So happy to be off of school and able to hang out in his pajamas all day! It's the simple things...

Last week, we sent out an email to all of our friends and family members, giving them an update on Hank's appointment in New York. For a lot of them, this was the first they heard of Hank's battle with Parry Romberg Sydrome. Not the way I wanted to tell people, but most effective.
I also attached a link to this blog, which I think helps explain a lot.

I wasn't sure what to expect. We have kept it secret for so long and then to just tell everyone...! There have been different reactions... For the most part, we have had an outpouring of prayers, offers to help with fundraising, childcare, moral support and best of all...love for Hank. Of course, I haven't let him read any of the stuff I post here...he may know he has PRS, but he doesn't need to know how I feel about it! But he knows he is loved and he knows people care about him!

And there are others...who out of a loss for words, say nothing. And that's OK, we all deal with these things in our own way...but, I'm not going to lie... having a child with an illness can be an extremely lonely time for the parents. Left to stress about the future, not knowing if the treatment route you choose will work, and although you have people "there" for you, it's impossible to understand fully, the all-consuming stress that takes over your being. And then add the financial stress to it... it's overwhelming!

But we just try to move forward, secure in the knowledge that when we find ourselves in need, we find out just how wonderful our family and friends are. And how many people touch our lives in so many ways!

We are trying to confirm all the dates for our next trip to NY and for Hank's surgery. How many days prior to surgery do we need to be there? What day is pre-op testing? What day will Hank be released from the hospital? And what day can we come home? It's the waiting that I hate. We've built so much momentum getting to New York only to find ourselves crashing to a standstill. But we have promises from all parties involved to have the answers this week!

And so we wait...