We have begun the myriad of doctor's appointments for Freya's PWS. Three days in San Francisco for a total of 2 hours in doctor appointments; long enough for them to tell us it will be 5 months before she can begin the growth hormone treatment. I could go into the details of why we have to wait (approval from insurance) and what hurdles need to be jumped (the necessity of a sleep study) in order for this very effective treatment to happen. But honestly, that is not why I am writing this blog. I am writing this blog because I am frustrated and confused. I feel humbled and overwhelmed navigating these twists and turns of the bureaucracy of Western Medicine. Many parents I am in contact with already have their babies on GH. They are in physical and occupational therapy. They also travel from far and wide to see a special doctor in Florida. Should we be doing more? Should I have thrown a fit when the Regional Center said it would be a month before she could be evaluated for her therapies? Should I have demanded they get her on the GH faster? What can I do?
There is part of me that believes, with our sincere devotion and dedication to our daughter and her needs, we can successfully handle her syndrome. On these days I feel hopeful. But the evidence is there. Growth hormones have a strong, positive affect on people with PW. And the doctors, who agree it is the best treatment, can do no better than 5 months. So today I feel stuck; and confused, worried that I am missing something or not fighting hard enough. Today I question my ability in being a successful advocate for Freya.
But I remind myself Freya is only 4 months old. Once she begins GH treatment she will be getting a shot every night. And, we found out, she will most likely have to wear a mask when she sleeps. For now she is a healthy, happy, albeit small and weak, baby. But she is improving and growing at her pace. She has even begun to laugh. Perhaps it is a blessing that she will not be whisked too quickly into a world of needles and machines.