Haven’t had anything new to post recently, but I will take a few minutes to give some quick updates:
Nothing new to report on the vitamin D front. Still trying to figure out how to get to someone who can/will help us. I need to call the pain doc and let him know that I am not happy with the treatment Em is getting for the vit D deficiency. Maybe he will go along and treat it himself. Or, better yet, agree that Em needs to see an endocrinologist. I am just sick of the whole thing, to be honest. It should not be this hard to treat this deficiency properly. Obviously, we have seen no improvements of her symptoms on the 2,000 iu of vitamin D that she is on.
I need to find out which pediatricians are available to switch to – because we are not going back to the old one. I am concerned that we are going to be stuck staying in the same practice, in which case, I don’t feel like I can burn bridges by expressing my opinion to the doctor we have fired. After seeing a number of doctors in this practice over the years, I can’t say that I would be sad to leave – I just don’t know if there are any other pediatricians our insurance covers. There has been one that we liked when we saw her one time that we couldn’t get in to see our own doctor – but I am not holding my breath that she will be awesome. Better than what we had might be as good as it gets.
One other course of action that we are going to follow up on is the idea of a physiatrist – also known as a physical medicine doctor or a rehabilitation doctor. A thread on Inspire reminded me of this option and I think it is definitely worth looking into. Andrew says there is a new one at Reid and we need to find out if he would even take Emily as a patient. Then, of course, it would be a matter of discovering if he could be a positive addition to our medical team. At least it is another hopeful possibility until we know differently.
We are still waiting to hear whether insurance will approve the scooter that has been ordered for Em. It will be 3 weeks Thursday that we met with the wheelchair rep and decided to order the scooter – hopefully we will hear something soon. I am hoping that it is approved soon and that it is in her possession for Halloween. She is planning on going trick or treating with homeschooling friends and I would LOVE it if she had the scooter to ride instead of being pushed in her chair. Time is running out though, so again, just waiting to hear something.
Also still waiting to have the GI appointment scheduled and I am not happy about that. I have now tried to schedule it 3 times – the first time, they scheduled it wrong and that mistake was discovered only because I called about another appointment. I was transferred to the only person who could make the appointment – she never returned my call. I called again and still have not heard from her. My next step is to throw this back to Dr. Neilson and let them push it through.
So, in summary:
- On our own to find answers. AGAIN.
- Waiting, waiting, waiting.
- Not a happy camper about any of it.
Pretty much the usual, in other words.