Sunday, June 28, 2009

TTD stinks!!!!

TTD STINKS!!!!! (this is the g rated version of what I would really like to say.) There are many things about Trichothiodystrophy that I don't like but one of the hardest parts is having to watch my baby in pain ALL of the time. So, looking at these pictures, which do not do it justice, you might think... Hmmm.. was he in an accident? Did he fall? No, these injuries are 100% self inflicted. Collin is in so much pain at times that he wants to inflict pain in another area to take away from the pain that he is experiencing. For those of you wondering, yes, we do give him pain medications, LOTS of pain medications. There are times all to often that it just doesn't touch it. When this is happening we have to put Collin on watch. We can't leave him alone for one second (even to go to the bathroom) for fear that when we come back we will find this. My sweet and beautiful little boy teary eyed, bleeding, and grateful for any relief that he can find. Today there will be lots and lots of cuddles. I am not posting this to make you feel sorry for Collin or our family. I post this because I want the other TTD families that read this blog to know that they are not alone. This is a hard reality of this illness and it is no ones fault. TTD is an awful beast and if affects every aspect of their lives. These wonderful, brave, and courageous children living with TTD are my Hero's!!!!
All of his scratches do not show up in these pictures.






5 comments:

Brian and Kara said...

Sorry your sweet boy has to endure this. Give him a big hug and kiss for me! He'll be in our prayers tonight.

Zurmely family said...

i understand a little bit of how he must feel... before i was diagnosed with cancer, i itched so badly all over that i would scratch until i bled. it was like, if i could get to where it really hurt, maybe i could make it go away. kiss his sweet boo-boos for me, will you?

Mandy said...

Oh that makes my heart hurt. I hope that tomorrow will be a better day.

The "Street" Clairs said...

Our heart goes out to Collin on these extra hard days. He is such a trooper and our hero!

Uncle bubba said...

I miss you guys, and give bubba a nice big hug and kiss from his Uncle bubba.