Thursday, April 18, 2013

Another day.

Today was an interesting day.  We braved the crazy rain/hail/sleet/snow to get to our ENT (ears, nose, and throat) doc.  Aly's stuff was no suprise.  Three ear infections in a month is way too many, plus you add on the reflux and MSPI so it will just be easier for her overall to get them and be done.  Besides, Maddy has had this surgery twice and we know Dr. E. takes like ten minutes each ear-on a slow day.  We also had to talk about adding a hearing test (Auditory Evoked Potential)-there is some concern that as a result of her event in Aug that her hearing might be affected...soo in order to prepare myself, I am going to convince myself she is deaf, so whatever they tell me will not be as bad as that.  I did not prep this way for the vision doc. and we all know how that turned out.  Dr. E. is also going to tack on the eye test.  This is called a VEP (visual evoked potential) and she will be set up similar to an EEG (and will still be sedated throughout both these tests).  I do not have a surgery/test date yet as this is three things to coordinate.  But it looks to be a long day.  At Childrens. Bleh.
For Maddy, there is something going on with her breathing.  But before we go hacking her tonsils and adenoids, we had an x ray done.  So we are also waiting to hear about that, but the probability of Madelynn having a surgery next month is very high.  This will be her third procedure for the every other month for those keeping track.

In my mailbox today was the results of Maddy's MRI.  It was not awesome and with a little help of google search, I could piece most of it together.  Since Maddy has CP seeing brain damage at some point should not be a surprise.  But, it still is.  Seeing that there are changes from her last one to this one is both icky and terrifying because of the fear of the unknown.  There is so much we still do not know about the brain and we want her to have the best life possible, but you kinda need a brain for that too.  The debate I am having now is whether or not the damage is due to her CP or her event in 2011 that caused lack of oxygen to her brain.  Who knows. But damn, those reports are cold and not fair to read.

Okay, but I am a sucker.  I didn't HAVE to read it nor did I HAVE to ask the genetics people to mail me a copy.  But I did.  Because I am sick in the head and like staring at a car wreck, I could not stop reading (and googling) until the report was finished.  I am smarter for it and have more focused questions, but my mental/emotional state could have done without it because I am tired of having my foundation shaken on what seems to be now a weekly basis.

Now we wait; waiting is not one of my super powers.  I don't like to wait and I don't like surprises.  Would like to get this over with so I might sleep more at night-not trying to ask for a lot, but sleep would help.

At 11:00 tomorrow it will be one week since we learned about Aly's eyes.  I have been asked, "but wasn't it just as hard to hear about Madelynn's CP?"  Honestly, no.  We KNEW there was something different about Maddy-did not pick CP, but still knew she needed something and was really behind.  Like I have said before, we did all those damn tests to make sure we have a "typically" developing child.  Now it looks like we will, again, be praying for the day she crawls or talks.  Oh what I would give for a hug (from both my girls).

Still here.  Still pissed.  Still fighting for my kids.  I want to fight less.  I want it to be easier.  Someday.


1 comment:

  1. <3 You are strong and you are smart. Having those reports will be so beneficial at a later date as well. Hugs, mama