Well after a long wait due to a lab screw up we finally got the final diagnosis. 

But first........

 

      On December the 22nd Matt graduated from Basic Training/ AIT.  Imagine coming home to find out ALL that's been going on with your baby girl's life.  After sitting down with my husband armed with all the information that I had, I tried to explain to him what it all meant.  After a while I left him alone with the MPS VI booklet so he could sort out and process all the information on his own, in his own way.  I finished up some packing (as we were PCSing to Fort Leonard Wood in less than a week) and came back to talk to the man that I love more than life to see if he wanted to talk.

 

      At first he had an open mind to everything that had been happening but I can only assume that as the facts sunk in the realization hit him.  He was ANGRY!!!!  He lashed out at me, he lashed out at himself, (this still breaks my heart for the last time that I saw my love this upset was when we thought his Dad was dying and when his O'Toole died) he lashed out at everyone except for our girls.  I felt horrible!  Here we were packing to move on the next chapter of our lives, he had joined the Army as a dream and to help better our lives.  He had just went through months of hell and seperation.  And here I am dropping this big bomb shell on his chest.  His Meggie Moo was dealt this unfair unjust raw deal!  I had time to process this information he had not.  I just let him know that everything would be okay and we would figure it out.

 

      So on December the 28th, 2006 Matthew, Rebecca, Megan, and I traveled to Orlando.  Megan had an appointment with Dr. Wheeler.  The results of her skin biopsy were in.   They were positive.  Megan has MPS VI.  Dr. Wheeler had contacted a doctor in St. Louis.  Though we did not see this doctor we did see Dr. Richard Hillman in Columbia, MO.

      (These are of Megan, Poppee, and Her Puppy)

~~~~~~~~~~Fast Forward~~~~~~~~~~

Megan is now undergoing ERT (Enzyme Replacement Therapy) she goes weekly to Univ. Hospital in Columbia, MO.  There are some wonderful nurses there!  Megan calls her IV Pole her "Puppy" and the tubing is called it's "Leash".  Megan will receive weekly infusions for the rest of her life pending new treatments or in the best case, a cure. 

~~~~Keep Praying For Her and For All~~~~ ~~Families affected by an MPS or an ML~~

~~~~~disease~~~~~