Wordless Wednesday

Update

This past week brought some welcomed changes on the medical front. I was able to talk to Natalia's cardiologist and gain some answers to our concerns and questions.

The tiredness should NOT have been chronic, and the doctor agreed that we should take Natalia off of the medication immediately. I also asked her to rate the severity of the leakage, for both last year and this year. With 1 being very minor and a 10 very serious, Natalia was between 1-2 last year. This year, a 3. (I immediately began kicking myself for not calling sooner.)

We value and recognize the importance of medicine and certainly do not shun it, but it is not the first thing we run to, or always the best solution. We try to look at our health in a holistic fashion, appreciating that God has designed our bodies to heal itself much of the time if we are caring for it appropriately, but we also know that our daughter wouldn't be alive today but for the grace of God and the advances made in modern medicine.

It's been a discerning process to know how aggressive we should be regarding Natalia's heart, and we appreciate all of you who have been praying for us. The last two weeks have not felt as emotionally heavy, we've gained clarity to know what questions to ask, and we are seeing God's hand of provision in a multitude of ways.

Through a series of circumstances, she will be seeing a different cardiologist from now on--the one that was our first choice when we moved to PA four years ago in fact. Also, despite my delay in calling the doctor and possibly saving us from a few weeks of all of this, God has been softening my heart and giving me greater patience in the way that I relate to my daughter. For that I am very thankful. (How comforting it is to know that God is sovereign and can use our weaknesses and mistakes for His ultimate good.)

We've noticed an immediate improvement in Natalia's energy level and mood in the last few days. She is once again greeting the dawn in her usual cheerful fashion instead of obstinately burrowing under the covers. She hasn't been as spacey at preschool, and our afternoons at home have been much more pleasant. There are some residual behavorial issues to address, but we expected that.

Thank you again for your prayers for Natalia and for us!

Saying Goodbye

It's been wonderful having Pete's younger brother Wojciech ("Tek") and his girlfriend Ula here this week. (This was the first that we were able to meet Ula. She is so sweet.)

They were able to stop in again tonight and I finally got some pictures to post.

The kids were so sad to have them go...and we're wishing they lived closer too.

But, jobs and busy lives await them across the pond.

So we wish them well and a safe journey back to Brussels.

At least we have webcams and Skype. :-)

Adam

This post originated right after last Thanksgiving. Yup.

That's when the "blemish" you see in the picture above appeared on Adam's right cheek. At first we thought it was simply that...a blemish or bug bite that would go away. Two weeks later it was just as red and becoming more raised and pronounced. Christmas and birthday season hit and we had well-checks for both kids already scheduled for right after New Years. Running to the doctor for a blemish seemed silly. He wasn't bothered by it at all, wasn't running a fever, wasn't sick...

At first, they thought it was a boil. They drained it, gave us an antibiotic. But it never completely went away. There was still a small hard bump under the surface.

Three additional visits later we were referred to a dermotologist because they didn't know what else to try.

It's now been three visits to the dermotologist, and they did a biopsy of it. Adam was a champ through the procedure which requires a needle to numb it, then an 1/8" circular incision to cut out a piece. He didn't even cry, just one silent elephant tear as they were stitching him up at the end. My brave baby. (The doctor and nurses were SO great, you would have thought they dealt with little kids every day!)

The pathology report just came in Monday. Turns out it is ruptured cyst material, and it is a bacteria that normally occurs in ear and sinus infections. Kind of baffling that it is on his cheek, but they put him on a special antibiotic that should clear it up. We're hoping and praying. (It's been almost 5 months!!!)

These past few months I've been reminded of how much we have to be thankful for regarding our health and well-being. My grandfather has been battling so many health issues following his heart valve surgery last month, and we all are hurting for him and my grandma as they navigate this very difficult season in which things haven't turned out as they were expecting.

Sure we've been in a doctor/specialist's office 10+ times since the beginning of the year, but it could be so much worse! It's been a lesson in dependance as we've not known what we were dealing with. But the Great Physician knows each care and concern. Nothing escapes His notice or comes as a surprise, and He is constantly praying on our behalf to the Father. Isn't that good news this morning?!

A Bit Of A Marathon...With Chocolate

We had 4 family dinners this past weekend. Crazy. But good. :-)

Friday night we were at my parent's house with my younger brother and his family. I only got my camera out for the standard "line the kiddies up on the couch with their baskets" shot.

Somehow, while I was behind the lense I neglected to notice my son chowing down on the contents of his basket, shoving candy in rapid succession!!! My hubby grimaced when I told him and we shared a knowing laugh.

Saturday morning I was finishing up my baking for the rest of the weekend, the kids found their hidden baskets of Easter goodies that morning, and then while Adam napped we finished up some odds and ends around the house.

Saturday evening we were with Pete's dad, his wife, her grown children, some family friends, and Pete's brother Tek and his girlfriend Ula, just off the plane from Brussels, BELGIUM. It was a busy night, lots of conversation and delicious food. It was pleasantly warm enough to spill outdoors which was good because the kids had plenty of sugar energy to burn off. I totally forgot my camera at home.

