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Monday, June 23, 2008

In my professional opinion

Lately I have been channeling my grandmother, Snoopy Gramma. I've been saying things like "this place looks like a cyclone hit it". If she were here now I know she'd say, "you've got more opinions than you can shake a stick at". And she'd be right. We've been running around town to this doctor and that one, this therapist and that program. I've been Googling like a madwoman, reading blogs and message boards. All to learn as much as I can about the challenges Miller is facing, what we may all face in the future, and what we can do about it.

It's quite a challenge for me emotionally. Back to that damn rollercoaster they always talked about in the NICU. I think in analogies mostly, and I hate that one. Rollercoasters are fun, they are for amusement. There is nothing amusing about the anxiety that comes with trying to discern the diagnoses of the doctors and advice of the therapists...especially when they all seem to be mild to moderately conflicting. We have doctors telling us that he has 'mild to moderate CP'. Click here to read about Cerebral Palsy. We can handle hearing this, but it's tough to tell friends and loved ones. I can physically feel their hearts drop as they break into a sweat and struggle not to flinch and to say the right thing. There is no perfect response. Just don't disappear. Ask questions if you want to. The fact is that nothing changed from the moment before we had a diagnosis to the moment after. It's obvious that Miller is delayed and has motor challenges. It doesn't take a brain surgeon to tell us that! I couldn't resist that one, pardon me. The tough part, after getting over the initial blow, is that not everyone agrees on this diagnosis. What's more, no one agrees on exactly how to treat and what's treatable. Opposite ends of the spectrum actually. So Miller has seen 2 PT's, one OT, a pediatrician, a neurologist, and a neurosurgeon. He is also participating in the Developmental Assessment Program at Dell Children's...where they have their own PT's, OT's, NNP's, and Neurologists...AND OPINIONS. And just for good measure, we are still involved with ECI.

Danny and I are just doing the best we can with all of the information. We are doing our best to find the right 'recipe' for Miller. The great challenge here is that recipe will have to change with Miller as he changes and develops. What if Oreo had to change their recipe every 4-6 months? Maybe not the greatest analogy, but you see what I'm getting at.

There are plenty alternative therapies and treatments out there too. But you have to get out your Inspector Gadget cap and ride around in your Go-Go-Gadget Copter to learn about these. And lots o' luck trying to figure out what's real and what's hocus pocus fairydust!

And then there's dealing with insurance. [sigh]. For the first year, we had absolutely no problems with insurance. Relatively speaking, Miller had a fantastic first year. He got out of the hospital earlier than expected, with no major infections (no minor ones either), no surgeries. Off his reflux meds by January. He's a GREAT eater (this can be a real hairy problem for preemies and brain-injured babies). He's had nothing more than one tiny little runny nose. All of the above are what's expected in the world of preemies, and much more. So in my opinion, the insurance company has saved a ton of money on us! Add to job description: "must be proficient at finding loopholes in insurance policies"

For the past few months Miller has been changing at lightning speed. And those changes have been accompanied by a dirty rat called Tone. Miller has increased tone in his arms & legs, and decreased tone in his trunk. It's making it really tough for him to make developmental strides. He is still having trouble sitting unassisted and he's not crawling. But he is trying! It's not easy on him. He wants to be mobile, but his little muscles are working against him. We are now in therapy once a week, and of course we work his therapy into just about everything we do on a daily basis.

Miller is a really,really, happy kid. And he really has an incredibly sweet spirit. I have a habit of completely smothering him with kisses. He doesn't love therapy but we try to make everything a game and much of the time time it works. He quite the mama's boy, so handing him off to a therapist is still a little further down the road.

He's going to be better than okay. And so are we. In fact, we are already great! In life, there are always challenges. I have this theory that in Heaven we get our 'book of challenges' and then we come down to Earth and face them all. That each challenge in life is specifically designed for us, and it's totally how we deal with it that determines our fate. I could go on forever about this. So now, I am praying about purpose, guidance, patience, be guided to my purpose, with patience and wisdom and love.

So to all of our lovely loved ones, thank you for being our 'Village'. If only I had Snoopy Gramma to hold me for a moment, in her housedress, her long hair tucked up into a bun, and rock me in that chair...tell me stories about the birds outside. I would take a deep cleansing breath...and smile. Sometimes you just need your Grammy.


Campbell & Emily's Mom said...

Miller is so blessed to have such patient, wise and loving parents!

I hear equine therapy is great, although I might be a tad bit biased b/c of the whole horse thing. Anyway, Campbell would be more than happy to let Miller borrow her chaps and take some turns on Pogo. Miller might need to spring for his own helmet. Not sure pink is his best color. ;)

Teri said...

OK Stephanie, that vision of your grandmother made me cry! I am glad Miller has such a wonderful, caring and emotional set of parents. Whew. I need a Kleenex.

Anonymous said...

We love you guys and we really really really love Miller!! I LOVE that he is happy and I can attest to his wonderful sweet happy positive spirit! Your messages always make me emotional but you have the BEST outlook and I am proud to be your friend!

Kristen P. and Fam

Anonymous said...

Momma! We love you all to pieces!!! We can't wait for your visit and for our boys to meet :o) You know we are here for you every step of the way if you need a sholder to cry on or a empathetic ear - keep your head up the best is yet to come!!! You are quite possibly the most verbose person I have ever know :o) I love the love in your words and I know Miller feels your love everyday - that's what REALLy counts!!!

Love, Didi, Anthony, and Bexley