Tuesday, March 12, 2013

One More Day Til It Really Begins....I Hope

Today is Monday.  One more whole day before we go to our doctor's appointment in North Texas.  About a five hour trip for us, but I am so hoping that it's worth it.  This doctor deals a lot with allergy/immunology issues and has helped a lot of PANDAS kids.  So say an extra prayer for us, please.  Hoping that he will be a big piece of our healing puzzle.

We still have our appointment in Colorado for Lyme.  I hear great things about this guy, and honestly, I think he is the first piece of the puzzle that has to be worked out for us.  But I have to get this machine rolling, and a PANDAS doc is a necessary part of that team of docs.  Our Colorado appt. got bumped up from mid-June to early April .  And...we have an appointment with her psychiatrist in early April, as well.  

I have to keep our psychiatrist in the team for a couple of reasons.  First and foremost is the fact that our family is on the brink.  Over the brink, actually.  We are hanging onto the edge of the cliff by our fingernails, and slipping as I type.  I don't want her on psych meds because I want to know that when I see improvement, it is from our wellness plan, not from our band-aid plan.  And on psych drugs, it will be hard to distinguish.  Yet...I can't hang on like this much longer at all.  And I know the rest of our family can't either.

The second reason I need this doc is that our house is that house on the block that could just sink into the ground and be swallowed up whole at any moment.  It's the one that neighbors must see as the house with inexplicably flashing lights, strange noises and screams in the night (and in the day).  We're the family that appears to be shirking our duties when our children march, push and shriek their way out to the van for church and the family that requires three children to sit in the running van for a half hour or more while a parent tries to wrangle a small-adult-sized child screaming, "I HATE YOU, I WISH YOU WERE DEAD IN A DUNGEON, DON'T TOUCH ME!!!!!!" out to the car for school or some other venture.  Even though several of our neighbors know what is going on, I need our psychiatrist who has walked this walk with us for the past four years.  I need him to be able to tell anyone who comes to question, that this is not poor parenting or abuse.  We have been walking this walk with him for years, and we are so TRYING to heal our daughter.

And recently, we tried a therapist.  Two visits.  I thought that would help.  She seemed to be in a place where she was more aware, where she could tell me, "I'm starting to feel bad and irritable."  However, she has since left that place and can only scream and rage.  There is no good time any more, only momentary breaks.  She can't function in a way that would allow her to use any skills to "manage" her behavior or symptoms.  So for right now, no therapist on our "team".

So we're leaving on Wednesday.  Please pray for us.  Pray for an accurate picture of dd's circumstance for the doctor, for me to be able to include everything that is an issue, for dd to feel positive and good about this experience, and for HEALING.  Please pray for healing.  For our daughter who has been so sick for so long.  In a way that alienates her from those that love her most....not being able to stand the touches or hugs of those people, spitting words at those people like venom.  And please pray for healing for our family that is so hurting.

May God bless you and yours and bring healing to each one of you who needs it.

No comments:

Post a Comment