Tuesday, June 9, 2009

And we exhale! (this is going to be LONG)

And, again we EXHALE. Basically, I think we've now seen THE most specialized doctor ever (really, he's a pediatrician, neurologist, AND ophthamologist all rolled into one super human doctor ;o)) and I told myself (okay, someone very wise -- that's you Auntie D -- told me this and I believe her) that this is THE guy we've been pointed to from SO many sources and he's THE expert in his field so if he tells me not to worry, no more worrying . . . (For those of you who want the brief update on today's doctor's appointment w/o all the additional rambling, see blue font ;o))
This doctor (we'll call him Super Doctor) was recommended by our neurologist (and our PT AND another mother) because he's not only a great opthamologist, he specializes in neuro-ophthamology so he's adept at tapping into the complex interation b/t the brain and eyes. She (our neurologist) thought that if the issue with Sam's eyes was caused by some sort of neurological coordination problem, Super Doctor would be the one to figure it out. So, we saw him. And as I posted last night, I have been a ball of nerves. But, the good news is -- we basically heard (again) the same things we've already heard, just with more precision (and precision gives me confidence). Actually, it's funny . . . I realized as I was driving home from Sam's doctor's appointment today that as we've gone up the chain of "specialty," the story we have been hearing remains the same, but just becomes more precise:
- Pediatrician said Sam's motor delay is just low muscle tone and bad vision. She "wasn't worried" and thinks with time (and PT) these issues will all be fixed.
- Neurologist went into more detail, but again said it was just low muscle tone and bad vision, with some more technical language thrown in. She "wasn't worried" and thinks with time (and PT) these issue will work out. She did think that b/c of Sam's bad coordination, we should see Super Doctor, who could determine whether there was some underlying cause (specifically, something in the cerebellum) that was causing BOTH the vision and muscle tone/coordination problems.
-Super Doctor - Again, more detail -- motor delay (both fine and gross) caused by low muscle tone. He doesn't think its any "condition" or "disorder" but rather "benign congenital hypotonia" (i.e. low muscle tone w/o any other cause). I'd read about this some (and hoped and prayed that's all it was that Sam had). Basically, some kids are just born with low muscle tone. It's more common amongst premies, but others are born with it too. They tend to be delayed in their motor skills, but eventually catch up (usually around age 3). Usually the only lasting sign or symptom is maybe a little bit lower than normal coordination. That's it. And, the treatment is PT, which we are doing. On top of that issue, Sam has the vision delay. He said that if this were caused by some other thing (like a neurological disorder) he can usually tell from the eye exam and eye movements, and he didn't see any red flags with Sam. In his words, the low tone and the vision issue are just two unfortunate coincidences -- totally unrelated, but confounding factors in terms of her motor delay, but both are "fixable." Same thing we've been hearing, but a whole lot more detail, and certainty. EXACTLY what I needed. He also determined that she does have TWO types of strabismus (the eye crossing) - accommodative (b/c she's so far-sighted) AND infantile strabismus (which is the residual crossing we see, even though it is slight, even now after her vision is corrected with the glasses). SO, she does have to have surgery on her eyes, but its a pretty minor procedure. Its scheduled for July 6. She will be under general anesthesia, which is worrying, but its an out-patient procedure with quick recovery and very very little pain for the bean. We will get through all of that.
I am so relieved. I feel like I can (and good thing, b/c I HAVE to) get back into life. Back to work (emotionally, mentally -- physically I've been there). So there it is. Thank goodness for incredibly brilliant, specialized doctors. And, thank goodness for the consistency b/t the stories amongst our fabulous physicians, which gives me such confidence.
After her appointment with Super Doctor, we went to pick up her second glasses. This is her spare pair with transition lenses for outdoors and the stronger prescription. I think I might like the pink better, but she's stinking cute in both! The pink frames are now sent off for new stronger lenses as well, but they'll be back in the rotation in a week or so.
So, we have all the information we need, at least for now, and from here . . . we move forward with ALL the fabulous resources that will help our Sammie B grow and learn. We've got a fabulous nanny in place (already, its day 2 and we have the utmost confidence in her); we have PT scheduled; and an evaluation for occupational therapy (OT) in the works (that's more for the fine motor skills; PT is for gross). We are doing everything our Bean needs, and we have fabulous doctors looking out for her and we've truly done our due diligence in picking the most fabulous of fabulous so I leave it in their most competent hands. . . . . . and I get to just live and enjoy my little BEAN! YIPPPPPPPPPPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!


Elisa said...

I KNEW it! I mean, come on.... freakin' LOOK at her! She's a superstar! This is all just little stuff. In the grand scheme of things, it's just the parsley on the side. Adds some spice and color to life. Not that you were in need of more of that, but hey....

I'm so happy for you guys! You can stop, breathe.... share smiles and enjoy this amazing time together. Feel her hands on your face, watch her discover new things and learn new skills. In some ways, this really enhances your time together. It's so easy to get caught up in life. You guys are SO focused on all her small accomplishments... you won't miss one single special moment! So much better than someday looking back and thinking you can't remember the first time she propped herself up or delivered her first dissertation on the life and times of Fabulous Sammie B.

Congrats and lots of love and smiles to you three!


Teresa said...


Brian shared your blog with me and I am totally hooked. It is like having a lovely long chat with you. You know this, but I am always thinking about you and little Sammie and sending lots of positive energy and love. You were all due for some good news, and I am thrilled - THRILLED - for you guys!!

Only good things from now on...let life begin again!

Sarah said...

WONDERFUL, WONDERFUL NEWS! I'm so happy for you, Brian, and Sammie. I'm sure you are ecstatic and relieved. Enjoy every moment...it goes so fast!