Calling All Prayer Warriors

I can say that I'm not one that usually feels weak or defeated but lately I'm feeling both.  I'm close to a mental breakdown and can say that I've ever felt like this...oh wait!  I have!! Right after my first child... oh how quickly you forget those days.

We have had a couple of months with Darcy that have kept us on our toes.
Lets go way back... well February, but that seems like an eternity a go.

February, we made a lovely trip to the ER.  This particular weekend was a busy one, as we had company in town and all these plans to have a fun and light weekend, that is until Darcy's little seizures wanted to play too!  This weekend she had her longest seizure we had ever experienced...17 minutes!  Talk about the longest 17 minutes of our lives.  Seizures suck! Point Blank!  You and the victim are helpless and at the mercy of them... and they are wicked!
So, we went to the ER and had Darcy checked out.  The checkout for Darcy is your normal CT, X-ray, and IV (in the forehead of all places).  Everything checked out as far as her shunt, so luckily that was not causing her seizures, and really the only explanation we get at that point is that her low-grade fever sparked them and with her having a seizure it then decreases the effect of medicine.  So, there we are just increasing medicine again! 

Then we can just flash forward to March, because it wouldn't be a normal month if we didn't make a trip to the ER again!!  This time Ms. Darcy May was showing all signs that her shunt could possible be malfunctioning...vomiting for no reason (which to me means no fever or signs of flu), abnormally fussy (which for her is rare b/c she usually is pretty happy), and more tired than normal.  So we of course don't want to wait it out, so we head to the ER.  She again goes thru her normal routine steps of getting checked out.  Luckily this time they didn't IV her, that last one was a dozy and there was a lot of tears shed by baby and Mommy!  But again (and luckily) everything checked out great and it was just what we can guess as a stomach bug.

Now, here we are in April.  This is a Mother's breaking point, when you can't go a month without something happening to your baby and something that you have no control over!!
It all started two weeks ago, when we  noticed that she woke up with no movement on her left side (so arm and leg were not moving or carrying any weight at all).  The only was that she slept on that side wrong, b/c we didn't see anything that would have us think otherwise.  It took some time for the paralysis to wear off but it did and her day was normal, shoot even a week went by with everything being normal.  Then a cold hit Darcy (snot everywhere!) and a couple teeth decided they wanted to pop thru too.  JOY!  But for Darcy these little but not so pleasant hiccups multiply in her tiny head and cause more stress which then are trigger points for her seizures, so naturally she would start having them.  These particular seizures weren't like ones we have experienced with her before, and trust us she has been having these since she was three months old and about every ugly kind has shown their face at least once.  Which brings us to this week (my nemesis), she's had now a handful of episodes this week and tonight was another long (which leads to me to my breaking point).  I've been keeping her Neurologist up to date on everything, and he has ordered lab work to look at her drug levels now, an addition of medication to her existing meds and then an EEG (which will be next week).  Darcy is definitely the strongest most determined little nugget, and though I may be breaking she is still so strong and showing me that we don't quit! 

So, now you can get a quick run down of why I'm reaching out for Prayer Warriors!  Our little girl will get thru this, she always does but it definitely doesn't go without set backs and a lot of trial and errors from everyone on board.  I wish there was so much more we could do but like I said previously we are at the mercy of these UGLY, WICKED seizures!! 

I promise that my next post will be uplifting.  On a positive note:  Darcy was fitted for braces for her feet, and will be getting those at the beginning of May.  She will be wearing these on a daily basis to give her support as she is learning (and wanting) to walk!  They are the cutest little braces, Big Sister even picked out the pattern and strap colors so she will be stylin'. 

XO
Breanne