Wednesday, June 19, 2013

breaking my silence...

So, here we are folks, putting it all into perspective...letting you in on my personal life these days.
Woof, here we go...

To say that life has been difficult the last few months is more than an understatement. They've been rotten. Hide in the laundry room and cry into a towel rotten. But...today, the sun is shining, and so is my soul. It has taken a while to get here, but I can talk to people without a lump in my throat, and I'm ready to share.

This girl.....


My spunky, sweet, kind-spirited little lady.


I took these photos on her third birthday.
Six months earlier we first started seeing an endocrinologist for what was diagnosed as thyroid issues.
But something didn't seem right. I don't know if it was the doctor's personality, or just God giving me an intuition to make a change, but we requested a new specialist.

To keep a long story short, the new endo was wonderful. 
She was kind, patient with Finley, and also very frank with us.
It was clear to her we were not dealing with a thyroid issue.

After many tests and many long days in the hospital for Fin, it was diagnosed that she has a very rare genetic disorder. 
{To try and keep a bit of privacy for Finley as she grows older, I don't want to go into too much detail.
If you would like more specifics, email me anytime and we can chat.}

So rare, in fact, that no one at Children's or Gillette here in the Minneapolis / St. Paul area have ever had a case of it.
We are dealing with genetics, endocrinologists, and orthopedics....
and although everyone has heard of it, no one has actually had a patient with Finley's diagnosis.

A few of her symptoms include extremely high estrogen levels, brittle bones, short stature, and a long list of other symptoms that haven't yet shown themselves, and we're hoping they don't.


She has been such a trooper. The first few tests were great. 
She could take an iv like a champ, she let them poke around all day long, and kind-of loved the attention.


Thank the Lord the staff at Children's is so wonderful. They made her feel so special and in control.


But it didn't take very many days for her to be tired.
Tired of being pushed on.
Tired of having iv's.
Tired of giving blood.
In all honestly, she panics at the smell of rubbing alcohol.


And this sums up where we were feeling a few weeks ago.
Spent. Exhausted. Tired. Burnt out.

I know for many families, they have much harder days, weeks, and months.
We were lucky, we were able to sleep in our own beds.
We were able to know that she was going to come home with us.
We are thankful.
But I can't lie and say it isn't hard.

A piece of my little lady's innocence is lost.
When her estrogen spikes, you can see it in her eyes, and she's no longer Finley, she has no control over her personality.

But we're dealing.
Right now, we are taking a break. We were told to hold off on any treatment options until we figure a little bit more out, so right now, we wait. In the late summer, we plan to bring her to Mayo clinic for hopefully some more difinitive answers. But Finley needs a break. She needs to play. And we feel fortunate she has the opportunity to just be three and a half for a little while.

Our health history has been a huge struggle in our family.
We found out at a young age that Jacks has Sensory Processing Disorder and ADHD.
He is a healthy kid, but he does need special help, and some days are a huge battle.

Then, early last November, Harlow woke up with this:


After a day of testing, we found out she has lymphatic malformations.
{This was the picture I sent my Mom in a panic. Over the course of the next two days it tripled in size.}
After a few days, she was in for surgery to remove the cyst.



{prayers and lullabies before surgery}

They found not only did she have her large cyst, she has many in the muscle tissue underneath.
Because they didn't want to disrupt her breast/muscle tissue, they left them in.
Because they left them in, they became infected.

This resulted in her wound opening and draining at daycare, and they called an ambulance.
We rushed there, got her in to the ER, and they sent us home.
This happened five more times.
Finally, after FINALLY listening to me, she was put on the correct medication and started to heal.

But there was a catch...
She was little. She was sick, and they wanted to heal her.
This meant waiting until her first birthday, putting on some weight, and then starting chemo.

Now, before you freak out {like I did} just know....she healed on her own.
She looks great. There are no plans for chemo at the moment, and we're hoping it stays that way.

She most likely need a few surgeries to help her skin stretch and her body develop, but my word, we are thankful she is healthy. 
She's a tiny little being {not even on the charts for weight}, but she's healthy.

In the midst of it all, a month ago, I unexpectedly needed my gallbladder removed.

{clearly on drugs}

Like I said, it's been tough, but things are better.
I can't begin to thank all of the people that have sent me notes that they were praying.
So many people have helped with meals.
My mom and sisters have brought me out of deep dark holes.
My girlfriends have sent flowers.
We have literally been touched beyond words with the kind hearts around us.

