Thank you - and the Good of our Appointment!

First of all, I just wanted to say THANK YOU to all of those who have left comments on my last post, and posts prior to this. I rarely respond, but I always read them. I often feel like this blog is every bit as much therapy for me as it is medical notes, or sharing to let others know they are not alone. While I would never wish Ehlers-Danlos on anyone, or on any one's child, there is so much comfort in knowing there are others out there, reading along, living this journey with Bug and I. I apologize for not responding when I probably should, but so often if I have the time and energy to write I try to do an entire post. However, it means so much to me to know you are all there cheering us on!

Now - on to the good part of our appointment last week!

Our new Orthopedist was AWESOME! He was everything I was hoping for and more. He spoke directly to Bug, got most of his information from her, used me to fill in the blanks or to verify. He is very familiar with EDS, and spoke highly of Bugs geneticist. He said the same thing that she had, that they have mutual respect for each other and often refer patients back and forth. He explained that he is the "go to" for pain that is sharp, or that continues on a regular basis. He also is the person to call if we think we need a brace or splint. Should we ever get to the point of surgery, he's also our guy.

Dr. George Phillips is his name, and he can be seen in the Sports Medicine Clinic (where we saw him) or in the pedi clinic. We are going to use him as a pediatrician to kind of "be the head of our team" and have our new patient appointment with him in June. I am SO excited to find someone who knows about EDS to be Bug's primary doctor. It's just a huge bonus that he will also be her ortho. :) Finally, we will be able to use our local doctor just for flu and colds, and have a pedi for her check-ups and other issues that in the past I have had a hard time deciding on who to call or how concerned to be. I am hoping and praying that this will lift a huge burden from me and help Bug get the care that she really needs, even if it's just because he knows who to send us to and when.

The other stuff I learned was that our PT looks to be long-term. He said that it's great we are going down to weekly visits, but to plan on that for awhile. Then we'll drop to every other week, then once a month, then every other month. He said right off the bat "let me guess, she's made progress but very slowly". Exactly! It was great not having to explain that! He said that is normal for EDS, and it doesn't surprise him at all the kinds of problems that Bug is having. He also wasn't surprised that it was hips last year, then ankles and knees now. He expects that as she grows she will have more problems. He didn't make a big deal about it, but he was matter-of-fact. Again, it was such a relief to hear someone talk so openly and honestly without trying to shield us from "bad news". I can handle knowing what to expect, I cannot handle the unknown. I can always hope for better, and work to keep things from going wrong. How can you do that if you don't have any idea what is likely to happen? So - he pretty much said keep up the PT, don't expect to be done with it soon, and keep a long-term PT plan going to help catch future problems.

In addition to that, Bug will be getting a new lace-up brace for her right ankle. This will be a long-term thing, although I don't know how long-term. Somehow we didn't talk about that, so I need to ask when I see him as her pedi. He did say that he was able to feel the problems in both ankles with his fingers. Weird - I didn't know you could do that. So, Bug will be getting a new brace sometime soon and she is aware it will be long-term. (I have another post on the brace too)

So - I cannot say enough good things about our new Doctor. He had a great bedside manner, knew a lot about Ehlers-Danlos Syndrome, was thoughtful and honest. Bug adored him, so what more can I ask?


elise said...

HOORAY!!!! Such great news for both of you.
And no worries about responding to us, at least in my opinion. It's lovely to be able to leave notes for you and, no, you are never alone.

Sickly Florida Girl said...

I am so happy that things seem to be looken up for you and little Bug !! I know how hard it is to deal with some of these doctors out there when they don't know anything about eds and what or how to treat us..

i am so so happy for you both.