He is Faithful!

Hey, Friends!  Forgive me for not updating you sooner concerning Lucy Belle and her flu.  Several of you have inquired as to how she is recovering, and right now, she is doing really well!  Lucy has run a low-grade fever up until today, but really has had no other outward symptoms.  She's still fussy, and I imagine that is from feeling achey from the flu (but that is just a mommy's guess).  Her tummy has been really active the last two days, and we are hoping that doesn't turn into anything either. 

If all goes as planned, Lucy will go back to school on Monday.  This is HUGE for us!  I NEVER would have thought that Lucy would handle the flu outpatient!  Thank you so very much for all of your thoughts and prayers on behalf of Our Little Girl.  I'm just incredibly grateful to the Lord for letting her little body heal at home this week.  

Other than resting and recovering from the flu alongside of Lu Lu this week, I've started digging more into the world of PANDAS, which Henry was diagnosed with this past fall.  Since last Sunday, Henry's behavior has taken a down-turn.  I always hesitate in posting about Henry and his struggles because as his mother, I don't want to overstep my bounds in sharing.  I want to keep every part of Henry safe, including what people think of him and how they see him.  But I also know that you are along the journey with us, and we want you to know how to pray and how to love Henry well.  As one PANDAS mom explains it, although PANDAS is related to the strep virus, it is not "strep in the brain".  It is an autoimmune response to strep, where the antibodies released to attack the strep are able to cross the blood brain barrier (antibodies not the strep bacteria) and the antibodies mistakenly attack the brain, causing inflammation.

It is important to us that you know that Henry has a disease and that he isn't just "acting out".  He has a disorder that takes over and causes inflammation in his brain.  There is little known about PANDAS and very few doctors willing to jump in and treat it at this time.  It seems to be the "big" hospitals that are most interested in PANDAS, and that's where we are now inquiring (Boston Children's, for example).  It's SO incredibly hard to remember the "disease" part when Henry is acting out.  SO. STINKIN'.  HARD.  It would be easier if it were outward, like needing a g-tube or not being able to walk, like Lucy.  Henry looks typical (and is oh-so-handsome, by the way), so everyone expects him to act like a typical six-year-old.  But he doesn't.  

Mike shared with me today that he is concerned with how Henry will handle the real world as he grows up.  It truly is a concern, although I know it is a concern for each and every parent.  But really, will Henry be able to learn to act/react in society?  It's a topic for us to face now with PANDAS on board, and Mike and I want to be armed with the best, most current information out there so that we can help Henry in every possible way.  

Thank you for praying that God would open our eyes and that He would truly bring information our way.  Thank you too for praying that He would open doors and provide opportunities for us to treat Henry properly and to have him seen by the proper doctors and therapists.  

God is so faithful, isn't He?  He is relentlessly faithful, even when we are not; even when we are running from Him.  He lovingly calls us back to His side, often wooing us with His signs of love.  I've seen God's faithfulness so much lately, and I fully expect Him to show Himself faithful where Henry is concerned.  I just need to be patient in the waiting.  


With Hope,
Ryan

The Flu

Lucy Belle has the flu.  I'm sure you all know that it is rampant right now, pretty much everywhere in the country.  It's especially dangerous for the old, the very young and for those with compromised immune systems.  The flu can be very dangerous for Lucy and we've really tried our best to keep her safe from it this fall without keeping her in a bubble. We were all vaccinated and in fact, Lucy's doctor is kind enough to have her vaccinated very early each year in hopes of preventing illness.  This time, it just didn't work, which I've heard is the case for many this year.

I had the flu last week, after all of the family get-togethers over Christmas.  I've had the flu before, but this flu was the absolute worst I have ever experienced.  I ran fever for ten days and didn't even know what day it was for most of the time I was sick.  I HATE that Lucy has this flu because I know how terrible I felt with it!  It breaks my heart to know that her little body must ache, her head hurt and of course all of the other symptoms that come along with this flu.

Lu Lu resting in the ER

Check out Lucy's new kick's thanks to Brandy White, Lucy's "I Run For" Runner 

(her shoes were the talk of the ER)

We spent the majority of the day yesterday in the ER receiving fluids and running tests.  We had to find out what was causing her high fever, and really I was surprised that it was the flu.  Once we had been exposed over Christmas, we put Lucy on tamiflu, just in case.  Apparently though, Lucy is what they have called a "tamiflu fail".  So, there's that (sarcasm).

Lucy slept well all night and is still sleeping now.  She's on continuous feeds of pedialyte to keep her hydrated and we are doing our best to keep her fever down.  Mike and I really don't want to be admitted (who does, really?).  Please pray for Lucy's symptoms to subside immediately.  Pray for comfort for her little body and ease of pain and fever.  Please pray too that we would avoid the hospital.  It's not that I'm afraid of going there, it's just that I know all too well how it will affect Henry especially, since changes are so hard for him.  I don't want to cause any other changes if at all possible.

Thank you for your love, prayers and support!

Ryan