And we know, even though it may be a long road ahead of us, we are good.
Brad and I are strong. We are in love. We can handle hard times. And we believe there is good.

That's not to say it won't rain every once in a while.

{picture taken during a long walk between Fin's tests}

18 comments:

Mergen's said...

Rachel, I have been thinking of you guys a lot lately. Thanks for the udpate, and I will keep the the prayers coming.
Mandy Mergen

Jodee said...

Oh my word! You poor thing! How much can one sweet family take?! Sending big hugs and prayers your way.

Jen Cristallo said...

Rachel and Family, my heart and prayers go to you. I love watching your kiddos grow via your pictures and posts, seeing the love you and Brad share. You are strong and have such unshakable faith. I as well believe there is good and you deserve it.
Many hugs and prayers.
Jen

Carissa said...

Continued prayers for you my friend! Think of you daily. I love you and your sweet little family. Stay strong and positive!
XOXO

Meredith said...

Rachel and Brad, your strength and positive outlook, your focus and your determination to face your incredibly hard and heartbreaking challenges is in a word - inspiring. I send my thoughts and prayers for you two, for good health and for your beautiful children. Take care.

Meredith

Terry Peterson said...

Rachel and Brad, you and your children are in my daily prayers ... it goes like this ... Thank you Jesus for giving Rachel and Brad strength and discernment of your will for them as they love and care for their children: Jackson, Finley, and Harlow; and Thank you for giving all the kids long, healthy, happy and joyous lives. We love you and your kids! Terry and Ellie

Jeremy Hove said...

Thanks for posting this Rachel. Your family is so strong! I love you guys and think of you often. If there is anything Mel, the kids and I can do, ever, please let us know.
J

meetFOAF said...

Ann Flood here. I can imagine how you feel!! Well, not exactly, but somewhere in the realm. Email me ann@meetfoaf.com or call/text 9522002100 - love to talk Mayo - I've navigated it many times. Or just have you all over sometime soon! I have 3 excellent kid-watchers for your 3 - and we can talk and have an adult beverage. (-:

Pastor Paul said...

Thank you so much for this medium to be able toadd to the circle of love and support that surrounds you all. You continue to be in our prayers. Always trust that God is very present, especially in the midst of things that don't make much sense some times! We love you very much!!

Nicole Mages said...

I have heard bits and pieces and wanted to reach out to you. I know you have an amazing support system but wanted you to know just how far reaching it is. You and your family are in my thoughts and prayers. Your and Brad's love and support of each other is so evident and that is great. Your children are beautiful and it just doesn't make sense why kids have to go through such things!!

jaymetrell said...

I, too, heard a little and have been praying for you lots. You have a great support system that is bigger than you think! My heart goes out to you. Many hugs coming your way!! I will keep you and your family in my prayers. God's peace to you all.

~Jayme Schultz

Heather said...

"If God never gives us more than we can handle, He must think I'm bad-ass." That's what I thought about our last year.

I'm so sorry this is on your plate. Can I help with endocrine issues? We certainly have our share of those. Email me if you'd like - heathermccornack24@gmail.com I know how scary it is to navigate a rare disorder. Like having to carry a letter with you all the time because ER docs won't know what he has.

Prayers coming your way.
Heather McCornack

Rachel Karl said...

Thanks for the update Rachel! Continuing in prayer for you, Brad & your beautiful babes! Wishing you weren't going through this. There is good...God is good...You are valiant! Hugs to you :)

The Remme's said...

The Remme Family continues to think and pray for you guys. What a journey, hoping and praying that your faith and love for one another will prevail and that little spunky gal will not have to endure too many more tests :( As a nurse my heart aches for families that are suffering, and my heart aches tremendously for you and your BEAUTIFUL family. May your new adventure at home with your babies be just what the doctor ordered! Love you guys and praying always!

hitaakademi said...

Ankara merkezli sıramatik sistemleri kurulum ve teknik destek hizmetleri
siramatik Türkiye'de hizmet ve faaliyetlerini sürdürmektedir.

hitaakademi said...

Ankara merkezli etkili sunum teknikleri
sunan Haluk GÖKŞEN arı kovanı
eğitimi ile sistematik bir yapı sunuyor.

hitaakademi said...

Ankara merkezli etkili sunum teknikleri
sunan Haluk GÖKŞEN arı kovanı
eğitimi ile sistematik bir yapı sunuyor.

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