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Archive for the ‘hope’ Category

Have you read this post, yet? No? Go ahead; I’ll wait for you. (cue HOLD music).

Oh, hi! You’re back. Great.

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You know, I’ve been sniffling and tearing up for the past 24-plus hours as I’ve been thinking about the momentous watershed event which will take place in just a little more than an hour from now. Yep, no matter what your personal political views, you cannot deny that this is a pivotal moment in this country’s history, in the psyche of its people. It is a re-birth of HOPE.

As I was watching the early morning coverage on Good Morning America (what?? I like the warm fuzzies of Robin, Diane and the whole team), I wondered if there would ever come a time when we could or would put a person in to the White House who had ever struggled with any sort of developmental disabilities as a child. Not that I was necessarily thinking about my own son —though Michael’s story certainly goes to show that one never knows what changes the tincture of time and a large measure of hope can bring to bear on a person.

When I read Jess’s post today, all of a sudden, my thinking didn’t seem so far fetched — even in the context of my son’s future. See, he’s only five now and he doesn’t yet speak —though he certainly has lots to say! But yesterday…

Nik said his first unprompted, unsigned, completely appropriate and in-perfect-context word. It wasn’t enunciated or articulated to Henry Higgins’ exacting standards but it was perfection none the less. One word.

MORE.

Yes, my love. You may, indeed, have more.

The sky’s the limit.

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Ah, intuition takes me there
Intuition takes me everywhere

~John Lennon

In my desire to share last week’s experience with the diagnostician, I realize now that I left out some pertinent information which may put my attitude into context for some of my readers who are outraged on my/our behalf. (And, truly, I am so touched by that. You have no idea how much.)

I am not going to let that doctor’s attitude, arrogance, laziness —call it what you will —deter me from finding answers for my child.

I don’t know what steel I have found within me but I refuse to let go of my knowledge that whatever is going on with Nik has a physiological cause. It may have some significant neurological manifestations but, based on our evidence-based knowledge that Nik’s brain has sustained no further injury since birth and there is no sign of any progressive degeneration, the cause is absolutely physiological. I know that from some deep-seated, intuitive understanding which I cannot explain but I trust implicitly.

Sometimes, when I am starting to doubt myself —to think that maybe I might be wrong —things like this article pop up in unexpected places and fan the embers of hope which I refuse to let die.

Lee J. Nelson struggled for years with a similar issue as Nik is experiencing—not the same but close enough —and yet he would not accept the diagnoses of the myriad doctors he saw. Sixty over the course of six years. One hundred different medications. He never gave up in his knowing that there was a root cause which could be addressed. His story is worth reading; it inspires me.

Nelson sums up exactly what I think many parents and patients with anything less than a straightforward, text book diagnosis may have come to believe:

Nelson said the experience has radically altered his view of doctors. “I’m very thankful I had the [financial] resources and the gray matter to do what I did,” he said. “But I think that a lot of physicians have lost their intellectual curiosity and don’t want to work with a patient.” [Emphasis mine.]

I will not give up. You —and especially Nik —can count on that.

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You can do it, all you need is a hand.
We can do it, Mama is gonna see to it!
Curtain up! Light the lights!
We got nothing to hit but the heights!
I can tell, wait and see.
There’s the bell! Follow me!
And nothing’s gonna stop us ’til we’re through!
Honey, everything’s coming up roses and daffodils!
Everything’s coming up sunshine and Santa Claus!
Everything’s gonna be bright lights and lollipops!
Everything’s coming up roses for me and for you!

(“Everything’s Coming up Roses” from GYPSY)

Woo Hoo! Time for a happy post and a happy dance!

As you know, I’ve been in that nasty ol’ rabbit hole lately and trying my darnedest to claw my way out. Of course, all the cyber ice cream probably didn’t help! Just makes my butt bigger…but I digress from the H A P P I N E S S I want to share with you all.

We had our appointment with the immunologist today; I’ve been really worried about this one since Nik’s been so sick for the last year and it doesn’t seem to be improving. Both Niksdad and I have been imagining the worst-case scenarios; it’s not a difficult leap to make for either of us, given what we have been through since Nik was born. Well, the doctor gave us some wonderful news today —Nik’s immune system has done significant catching up! While his immunoglobulin levels are still slightly low, they are at least I the normal range for his age group.

