How I Found the Strong

 

Yesterday we bought a house.  That is a big deal right?  Lots of stress.  And it was.  For a family like ours, it is never that easy.  We also ended up at AI with Lil for an appointment.  Don't let me be more dramatic than I need to be, this was planned.  Our doc, Dr. R could only see us that day so that is when we saw him, before settlement.  Nothing is ever easy. 

It all worked out fine and we made it through but I am still reeling a bit and will be for a while I guess.  The house is beautiful and the neighborhood is amazing.  The kids did not want to leave the new house because the were already in the basement of the house across the street playing.  We hung out in the creek out back for hours while the house was being cleaned, so much fun.  We are VERY lucky, we have a whole week to work on the new house and move things over from the old house until we make settlement on the old house.  This is HUGE.  However, now it looks like we might also be spending a couple of days in AI somewhere in there. 

I like to be right.  It feels good and it feels validating.  But sometimes I would like to be wrong.  Lil does have lesions all over her throat and they are PG lesions.  Dr. R had a good point, She may have always had these when her disease acted up she just was not able to tell us about the pain.  She was always strident when her disease was bad and we could never figure it out.  (Strident is the funny sound kids make when they breath and they are sick.)  We are assuming from this and the pain she is describing that she also has lesions farther down (and the fact that she is actually losing weight- I knew it!) She can still eat because they are in her airway.  We are going to put her under, have her scoped, have her ears looked at by ENT and also give her a colonoscopy because she is still vomiting.  Once they put any child asleep for a procedure, they like to get as much done as possible but especially a kid like Lil.  Just thinking about doing all of this scare the *&%$ out of me.  Doing a colonoscopy means doing a clean out, doing the ear check mean possibly doing tubes.  Tubes for Lil are terrifying.  Any trauma to the skin causes more lesions.  When you see the lesions on her throat and think about causing more of them it is scary.  The fear of doing the scope is the same, if we enflame her throat more we can cause more lesions.  We are going to do a 3 day course of steroids to try to calm things down before we do any of this to see if it will help.  They want to see her at baseline.  What bothers me about this is that they are not going to see the lesions.  The steroids will calm the lesions down and possibly make them go away.  The ENT wants to see them at baseline.  Also, the colonoscopy will be done when everything is calm, again.  I understand why they do this, if we are going to go in it is safest to go in when things are calm but what is the point of going in if they are not going to see anything?!?!  Dr. R sees and feels my frustrations in this.  He calls it the double edge sword.  I get it but it is so damn frustrating.  The other thing is, this is her whole life and she is only four.  And remember there were only four people (people, not people under one but people altogether) with PG I could find that had these lesions in their mouths.  The other morning I went to wake her up and she had blood all over her mouth from one of the lesions in her mouth.  It was upsetting. 

He also talked about the fact that her tonsils are big and they may want to take them out.  He said they do not just cut tonsils out anymore, they shave them down.  I said doesn't that scare you?  He said, "It terrifies me."  I don't like when he says that.  This man does organ transplants in kids.  How can anything in my kid terrify him?

What bothers me the most is that I cannot see any of it.  I cannot see what is attacking her this time.  At least last time I could see the lesions, I could see how big they were.  I knew where, how many, all of that.  This time I just have no idea.  She is in pain and uncomfortable and I have no idea.  It is so frustrating. 

I wore one of our t-shirts the other day and she said, "Mom I don't like me in that picture."  When I asked why she said, "I look mad."  I told her no, you are fierce.  And a huge smile spread across her face.  So now we make the fierce face all of the time and she loves her shirts again.  I asked Dr. R how she can have those horrible looking lesions on her tonsils and eat sour cream and onion chips or sour patch kids. It is so frustrating.  How can she be spiking fevers and have this pain but run around and play?  He said, she has been in pain her whole life.  She has figured out how to do the things she really wants to do even with her pain.  FIERCE. 

So in the midst of moving.  In the craziness of keeping my family safe and happy while getting settled in a new house and still working I have to deal with the fact that this horrible disease is now attacking my baby on the inside and it is hurting her and we have to do something about it and it is scary to do something about it and scary not to do something about it.

In the meantime I am going to play in the creek with her and let her eat green chippies and have fun.  She is loving the new house.  And she is fierce. 

Yes.... I put Rocky in my blog!  LOL!

BTW, I still have t-shirts and sweatshirts for sale if anyone wants one.