Prayers for Henry

Friends, we covet your immediate prayers for our Sweet Henry.  Henry is in a PANDAS flare and has had a terrible "episode today", which lasted from around 10am-5pm.  Henry finally fell asleep and has stayed in deep sleep since that time, and we couldn't be more grateful. 

 "Thank you" to everyone who has been praying specifically for Henry this afternoon - you have know idea how much it encourages MY heart as Henry's momma.  When I was holding Henry as he was biting and kicking me, I got a glance of the responses to my FB post about it, and my heart was instantly lifted.  God has surrounded us with such an amazingly loyal group of friends, family and even strangers who so faithfully stand by our side.  The Lord knows we couldn't do this without such a great support team, and that includes all of you.  


Please continue to pray for Henry.  Things got pretty serious today, VERY serious in fact.  My Dad was over helping and Mike had to come home from work.  It was intense, scary, maddening, frightening, discouraging, and caused us all to run straight to The Throne to surrender it all, including our Precious Boy (the Lord keeps putting the image of Abraham and Isaac in my head).  We don't know what's going on inside of Henry's body or mind, but God sure does.  It isn't just something people say, folks - it's absolutely true.  God knows every single cell in Henry's body.  He knows what is functioning and what isn't.  He knows the quirks and mis-fires, and we are asking Him to show us where they are as well.  


Ways to pray: 

1.  For ease of Pain for Henry - his brain swells in a PANDAS flare and he has severe headaches.  His body is on sensory overload as well, meaning that every little touch is multiplied by a thousand.  What feels like a brush of the arm to you or me can feel like someone trying to BREAK his arm.  I know it may sound out-there, but I assure you, this is the state in which Henry has been today.  

2.  Pray for PEACE - specifically, peace over Henry's little brain.  He is so intelligent, so smart, excelling in every subject at school - but in a flare, he cannot think straight and his thoughts are mis-firing all over the place.  His mind has no peace and neither does his body.  He cannot stop moving and that isn't an exaggeration.  Henry will become enraged and start throwing things, breaking things, etc all bc his mind is crying out for PEACE.  

Please pray for PEACE over our home as well.  Peace is my favorite word and theme for this time of year, Ellie's Month.  I long for peace to take over during this difficult month, and I'm longing for it even more now!  I want the peace to be so heavy that we FEEL it when we walk in the door.  

3.  Pray for protection - Henry has been involved in some dangerous things today.  He could have been very hurt in a multitude of ways, but thankfully he wasn't.  We want that protection to continue over Henry.  That angels would surround his every coming and going from our home and that he would be protected from every car, from every person, from every object that could cause harm.  

4.  Pray for wisdom and guidance - we are DESPERATE for guidance, ya'll.  I mean, truly desperate.  We don't have one doctor to spear-head Henry's PANDAS at this time, but that isn't because of lack of effort on our part.  We need to know what to do and we need to trust the person telling us what to do.  Of course the Holy Spirit will lead us, but we need medical professionals who are as concerned about H as we are!  We have been incredibly dissapointed and even let-down by his current psychologist, which of course hasn't help this situation in the slightest.  Should we try IVIG treatment?  We need a doctor to approve that and we would need Henry to be admitted asap.  Should we "wait it out"?  Do we immediately take him to a specialist out of state, and if so, how will God provide for that??  

Please pray for Henry's other caretakers, including his teachers at school.  Would you pray that God would put the right words in their mouths, for just the right times, just for H?  Would you pray that He would lead their actions to be those that would ONLY benefit Henry?  Would you pray for endurance and hope for each of them as well?  

5.  Pray for Conner and Lucy - Conner already has expressed that we must give a lot of attention to his brother and little sister, and for the very first time, he's starting to feel left out and left behind.  Please pray against these feelings in Conner.  Pray for confidence in himself and confidence in us as his parents.  Pray that Conner will feel well-adjusted and extremely loved; safe and sound, wanted.  We do our very best to show him this, but lately H and L truly HAVE demanded all of our attention.  Lord, please lift burdens off of Conner's heart and mind!!  


