This Week, This Week, This CRAZY Week . . .

It's only Monday, right?  Even so, it has already been a crazy week!  

Mike and I spent part of the day at the OU ER with Lu Lu. She has a royal, giant bump on her head and we are told to expect TWO black eyes from it:(. Lucy pulled a tray down onto herself (which she loves to do, but we try to not let her do); I wasn't in the room, thus the accident happened.

Lucy also has C-Diff, which she's contracted bc of the four different antibiotics we've tried/used to clear up her awful double ear infections. Now her bottom is on fire while almost constantly "leaking" and her little ears aren't cleared up at all (remember when I told the ENT I wanted to do rocephin shots in the VERY beginning but he didn't think it was necessary? This ALL could have been - maybe - avoided if he had just listened to this experienced mommy!).

On Friday, Lucy will have surgery to clear out everything that's going on in those sweet ears and they will hopefully put the fourth set of tubes in. Lucy will be admitted since she is "high risk", and that is just fine with us - we actually prefer it.

Also on Friday, Henry will have a minor oral surgery, but one that is VITAL to get his PANDAS under control. We can't put it off, thus it's the same day as Lucy's important little surgery.

Because of this, the online auction for Ellie Kate's Helping Hands Fund has been put off for a bit. We WILL be doing it as we DO have a lot more money to raise for NKH families!

THANK YOU to those who have given items to the auction for the Fund in Ellie Kate's name! Your items were a huge success in Boston, at the big NKH Fundraiser, and we are so grateful! And for EVERYONE - thank YOU for your love, prayer and endless support!

Down and Out with a Sick Little Lucy

Oh, Brother.  I am worn and weary tonight, friends.  It has been a very, very long day.  Mindy and I took Lucy Belle to her ORL/ENT appointment.  They were very busy, so we ended up waiting a very long time.  The doctor is just so wonderful and quick to listen to me.  He is also good at caring for Lucy and her "non-typical" needs:).

The good news is that Lucy's ears are clear!  Both tubes are in place, which we didn't think was the case.  No ear infections in our girl, thank the Lord Jesus (really and truly).  But . . . Lucy's throat is super red and her tonsils are really big.  She's also still screaming most of the time in pain.  It isn't screaming seizures, and I really don't believe it is a crying spell.  I believe she is hurting, so we have to do our best as a team (doctors included of course) to get to the bottom of it all and get Lucy feeling better.

Our ENT believes that we will likely need to get Lucy's tonsils out.  The problem is that he thinks this will be a very hard surgery on our girl.  He said to plan on staying at least a week (we don't have a date or anything yet, he was just preparing us).  It makes me sad to think of putting Lucy through something so hard, but I also HATE seeing her in pain!

After the ENT, we went straight down for a strep and flu test (boy, I am so very glad Mindy was with me to help!).  You may remember that Lucy has been positive for strep throat for almost a month now.  That has brought on the almost endless screaming, the need for narcotics, the extra doctor visits, the diarrhea, the antibiotics, etc.  In fact, she's been on four antibiotics plus the IV rocephin during our last hospital stay (we didn't swab for strep at that time, but we have all come to believe that she likely had it at that point).  NOTHING HAS WORKED. She tested positive again today for strep.  SIGH.  They even tested Lu Lu for MRSA because of the re-occurring, non-stop infections that aren't responding to ANY of the antibiotics.  As one of our docs said today, Lucy has had all the "big gun" antibiotics pulled on her, and nothing is touching the infection.

Because of the infection and pain, Lucy has had a huge increase in seizures.  We've seen seizures that are more severe, longer-lasting and seizures that are presenting differently than usual.  Because of this, we also visited neurology today, where our sweet neuro upped some of Lucy's seizure meds.  She also thought that Lucy may be having severe headaches or migraines since she's hitting her head and pulling her hair out in pain.  So, we are starting a med for that as well.

So, what do we do to stop all of this???  The Infectious Disease doctors are being consulted and will be added to our team for this situation.  I'm praying they can shed some light and offer some remedies.  They at least have to have some ideas for treatment, right??  We are waiting for those MRSA results, and we are waiting to hear from our team.  I am SO grateful to have all of our specialists at OU Children's where they can quickly and easily share information, confer and make plans.  It's a pretty amazing thing, and I'm anxious to hear what they come up with so that Our Girl can start feeling better.  And God-granted, the increased seizure meds and additional medications will help with the issues Lucy is having.

Here are some helpful ways to pray:

• Pray for Lucy's complete healing
• Pray for her ear and throat pain to stop (her throat pain causes her ears and head hurt)
• Pray that seizures will slow and that Lucy Belle will respond well to the med increases
• Pray for supernatural rest for each of our family members, including my parents and our nurses who are all doing more than their share to help us!
• Pray for God's provision for our family

On a VERY happy note, I'm posting a precious, precious video of Lucy Belle.  This was taken at our outpatient therapy yesterday with our Speech Pathologist, Lendy.  This is just a glimpse of how well Lucy is doing developmentally!  I wish I had taken the video longer.  This video is Lucy and her version of signing "more".  We are just thrilled and can't wait to see the other things that the Father will all Lucy to accomplish!  Praise God!  

Tired, Weary and Down and Out . . . 

Ryan