Monday, January 26, 2015

Regrets

I don’t have many regrets in my life.  I try and live every day to its fullest and not worry about what I didn’t get accomplished.

But I do regret that I never learned to sew when I was young and had the time.

When you are a teenager you just don’t have that mindset and wisdom to realize what is really important in life, life is all about you and your parents are just old fuddy-duddies.

My mother is an AMAZING seamstress.

Like top notch.

She made 3 of her daughters wedding dresses and bridesmaid dresses.

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She makes beautiful quilts.

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But I never asked her to teach me to sew.

I can barely sew a button on.

And it is very easy (and convenient) to just ask Mom to mend the clothes around here.  The boys know to just ask Grandma if they need something mended.  And she gets it back to them usually by the next day.

Talk about spoiled! Winking smile

But as I’ve gotten older and wiser I realize that I missed out on having my Mommy teach me to sew. And I still could…..but now my time is so limited and so it is time to pass the torch.

So I asked Grandma if she would do a sewing class for my girls.

And oh.my.word.

This is THE BEST thing ever.

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The girls learned SO much just in their first class. 

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And had so much fun.

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Ava didn’t even get her coat off before she had to show me all the stuff in her special sewing box that Grandma made up for each of them.

They can’t wait for their next class!

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So the sewing skills may have skipped a generation but I’m determined that the girls will become great seamstresses.

Just like their Grandma.

But if you don’t have a Super Grandma in your life who can sew for you I want to highly recommend a friend of mine in CA who sews amazing Barbie and Ken clothes. 

It is soooo hard to find nice Barbie and Ken clothes that fit and are modest.

K is doing commission work for dolls and Barbies.  Check out her stuff HERE.

I personally don’t see how she can sew something so tiny!!  But it all is so cute!!!!! 

She must have more patience then I do! Winking smile

Friday, January 23, 2015

Permission granted

This post over at NHBO really hit home tonight and I have feeling some of my “groupies” need to read it…..soak it in and process.

I know I’m tired of running the race.

I know that I’m ready for a nice long break from running the marathon.

I know I  hate running. Period.

I want to unlace my running shoes and hang them up for awhile.

But alas…..Josie’s needs aren’t going away.

And I wonder the same exact things that Rebecca wonders.

**Does anyone really care anymore?

**Does anyone really want to help?

**Does everyone think we are failing miserably and just aren’t saying anything to our faces? (oh wait, that’s not true as people have said some really hurtful things to our faces.  So I know that people do judge us.  But all I can do is walk away and know that we are doing the very best that we know how to do.)

I have come to the realization that I do “good” with the medical stuff that fits into neat little boxes.

Like Ava’s cleft lip/palate surgeries.

Or Jared’s upcoming surgery.

Those surgeries are cut and dry. (for the most part….Ava’s of course might not have the outcome we desire but it is “fixable.”)  I can plan for the surgery, I have a good idea of what the recovery looks like and we move on. But with Josie’s medical issues they are just continually getting worse and there aren’t any answers or plans.

“Sometimes we have to take a good hard look at darkness to enlarge our reverence for light.”

This post is from Rebecca at No Hands but Ours:

Chronic: The Race Set Before Us

January 23, 2015  by No Hands but Ours

I am coming to terms with it.  This is not passing.  It’s not over after a surgery, or two.  Or after a therapy session, or three.  The first year is behind us, but there are more miles in this marathon.  I’m discovering what chronic means.  I’m learning that adopting a child labeled medically complex truly does mean “continuous care” and it will “require services from different practitioners in multiple settings over time“.

We knew it would be a stretch, but we didn’t expect to unravel completely. We cherished our comfy, together feeling, unaware we were wound around the wrong things.

Life is now a marathon of appointments, surgeries, X-rays, nurse calls, research, MRIs, infection, complications, testing, PICC lines, anesthesia, ultrasounds, therapy, and care taking. And our emotions dart between fear, hope, tears, weakness, hero mode determination, numbness, faith, exhaustion, new joy, and gratitude. Human feelings and supernatural strength step simultaneously together.

So we must face what chronic and complex mean.

The antibiotics will continue.
The appointments will continue.
The care taking will continue.
The “catastrophic” insurance medical cap will be met.
More procedures. More medical supplies. More hurt. More miles to go.

We wonder if our prayer team will start dwindling.
We wonder if people are weary of medical talk and prayer requests.
We wonder if we’ll figure out how to truthfully yet concisely answer, “How is she?”
We wonder if telling the truth is whining, because we should be running the race better.
We wonder if doctors are making the best decisions.
We wonder if God wants us to hope for miracles or accept realities.

