Thursday, December 25, 2014

Fox News Story!

Adam from WHAM in Rochester did a news story on our family.  Its a lovely piece and really captured a small segment of our daily life as well as told our story nicely.  I love that you can see Sarah standing and playing.

Well we made it from Sutton West Virginia to Savannah Georgia today!  When we first started out there were no cars on the road.  It did get a little more crowed but not too bad.  However.....we could not find ANYTHING open for lunch so we ate from a gas station.  I had peanut butter crackers, a Little Debbie zebra cake and a Pepsi LOL!!!!  Thankfully the kids did eat breakfast before we left the hotel. It's really challenging with Sarah but I had brought some grits packages so I made some up for her for lunch.   But sweet Savannah had a Denny's open and we got something good tonight.


Empty roads in West Virginia

trying to get a picture of the snow on the mountains near the West Virginia/Virginia border
We always love to see this road in Charlotte North Carolina!!

And NO I was not driving!
Denny's saved the Day!


I've always wanted to stay at a Country Inn and Suites, but on road trips we go as far as we can and then we stop.  We've tried a few times to get in a Country Inn & Suites but they'd always been full.  Now I know why!  Huge rooms, clean and this one was only $84!!!   We are quite happy and only about 300 miles from far it's been 998 miles since we left Rochester.....

My plan is to try and find a glaucoma specialist who will follow Sam at home so he can be seen more often.  His corneal implant is very stable and expected to last throughout his lifetime.  However his optic nerve is showing a slight change which indicates his glaucoma pressure is up.   That's not good.  Glaucoma can rob a person of sight as the optic nerve is damaged, it will not repair itself, so it can quietly happen. 

My problem is no one wants to follow a child as complex as Sam who has a primary eye doctor in another state.  Doctors do not like to cooperate with other doctors....sad but TRUE!  I've called every pediatric office in the Central Florida area and they have refused Sam as a patient.  As you can imagine that ticks me off!!!!!   Since he will now sit for an exam so that he does not have to be put under, I may find a doctor who will see him out of curiosity.  Not many doctors see a patient like Sam.  Perhaps I can find a good adult glaucoma specialist....   We did go to the University of Miami Bascom Palmer for years for follow up but there was a big medical mistake made.  We were told years ago that his glaucoma had worsen to the point of needing a shunt.  We rushed him to Rochester and found at that time (5 years ago) that there was no issue at all with his pressure.  After that, I had no confidence in the doctors we were seeing....OH and the doctor's assistant called me as we were literally walking into the Ronald McDonald House and told me off for taking him for a second opinion!!!   Bless her heart is all I will say.....she got quite the earful LOL!  I also called her back and let her know there was no need for the surgery and we would not be coming back there!  I think they were embarrassed that they were wrong. 

People often wonder WHY do we go so far for treatment?  It is because Dr Aquevella is one of the few doctors who work with corneal implants.  We've invested a lot of time and money into insuring that Sam can keep the little bit of sight he has and we don't dare "rock the boat" at this point.  IF I do find someone who will take Sam, it will ONLY be as an observing doctor.  Should there be any questions, we'd take him to NY for any type of intervention. 

When Sam was a little baby we realized we could love him, but the only thing medically we could do to help him was to do the surgeries and be responsible  for his aftercare.  Over the years we figure we have done over 100,000 eye drops.....yep....100,000.  At six years old we were a little over 60,000 so we figure we've far exceeded it now LOL!!!   For a period of about two years, we did 44 eye drops a day and did NOT miss a drop....even if it meant to wake him up to finish the regiment of drops.  Now we only do 9 a day now....that's nothing! 

Well we hope to be home around lunch time!  I can't wait to get home.  This has been a LOOONG trip to me.  I do like the route better than any other one that we've tried over the years.  We try to avoid I-81 in Virginia, it is so busy.  Next week all of the kids are off of school and Jon gets some time off.  I'm going to enjoy being home with them.  

Well hope everyone had a wonderful Christmas.  This Christmas really made me focus on the important things and I'm thankful that we were able to take our little ones up for a check up and know exactly what is going on with them.  Hopefully next Christmas we will be home together but I've really am learning to just get as much enjoyment out of the moment and not wish that things were different when things can't be changed.  I realize I am DOING Life!  It's not a goal to get to, it's the everyday things.....

Good night all!

No comments:

Post a Comment