Wednesday, February 29, 2012

Just when you thought things were going great

 

     Yeah, it’s about time for one of these.  We thought Mantha was doing well.  She wasn’t having puffiness, seizures under control, making developmental strides, all seemed to be well.  Then, we had her blood drawn after the family strep throat drama. (She was due for some blood work and the strep throat visit for two sisters was a good excuse, I guess to talk about everything else.)

     Results come back, there are a couple of abnormal levels. Vitamin D?  No problem, we start giving her a supplement for that.  Thyroid?  We’ll see the endocrinologist for that one.  It took a while, but we finally got in today.  Yes, the levels were slightly off.  It’s been a while though, so why don’t we get new tests done?  Certainly.  Probably get the results Friday, right?  Couple of days to convince yourself nothing’s wrong.  Guess again, get a call the same afternoon.  Thyroid is more off than before.  So, now we get to give her a thyroid pill daily.  This is not an unheard of issue when dealing with DiGeorge syndrome, so we’ve really been rather fortunate not to have had to deal with this before now.

     There are many times that we start to live in this ‘fantasy world’ where she’s not as sick as she really is, and things are actually going quite well.  You get complacent, and you don’t remember that you are dealing with a very sick girl every day. 

     After the phone call, I went (mentally) through events of the past few months and wondered if I had missed the warning signs, or something else that would have given me a clue.  It doesn’t seem to matter whether it’s something big or small, you do the same thing.  You tear yourself apart in a self blame when you wouldn’t have known anything was wrong 30 or so years ago, and you only know now because of modern medicine.

     That’s our update.  Just another adjustment in the road.  Another issue to read up on and educate ourselves on.  I thought I was done having to study!

 

John

2 comments:

Debra said...

I've been praying for all of you as you adjust to this.

And no, there is nothing either of you should have seen. The symptoms you did notice were more likely to be related to her heart, so why in the world would you have reached other conclusions?

Don't beat yourself up. Yeah, yeah, yeah. Easier said than done.

Scrapping Mom of 5 said...

Hoping they get everything stable again quickly. Prayers for both of you.