Well intentioned people in our lives regularly encourage us with, “It will be fine.” “She’ll be fine.” “You’ll be fine.” But what do you do when your heavy heart simply doesn’t feel “fine” watching your child endure continual procedures, tests and hurts? Should we try harder to be fine?

We wonder how parents of more complex children do it. We think, “Well that family adopted a child with the much harder XYZ disease and they seem together.” Or, “That family has adopted four kids with complex needs, and are adopting three more, what’s my problem?”

But our child’s pain messes with us. When discomfort comes daily, tears flow regularly, painful tests are ongoing, and caretaking that hurts is required, there is trauma to process. Is my faith growing? Yes. Am I feeling blessed and refined? Yes. But there is still trauma to process.

No matter the internal or external pressures we feel, we must give ourselves the freedom and time to feel what is to be felt. To look at the dark parts of the trail and not look away. God is allowing us to walk through something chronically hard. From the world’s perspective our child might end the race “fine”, but a parent’s heart still has steps to take.

……………..

run

……………..

God has intentionally entered us into a marathon. And if I believe He’s always good, precise and intentional, I must consider that He’d prefer I not shut my eyes while running. Not cope, buck up, chin up, cover up, pretend or try harder to be fine. Hurts are part of the race, and I am being asked to face it.

There are silver linings, lessons learned, endurance gained and joyful moments. There is always redemption. The glass is half full. Seasons change and mile markers will be crossed over. I’m finding beauty everywhere and holding hard to hope, but in this less than fine race with a complex child, I’m still rubbed raw.

I used to be coordinated and prepared, but this is not the same race. I’m finding myself often grumpy and sore, though somehow lighter. I’m circling between clarity and disorientation . I’m exploring how to handle chronic hurts. I’m slowing to feel the physical, emotional and spiritual. I’m releasing myself to walk in the dark for a time.

I won’t be getting my finisher’s medal for emotion processing anytime soon, but I can say that my frazzled smallness is illuminating God’s bigness.

Sometimes we have to take a good hard look at darkness to enlarge our reverence for light.

……………..

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……………..

Are you running your own race, adoptive friend?

Adoption long past, but attachment still illusive?
Feelings not yet where you want them to be?
Your child’s medical needs forcing you to learn underwater breathing techniques?
Trauma raging through your home?

Please don’t diminish your challenges because someone faces something bigger. Don’t expect yourself to be together. Keep your shoes laced, but don’t be afraid to see it as hard.

Maybe feeling “fine” is not what God wants for us. Maybe He sets a marathon before us that requires so much stretching, loving and serving that we’re left aching and sore. He has lovingly used adoption to permeate our lives, so let’s not cover ourselves with so many Band-Aids we can’t feel either its pain or its beauty.

……………..

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…let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith… Hebrews 12:1-2

Special thanks to my talented friend, Tish Goff, for the beautiful photos.

Wednesday, January 21, 2015

Answers

Well…..kind of.

Or not.

I have come to the conclusion that the biggest frustration for parents with “unique” special needs kiddos is the lack of answers.

They don’t fit into the neat and tidy boxes that doctors like.  So the doctors just throw drugs and tests at the problem and hope it goes away.

Well you all know Josie has been having strange symptoms.

She has had shaking hands.  She has gained A LOT of weight.  Her face is round and swollen looking. Her menses just won’t stop. (Yes, just yesterday we had breakthrough bleeding again.)

We saw her neurologist on Monday.  And I do like her.  She loves Josie and we have a good relationship.

She listened to me and decided to run A LOT of blood tests.

But here is where I have lost all trust in her.

Dr. Rivera called yesterday afternoon but I missed her call. But she never calls unless something is “wrong” with the bloodwork. So I went online and found Josie’s results.  (I love that about Hershey that I can see everything the doctors writes and see lab results myself.)

So I saw that Josie’s Vit D level was low-20 (range is 30-100) Her Protein was high-8.3 (range is 6.3-8.2) Her Glucose is low at 66 (range of 74-106) Her liver AST is high at 51 (range of 15-46) Her liver ALT is “within normal range” of 35 BUT that has more than doubled since the last bloodwork was done.

So I was prepared when I called her back this morning. 

She tells me: "Josie's Vit D levels are low, I want to put her on 2000iu and then recheck her levels in 3 months."

"And the rest of her bloodwork was normal."

Seriously.  That is what she said.

I had to take a deep breath.  And I just flat out told her: "I checked her results.  I see what is high and low.  I think it would be a good idea to take her off the depokate considering all the symptoms that she is having.”

