Wednesday, December 9, 2009

The building is not on fire.

This is the analogy Dr Standard used in a recent online chat session with The Perthes Group. It seems Brian’s pain has been due to increased fragmentation on his right side and micro fractures in the core bone of the ball and hip joint. There is no cure or any way to stop the deterioration. The disease must run its course. While it does, these micro fractions lead to increased inflammation and pain in his hip joint. So as dire as it immediately seemed, after speaking with two doctors, there is no need for us to "run from the burning building screaming."

Brian will go back to Chops in February to get a series of x-rays to see the rate of deterioration and then figure out a course of action. While this is purely premature speculation, it appears as though Brian has full head involvement on the right side, and depending how it grows back, may need no intervention or surgery....but right now it's anyone's guess. There are two very opposite opinions of the left side. One is that it is in the healing phase with a large femoral head with an equally large acetabulum which fit together fine. The other is that it is still in the beginning phase and has multiple fractures that have not yet started to break apart and is still too soon to tell anything from the x-rays.


I joined the Perthes Support group I linked above. They are really a great bunch of people with the common goal of advocacy and knowledge and support concerning this disease, for the patient and for the families. I was very warmly received by them and told them Brian's story. I have been gathering my information and familiarizing myself with the "Perthes speak" so I will have a tiny bit of a clue when discussing things. Between this and all the legal speak concerning the 504 with his school, my head has been swimming.

I decided to try and put it all  on the back burner and get to quilting and doing crafts with the kids and doing some more reading with Brian. We are currently reading three books, The Unicorn Book, Book 5 of the 39 Clues series: The Black Circle and Captain Underpants And The Preposterous Plight Of The Purple Potty People and boy are they all very different. When we got to the chapter about the King in India living in a cave and  marrying a Unicorn who later gave birth to a brown boy with a horn, we decided to start another book rather than explain that to a seven year old. Bestiality discussions even in Mythology are a little out of my comfort zone. :) Kaiya gets bored and fidgets a lot, so her visits with us during  these story times are short. She has a selection of books on her bed that we read throughout the day that are far more interesting to her than her "Bruda's books" (brother’s books in toddler speak.)

Tonight Uncle Mike is coming over, so it's cheese steaks, Rock Band, crafts and fun. I hope you have a great evening as well.

1 comment:

  1. So, on to life as usual...hahahahahahaha....always funny what we consider "NORMAL" once adjust to the weirdness of the current situation.


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