Monday, November 4, 2013

More ACTH....

Often times I sit down on Mondays to update you all and then forget where we left off!  Sometimes the days and weeks just all blur together.  It's possible that I will end up updating you all more now so that I don't lose track of what I need to tell you.  Really it takes me 15 mins to go back and re read what I wrote the last time!  Which will either be annoying or welcomed depending on how much you like my updates :)

Ready to head to PT.  Looking very swollen. :(
We had a wonderful Halloween.  If you're my fb friend or follow me on IG some of these are repeats!

Super girl with her Superhero brother!

Our crazy family!
Trick or treating crew minus a couple.  The 3 superhero's were too cute trick or treating together!

Friday we had Riley's EEG.  All went ok.  We didn't have to stay overnight so I was pretty happy that what I told Riley this time was true.  No needles and no staying at CHOC.  We've noticed that Riley's anxiety starts to increase when we drive to CHOC.  As soon as we get off of the freeway she starts drooling more and breathing more heavily.  I've tried taking different exits and going through different entrances but, she still knows when we are headed there!
Getting ready for the EEG machine.  Looking at mommy like really this again.
All bandaged up for the EEG.  You can really tell how swollen Riley is in this picture.

I had a call this morning from the neurologist's office that I just missed (and of course it was the doctor) so I am waiting to talk to him about the EEG at some point today.  Hoping for decent news and nothing too surprising.  I'd assume if it was a pressing issue we would have been called Friday.

I also made a new bff Friday.  She works in Riley's neurologist's office.
I could seriously hug her and owe her a gift basket of some sort.  You see all last week I was having a difficult time getting through to the staff at the neurologist's office that I needed certain things done and needed answers.  So Friday after the EEG we drove across the street, I parked Riley and her nurse outside of the office, and I just stopped by.  If I've learned one thing working in sales it is that more gets accomplished face to face then over the phone!

I encountered another rude lady that works at the front desk when I walked in. And by this point I'd had enough  so I  just blurted out that Riley was on a med that we were told we couldn't "ef" (yes I said "ef" not the real word) around with and I needed answers now.  Not tomorrow when they would be closed, not later that day but, now.

In comes Gina (I changed her name for privacy purposes) and seriously it was like an angel was sent that understood everything I was saying and was ready to help in any way possible.  I left with dosing instructions for the ACTH, an order for the lab, promises of a follow up call (we've spoken no less then 15 times since Friday) and the peace of mind that if I needed anything Gina could help.

Why was this all so important to me?  It was decided on Tuesday that because Riley was having breakthrough seizures again, she needed to go back on the higher dose of ACTH.  This was given to me verbally over the phone though with no further instructions.  I waited and waited for the promised fax that was supposed to be sent.  And like I suspected it never was.  There was no way we were going to play the what to give game with this medication and I needed explicit instructions so that our nurses could actually give Riley the extra dose (Ya know, Doctor's orders).  Apparently, this is something that some people in the office didn't take as seriously as we did!  Add to this the fact that Riley's specific neurologist is on vacation and I wanted to scream...

 So Riley has been back on the higher dose for a week and we'll try again tomorrow to start titrating her off of the ACTH.  As it stands now she will be on the med until mid December which makes me very nervous about her upcoming CI surgery.  If you recall before I said that everything needed to fall in to place for the surgery to take place.  That included the ACTH treatment working.  With the added week of medication I am not so sure where we stand.  But, instead of worrying about that now, I am just going to focus on getting through November.

Finally snuggles on Sunday night with mommy & daddy.
Friday afternoon/evening it was apparent that we were all getting a family cold.  It hit Logan and then Dave and then me followed by Mason.  Seems Riley has been spared for now.  We were extra precautious over the weekend and really didn't even get to hold her as we didn't want to spread any of our germs to Riley. 

The family cold made for a long weekend around the house but, thankfully we all seem to be on the mend.  Yesterday I was even able to take Logan on a mommy date to see "Free Birds".  Super cute movie that we both really enjoyed.  Although, my plans to get Logan to eat turkey this year may be foiled now!

We're back to the grind today.  My phone started ringing early this morning.  Gina was the first call of course :) followed by ph probe/bronchoscopy scheduling, medications, delivery confirmations and therapy rearranging.  These are the days I am thankful for unlimited calling plans!

I'll leave you with a video from therapy last week.  It's of Miss Riley lifting her head 100% on her own and holding it, on her own.  Doesn't seem to be that big of a deal but, I spend a ton of time trying to explain to doctors what she can do.  Most only focus on what she CAN'T do.  Encouraging I know.  Riley CAN do things.  Riley IS doing things.  And as far as I am concerned the sky's the limit!  So here's my video proof for our next appointment.  Yes, I am that mom  :)

Riley lifting her head

Mr. sick saying Yay Sissy!  One of Riley's biggest cheerleaders!

Fight On! 
Dave, Megan, Logan, Mason and Courageous Riley


  1. Go Riley!!! She was really holding it there! So proud of our little fighter!

  2. this is my first time commenting way to go riley.

  3. Yay Riley! She's a strong little girl, that's for sure.