I understand you can have an elevated result of something and it doesn’t always mean anything.  BUT in my research when you have a low glucose level and an elevated AST test your liver is NOT working properly/is damaged!!!!

And Depokate is on the FDA’s “black list” for having serious liver side effects.

SO WHY WOULDN’T YOU TAKE THESE RESULTS SERIOUSLY??!!?!??

Well.....after I stood my ground she recanted a bit. 

My point was that if her levels are high and she is having ISSUES then something is wrong.

So she finally agreed with me.  And is supporting me taking her off the Depokate and doing bloodwork again in a month.

But of course she holds the "power" and she said that if Josie starts having seizure episodes again she will have to come in for EEG monitoring. 

But I won't go through that again.  It just isn't worth it.  She can just have “episodes.”

But with us having nursing it complicates matters as I have to have written doctor approval for taking her off medicines.  So I HAD to get Dr. Rivera to agree with me so our nurses have the proper documentation to give (or stop giving) Josie her medicine. I can’t just say I want to take her off.

I feel like I have to fight for everything.  I don’t trust our doctors.  It doesn’t matter which doctor it is.  I also don’t feel like I live in America anymore.

I don’t have as much “power” as you may think.  It is all a game.  And a lot of doctors just want to “cover their butts.”

And I’m tired of playing the game.

I’m tired of having to be the one who does the research.

But no one else will be Josie’s advocate.  They would rather just drug her.

And really the doctors hold all the cards.  You kinda just have to go along with them.  Which is sad. And frustrating.  I’m not saying they don’t know what they are doing.  They have gone to medicine school.  But I think that the line gets blurred between the drug companies and the doctors and also insurance companies.  Practicing medicine is not cut and dry. 

And when the child’s symptoms/issues don’t fit into a neat and tidy box they are at a loss on what to do.

I understand that.  And I try and be patient and also admit that I don’t “know it all.” BUT when you have a child who is having obvious symptoms I think you should take the blood results seriously and AT LEAST look into the “why” of why she has elevated levels and look at the big picture!

So we begin a new journey and we will see how it goes.

We will either:

A.) End up in the hospital.

Or

B.) Josie’s body is healed and she won’t have seizures anymore and we can put this behind us.

I’m sure hoping for the second option!

But I’m realistic enough to know that this isn’t “over” yet…..but I’m just thankful I got the doctor’s approval to at least take her off this Depokate for awhile and see how Josie does.

Like I said….time will tell.

Friday, January 16, 2015

Before and After

July, 2014

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Today.

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What did my owners do to me?!?!!?

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It was time to get rid of “the mop” and give Little Dog her first “grown up” haircut.

So last night she looked like this:

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And now she looks like a totally different dog!  When Travis went to pick her up from the groomer, he told Tiffany that this isn’t our dog!

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Her new look is growing on me….but I still laugh and do a double take when I see her bouncing around.  Since she lost like 2 lbs of hair she just kinda bounces around now.

She looks (and is) SOOO tiny!

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I texted Daddy a picture of her and he can’t stopping laughing.

She is still adorbs though. <3

I can’t believe she is 8 months old already!! She has changed SO MUCH since she was young puppy.

And with her surgery coming up (she is getting fixed and micro chipped) it will be nice to have the hair gone.  And the matted hair is gone.

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But it is taking some getting used to!!!

Sunday, January 11, 2015

Grace & Mercy

Steve and I get as much out of youth retreats as the youth do!

We had a great time and it all went really well….both there and and at home.

I saw God’s hand throughout in just little ways but that all added up to a retreat that went really smooth.

There is just something about being with 200 youth worshipping their Lord that sets your heart a fire.

They energize me.

Wake up child. You were born for such a time as this.

It is your time to SHINE!

(The Anthem)

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The Media would have us believing that the youth of today are going to hell in a handbasket.

But I’m here to testify that is NOT true.

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These kids are on fire.

A revolution is coming.

They are Royalty.

They are Destiny.

They have been set free.

And they are going to change history!

(Listen to the full song at : http://youtu.be/GR1giyt7Z1g)

We were reminded that we really need to grasp two main principles:

1. That we serve a BIG God.

2. That God is loving.

And instead of living under the Law of Justice we should live and walk out Grace and Mercy.

Some powerful reminders.

To forgive.

To acknowledge that life is not fair but God has called me to do_______ and __________. (fill in the blanks)

The Cross is about past sin.

The Resurrection is about the future.

So each and every day wake up and ask the Holy Spirit to lead us.

And walk in grace and mercy.

And be the person God calls you to be.

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Our youth are pretty awesome.

Just sayin’.

