I always start out
by apologizing for not updating sooner. Things for us here in Vermont have been so different.
We have a ton of services for Daniel and multiple workers that visit every week. He has also been
testing different eye-gazing systems (a computer that he can communicate with by using his eye movements) and has even gone
through his first fitting for a power chair. Other than that it has been the same old cold and flu season.
He has not had any major illnesses but a few colds. We have been pretty isolated but it is worth
it for him not to be sick.
Justin has been working
for the Ludlow Health Center which is located about 20 miles north of us near Okemo Ski Area. He also does
some per-diem shifts in the Emergency Department here in Springfield. He found that by going back to family
health that we would have more flexibility to take Daniel out of town for stem cell treatments.
We are currently looking for a rental home in Ludlow. It has been
a challenge. It is definitely a ski town that really relies on “winter” season for income.
Ludlow reminds me of Durango, only smaller. Rentals are more expensive there but we would like for
Justin to have more time with the baby on a daily basis. I think it is also nice to live in the community
where you work. Our biggest problem with finding a home here in Vermont is that there is not an abundant
amount of homes with two bedrooms on the main level. Daniel only weighs 25lbs but we just do not want to
add any risk of dropping him. I am confident that we will find something this week. We
really need to be out of the house we are in by May so that the owners can put it on the market. This is
a remarkable house, perfect because it is handicapped accessible but we simply cannot afford to buy it. The
owner’s, John and Corky, have been so sweet and loving to us. We will never be able to express our
gratitude to them for letting us live here through the winter.
Did
you guys know that there are actually 5 seasons in Vermont? Fall, Winter, Summer, Spring and MUD season.
I have never seen so much mud in my life and it is challenging (but fun) to get up our road in my mini-van.
We go back to the Dominican Republic (DR)
on the 18th of April. We are making ourselves stay the entire week. We need
the family time together. The DR has become such a huge part of Daniel’s life….not just the
treatment but the sun, water and the wonderful friends we have made there. We are excited to go!!!
Daniel continues to do well. He is so tall and measures 34 inches.
He looks like a little boy now…..my baby is growing up. I still love to sit in the recliner
and hold him on my chest like I did when he was an infant. He is very vocal and hums “Winnie the
Pooh” . Daniel does not say many words clearly but can says Dada most often and
when he feel sick he only wants Mama. We can tell when he is saying Grandma, Grandpa and Grannie because
he uses different pitches. He still says Abbee pretty clearly and now has learned how to almost say Heather.
Heather is his 16 year-old cousin who lives 45 minutes away. She has come up twice to help me with
him. He also loves Melody, Heather’s 10 year old sister. Dad says he is a “chick
magnet”!!!!!
We miss the west, we miss
our friends and we miss the sun. Weather is getting better here and the sun has been out a lot the last
few weeks. We miss sitting on the porch with our friends in Wendover. We actually miss
Wendover….it grows on you.
We are
so excited about what life will like over the next few years here. We saw a Frontline special that basically
told us that we left Nevada in the nick of time. It is our understanding that they are even going to cut
“well children” programs, which does not make much sense to me as a social worker. I have posted
it on my Facebook page and I encourage everyone to watch. I am also going to post the actual “Stem
Cell Enhancement Act of 2009” on our web site. There is still so much misunderstanding surrounding
the bill and what it actually allows. We are so close to a cure with SMA! Please
read and share every bit of information about this disease. I also posted a wonderful video that MJ “The
SMA Queen” made for one of her college classes. MJ is a type one young lady who goes to school and
builds web sites for other SMA children. She also has a wonderful blanket project. I
cried for 35 minutes yesterday after watching the video. Our children are so full of life and beautiful.
I cried and then went and held Daniel for over an hour!
Emotionally, things have been hard for me lately. For those
of you that know me….that is a bit unusual. I love every minute with Daniel but have started to
fear the future. I know that it is normal but feel as if I need to create a project this summer to combat
those fears. We will see how it all plays out!
Thank you to our family and friends for all of the
love and support! We miss and love you all so much! Kisses from Daniel to everyone!
