To Our Insurance Company…REALLY??????

OK…I have to get this off my chest…many of my friends/family/therapists are saying, “Be happy.  You’ve been approved.  Josephine is getting her specialized stroller.”

But I can’t.  The next question is, “Why?”.

Semantics!

I can’t get over the fact that Oxford has NO idea who Josephine is, or care for that matter.

They denied her authorization for the Kimba stroller the first time, claiming a typical stroller suits her just fine.  Yet, they have no knowledge on which to base this decision.  We submitted genetic test results and a wonderful letter written by our PT and to that they say, “Coverage for specialized strollers for infants and toddlers under the age of 3, whose transportation needs can be adequately served by regular strollers, are not a covered benefit under your health plan”.

So we appeal with another letter, this time written by Sheldon and I (mostly Sheldon).  Low and behold…APPROVAL!  We have had our faith restored in the insurance company.  Funny thing though.  I noticed the approval is based on a pediatric “wheelchair” description.  That’s odd, I think to myself.  But dismiss it because WE GOT THE STROLLER!  That should be the end of things…but it’s not.

3 days later, I get another letter from Oxford, stating, “We have considered the information submitted in support of your appeal.  The denial remains upheld as not a covered benefit under the health plan.  The Medical Director/Consultant who participated in this appeal review is a physician who specializes in Internal Medicine”.

Confused?  So was I.  Until I called Allcare Medical.  My heroes!  When the first denial came through, Allcare Medical resubmitted our request as a “pediatric wheelchair” instead of “stroller”.  Thank God for Allcare!  They know how to work the system and get what they want and what the patient needs.

But what gets me is who the heck is this Internist that denied the appeal?  Why an Internist?  Shouldn’t the decision be made by a Developmental Pediatrician or at least a Pediatrician, at the least?  RIDICULOUS!

And what about the semantics of “stroller” vs. “wheelchair”?  ARE YOU KIDDING ME?  All we had to ask for was a wheelchair and we wouldn’t have wasted so much time trying to get approval for a stroller…REALLY??!!!

So much for trying to do things the right way.  I continue to be amazed by all the work that is expected of us as parents of a child with special needs in order to get what we can for Josephine.  As if we don’t have enough on our plates:  you want us to write letters, jump through hoops, run around from place to place and still not get what we need and a deserve?

So…my new attitude…get what you need for your little princess and screw what is right and good!  That’s the way the insurance company and government want to play…YOU GOT IT!  The battle starts NOW!

The Squeaky Wheel…

GOOD NEWS!!!!  After our 1st and only appeal letter to Oxford Insurance, they have APPROVED Josephine’s special needs stroller!!!!!!!!!  I cannot tell you what I relief it is to have this approval!  I was prepared to contact our congressperson and get the ball rolling any way I could.

It seems to be the norm to deny initial requests because insurance is a business, so if they can save money, why not?  But I will assume they finally saw the necessity for Josephine to have the stroller.  Or maybe they just wanted to “test” us to make sure she really NEEDED the stroller.  Whatever reason, I will say THANKS!

Guess the wait time for the stroller is a couple of weeks…I am so looking forward to getting Josephine out and about again in a system that will actually work FOR her instead of against her.

Anyone need a nice and typical umbrella stroller????

Weight Check at 17 months

Are you sitting down?  If not, you may want to take a seat because this news is a bit surprising…

Our little girl gained 10 ounces in 3 weeks!!!!!!

She was 15 lbs., 11 oz at her appointment on January 5.  At this check up this morning, Josephine weighed in at a WHOPPING 16 POUNDS, 5 OUNCES!

JoJoBean has sailed right past the 16 pound mark!!!!  Way to go!

Mama’s gonna cry…happy tears, of course.

A Few More Winks at Night

After talking with the nutritionist (on Friday, January 15), I took her suggestion of adding a bedtime snack in addition to the couple ounces of formula and…are you ready?  Josephine slept straight through the night two nights in a row!

Don’t worry though.  Josephine was back to her “normal routine” the next two days and was awake every 2 hours.  But we think it’s a two year molar issue and are looking ahead.

Last night, Josephine did sleep through the night again.  I suppose we will have more of those sleepless nights, followed by nights of blissful dreamland.

All part of this journey!  For now, HURRAH for sleep!

Sleep? Who Needs Sleep?

It seems that Josephine likes to keep Mommy and Daddy awake throughout the night…keeping us on our toes, I suppose.

But seriously, the trials and tribulations of getting this girl to sleep – outrageous.  If we would let her, Josephine would cry for 2 hours straight while in her crib, rather than fall asleep, like most children her age.  Then again, what is “Normal for Josephine”…

We are having some issues with middle of the night feedings over the past two weeks.  Mitch Bentler (Nutritionist Extraordinaire) said she was doing great, as long as she didn’t wake up to eat in the middle of night.  OKAY…so now what?  I am calling Mitch on Monday to find out the next step.  Do we need to increase formula intake before bed?  Increase caloric intake whenever we can?

I have read that other Tetrasomy 8p kids have difficulty sleeping, even to the point that one of them must be sedated for 5 hours at night in order to get a decent rest.

So, is this another symptom or just a kid fighting sleep?

On to the next bit of research…

Josephine’s Symptoms

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OK.  We are done with all the tests to determine how Josephine has been affected by Tetrasomy 8p.

As of December 30, 2009, here’s where we stand so far..

  1. Hypoplastic left first rib
  2. Assymetry of left side of rib cage – ribs flair out
  3. Agenesis of the Corpus Callosum
  4. Hypotonia
  5. Speech delay – at 16 months old, her developmental age is 6 months
  6. Cognitive delay – developmental age is 7-8 months
  7. Gross motor skill delay – developmental age is 6 months
  8. Fine motor skill delay – developmental age is 6 months
  9. Pelvic kidney on left
  10. Failure to thrive – recent weight gain was 3 oz. in 4 weeks (1/2010)
  11. Prone to future seizure activity
  12. Epicanthic folds on eyes
  13. Flat bridge of the nose
  14. Slight cupping of the ears
  15. Trigger finger on right index finger
  16. Exotropia of the eyes (mild case)
  17. Retnal development is good and not affected
  18. Excellent heart, lungs and liver
  19. PERFECT IN EVERY WAY!

Weight Check at 15.75 Months

Josephine seems to be holding under 16 pounds lately.  The last visit to the nutritionist put her weight at 15 lbs, 8 oz.  Mitch seems to be happy with Josephine’s progress, although slow and slow!

We are continuing to give formula with Scandi-Cal added for extra calories.  And we even manage to sneak in some root beer once in awhile!

Frenectomy

On November 10, 2009, Josephine went “under the knife” for the first time…scary to say the least!

While the procedure was for her tongue-tie (clinical term is Ankyloglossia) and unrelated to her disorder, the scary part was with the anesthesia.  Typically, anesthesia can hinder muscle movement and that can have severe consequences for a child with hypotonia (low muscle tone).

We consulted with the head of anesthesia regarding the drugs being used during the surgery and he administered the meds.

Our ENT (Otolaryngologist), Dr. Howard Berg, was wonderful!  Very patient, kind and understanding.

Needless to say, Josephine made it through the surgery with flying colors!  She was in the OR at 7:35 AM, in recovery by 7:50 AM and home by 9:15 AM.  She only needed one dose of Motrin for the rest of the day and has been a trooper ever since.

Now Josephine is just trying to figure out how to use her tongue again!  Way to go, Gal!