Death of the Easter Bunny

My two girls woke up this morning with nothing on their mind except what the Easter Bunny had left in their baskets during the night.  Amazingly enough they were filled with candy that Daddy likes also, (wink, wink).  As Bella (2 yr.old) dug through her basket she emerged with a large box and immediately started making growling sounds.  What in the world is wrong with that child I thought, has she been over taken with demons on Easter Morning?  She then shouts in her little two year old 15q24 voice, "Look Daddy a dinatore"!  What was she talking about?  The large chocolate Easter Bunny in the box evidently looks like a dinosaur to Bella.  Dinosaur or Bunny either one she tore into it and devoured it, Steven Speilberg would have been proud of her T-Rex like reflexes. 

Sorry Easter Bunny you've been trumped!

The Dad's Page: What Happens When Dad is in Charge of Getting the Girls Ready?

The Dad's Page: What Happens When Dad is in Charge of Getting the Girls Ready?

What Happens When Dad is in Charge of Getting the Girls Ready?

What Happens When Dad is in Charge of Getting the Girls Ready?  Simply put....all Hell breaks loose.  It's really a simple plan, it is.  My wife leaves early in the morning to go to work an generally the two  little girls crawl in bed with me and we sleep about another 15 minutes after mom leaves.  I'm usually charged with getting the girls dressed, teeth brushed, hair combed and the other things that go along with getting ready in the morning.  I generally make sure at least two of the afore mentioned items are done....hey I'm not Superman.  This morning my wife dressed both the girls before she left.  They crawled up into bed with me breathing their sweet little morning breath in my face, cuddling with me and all was right with the World.  About ten minutes later I got up to go take a shower and left my two little princess' to watch TV in our bedroom.  As I look back at my two little bundles of joy I think "what perfect little daughters I have".  As I'm finishing up my shower, my 6 year old comes in and says "Daddy, Bella (2yearsold) rubbed diaper ointment all over her like lotion."  I reply "take this wet wash rag and just wipe it off her honey, thanks for letting me know."  As I'm drying off I hear Emma holler, "Daddy this isn't wiping off and she has it on her clothes too!"  No problem I think, Emma tends to exaggerate and panic, it's a trait she gets from her mother.  As I walk into the bedroom I see my little perfect angel Bella sitting on my bed covered from head to toe in thick, white, diaper ointment.  It's in her hair, her eyes, her mouth, her shirt, her belly button, her pants and at this point she's smearing it between her toes!  No longer a little angel but a hellion who must be the offspring of a crazy person, I strip her down and plop her in the bathtub.  That diaper ointment is made to repel wetness, and it was working quite well.  I lathered her up, scrubbed and rinsed, lathered her up, scrubbed and rinsed and then lathered her up, scrubbed and rinsed, but to no avail.  This is some good s!@# I thought to myself.  


This had thrown a kink in my routine, my normal plan had been aborted, we were in hurry up mode and already 10 minutes behind schedule!  What shall I do?  I think to myself.  Maybe powder will help soak it up or something....It doesn't, it only makes clumps of an impenetrable powdery substance that NASA could use in Space or an oil exploration company could probably use to waterproof equipment on drilling platforms!  I accepted defeat dressed Bella, tried to comb her greasy, powdery like hair and the three of us rushed out the door to start our day.  I was whooped before I even left the house!  Happy Good Friday and Easter Weekend everybody.

The Dad's Page: How To Keep Your Cool When Arguing With an Insurance Company

The Dad's Page: How To Keep Your Cool When Arguing With an Insurance Company

How To Keep Your Cool When Arguing With an Insurance Company

Due to my youngest daughters 15q24 micro-deletion chromosome disorder, my wife and I get to talk and "discuss" medical procedures and test results with the insurance company more frequently than most parents.  Talking with insurance representatives is like talking with terrorists or water moccasins,....there's no negotiating with them.  It's frustrating and quite frankly impossible.

Insurance Rep:  We have denied the claim because micro array genetic testing is an unproven diagnostic tool for your child's condition.

Us:  Really?

Insurance Rep:  Her medical records didn't indicate a genetic disorder prior to this test.

Us:  I know, that's why they were performing the test, the micro array test is what enabled the doctors to diagnose her.