This is very good news, indeed. It means Nik’s immune system has been developing the proper antibodies in response to illnesses and from the booster shots he’s received. In fact, the doctor said he didn’t think we needed to worry about having Nik around lots of kids (as in a school/daycare setting) anymore. He thinks that Nik may have been so ill this past year because it was Nik’s first full-scale exposure to lots of stuff —ever.

Until Nik made it safely through his first two winters at home, we had to be super-cautious about exposing him to illnesses which could cause major respiratory setbacks. Since Nik’s first winter was spent in the NICU, his first real exposure wasn’t until the spring of 2006. He started school in June 2006 and has been sick off and on ever since. Most likely, he simply hadn’t had the time most toddlers have to build up antibodies before getting bombarded in a school setting. (Hmm, yet another affirmation of our decision to remove Nik from school this year; he’ll have a chance to develop greater immunity at a more normal pace.)

There’s a bonus. Not only is this good news from a health perspective; it means that Medicaid cannot force us to use the letter of medical necessity from the pediatrician which states that Nik shouldn’t be in school due to concerns about his health. The issue has become moot. “Why is this good news,” you may wonder? Well…

It means we can proceed with our plan to cut school out of the picture entirely and not have to worry about Medicaid trying to force them back into it. That would just be a legal quagmire at this point and we are not prepared to go there; we’d much prefer to spend our time and energy living our already too full life and working with Nik —playing, teaching, encouraging in the ways we know he thrives. Plus, with Niksdad in the clinical phase of his nursing school experience, I’d pretty much have to shoulder the burden of preparing for a legal fight all on my own. Um, no thanks.

But wait, there’s more! (“Yes, if you act right now, you’ll get this amazing set of Ginsu knives free…”) While I was out getting my shaggy mane cut, colored, fluffed and puffed this afternoon, Niksdad called the case manager at Medicaid to tell her about the immunologist’s report. We felt we had to be fair so she didn’t waste time trying to work an angle that would only lead to heartache for her. OK, that and the fact that we would be opening ourselves up to a potential charge of fraud (by the school district) if we proceeded to present the letter of medical necessity to school —thereby forcing them into providing services —and withheld the knowledge we gained this morning.

As you might imagine, Miss Case Manager wasn’t thrilled about it but she certainly understood. She’s actually a very lovely person and also a mother of two small boys so she completely understood the relief we felt; she also appreciated the medical expenses that were neatly avoided in Nik’s not having some sort of autoimmune disease! Miss C.M. has assured me all along that Nik’s best interests were being considered and that he would indeed be taken care of; I was afraid to trust her.

Today, I humbly admit I was wrong.

Apparently, this week while I was wallowing in the rabbit hole (well, it was dark and cozy down there), Miss C.M. was diligently following up with her supervisor, their compliance department, and the state director of Medicaid this week. They all agreed to authorize services for Nik in all areas —PT, OT, Speech, and Feeding therapies —for another TWELVE WEEKS, once per week in each area through the end of January. When Niksdad told me this, I cried tears of relief and joy.

I then promptly called Miss C.M. to thank her profusely. See, piss me off or —worse —screw with my kid and you’re on my black list; it will come back to bite you some day. Take good care of those I care about? You have my sincere gratitude and willingness to make sure you are recognized for your good deeds. Miss C.M. told me that once the therapists are nearing the end of the twelve weeks, they just need to submit for more authorizations; she said it most likely wouldn’t be a problem to extend them. Whew! Miss C.M. earned her place in my heart today.

While the 30 minute sessions per week aren’t necessarily as much as I think Nik could really benefit from, it is significantly more than he would be getting through school. I also know that I will attend and participate in each session and learn what to do at home. The value of the carry-over at home is significant; it is not something we ever got from school in spite of our asking numerous times. Besides which, I can now stack appointments on just a couple of days a week, leaving time available to do things like go to the park to meet Mom2Rebels, drive north to meet Irene, take Nik to the zoo, go swimming, take a music class, play in the leaves outside, nap on the floor of Nik’s room —whatever our hearts, mine and Nik’s together, desire.

Tonight, I feel like a tremendous weight has been lifted from my heart. I am filled with hope and joyful anticipation again. There are still hills to climb and unknown challenges ahead, I know. But for now the road ahead looks clear and smooth and I see a glimmer of a rainbow in the distance.

Image Courtesy of WallpaperDave.com

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