Wednesday, May 23, 2012

Boston trip

So it has been a completely we awesome and exhausting three days.   Sunday we, as in Ron, Daniel and myself traveled from home, which is in Alfred, NY, to New Canaan, Ct for the first leg of our Boston trip.   That part of the trip nice and we got to see family, which is always a plus.   On Monday, we left for Boston and the first of two very long and strenuous Doctor appointments.    The whole process of coming out to Boston has been an answer to prayer, and if you don't believe in that sort of thing, then look out because this is nothing short of amazing! Ok, so I'll start at the beginning.......  Our youngest son Daniel was born with multiple disabilities, one of which was diagnosed as Moebius Syndrome.  This condition affects the craniotomy-facial nerves and many organs mid-line.  because of Moebius , Daniel can not blink or close his eyes, and the eyes themselves do not dilate or function normally.   He has had multiple corneal ulcers which have resulted in scarring on his cornea.    Because of the chronic dry eyes, his eyes constantly feel as if you are rubbing them with sand paper.    So........ Fast-forward a bit and that takes us to about two months ago.    I was doing an interview with a person from Harvard who was doing her thesis on caregivers of Moebius Syndrome.   In doing that interview, we talked about Daniels problems with his eyes and she got in touch with her Professor who happens to be the number two doctor in the country for Opthomology.   In short, he is nothing less than brilliant! Anyway, back to the story.    so it turned out Dr. Hunter emailed me and wanted to see Daniel in Boston and he suggested we see Dr. Engle as well.   So who is Dr. Engle, right?   she is another brilliant specimen of a doctor!  She is the head of Nuerology at Boston Children's and also is on the board of the NIH.   To make a long story shorterISH, she and Dr. Hunter run a specialized clinic for kids with specific craniotomy-facial disorders which Daniel qualified for.   So, after getting the approval from the insurance, which was the second miracle, the first was that we were even being  seen by Dr. Hunter, we headed to Boston.    Now fast forward to yesterday's appointment with Dr.'s Hunter and Engle.......  We got there at 12:30 and stayed for 5 hours.  Every bit of that time was with the doctors.  Another doctor from New Zealand was there as well.   It was discovered that Daniel doesn't smell, well, CAN'T smell.   His olfactory bulb is missing.  Everything else we learned was very interesting.  However the most important thing was that Dr. Hunter made a call and got us into the Boston Foundation for Sight, third miracle, so Daniel could be assessed for the possibility of wearing prosthetic lenses to keep his eyes moist so he won't lose his sight down the road.     so at 7:30this morning we were at BFS in Needham Mass waiting to see the doctor.  It turns out, Daniel is a great candidate for this prosthetic, and he was even able to get one in his eye.    so now we just need to figure out funding.  The first step is checking with insurance to see if we can get them to pay for it.  if not there are some grants that would help, but each eye will cost $5000.  Yes, per eye.  It's impossible to put a price tag on your child's health and vision so if I need to sell a kidney, then so be it.   Either way, I am thankful that we have had this opportunity and I know that the Lord answers prayers!!!!

Tuesday, May 8, 2012

It's on its way!

After feeling like it was nothing more than a dream, I am beginning to feel as if my book is actually going to become a reality. 
The process has been a great learning experience for me and something that has challenged me and for that I am grateful.  
We are in the production stage of the book being published. It's gone through the outside editing, and the submissions  processing so far.   I talked with my Marketing coordinator yesterday and I think he is going to be a wealth of knowledge and help for getting the word out there.  He gave me a bunch of ideas and I've been working on some of them today.  Notice the new blog design?  Yeah, that is thanks to Mr. Guise. 

I have run from one end of my feelings to the other regarding this whole process.  It's humbling, it's scary and it's so very exciting.  In fact the word exciting doesn't even come close to explain how I am feeling right now. 

I will keep updating this blog and my facebook as the process evolves so keep checking back.