Saturday, January 10, 2015

In Summer……

Rata ta ta dada dada da doo

Winter's a good time to stay in and cuddle
But put me in summer and I'll be a happy snowman!
When life gets rough, I like to hold on to my dream
Relaxing in the summer sun, just lettin' off steam
Oh the sky would be blue, and you guys'll be there too
When I finally do what frozen things do in summerrrrrrr

(Ok, ‘fess up….how many of you continued on with the song!??!)

Kristoff: I'm gonna tell him
Anna: Don't you dare!
Olaf:
In summerrrrrrrrr!

Summer PLEASE come quickly.

It is freezing cold in these part again.

14 degrees with a negative wind chill.

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And of course on the coldest weekend it just so happens that it is our annual DOVE youth retreat.

And since we hang out with the youth I guess they think we are needed at a youth retreat to “supervise”. Our kids are angels.  They would be fine by themselves. Winking smileBut Steve took Friday into Saturday shift and I’m going Saturday into Sunday.

So I soon have to leave my nice warm woodstove (which is way harder to keep going then it looks, it was 59 degrees in here this morning! That is TOO cold for me!) and go relieve Steve and hang out with some teenagers.

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And I was exhausted before I even get there since Miss Willow seems to not know how to sleep if she is in a room all by herself.

She barked ALL.NIGHT.LONG.

I honestly don’t see how a dog can bark that long.

(And I did bring her crate upstairs but she still barked.  So I took her back downstairs figuring she would stop eventually…..nope.  She really missed Logan I guess.)

I caught her sleeping then at lunchtime but I quickly woke her up. 

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If Mama ain’t getting a nap in the dog ain’t getting a nap in!

So I leave the “girl only” house and put Daddy in charge and off to the retreat I go.

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I know one thing.

I miss my hubby and I miss my big kids.

We make a great team.

And when half of us are gone the place falls apart!

Friday, January 2, 2015

What a way to start the New Year.

We had a FULL week of doctor appointments.

I purposely planned these so I didn’t have to take Josie out of school.  But it made for a really full and tiring week.

I’m ready for school to start back on Monday!!!!

The week started off with Josie having a 24 hour ambulatory EEG Monday into Tuesday.

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Thankfully we could go up to Hershey to get the leads put on Monday morning and then come home.

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Then go back up Tuesday afternoon to get them taken off.

We did capture two “events.”  We will see if they show up on the EEG.

(I’m not very optimistic but we will see….)

We see the Neurologist on January 19th to go over the results.

Then Wednesday we saw the ophthalmologist about Josie’s eyes.

The eye surgery she had done in back in June looks like it is holding….her right eye still does drift and bounce around but it is better then it was pre-surgery. But the doctor has no idea if it will continue to get worse again or if it will stay this way.

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We see it especially when she is “off” or really tired.

So we just are in a wait and see mode.  We go back in July for a full eye exam and her eye prescription will get changed again as her eyes have gotten worse….but not enough to warrant new lens right this minute.

Thursday (New Year’s Day) was a nice break and we cleaned the house and just rested together.

The day started off a bummer as our washer broke…..but thankfully my awesome and amazing hubby was home from work and was able to fix the wire that broke and had it up and running again in a half an hour.

So thankful for a husband who can fix anything! <3

Today all three girls got their haircut in the morning.

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What a circus.

But so thankful I can take them somewhere local ( 10 minutes away) and who does a great job and is very reasonably priced. ($10.00/girl!)

We finished off the week today at the PCP talking about Josie’s weight gain “issues.”

I was there for 2 hours as she was running way behind! :/

We weighed her and she gained ANOTHER 8 pounds over the past 7 week period. Sad smile

The doctor is now “concerned.”

(And over that 7 week period we cut out EVERYTHING and anything “extra” in Josie’s diet….so we know it isn’t food related.)

Dr. Carlson did finally admit that Depakote causes weight gain (which I knew) but said the birth control weight gain is usually only “water weight” and wouldn’t contribute to this much weight gain.

She now is willing to give us a referral to the Endocrinologist. But she isn’t hopeful that we will find any answers there.

She said it “might be” an adrenal issue.  And we probably should rule out and get Josie tested for Cushing's disease.

She made it quite clear that she really doesn’t think it is that…..

Whatever.

Can you sense my frustration and cynical feelings towards the whole situation!?!?

In all my research the only thing that “fit” is Cushing’s. Josie’s body is producing too much cortisol.

That was my thought all along.

But it might not be. I might be wrong.  We probably won’t ever have an answer but we should AT LEAST try.

