So far we know that for now Samantha has an appointment set up with Dr. C in Cleveland in early November for a consult. This may or may not be moved forward. My guess is it won't be. My hope is that they won't push it back even further for some unknown reason. Dr. C, due to his expertise, is a very, very busy man who apparently gets pulled in a lot of directions. We (and her local medical team) will also need to work hard to ensure our insurance company agrees that seeing a doctor out of state is necessary. Regardless of insurance coverage, we are going to Cleveland. Hopefully they will agree to cover it since we pay them so much money each month.
Dr. Falk of the metabolic team at CHOP was on vacation this past week. However, her assistant should be calling us this week to schedule something soon rather than waiting until the currently first available appointment in the unit, which is late October. We are excited to have Dr. F (if that doesn't change and we actually get to see HER) as we have heard good things about her, and she seems to be someone who has a lot of experience with mito.
One unfortunate thing we learned this week was that the genetic tests I had previously posted about and had been so happy to have gotten out of the way back during our inpatient stay last month........
....apparently they may not have been done after all and we may have to "redraw" for them.
It's a simple blood test. Not a big deal at all in terms of testing. However, I was really anxious to get those results. The results of those tests may give us answers that would be really useful to us now, and would help decide if a biopsy is necessary. Hopefully, we can find out soon if they were done or not, and also find out when we can get them done again if necessary.
And now for a vent....you have been warned.
In the last week, I've made many phone calls, been on hold many times, and in general have talked to lots of folks who may or may not want to talk to me about my daughter and her medical needs.
As a woman who was required to talk on the phone A LOT as part of an underpaid full-time job, I can understand why someone may not always feel up to the task. (That being said, my hope is that I did not sound even as remotely annoyed as some of the people I talk to in the medical world. )
I'm sure there are many reasons why someone may seem cranky on the phone. Perhaps they are....
Having a personal crisis I know nothing about (a death of a loved one, divorce, medical condition of their own or their child?).
Flustered because the last few parents they've spoken with have been downright mean to them.
I get it. We are all human. And, we all have bad days. But, if you are someone who happens to have the unfortunate task of talking to a nice parent whose child has a progressive neurological condition, please be nice back. It doesn't cost you a thing, and may actually make my day.
Frankly, I'd rather be doing anything else than making calls like that. I hate making those calls. But, it needs to be done. And, I am one of the polite parents who says please, and thank you. I even understand that it may not be your fault that I have to wait 15 minutes on hold several times a day. I promise I won't hold it against you.
Thankfully, there are some nice people left in the world. And, a few of them actually work in medical offices. When I get a "nice" person on the phone, I am beyond thrilled. And, even if they don't or can't give me the answer I need or want, it just makes the interaction that much better. I cherish those moments more than I probably should.
So, to all of you who have been so kind to me--thank you from the bottom of my heart. I'll continue to thank you on the phone too. If you have a survey, I'll be glad to take it.
Silly vent out of the way...
Samantha continues to do so well, all things considered. She had a great night of walking/taking steps in the house the other night. She seems to still really like her brief outings in her walker outside. Our hope is that the time upright in the walker adds to her strength and stability in general. Sammy is as smiley, snuggly and sweet as ever. I hope you don't get sick of reading this (or if you talk to me regularly, me saying it), but we are so lucky to have such a great kid. Seriously folks, her smile lights up the room, and our hearts. She is nothing short of amazing. I can only hope to do right by her.
We are hoping for a good stretch of cool weather soon. When it gets above 80 degrees I don't like to take her outside too much. Usually her outside "walks" are done just before the sun sets. My vigilance seems to be working as her eyes don't look as "droopy" as they did a couple of months ago--pre hospital stay. Luckily for us, Samantha is pretty easy going and is happy to be indoors and playing or watching Sesame Street. My guess is she doesn't like to be out in the hot weather anyway. Frankly, neither do I.
Until next time,