Wednesday, September 1, 2010

Too All-Over-The-Place For a Title

My mind (and our lives) are so all over the place right now, so this post will for sure reflect that. So, I bullet-point (with just two really long bullet points apparently!):

- To Hopkins or not to Hopkins?

After Sam was "diagnosed" with hypotonia (low-tone), I immediately hit google. Sometime along the way, I learned about a hypotonia center at John Hopkins in Baltimore. I told B about it and we sort of kept it in the back of our heads as an option for later. Then, recently, someone I connected with on my mom's board wrote about taking her son to the clinic and for the first time feeling like someone -- a doctor -- was going out of his way to proactively LOOK for answers. So, B and I started thinking about it again. We did a whole lot of talking, thinking, thinking, thinking and ultimately, we decided we want to take Sam. We can afford to. (Well. . . with the generous help of grandparents!) So why not? Why not take advantage of this center of experts? The whole theory behind the clinic is to have--in one place-- working collaboratively -- a multi-disciplinarian approach to hypotonia. The geneticist that started the clinic works with a developmental pediatrician, neurologist, neuro-muscular specialist, orthopedist, etc. to make sure each child is evaluated fully and completely and that their treatment course, whether it be PT, OT, or something else -- is tailored to the individual. So, why not go? So our minds are made up. We shall go.

Then, I started the intake process, and suddenly, I feel scared. Like my tummy hurts just thinking about it.

Things are going well. Really well. Sam's doing fabulously. We skyped with her nana and papa the other night (who hadn't seen her in a few months) and they were literally BLOWN away by the things she was doing. And I can feel SO fabulous about that one minute, and seconds later, b/c I have to order medical records, or schedule an appointment, or whatever, suddenly, I'm all tummy ache and worry. Maybe that's just who I am.

The thing about taking Sam to the clinic is that (well there's two things) first, things ARE going well. We aren't taking her b/c things suddenly are bad or we are more scared or anything. We are just taking her b/c we can't really justify NOT taking advantage of this exceptional center (or what we hope turns out to be an exceptional center!). And second, well, we aren't taking her because we NEED a label, which I know is the reason for some (they WANT some official diagnosis other than hypotonia). I don't want a label just to label, and B and I are simply not interested in chasing genetic answers if it won't change the course of treatment. I think more than anything, we just want to know that we've left NO stone unturned. We don't care about (and quite frankly, won't put Sam through) tests that the results of which wouldn't change or add to Sam's treatment. But, we have to feel like we've exhausted everything else to know that we are doing the best jobs possible as her parents.

So, we've started the intake process, and its scary (well, the intake process isn't scary; its my own worry that sets in that is scary!). Can't help it. Even when things are good . . . great even . . . there are moments of worry and panic and fear. Moments I want to RUN from my desk (b/c I'm not getting anything done anyway) and go home and just sit and hug Sammie B. Watch her. Giggle with her. See the progress with my own two eyes, just to remind the crazy me that there IS progress.

- PT issues.

We've been . . . erh . . . frustrated with Sammie B's PT for awhile. She came highly recommended, and she's always been a big part of Sammie B's "Team" BUT at the same time, there are things about her that urk us to no end. She's consistently 10 -15 minutes late for every appointment, yet ends at the normal time. That's cheating Sam out of therapy time (and frankly, robbing the state of funds!). She chats to us through the entire session, while working with Sam, and we wish her focus was less on us and more on Sam. She's also kind of a negative nelly . . . and has this "I'm the only one in the world that knows what I'm doing attitude." Like when we told her Sam went from laying to sitting solo in OT, her first reaction was that she didn't like how the OT was showing Sam how to do it. Hello? TEAM? Part of us wants to give her the benefit of the doubt and realize that she probably thought (or hoped) Sam would be further along in her motor skills now so she does feel discouraged, but that shouldn't show in appointments, right?! (Other PT/OT moms, I really want your insight here!).

Then, B's dad and my mom BOTH got to come out (at separate times) and go to both OT and PT appoinments, and BOTH commented on how impressed they were with the way Sam's OT worked WITH Sam and how the session was clearly ABOUT Sam and how different that was from the PT. I think the fact that we have such a young, excited OT has made the irritating qualities even more apparent. I mean, maybe the OT doesn't have the YEARS of experience that the PT has, but maybe there's something also to be said for enthusiasm over experience.

Part of us felt like we'd be crazy to move on from this PT that has so much experience, came highly recommended, etc., (A friend surmised that reputation may be a few years old, which may be true). Then, we felt like we had to change. NOW, we are at a point where we've decided that we've worked with this person now for over a year, and maybe just maybe we can TALK through these issues (constructively) with her in hopes of moving forward together. I emailed her and we plan to have this talk soon. That too makes my stomach hurt, but I know if I let things keep going as they are, I'm not doing my job in being Sammie B's best advocate. She deserves more from her PT and as it is now, she's being cheated. But . . . not going to be a fun or easy conversation.

So all of these "to-do's," and upcoming appointments/talks/etc. have me all worked up. On a day I have a ton to do at work, but can't seem to focus. Oy. Boo. Hiss. All that jazz.

And when I have these negative nelly moments myself, when the worry and fear overtake my optimism, I feel guitly. Like I'm discounting who Sam is. It's insane, I know. Because, I don't for a SECOND want to change Sam. It's her story. And we've learned more about love from her in her 23 months of life than I learned in the other 30 years of mine. She's magic. PURE magic. But if I could make things easier for her, to make things come more effortlessly to her, I would. In a heartbeat.

I love her so much my heart hurts. And that's why, just sitting at my desk, thinking about doctors' appointments, therapist changes, etc., and HOPING BEYOND HOPE that we are making the right choices for her, opening the right doors, panic sets in, and tears STREAM down my face. Being a parent -- one of the two people making the decisions for someone as magical as little Sammie B -- is a heavy burden. But one I wouldn't trade for the world.

Just a day. A moment. This too shall pass.


Amanda J said...

You ARE making the right choices. You are doing a great job (and so is Sammie)((Hugs))

Kristen said...

Lots of decisions and you are doing everything possible for cute Sammie B. I understand the crazy day I am so happy for the progress P has made and the next day I am wondering if we need to see a new dr to get his/her opinion.
All part of the hypotonia journey I suppose.