Hello all... No, I wasn't kidding when I said I might be offline for a while. But I didn't realize until now how long it actually has been!
Ellie is doing very well. She still has a ways to go on her eating, but she is doing great on being able to walk and get around easily. And her emotional state seems to have taken a giant leap in the right direction. Every day she seems more and more like her old self! It has been wonderful to see her talk and giggle in a voice much more like her old one, albeit still softer. One of her vocal chords was probably beat up a little during the first intubation (if not subsequent intubations). Thankfully it is not a permanent condition, and seems to get better by the day. I keep hoping that it's just my imagination, but I have also noticed that Ellie seems to have even more difficulty hearing than she did before "the big event," as March 28th will forever be known to us. One of the antibiotics that Ellie was given is known to have potential hearing loss as a side effect, particularly when used in combination with not one, but two of the other medications she was on. I guess time will tell...
We have been trying to make arrangements for our week in Florida, and it has proven a little more difficult than we would have liked. We finally have a plan now. We were unable to secure a flight with the Corporate Angel Network due to mechanical and scheduling difficulties. We were able to use a friend's frequent flier miles to get one way tickets on a commercial airline. While we are a little hesitant to fly commercial due to germs, our doctors have assured us that Ellie's blood counts are high enough to handle it. So we fly out on Sunday. Our tentative return date is Monday, May 7 on an Angel Flight (a small aircraft that makes a couple of hops as it wings it's way to NY). And so we are all set for a wonderful week at home... almost. First we have to pack up our room at the Ronald McDonald House and find places to store our stuff for the week. John is working that out today. We have a couple of possibilities that he's tracking down. It should all fall into place.
We have had a number of requests for an adress to send cards and care packages...
The address for the Ronald McDonald House here in NY is:
Ronald McDonald House
John, Sarah, or Ellie Skees
405 East 73rd. Street
New York, NY 10021
The best address to use when sending anything to Florida is:
1000 E. First St.
Sanford, FL 32771
Please bear in mind that we will not be in NY for the coming week, and we are extremely limited for space in what we can bring back with us from Florida.
The other question that we have been asked recently has to do with our financial needs of late. I've never talked about this on the blog before because it's complicated and it has never EVER been our intent to ask for money. Thus far we have seen God provide for all of our needs in the most wonderful of ways through many of you. We have felt strongly that God would make our needs known quietly and as they come up. His timing has always been perfect. We have, however, been asked a number of times recently how we are doing, most recently on this blog. And so I feel that the time is right to give you an overview of the past 7 months as well as where things stand now. My hope as you read it is not that you will see it as a desperate plea, but rather a wonderful testimony of the provision of God in our lives.
Early on, some friends were looking for a convenient way for people to help out and so they found a way to add a "donate" button to this blog for that purpose. We also have a fund set up in Ellie's name that some have sent money towards. Others have simply sent checks directly to us. Also in the beginning days, we added a room onto our house so that Ellie would have her own room and many people gave money specifically for that. My amazing step-sister, Jenn, has taken it upon herself to instigate fund raisers that have been an incredible source of help to us! Since John made the difficult decision to remain with Ellie and me in New York, our financial situation has changed yet again. John has a lawn/landscape business, and he and his dad were able to pare down the accounts to something that his dad has been able to handle (with some help from thoughtful family and friends). Those remaining accounts allow us to keep the business going and keep our house. When the social worker at Sloan Kettering learned that our Ronald McDonald House bill was being paid through generous friends, she was able to take that over so that we would be able to use the money for our food and living expenses.
We do have insurance for Ellie that covered the medical bills that were incurred in Florida, but things now are much more complicated. It was going to be a long process to try to guarantee coverage for Ellie's medical expenses in New York before we left Florida. When we were faced with a possible surgery for Ellie as well as the fact that her disease was not responding as it should have to the standard course of treatment, we knew that Ellie needed to be at Sloan Kettering where they specialize in Neuroblastoma - so we decided to just take the leap and come. So far insurance has not agreed to pay, but also so far, we have not paid for any medical bills ourselves. The unpaid ones are just now starting to come in, but there is much more to be done in the pursuit of coverage as well as leads to pursue towards receiving financial assistance. When all is said and done (especially after 32 days in the hospital - 18 of which were in the ICU), there will almost certainly be medical bills to pay, but God has already seen fit to begin to provide... We are hoping that soon there will be a tax deductible account set up specifically for medical expenses. So far we have had to use a basic "Ellie's Fund" account, but we would love to find a way for medical expense donations to be tax deductible.
It has been such a humbling and yet wonderful experience these past months to see all of our needs - from daily expenses to unexpected needs - met WITHOUT FAIL when we need it. (Not to mention the untold "extras" - those special touches that mean not only the needs are met, but some of the wants too...the Christmas presents and other "just because" gifts... the special care packages for our children... the gift certificates for dates for John and me... and the list goes on.) Our gratitude towards all of you knows no bounds and our hearts are not heavy and anxious as we look to the future because we know without any doubt that God will truly supply all of our needs. Both John and I grew up seeing our missionary parents' needs met in the very same way, but I think that it caught us both a little by surprise after years of living by "the sweat of our brows" (ok, who am I kidding? The sweat of John's brow... I take great pains to keep myself out of any situation that requires sweat... ugh!) to see how God would take care of us so that we are able to look to the needs of our daughter.
Hopefully the next time you hear from me, we will be home with our little Ethan! I can't wait to update you on our wonderful time home... think pictures, lots of pictures! Much love to all.