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!

Catching Up is Hard to Do

It's True . . . Catching up IS hard to do, especially when life happens so quickly, so fast and with such intensity.  Maybe that's why Facebook is so wildly popular - you can post snip-it's of updates on your life without necessarily going into great detail.  It's easy on the author AND the reader, right?

This Blog gives us a way of fleshing out our updates, and for that I am grateful.  Even though I may not post as much as I did in the past, we still open our hearts and lives because we believe God has called us to, and to do so in this way.  We want others to see what "real life" is like for special-needs families, for Believing families, for families who've lost a child, for families who face the high possibility of losing a child . . . it's important to me and to Mike that we share and stay open, as we believe God will be glorified through our mess, in spite of our mess, BECAUSE of our mess.  So, thank you for staying with us and thank you for reading!  

Last Sunday, Conner turned 13!  Our eldest child is now a TEEN.  How is that possible?!  At the last final moment, God provided a way for Conner and I to both go to Boston for the NKH Conference and for the NKH Crusaders Fundraiser, where we raised money for the "Ellie Kate Helping Hands Fund".  This special Fund assists families within our NKH Community, and it's something so dear to our hearts.  Many of you donated auction items to this special fundraiser, and I must say, everything was a big hit there in Boston!  We raised close to $800 for this Fund in Ellie Kate's name.  Our goal has been $2,000, so we have a ways to go.  Soon, you will see more information on a Facebook auction, who's proceeds will go directly to this fund which assists NKH Families in need.  Be watching so you can take part and help us raise those final numbers!  

Conner and I had such a blast together - with the NKH families from around the world and even in hearing from the experts on this disease which affects our family.  We loved seeing the gorgeous fall colors, so vibrant and breathtaking!  Conner and I also took the Freedom Trail and visited Plimouth Plantation and the Mayflower II, among other things.  It was a trip we will both remember always and I am forever grateful for the opportunity God gave us!

Once I settled back into "mom-mode", it was clear to me that Lucy still wasn't feeling well - that her ear infections might not be cleared up (she's been through several antibiotics recently to treat them, all to no avail).  It was confirmed that Lucy's ears are still infected but before the new antibiotic could even help, I realized that she had c-diff (which is something that can happen in your gut, esp if you've received too many antibiotics).  Lucy is now being treated for c-diff, but thankfully it IS getting better and isn't nearly as messy as it was in the beginning.

This Friday, Oct 28th, the doctors will go in and take out Lucy's current tubes that have failed.  They will clean out the infection and see what's going on in those little ears.  We hope that new tubes will be placed.  If so, it will be her FOURTH set of tubes.  We will stay the night at OU on Friday since Lucy is high-risk, and since she's had such a hard time with it all lately.

Also on Friday, Henry is set to have minor oral surgery to remove several infected teeth.  This will be Henry's third go at this type of surgery, and we believe his teeth are more apt to breaking-down bc of the strep he now carries in his mouth and throat.  Henry's PANDAS has been flaring TERRIBLY. Times when we see "our Henry", have been few and far between.  We are incredibly ready for Henry to have these teeth treated and taken out, which will hopefully calm PANDAS within Henry's body and brain.

How are we going to handle two surgeries in one day?  I have no idea, but I'm not worried!  I know God has orchestrated it and HE will work it out. Please pray with us that the details and times will all fall into place, as both children MUST have these things done.  Please pray for peace and for healing for Henry and Lucy, and pray for peace for Conner as he trudges through Junior High while we deal with illness here at home.  We covet your prayers.

God has been so sweet and has truly calmed my heart in incredible ways over the last few months.  It's unspeakable, really and it's not because of anything I have done, or haven't done.  He's just brought peace to my heart - a steadiness and a hope; hope for the future - that this isn't "IT".  God has MORE for us - more than just NKH, more than just PANDAS, more than death, heartache, and all that it means to trudge through the world of special needs.  He has LIFE and LIGHT, and He WILL bring it! 

He's reminded me of these promises so sweetly by taking me back to the places in His Word where He has richly spoken to Us before . . .

Thank you, Lord for your RICH goodness and for your FAITHFUL Word!  

We are not worthy, but we are grateful.  

Isaiah 43:1-21 - ESV

But now thus says the Lord,

mhe who created you, O Jacob,

he who formed you, O Israel:

n“Fear not, for I have redeemed you;

oI have called you by name, you are mine.

2  pWhen you pass through the waters, I will be with you;

and through the rivers, they shall not overwhelm you;

pwhen you walk through fire qyou shall not be burned,

and the flame shall not consume you.

3  For rI am the Lord your God,

the Holy One of Israel, your Savior.

sI give Egypt as your ransom,

Cush and tSeba in exchange for you.

4  Because you are precious in my eyes,

and honored, and I love you,

I give men in return for you,

peoples in exchange for your life.

5  uFear not, for I am with you;

vI will bring your offspring from the east,

and from the west I will gather you.

6  I will say to the north, Give up,

and to the south, Do not withhold;

bring wmy sons from afar

and wmy daughters from the end of the earth,

7  everyone who is called by my name,

whom I created for my glory,

whom I formed and made.”

8  Bring out xthe people who are blind, yet have eyes,

who are deaf, yet have ears!

9  yAll the nations gather together,

and the peoples assemble.

Who among them can declare this,

and show us the former things?

Let them bring their witnesses to prove them right,

and let them hear and say, It is true.

10  z“You are my witnesses,” declares the Lord,

“and amy servant whom I have chosen,

that you may know and believe me

and understand that I am he.

bBefore me no god was formed,

nor shall there be any after me.

11  cI, I am the Lord,

and besides me there is no savior.

12  I declared and saved and proclaimed,

when there was no strange god among you;

and zyou are my witnesses,” declares the Lord, “and I am God.

13  Also dhenceforth I am he;

there is none who can deliver from my hand;

I work, and who can turn it back?”

14  Thus says the Lord,

your Redeemer, the Holy One of Israel:

e“For your sake I send to Babylon

and fbring them all down as fugitives,

geven the Chaldeans, in the ships in which they rejoice.

15  I am the Lord, your Holy One,

the Creator of Israel, your King.”

16  Thus says the Lord,

hwho makes a way in the sea,

a path in the mighty waters,

17  who ibrings forth chariot and horse,

army and warrior;

they lie down, they cannot rise,

jthey are extinguished, kquenched like a wick:

18  l“Remember not the former things,

nor consider the things of old.

19  mBehold, I am doing a new thing;

now it springs forth, do you not perceive it?

nI will make a way in the wilderness

oand rivers in the desert.

20  The wild beasts will honor me,

pthe jackals and the ostriches,

qfor I give water in the wilderness,

rivers in the desert,

to give drink to my chosen people,

21  the people whom I formed for myself

rthat they might declare my praise.