Get ready…..this
is going to be one long update. So much has happened in the last two weeks. We meant
to update sooner but we really need more hours in each of our days to catch up.
Our trip to the Dominican Republic was amazing! Everyone was so helpful…..Delta
Airlines, TSA, the general public….the whole trip went off without a hitch. We only had one snafu….Mommy
left a suitcase at the hotel but when you are in the Dominican Republic….everyone is so accommodating and everything
always works out.
Marilyn was
at the SLC airport to check us in. She is amazing! She brought Daniel all kinds of gifts
and introduced him to her friends. She helped us through security….TSA actually opened a whole lane
for us so that we could take our time. They also screened Daniel in his wheel chair so that he could stay
connected to his bi-pap. For this trip we used the bi-pap the entire time in the airport (and as always
on the plane during flight). We felt that it could cut down on risk of germs. The lay
over in Atlanta was long but it is always nice to have time to do treatment between flights. We always
go to the Crown Room and they are very accommodating. The flight to the DR energized us and gave us our
second wind. At this point we had been up over 24 hours but since it was sunny and a beautiful flight it
gave us that little umph to keep going. When we arrived at the DR there was a worker there to meet us who
hustled us through the tourist card line, immigration and customs. We were out of the airport within 10
minutes. To our great surprise our friend Andy was there to pick us up. Dr. Rader always
has great drivers (and safe) but Andy has become our friend too. (I also do not have to medicate when driving
with Andy….the Dominican drivers can tend to be scary!) For a year now Andy has been telling us
about his little farm. He has horses, rabbits, and dogs and a homemade pool and cabana. He
took us by to give us a tour…..it was so great! Justin immediately feel in love with it.
Andy has taken a small piece of dry land and made it a tropical oasis. It was so nice.
His horses and rabbits were beautiful…..his dogs seemed very playful. Justin said that this
was his favorite part of the whole trip. When we arrived at Casa Del Mar we quickly recognized old friends
from previous trips. (workers at the hotel) The staff at Casa Del Mar is so welcoming
and wonderful. We were so happy to see Reynolds and Luis (who knows and remembers that Daniel’s middle
name is the same). We made a ton of new friends…Miriam, Marisol,(who left us a special note in our room about how she
will pray for Daniel) and Maria.
Friday was treatment day. (March 28th) Treatment
went well. As before, Justin was able to put in Daniel’s IV. He is very fast and
does a great job. Daniel watched his movies the entire treatment and then fell asleep in my arms as we
waited to be discharged. Dr. Rader and his wife, Debra, were wonderful!
They are so nice and give us so much hope. He told us (as others have before) that we were chosen
to be Daniel’s parents for a reason. For some reason when he said it to us on this trip it really
meant a lot to both of us. We both feel that maybe we were supposed to go through all of this for a reason
and that maybe the reason is we need to be advocates for stem cell research and treatment. We both feel
that we will spend the rest of our lives advocating so that sick children have some hope. Justin always
walks away from his conversations with Dr. Rader with comfort. It seems that in Dr. Rader, Justin has found
a kindred soul. I sit here with tears in my eyes as I write this because Justin has not been able to feel
much hope with this whole situation. Dr. Rader gives us hope.
We only stayed three nights which was not long enough.
The hotel upgraded us to a really wonderful ocean view suite with one bedroom and a living room. Daniel
had his own room (the living room) and his own big tv to watch his movies. There were two big porches.
The weather was perfect as there was plenty of sunshine but not too humid. We did not want to come
home.
We met a wonderful family from England. They had the cutest son who quickly became Daniel’s
friend. Daniel had so much fun playing with him. I hope we stay in touch with them! They were fun!
We wish them success with their treatment!
Saturday was our pool day. Daniel loves the pool and had fun
playing with Daddy and Mommy. We also took some time to get a taxi to go over to the local fishing village.
The village is accessible by foot via the beach but we took a taxi in case we had and emergency and had to return to
the hotel with Daniel. There were lots of little booths with souvenirs….cigars, paintings and trinkets.
We walked around town and met a local painter named Jean, who has a little courtyard he works in. He also had an older
teenager named Manuel Avery that works with him, that painted a picture for us as we waited. It is so beautiful
and he is very talented. They wanted the web-address for Daniel’s website so I painted it on a canvas
board…the only thing they could find for me to leave it on. We promised to come back to see them
the next time that we are in the DR.