Thank you for praying.  As always, you will never know how much it means to us - at least this side of heaven.  Thank you for standing beside us and with us, especially through the roller coaster loop of PANDAS and all it entails.  


Choosing Hope because of Christ -
Ryan
*********************************************************************************
For more information on "In Honor of Ellie Kate - A Month of Reckless Love", please visit the following blog post:  http://www.thewonderfullymadelife.blogspot.com/2015/12/a-month-of-reckless-love-its-only-just.html

FOR WAYS TO GIVE while receiving a tax write-off (simply click on the links in blue): 

*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and ALL donations go directly to Lucy Belle and Henry's medical costs.

*Give to OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.

*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more. 

I Don't Wanna Sign Up

Our Henry-Mac is in another PANDAS flare and this time, his behavior has drained me more than I ever thought possible.  I'm forgetting things like appointments and appointment times (granted, we have WAY more appointments than the average family and I need to give myself some grace); I'm so tired all of the time, although I think that has to do with my own autoimmune issues.  NKH, Interstitial Cystitis , and a bad PANDAS flare?  I do NOT want to sign up for this, ya'll.  

Although we've had some really special and sweet things happen, it's hard for them not to be overshadowed by the heavy cloud hanging over us.  I CHOOSE to enjoy the good things while they are here; to be happy when we can, to the fullest extent, because I know how heavy PANDAS is and I know how taxing it is on us.  

For a long time, I've been really patient with Henry.  God has given me a heart for him - the baby God clearly told us to have!  He knew what He was doing by placing mercy within me as a spiritual gift, because I need to exercise that SO OFTEN with Henry Mac.  During flares, it's almost constant defiance that he cannot control.  I know many say, "Just make him obey" or "Make him do it; you are the parent".  But it is so much more than "just" making him do things.  This is a disorder that messes with his mind.  I never know when He will turn around and hit me or run outside with the dog (which happens quite often, even though we try out best to keep this from happening!).  It's walking on eggshells 24-hours a day, and I am more weary than ever.  

I've said that behavior disorders are harder to me than most things we have dealt with concerning the Girls, and I still do believe that. It's come to a point that I physically feel, almost exactly like I've been staying in the hospital with one of the girls for months on end.  That's how tired I am.  That's how worn I am.  That's how taxing this is on all of our family.  It is a constant battle in every way.

It's like I have so many plates spinning and none of them can stop.  I keep dropping them, and they chip and crack, but they still spin.  Life goes on.  Lucy's busy life cannot stop because of PANDAS.  Conner's life cannot stop because of it NKH or PANDAS.  We are just learning to deal with it; I'm learning to keep things spinning, but I'm afraid I haven't been doing a good job.  I apologize if I haven't been able to get back to your texts, phone calls or FB messages.  I'm doing well just to keep my house clean and to know where my kids are at all times.  Thank you for giving me grace as I try to prioritize and keep my family above everyone else.

Really, I just want Henry to be healthy, safe and happy.  That's what we all want for our children, right?  I know Ellie Kate is all of those things and more, as she is with Jesus.  And I know that Lucy is stable and very happy at this point, even though she still is having tummy troubles.  Conner is happy too, and changing into a wonderful, thoughtful young man.  But for Henry - I don't know what else to do to help him, and that's why we are continuing to seek help from many different angles, including from doctors and clinics from out of state.  

Please pray that our patience for Henry will be multiplied.  Pray too that we will have absolute clear direction and insight on how to help our Precious Little Boy.  Mike and I long for peace in our home.  It was there - it had come into our house after Ellie's death - and now it feels like it's been stolen.  Lord, restore peace to us once again!  

 Conner and Henry at the Thunder Game

Lucy and Henry at our friend Emmy's Birthday Wish - 

the Cinderella Movie