Sunday morning we had a wonderful Easter service at our church, grabbed some lunch at home, then drove to Pete's mother's house for the rest of the day. What a humid day it turned out to be--raining off and on. We took a walk at a nearby park even though it occasionally sprinkled on us. Tek and Ula were there and we all enjoyed having more time with them.

Monday we purposefully stayed at home and had nothing planned except having Pete's mother and Tek and Ula for dinner that evening. I made Chicken Marsala and a big salad, and we finished our meal out on the deck, sipping coffee and making a dent in the box of Godiva chocolates Tek and Ula had given us.

What precious times with family. They go by so fast. We've been trying to make the most of every opportunity.

Natalia

Early in March, I took Natalia to her annual cardiologist appointment. She did pretty well through the 2 hour visit (EKG, echocardiogram, etc.) and there has always been some leakage from the sites where the two main arteries of her heart were reattached after her arterial switch surgery at 6 days old. And every year when we go for her check-up, the leakage has been about the same.

This year her test results showed more leakage/spurting, caused by slightly tightening arteries, putting strain on those old incision sites. They wanted to put her on blood pressure medication to help the arteries relax. (We have not had any restrictions or medication for her since she came home from the hospital at 3 weeks old--just routine checkups.)

Listed side effects from the medication are mainly tiredness and sore throat, both of which we noticed right away. I guess we just expected the tiredness to be at the beginning...not chronic.

We didn't foresee...the bear. The shortened fuse. Scratch that--the non-existant fuse.

She's a determined and vocal little gal, and has never been shy when expressing herself, the good, the bad, and the ugly. But what I've been struggling with, (since I'm the one at home doing the bulk of the disciplining), is how do I allow for real chemical imbalances, yet viligantly shepherd her heart?

I know I am more prone to put my inner sinner on full display when I am physically feeling low. Especially when it is for days on end. Especially with my closest family members.

This little one has been chronically tired for nearly 2 months, no matter how diligently we get her to bed early. She's been a different girl since we started the medication. Very different.

If this new medication is inducing these changes in her behavior, (the frequent explosions of anger, the rebellion and ignoring correction, the regressing on the potty front--though it seems only at home) then how best do I (we) respond?

We do not believe her behavior is caused by the medication alone--but think it is definately heightening her responses. Increasing them to the tenth degree.

I've been crying out to the Lord for wisdom. To know what questions to ask and how best to navigate the confusing and overwhelming medical scene. (We're dealing with her vital organ, afterall.) For God to quiet our daughter with His peace, and give us wisdom how to discipline her. For Him to instruct my heart as I've grown weary at times, feeling like I'm continually walking through a minefield. And to keep my attitude soft and compassionate towards her, not frustrated or angry because of yet another meltdown over something I deem insignificant.

I suspect that for Natalia, life probably feels out of control. She's trying to keep it together all day long, and then the littlest thing feels like too much. Pray that I openly model dependance on the Lord to her. Pray for healing.

She is our gift, our miracle baby. God has a future and a purpose for her life, and He can be trusted at all times.

All Has Not Been Quiet...

...on the Winkler homefront, though my blog has. It has rightfully taken up residence on the back burner these last few weeks.

But, I thought I'd write a few posts this week to share what's been keeping me away.

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Weathering.

*to expose to the weather; dry, season, or otherwise affect by exposure to the air or atmosphere

*to discolor, disintegrate, or affect injuriously, as by the effects of weather

*to bear up against and come safely through (a storm, danger, trouble, etc.)

The word "weathering" conjures up many different meanings, moods, and thoughts, but it fits well with how life has felt lately.

We've been bearing up against the late onset of Spring. Those of you at home with young kiddos can heartily agree.

We've been experiencing numerous physical challenges on the home front. The kids have had 10 medical appointments since January--not a single one for sickness/flu though!

Pete has had one very difficult classroom of kids this semester. God is growing him through this hard time, seasoning him, but it's been stressful.

And people we dearly love are experiencing great loss and grief. Our hearts hurt...

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There have been some definate and prolonged challenges lately, but God has been faithful to bring to my mind past answers to prayer to inspire hope, Scripture to instruct my heart with Truth that fits the moment, and simple pleasures and joys that brighten the day, no matter if the sun is shining or hiding behind storm clouds.

A song I heard while in the car the other day really encouraged me. It's by Laura Story, and I'm going to copy the lyrics here:

We pray for blessings, we pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while You hear each spoken need

Yet love is way too much to give us lesser things

'Cause what if Your blessings come through raindrops?

What if your healing comes through tears?

What if a thousand sleepless nights

are what it takes to know You're near?

What if trials of this life

are Your mercies in disguise?

We pray for wisdom, Your voice to hear

We cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your Word is not enough

And all the while You hear each desperate plea

And long that we'd have faith to believe

When friends betray us, when darkness seems to win

We know that pain reminds this heart

That this is not, this is not our home

It's not our home

What if my greatest disappointments,

Or the aching of this life,

Is the revealing of a greater thirst

This world can't satisfy?

And what if trials of this life?

The rain, the storms, the hardest nights?

Are Your mercies in disguise?

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