Friday, January 30, 2015

Birthdays Galore!

The end of January/beginning of February are always very full around here.

Josie’s birthday is today…..she turned 12!

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Her day started out fun with some Batman pancakes for breakfast and a very special present from Nurse Laura before she headed off to school!

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Then tonight the family came over for a little party. 

My niece, Olivia’s 9th birthday is tomorrow…..she is the cutie on the left.

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And Lena’s 9th birthday is coming up on Thursday, February 5th….so we had lots to celebrate tonight!

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And since Jared’s surgery is scheduled on Friday we decided to combine their birthdays into this (very full but fun) weekend!

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Lena’s nails matched her cake!!! There is a reason for that…..her Aunt Joy has a special surprise in store for Lena and Ava tomorrow!!!

What is it Mom!?!?!

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I’ll give you a hint…..we may just be going to Arendelle!?!?!?!?

AHHHHH!!!!!!! The anticipation builds!

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I think Aunt Joy is as excited as the little girls are !

(Stay tuned for pictures tomorrow!)

Grandma got the all the girls a sewing machine to share! They were all THRILLED and LOVED trying it out.  They will use this in their sewing classes I’m sure! <3

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It really is a great sewing machine to start on.  It is well made and isn’t digital. I have a feeling the girls are really going to use this a lot to make some neat projects.

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I wasn’t sure what to get Josie this year……she is so into Batman that I thought she would really enjoy having some “cool” bedding for her bed.

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I was right.  She loved it!!! And her new Bat Bear is right at home!

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It was a fun day….but a tiring one. The washer broke today and my special birthday Chinese supper was totally gross.  I tried 2 new recipes…..big mistake.

But I’m thankful that we can make some fun memories with the girls this weekend. The little girls are going to a special Frozen tea with Aunt Joy and then we are all going bowling in the afternoon.

Phew.

I have a feeling this weekend will be more fun then next weekend….. next weekend I’ll be playing nurse to my 2nd born son. But so glad that he can get his legs fixed!

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!!!