Endocrinologist visit

 Today Lillian saw her new Endocrinologist.  I really liked him, very nice doctor.  He spoke to Lillian, which is always a bonus to me.  So, all good news to report.  Her DEXA scan is actually in normal range for her.  He did xrays to check for any spinal compression fractures and there were none.  He recommended another DEXA scan in a year to see how the depo may or may not be affecting her.  We don't need to get with him again unless she starts having weird, unexplained fractures.  He said she's high risk simply because she has chronic illnesses.  It is so refreshing and rare to have such a positive appointment.  Changed my whole day.  

Her pediatrician contacted me directly yesterday to apologize for the missed lab test.  I'm supposed to text him again if she doesn't seem to be responding to the med they put her on.  

In two weeks, we follow up with her GI and pulmonary doctors.  

I was struggling today.  I can't quite put my finger on why other than the general frustration I feel when she's failed by the professionals we are supposed to depend on and the fact that no matter what I cannot change it or even vent my frustration about it.  Maybe it will help with some other child, I hope, who won't fall through the cracks.  Sometimes, I feel there is a rage buried deep inside, with nowhere to go.  Noone wants their child to suffer needlessly and that creates a helplessness inside that is heart breaking.  And now, there are tears stinging my eyes and a lump in my throat.  

Today was a good day.  This is the day that the Lord has made.  I will rejoice and be glad in it.

One week home.

 We are home now for a week.  She is weak, but getting stronger.  She could be stronger if she wasn't plagued by cdiff.  I took her to the dr last wednesday, fearing she had prolapsed her rectum.  She is just sitting on the toilet bearing down for all she's worth for pure water to come out.  I suspected she had cdiff, which a bacterial illness that can get in the bowels once you are on antibiotics.  We turned in a stool sample and the dr said it was not her rectum, but the largest hemorroid he's ever seen on a child and it might require surgery.  She is on a steroid cream for that, and so far, I've seen little to no improvement.  We're also rinsing her with a peri bottle, which just do you know, you can't buy in a store anywhere around these parts.  So, we did some substitutions which were not altogether pleasant for me, but I'll spare you the details.  

I did not hear from the dr the rest of the week, so I assumed she was negative.  However, I have believed due to the symptoms she is having that she probably did.  Well, I called today.  She does have cdiff.  The have had the results since the 6th and noone has bothered to call or anything and our dr happens to be out of the office all week this week.  I have spent the bulk of this afternoon in contact with the office, with her GI dr and I've been notified, finally, that something should be called in before the pharmacy closes, but at this point, I just don't know.  

I am frustrated.  I am sad.  She is/has been miserable and there is nothing in my power but prayer to help her.  I keep telling myself, there is nothing new under the sun.  

I attended church Sunday for the first time in two weeks. It was good to be back.  

I feel emotionally/mentally exhausted.  

On a better note, after Matt had a discussion with his HR rep, they made accommodations for us to get Lillian's prescriptions at our local pharmacy.  When I went to get her med that costs us 60.00, I was shocked to be told we owed nothing.  Cain't HE do it???  (that's a little phrase my daughter picked up from her college roommate) God is good.  " My heart and my flesh may fail, but God is the strength of my heart and my portion forever."  Psalm 73:26 

Friends, know this: when you make a declaration, the evil one is going to strike with a vengeance.  Also know this: GOD WILL PREVAIL!  

The Lord will fight for you, you need only be still.  Exodus 14:14