 Insurance Rep:  This test is only covered if the individual has a genetic disorder, your child's records do not show she had any genetic issues prior to this test.

Us:  Yes m'am, I understand that, ....that's why.....

Insurance Rep:  SO you admit that?

Us:  Admit what?  What are you talking about?

Insurance Rep:  You did not call for pre approval.

Us:  If we would have called for pre approval would the test have been covered?

Insurance Rep:   No it would not have, because micro array genetic testing is an unproven diagnostic tool for your child's condition.

Us:  Then,...wait, all you are doing is repeating what we started our conversation with.

Insurance Rep:  Her medical records didn't indicate a genetic disorder prior to this test.

Us:  I know, that's why they were performing ..... you're not human are you m'am.

Insurance Rep:  This test is only covered if the individual has a genetic disorder, your child's records do not show she had any genetic issues prior to this test.

Us:  I think you hate your job and every morning when you wake up you can't decide between going to work or stepping in front of a train.

Insurance Rep:  SO you admit that?

Us:  You're reading from a script aren't you?

Insurance Rep:  (In a whisper)  Yes....help me please.  They stolen my soul.  Please help me, get me out of here,...please.

Us:  Just punch the "Approved" button and I'll send for help.

Insurance Rep:   (In a whisper)  I can't do that, he's watching.

Us:  Who's watching?

Insurance Rep:  (In a whisper)  Him, the Mr. Mister Man.  He owns my soul and he watches me through the my eyes.

Us:  M'am you're not making any sense.

Insurance Rep:  We have denied the claim because micro array genetic testing is an unproven diagnostic tool for your child's condition.


And so goes the ever going struggle between good sensible people and doctors and insurance companies.






















 



   

Great Video

Chromosome Disorder Information

http://www.youtube.com/watch?v=f_IB683p7R4

What Do You Do When You Don't Know?

As I've said before our 2 1/2 year old daughter was diagnosed with 15q24 syndrome (a micro-deletion on the 15 chromosome) when she was around 16 months old.  As a parent my first questions were: A) What does that mean?  B)  How will this affect her mentally and physically?  C)  What will she be like as a teenager?  D)  What will she be like as an adult?   And we of course received the answer we didn't really want, "It depends" and "We're not really sure".  Luckily I'm the cool headed one of the parenting team in our house and I was able to circumvent this questioning with the phrase "In your best estimate what will she....A, B, C, D.  That's one thing I've learned from dealing with doctors, very few of them want to give you and absolute- for obvious reasons.  My mother suffers from MS (Multiple Schlerosis), she has declined rapidly over the last 10 years and is now confined to either her bed, wheelchair, or her recliner.  She depends on help for everything from getting in and out of bed to getting dressed to going to the bathroom to eating.  It's not a disease I would recommend.  But through her illness it has been very hard to get a doctor to give an absolute answer.  Which in the doctor's defense, MS, just like 15q24, isn't very well understood.

Is that what our little Bella has to look forward to, we wondered when she was 24 months and still not walking?  Thankfully at about 25 months she took off, I mean she wasn't running but the girl was walking!  Then after walking the speech took off as well!  From the time Bella was diagnosed she has received "intervention" through ECI (Early Childhood Intervention), it has been a Godsend.  Therapy 2-3 times per week was very trying but definetly worth it.  Now her case worker comes twice a month and checks on her progression, which he is very amazed at.

Of all the therapies Bella has done the most significant one has been Equine Therapy.  Once again, thankfully a good friend of ours is the director of "Hanna's Horseshoes of Hope" a local non-profit that provides Equine Therapy.  Bella responded more to this therapy than any of the others I believe.  Don't get me wrong they've all been beneficial but Equine Therapy builds a different kind of connection or bond.  We take Bella to "HHH" pretty much every Saturday to ride.  She loves Geronimo, the broke down old Shetland Pony that she rides, and affectionately calls "Mo".

We still don't know what the future holds for Bella but I don't worry about it like I use to.  We are providing her with all the resources at our disposal to ensure that we are doing all we can do.  And I think at the end of the day that's all a parent really wants to know,...."Did I do all I could do?"

http://www.hannahshorseshoesofhope.org/