Unfortunately we “lost” a good 3 months since my concerns weren’t taken seriously and now have to wait for the Endocrinologist to have an appointment open up.

If it is a 6 month wait then Dr. Carlson said she will start the blood work process herself….but she would rather let the endocrinologist handle it as it is a tricky test to read (or so she says.)

But the signs and symptoms just fit: (I put Josie’s symptoms in red)

Common signs and symptoms involve progressive obesity and skin changes, such as:

  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face), and between the shoulders (buffalo hump)
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne
  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

We went into all these doctor appointments healthy….I’m just praying we didn’t pick up anything while we were at all these waiting rooms this week!!  SO many people were sick!

You better believe I’m doing the Vitamin C, Zinc, oils and hand sanitizer regiment. lol

So once again we have more questions than answers.

But I’m getting used to not having answers and if it really is something “serious” it will continue to get worse.

Or the weight gain might “just” be from the medicine.

Time will tell.

Thursday, January 1, 2015

My word for 2015….

At the end of each year I try and do some reflecting and pressing in to the Lord on what He would have for me in the upcoming year.

At the start of 2013 I was given the word: Redemption.

2014 brought Hope.

And a few weeks ago I blogged about how we are in a resting and healing state.

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So when I was praying about our word for 2015 I really was expecting it to be rest…..

And I guess it kinda is.

The word for 2015 is: Abide.

To abide means to remain, to continue, to stay the course. 

To remain faithful.

A good synonym is: to persevere.

It is a good word for me to reflect on during this resting and healing time. 

To just continue on.

To continue to put one foot in front of the other. To remain faithful to what God has called us to do.

In the hard.

In the frustrating.

In the loneliness.

And to just continue to heal and rest.

He is all we need. He is our vine.

Remain in me, [Abide in me,] as I also remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me. John 15:4

One thing I’m trying to do better at this year is take my journal to church every Sunday and take notes.  I usually do take notes on the back of the bulletin….but then it is hard to find time to transfer that good information into a permanent location. (So I have lots of good notes just loose on my desk, not very “helpful!”)

And so I encourage you to take notes from your Pastor’s sermons also.  Our pastors “should be” getting their words from the Lord, (at least we are trusting that they are in the Word and asking God for direction on what to share each Sunday!) and if that is the case than we really should sit up and pay attention more! (and not be on facebook during the sermons!)

To honor our Pastors and honor the Lord by writing down and really processing what they are imparting to us. So I’m being more intentional in writing in my “Wisdom Journal” in 2015.

Wisdom quote

This past Sunday, Pastor Tom gave some really great reminders on what it means to be wise….Or as I’m calling them: My Spiritual Resolutions for 2015.

Reminder #1: Wise people strongly affirm that there is a God. (Ps. 14:1)

**In what ways do you affirm your belief in God??

Reminder #2: Wise people believe that the fear of the Lord is the beginning of wisdom.

**In what ways do you practice the fear of the Lord in your life as a form of wisdom?

Reminder #3: Wise people have learned to make the most of everyday (Ps. 90:12)

**What will help you make the most of everyday???

Reminder #4: Wise people become increasingly aware of life’s many seasons (Ecc. 3: 1-8)

**What season are you in at the close of 2014??

Rabbit trail:

I’m reading a very good book (but hard to imagine what Kara and her family are going through) called The Hardest Peace. In it Kara shares part of a sermon her husband, Jason, wrote:

“We want suffering to be like pregnancy-we have a season, and its over, and there is a tidy moral to the story.”

I’ve come to sense that isn’t what faith is at all. What if there never is an end??? What if the story never improves and the tests continue to break our hearts??

Is God still good? How do you seek hope without forgetting the reality??”

I found this very timely for me to the process….my hope and prayer is that we can accept the suffering and hard times that we have gone through (and we are still walking out) as a vital part of our story and that through it all it will ultimately lead to beauty.

Reminder #5: Wise people come to grips with what is most important in life.  Put first things first.

**What are the 3 most important things to you in your life??

Reminder #6: Wise people have learned to make a regular spiritual inventory of one’s life. (Ps. 139: 23,24)

**What change can you make in your daily life that will give room to the Holy Spirit to speak more often to you??

Reminder #7:Wise people are willing to forgive as well as be forgiven.

**Are there people in your life that you need to forgive?

Reminder #8: Wise people come to the Lord with the gift of their whole selves.

**What change will you make this coming year to more fully give of yourself and all God has given you in service to Him??

Some deep and hard questions.

But take a few moments and reflect on these questions and how you can either become more wise or change some things in your life so you can reflect His wisdom more in 2015.

And may you have a joy-filled, blessed, real 2015.

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