Elmo had four ducks... quack, quack, quack, quack!

This song has played in Tripp's DVD player so many times in the past week that it's the only possible thing that I can think of for a title.  It's all I hear ringing in my brain all day long.  I even dream about Elmo's darn ducks... 

Little man has been SO high maintenance lately, bless his little angel heart (and to some of you up North, I know "Bless your heart" means something ugly... but to me it literally means "Bless his heart"- I'm not cursing my child :) haha.  He knows exactly what song/CD he wants to listen to- it's just the "us figuring out which one he wants" part that is tricky.  About 95% of the time, it's Elmo's Ducks... but every now and then he likes to switch it up and we have to guess which one he wants until he finally smiles (which means "yes").  And he may only want to listen to one song on that CD once or maybe 25 times in a row, then on to the next.  

And then the next game is figuring out what he wants in his hands to hold (while he's rocking).  He only hold certain toys together at the same time, and only hold certain ones in each hand.  For example, when he holds Big Bird and Elmo together, Big Bird has to be in the right and and Elmo in the left.  

  And usually we can guess easier by what he's holding in his hands.  If he has a duck- it's "Elmo's ducks", Big Bird- it's "Big Bird's song," Ernie and Elmo- it's "One Fine Face" (a song that Elmo and Ernie sing together.  Get my drift?  Ok, now I know that you guys officially think I'm losing it.  Don't worry... I think I am, too.  Actually, I'm positive that I am, little by little. 

Oh my little sweet man is breaking my heart these days.  The days are passing by so fast... and not only is his disease progressing and his sores and things getting worse, but I'm having a lot of guilt for not have taken the proper steps "education-wise."  I feel like I should have been having speech therapy, physical therapy, and occupational therapy in here over a year ago.  We had OT while we were living in Norco, but after the move, I never contacted anyone to get them here.  And yes, I know I've had A LOT going on and on my plate, but that's no excuse.  Little man's needs should have come first.  I'm in the process of getting them in now.  Better late than never, I guess.  

Hopefully they will be able to help us a lot with the "communication" part.  It's so frustrating for Tripp and sad for us when he's trying to tell us something that he wants and we can't understand.  He's older now and VERY opinionated (I know, surprise surprise), so we need to have a better means of communication going on other than just "guessing" what he wants.  I'm hoping we can try some type of comunication board.  

Medically, I would say right now (today) he is stable.  Our sweet,  super awesome home health nurse, Kati came last week to draw Tripp's blood again.  Everything went really well- I was VERY impressed at how good she was (but wasn't really nervous at all because she works in the PICU at Children's hospital).  Anyway... we got the results back :

BUN- 33    Normal 6-22

Albumin- 5.1     Normal- 6.3-8.2

WBC- 22.7    Normal- 6-17

HGB- 10.9    Normal- 11.3-14.1

And a few other labs were just a little off- but overall I was VERY impressed considering everything he has going on how well his labs actually were.  

E X C E P T:

His Platelet Count was 1.322 million.

The normal range is 140-400 thousand. 

The last time we drew his labs in October, his platelets were at 900 thousand and Dr. Defusco was very concerned- so I'm not quite sure what she's going to say or what we are going to do about it.  I haven't heard from her since we've gotten the results back because she's on a VERY deserving vacation! :)

Your platelets are what help your blood to clot when you cut yourself or damage a blood vessel in any way. 

 I am no doctor, nor am I a platelet count expert- but I am a nurse, so I do know that a very high platelet count means thicker blood, which means less circulation, which means a high risk for a thrombosis (a blood clot), which could cause a stroke or heart attack.  In Tripp's case, I think it could have a lot to do with why he has so much trouble breathing and why he is so short-winded when he stands up to play.  A higher number of platelets are common in EB and other things such as anemia (which he has as well), leukemia, cancers.  I guess it's the body's way of adjusting.  And in EB, it's almost a good thing, because when Tripp has a bleed, it almost stops immediately.  Otherwise, he would be losing a lot more blood than he is now.  BUT, being THAT high is not good- and I'm thinking could get borderline pretty serious.  But I'll have to wait and talk to Dr. D and let you guys know what she says.  

Baths have been bad again.  Not so much the "in-between" part, but the beginning and the end now (for some reason) are just horrible.  Lately when we sit him up to do his arms, he just cries and cries and makes himself so upset.  I encourage anyone who wants to know the true meaning of pain and suffering to come join us for Tripp's bath.  I would rather someone cut of my right arm every other day than have to put him through that.  I'm serious.  Mom and I have to psyche ourselves up mentally before we do it.  And I know it's the scariest, most awful thing for Tripp.  I hate that for him.  I get a sick feeling in my stomach on every bath day.  And I know he can sense when it's bath time, too. 

But things are just okay around here as far as Tripp is concerned.  The days just consist of making him as confortable as possible and doing anything we can to make him smile.  

Thank you all again for the continued love, prayers and support.     

Just one side of my poor baby's leg.  

See why he gets whatever he wants?? :(

Love,