Sunday was our travel day home. This is always the day we
dread the most because it is incredibly long and tiring. We left the hotel at 10am. Since
we had plenty of time before our flight our driver, Luis Castillo, gave us a tour of La Romana and of San Pedro.
It was nice to see some new parts of the city. San Pedro is famous because Sammy Sosa, the famous
baseball player, was raised there. As we were driving down the street we spotted local kids playing baseball.
I asked Luis if we could stop and take a picture. The kids were especially excited when I said in
English that I wanted a picture of the future Sammy Sosa’s. The pictures turned out incredible and
are some of my favorite of the trip. As we got to the airport we noticed that I had left the suitcase at
the hotel with the bellman. We called the hotel and they sent it by taxi and it actually arrived in time
for the flight home. As I said earlier, in the Dominican Republic everything is possible. I
explained to the ticket agent that I had left the bag at the hotel and that we wanted to check in and check the bag when it
arrived (the drive from the hotel is 2 hours). I also told them that I wanted to go through security with
Justin and the baby and then come back out to get the suitcase. They normally cannot do all of this because
of passport control and such, but quickly made an exception. I have to give props to the taxi driver that
brought the suitcase because I misunderstood the bellman whom I thought told me that the fee would be $19.00 (I assumed that
they were putting it with other people coming to the airport) because the fee was $90.00 (which makes more sense) and I did
not have enough money and my wallet was in my backpack in the secured area with Justin. Thank you to Braulio
who trusted me to wire him the money and allowed me to have our suitcase. Delta quickly checked in the
bag, got me through passport control, security and immigration with time to spare.
Daniel did great on the trip
back. He was awake and playful all the way to Atlanta and then finally slept on the flight to Salt Lake
City. I was actually able to take some time for myself and have a glass of wine and watch a movie.
“August Rush” is a movie not to miss. I cried during several scenes! It
was a story about a boy trying to find his parents. It definitely left me feeling that our children choose
us as parents!
Our flight attendants were great and one named Gail fell in love with Daniel.
She was not working in our section but came to check on us several times. We met a wonderful immigration
officer in Atlanta who has a son with Duchenes. We hope to keep in touch with him and follow the progress
of his son. His son is 18, graduating from high school and planning college. Wow!!!
We finally arrived home at
1am. Thank goodness for the Airport Hilton…..They had our room all set up with Daniel’s special
roll away and some wonderful cookies and milk.
It was hard to come back to Wendover. We are
excited about going back to the DR. If we could pull it off we would probably try to move there for a year
(or two). We would give up certain everyday luxuries if Daniel could have access to more treatment.
On April 6th
there was a fundraising event in New York for Daniel at Governor’s Comedy Club. Charles from Lulu’s
bakery made the most beautiful cake. We are so touched that he took so much time to create such a masterpiece
for Daniel. Thank you so much for donating the beautiful cake! I am going to put a picture
of the cake by Daniel’s bed. He loves the ocean and fish. Thank you, thank you,
thank you!
We understand that the
event was fun and that everyone had a great time. We are so grateful to Uncle Dennis and Aunt Diane who
planned the event and for everyone that sold tickets and for all of those who purchased them. Thank you
to Joe Bronzi and his friends for a great performance. We cannot wait to see the video. Thank
you to Patty who stayed with cousin Melody so that Grandpa Lou and Grandma Joyce could attend. We love
all of you! We miss you terribly and would love to come to visit. Hopefully Daniel will
be up to traveling there soon!
Special
thanks to Uncle Richie who recently sent us a beautiful letter and to Aunt Lydia who never forgets Daniel and sends him a
card each holiday.
So sorry for the long
update….just did not want to leave anything out. Special prayers for our local Nevada State Trooper,
Nicholas Pearl, who was in an auto accident while on duty. We pray that his condition continues to improve.
Trooper Pearl is special to us because he made certain to take time to come to the fundraising yard sale for Daniel
last summer. Others told us that Trooper Pearl was so moved by Daniel’s story in the paper and wanted
to come contribute to his fund. For anyone that wants to donate to an account set up for his family please
contact KeyBank in Wendover, Utah.
Also, special prayers for the Johnson Family who continue to struggle with the system to
take little Owen home. We think of you all everyday!
Many Kisses from Daniel,
Connie
