April 12, 2003

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 2^nd 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.