Dear All,
So sorry for the long
wait for a posting. Things have been a bit crazed since our arrival home last week. Justin
is currently in Las Vegas for some specialty training with an OB/GYN Doctor. He said today that he actually
found some great New York pizza! We are anxiously waiting until he comes home on Friday. Daniel and I miss
him so much!
So much has happened
in the last few months! Justin applied for a job in the SLC area. He was offered the
position but in the end we decided to stay in Wendover. The insurance was not as adequate for Daniel’s
need and the state waiver program (similar to Katie Beckett Waiver program in Nevada) has a waiting list that is years long.
Basically, since Daniel is not trached and vented then he will probably never clear their wait list. While
we wanted to be a bit closer to the hospital in case of emergencies, we know that we can get there safely with either Wendover
Ambulance or LifeFlight. Justin signed on for another year here in West Wendover and that will give us
time to decide what the next move for our family will be.
Last week we went on our second trip to the Dominican Republic.
The trip was long and as always, had a few obstacles. Upon arrival at the airport Daniel began to
sound congested and was desaturating (oxygen levels). This was the first time that this had happened since
his hospitalizations. Marilyn, our WONDERFUL Delta agent/friend/lifesaver, quickly found us a quite place
to try to cough assist Daniel. After a few rounds we knew that we were not going to fly that night.
Marilyn told us that she would help us change the reservations when and if we were ready to go. We
ended up staying at the University Guest house for two nights so that we could be close to the hospital if needed.
Daniel ended up looking better the next day and well the day after. We finally flew out on Thursday
night, October 25th and arrived in Santo Domingo on Friday afternoon. Delta was so wonderful to us.
They gave us extra time to board, even before pre-boarding, to set up Daniels equipment. This trip
Daniel used his bi-pap on all of the flights. The crew helped us on and off the plane, carted our gear
and passed us off to loving Delta people at each place we landed. We learned on this trip to inform TSA
that our child is handicapped and they took him and Justin to a different area to screen Daniel in the stroller, rather than
taking him out. TSA also helped me get all of our gear through the machines, safely to the other end!
Every time we take this trip down we think that there is no possible way we can ever return.
Once we arrive in Santo Domingo we have two hour drive (I call it the “I need to be medicated drive”) to
Casa Del Mar. The drive is long and hot. Once we are settled and go for treatment we quickly realize what
brings us back. The Dominican people are so wonderful and helpful. They are loving and
kind and always say hello when you pass. Dr. Rader and his team are no exception. They
give us hope that we will make it through this dark time. We meet other families that have returned over
and over because of remarkable success with their children’s illnesses. It is nice to be connected
to others that actually know how you are feeling. It was great to sit down, drink some wine and laugh and
cry about our children. I held another little boy that just held me back….different for me
and a little heartbreaking…. but I would hold him a thousand times more. Daniel met new friends
and held up his hand for one little boy in particular. He loves other children! After three rain-filled,
tropical storm days we had to depart to head home. After another 14 hours of travel we arrived safely at
Salt Lake City Monday night at midnight. Thank goodness for Hilton and those wonderful beds to greet you!!!
I have to
mention again that Delta is AWESOME, especially the crew that flew with us on the last flight. We ended
up in seats that we are not allowed to fly in but they quickly moved others and helped us to get our equipment set up.
They also ordered us a wheelchair (to transport our gear on the ground) and helped us load up. They
were so kind and loving.
All along the way we were asked about Daniel’s illness and equipment.
The immigration officer in Atlanta even asked why we only spent three nights in the DR. I explained
why we traveled there and he was amazed. Not one single person has said anything in opposition to us taking
Daniel for stem cell treatment. We knew that we could possibly get some kind of back lash because of the
controversy that surrounds stem cell treatment but not one person in our life has said anything negative. Everyone
looks at Daniel as a baby that deserves to have treatment options to choose from. We feel that everything
that we have done up to this point has gotten us to this point (with Daniel still strong) but there is
no guarantee with any of the treatment options that we’ve pursued. While we are realistically optimistic
we know that every child is different, and there is no black and white perimeters with SMA. So
we keep doing what we have been doing (physical therapy, respiratory therapy, aqua therapy and medication therapy) and hope
we see some progress.
Daniel came home with a cold, the one that presented and hid the week before. We have managed
it here at home. Thankfully this one did not go into his chest. He is still a bit croupy
but smiles continually through it all!
Now that cold and flu season is here we have been kind of sequestered.
We find tons of stuff to keep us busy. There is a lot of PLAYING and movie watching going on!!!
Daniel is learning how to count to 10 in English and Spanish. We are learning colors, shapes
and animals. We make up songs and he is actually trying hard to sing. Daniel says Dada,
Hi and Noma (I know he means Mama). He has started belly laughing lately! WE love that!!!!
Daniel has two teeth
now and his Mimi (binky, pacifier) is his best friend. Daniel still loves Baby Einstein and Nemo.
He loves go cuddle!!!
Thank you to everyone that continue to send their love and prayers! We love the guest book
posts!!!! Please continue to keep us in your thoughts and prayers!
Much love and tons of
kisses,
Connie
