Well this is my first post to my Journal. Brace yourself; it is going to
be long. For today is Our Skyler's 2 birthday. I cannot believe she is
two now. Wow, where does the time go? I remember back when Kim and I
received the diagnosis that Skyler had Type I SMA and she was not long
for this earth. We had 7 months to a year, they said. Man did we
cry. But it was Skyler that snapped us back to reality. She was crying
because she was hungry and needed a diaper change. She let us know that
she would be calling the shots. LOL.
From that point forward we have let her lead us in what approach to take
with her. I am soooo glad of the time I have had with her. She has
taught me soo much about what is truly important, how to be a better
father and how to be more compassionate. It is not only me that has been
positively affected by her. I have seen many people changed that have
meet our Bing. She is truly a blessing (as are my other two children
Casey and Luke...or Lucas...as he prefers to be called). The three of
them are all one could hope for.
I find myself looking back in time during this milestone and thinking of
all the great people that have assisted us over the past few years.
Beyond the obvious family members who are there when we call, and Dr.
Bach, I think back to my first FSMA conference. I must have looked like
a lost puppy that was just pulled from his mother. (You see I was at the
conference only two weeks after Sky was diagnosed). Where by chance I
met Sally Capen. She was soo good at helping me with understanding my
options and by providing Kim with data and access to Liz. We can't thank
you guys enough. Vivian was also there and provided insight and balance
during the animated exchanges between different beliefs for type I
children. Dr. Schroth was patient with me as I waited to talk to doctor
Bach. I was scheduled to see Dr. Scroth, but really wanted to see Dr.
Bach. I remember her saying I know you want to talk to Dr. Bach, but do
you realize I too support the NIV protocol. I thought, how rude of me
not to listen to her. So I focused and we spoke at length as to what to
expect. "It is important to build a relationship with you
primary care physician, know your PICU and talk with them prior to
having to go." And the advice went on. I recall her
giving me her card and saying "if you are ever in an emergency
situation and can't get to your doctor, and you need to have a doctor
that can speak to the NIV, call this number and they will page me".
I thought that was nice, but didn't know if she meant it. Well, I filed
that card (gave it to Kim) with a note on the back. Who would have known
we would be in a situation at the local hospital where the hospital and
its staff didn't want to intubate Skyler? She was crashing hard
and often. We knew Bi-Pap wouldn't work to inflate her collapsed lung.
We were debating with the staff on what to do. Kim had initially spoken
with Dr. Bach and Tracy (who had become a very, very good friend)
but was unable to later track down Dr. Bach when we were still in the
ER, after Skyler had crashed very badly. I then asked Kim if she still
had Dr. Schroth's card. She did have it. We called and sure enough they
paged her and she called back. We spoke with her and were then cut
off. Dr. Schroth tracked us down in the MICU, where we
put her in touch with one of the doctors who was actually willing to
listen to another doctor's opinion (as we were arguing over
Skyler's bed, demanding that she be intubated). Minutes later
Skyler was intubated and resting much easier. Dr. Schroth met me
once at a conference. I was not under her care, and frankly, I may have
been a little less than courteous to her, but she called up and
explained what needed to be done and it happened. She was an incredible
advocate for our daughter, a child she had never met, but thought enough
of to make sure she got the necessary treatment to help get her well.
For that I thank you Dr Schroth.
Thanks to all the families out there in the SMA community that have
shared experiences, information on treatment and prayers. Thanks to
Holliston Pediatrics for having the vision and desire to assist us in
Sky's care. Thanks to Cisco Systems and my manager Devin Jones for their
flexibility and support over the past few years.
But now the biggest thanks of all goes out to my wife for without her,
Skyler would not be here to celebrate on her 2nd birthday.
She brought Sky back from several severe crashes during our first bout
with Sky. She stayed by Skyler's side 7x24 for the 20 days of her
hospitalization and has always been there for Skyler and her other kids
Casey, Luke and Jeff. She has managed all the health Insurance needs for
Skyler, dealt with the medical suppliers, provided doctor/nurse level
care for Sky, helped other parents that follow NIV or other roads with
their SMA children. She has been a true rock throughout this. For that I
want to say thank you Kim, I love you.