We are in the midst of medical appointment after medical appointment and procedure after procedure and the waiting game for results, prior authorization from insurance, and "next steps". I have been through this as a therapist with so many families. I have been on the medical end calling doctors and other providers. I have been the "go between" trying to help families understand all of what is going on, being that support system. Now I find myself in need of that support system as a parent of a newly diagnosed child.
I think Anthony and I spent this last week in relief. Relief that our prayers were finally answered and that after all the searching there are clear reasons for his slow growth and possibly for some of the behaviors we see in him. It is a week later and reality is starting to set in. Maybe for me this is partly due to the fact that we had Nathaniel's 3 year old check-up and pre-op appointment today and for about the 3rd month in a row of bi-weekly weight checks we are "holding steady" at 25 lbs, 8 ozs and 35 inches. It is so discouraging that we're just continuing in our holding pattern. We know that we have a path. We know that things will happen. That there is a lot of change ahead in our lives. We just have no idea when it will start. We have no idea how much this will impact our lives for years to come. We are still facing uncertainty. In some ways I still feel like that "go between" for the rest of my family. I am relaying and helping to explain information to my husband, parents, in-laws, grandparents, extended family, and close family friends. While they are all supportive of me as a mother, when do I just get to be his mom, to be the one to worry and carry on for him as best as I can. When do I relinquish the "go between" role. Probably never, but a mom can hope.
I have always had empathy for all of those families with whom I work. Now more than ever I understand a minuscule amount of what they are going through. We got a patient authorization form today from the company that will be supplying Nathaniel's growth hormone. I can only hope it is the next step in getting us closer to the actual start of treatment. We are still waiting on authorization from the insurance company and I am told that even with his diagnosis and test results we don't have a 100% guarantee of coverage. That bums me out so much. I don't even know where I will turn next if we are going to have to foot this bill out of pocket for the next 15-18 years. I will do whatever that needs to be done for my little man, but this is one of those hard decisions that needs to be made. I have no idea how this may affect us for years to come. Another piece of that agonizing uncertainty.
After Nathaniel's 3 year old check-up today and my knowledge of his sensory processing difficulties, I now know his doctor is on board with writing orders for service to address this. However, as an OT, I know the difficulties with having a diagnosis such as sensory processing disorder covered by insurance. This is another big decision I have to make. I have to decide how I want to approach services for him. Where I might want him to receive services. Whether or not I want to approach it from the feeding end of things (as an ADL - activity of daily living) or if we can try to create a stretch to have the services addressed related to his difficulties with change, transitions, and his rigid behaviors (which in some ways are also activities of daily living). Both are equally challenging parts of the day. Both may change as he ages and also as we start hormone replacement therapy. His appetite should increase and might improve feeding patterns. His blood glucose levels should be more stabilized and he should have fewer highs and lows which may alleviate some of our concerns. Do I wait until we start his hormone replacement therapy? Do I wait until we have the results of his sleep study (and potentially treatment/surgery for that)? Do I wait until we have the results of his MRI? Or do I shove ahead now? So many decisions that I am sure we will make soon. In many ways I would like to just see how our current course pans out since we have several appointments scheduled within the next 2 weeks and more to be scheduled based on results of some of the procedures ahead.
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