Lucy - Health Update

My Precious Lucy-Girl.  I haven’t posted or shared much about Sweet LuLu in a while.  We just got home from a long afternoon/evening in the ER and we have some big changes coming up where Lucy’s health is concerned.  It’s been so long since I’ve shared about Our Sissy, I felt it was it was time.  Lucy needs the prayers and I need to rise above my fear and shame. 

The fall seemed consumed with getting Henry’s IVIG treatment, which miraculously took place right before Thanksgiving.  Then came December, Ellie’s Month of Reckless Love, and we were focused on Ellie Kate’s memory as well as spreading Reckless Love in her name.  We are humbly grateful for everyone’s support and participation during these months!  I’ve hesitated going into details about Lucy while so many of you have supported and loved us in other ways (again, with the shame and fear). 

FEAR: Laying it all out there – sometimes I feel like “the person who complains all the time” or, “the one who always needs something”.  When I share pictures of Ellie Kate or Lucy, I can feel like others may think, “Here come more pics of the little dead girl, again!” or, “If I see ONE more picture of a sick little girl . . .”.   I NEVER want to be a “Debbie Downer”, ya’ll.  It crushes me to even think that could be a possibility.  It’s a fine line, wanting to share our special journey with others, while not coming across the wrong way.  It makes me sick to think of being seen in that light, especially because I feel called to share.  

With all that I am, I feel the world (The Church, in particularly) needs to know how to better love and serve those with special needs, those who are medically-fragile and those who’ve lost children because of those things.  I must continue to share, swallowing my pride where this is concerned.  I am choosing NOT to let fear control me from sharing the not-so-pretty things about life. 

LUCY: From the beginning, Lucy has struggled with bladder issues and has suffered from frequent Urinary Tract Infections.  Those UTI’s have increased over the last few years and in 2018, Lucy had approximately 8-10 UTI’s.  After extensive testing, we know what causes the infections in Lucy – she retains her urine.  We aren’t sure if Lucy “holds” her urine on purpose or if her brain simply doesn’t give her bladder the right signals, preventing her from urinating at appropriate times.  At this point, Lucy’s having back to back infections.

Big Girl, holding one of her Christmas gifts this year!

INFECTIONS: Last Summer, Lucy suffered from a few UTI’s as well as from C-diff, an infection of the intestines.  In Lucy’s case, this infection was caused by the frequent use of antibiotics, trying to treat her UTI’s.  C-Diff isn’t something you want to have – it can be incredibly dangerous, deadly, and the more time one spends on antibiotics, the more chance one has of getting c-diff.

In the fall, doctors brought up the possibility of using a urinary catheter on Lucy, here at home.  We are NOT afraid to use a catheter on Lucy here at home, but the reality of it all seemed impossible.  She is our, “Wild Cat” and much like her Big Sister, likes to bite, kick, scream, hit, bang, pull, and anything else she can do, to stop others from holding her down for any type of procedure, especially for catheterization. 

PAIN: The infections are incredibly and understandably very painful for Lucy.  She cannot sleep well because of the pain and bladder spasms, even with medication and treatment.  She can’t get comfortable during the day time, often crying hysterically when she urinates.  It’s absolutely heartbreaking because Lucy doesn’t at all understand what’s going on with her body.  No matter how I explain it or what I might say, she cannot be comforted by the meaning of my words because she mentally cannot make sense of it all.  Lucy just knows she hurts; badly, excruciatingly at times. 

 

SOLUTIONS?: Lucy’s been running a high fever, and any type of fever is rare for her.  With the fever showing up last night, I knew something was brewing and figured it must be another UTI (we finished antibiotic treatment for the last infection just two weeks ago).   Other symptoms popped up so, after a call to her pediatrician, we decided to go ahead and take Lucy to the ER.  Per usual, they were great and got us right in, taking cultures, giving fluids and running a general antibiotic.  Sure enough, Lucy has another UTI.  No wonder she’s just miserable, bless her heart. 

We’re now faced with one probable solution: a suprapubiccatheter.  It’s something new.  It’s something surgical.  It’s something that will be an ongoing surgical commitment.  We have no experience with this whatsoever, unlike most things we’ve dealt with up until now.  BUT, we are ready and willing to learn, especially for Lucy’s benefit.  I will keep you posted on Lucy’s health and I hope to do so more often than I have been, pushing myself beyond fear. 

Daddy Snuggles on Christmas Break

PRAISE:  I am SO grateful to be able to post about Lucy in this way, to have the privilege of asking for prayers for her body and mind!  Last winter, especially was excrutiatingly difficult for Lucy as she continued to waste away, despite our best efforts.  Her body started failing and we had prepared our hearts, especially around Christmas-time.  God has SPARED our Daughter, and we give HIM alone the glory for this!  While Lucy is still far behind in weight, she has more good times than bad, the total opposite of last year at this same time. 

THE SUM:  Tonight, in the ER and now at home, I’m reminded of how precious and fleeting life truly is.  Yes, this same message is shared so often, almost everywhere we look.  HOWEVER, I encourage you to truly, STOP and take a moment to think about it.  We get frustrated and flustered, caught up in the activities of life and what we feel are urgencies, making us worry, fret, lose sleep, and lose happiness in this life.  This life is ONLY about loving God and loving others; those are the only things which are eternal - everything else .  .  . EVERYTHING ELSE will melt away, falling to the wayside, for us to never think of again.  

Whenever you have the chance (and I mean really, whenever!) reach out and give a gentle touch, give an encouraging word, give a hug; share, “I love you”, or give “pat-pats”, like EK and Lucy do to those they like.  It can be over in a moment.  It can change, drastically.  ONE MOMENT.  OVER.  DONE.  FOREVER. And all that you’ve done will be IT – the sum of your life.  Are you satisfied with that sum right now, at this very moment?  You have the power to change it.  Trust me, you won’t EVER regret showing Reckless Love. 

Ryan

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.