Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))
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Tuesday, April 8, 2014

Life is what happens when you make other plans.............

This picture is from last fall. We don't use the play pen anymore. The boys are waay too big! We have a gate in front of the TV now.
The kids on the floor- Jacob (8) left, Moses (8) Faith (right) 12 on the couch, Lysa 11, Kitty 10, Isaiah 9. Noah, Pauly and Julius in the playpen. Don't know why they are sitting, they used to stand and watch TV. Miss Mercy is off floating around- she hates to sit still!

I wanted to write a post about raising kids who have no interest in "normal" kid things and how hard that is. 

And then the Neurologist called............twice.
(yup the "bad" Neuro)

People were praying over my last post! I know they were! God answered your prayers! 
The Neuro read Mercy's ENTIRE medical file. The same woman who could only flip through her phone to "scan" Sotos, while Tom sat anxiously waiting to hear she would help us. A Neuro who believed the Psych who believed the Social Worker mom (of Mercy's last family), diagnosing her as mentally ill. The Neuro's heart was changed and she read every word and gained new found wisdom to share with us.

I wish I could say it was good news from the Neuro. The good news is we now have the Neuro (the Hematologist and the Geneticist) fighting on our side.

The "sore" on her bottom that we were told by the last family was one thing, and then by her pediatrician told us it was the vascular malformation, which is really on her brain. 
Well the sore (dimple) is a "symptom" of a tethered spinal cord. Not good- but now we know exactly what THAT is. She'll see a Neuro Surgeon next. But first I want her to see the Vascular Specialist about her brain. Just going on Mommy instincts.

Tethered cord can cause pain, and/or lack of feeling, Thalasseima can cause pain, Vascular malformations can cause pain. I feel like I need a 5 year nap. It's a lot to swallow for a 6 yr old. And it's not even me. I cry for her every day.

The Social Worker called right after the Dr. There was no way we could talk to her after digesting all of what the Neuro said.

Plus the Neuro now believes us, she believes that Mental Health issues are not causing all of her behaviors. And she completely understands why we don't want her on psych meds. at 6 yrs old. She also read about Mercy's sad past (all families rejecting her) and commended us for caring so strongly about her. And she applauded our efforts. 

She suggested we see the eye Dr. We are going to give it a shot. She does not cooperate with exams. But it's worth a shot. Neuro is strongly recommending Speech therapy, as we are too. We do Speech games with her now. But we need to get all of these medical appointments done first. (More MRIs and ultra sounds, traveling 140 miles round trip) 

We've had other kids reject Speech therapy (our Samson refused to go) so we know with Mercy, she may scream to get out of it. She does not like to cooperate. :o) We will see! *wink* If it takes no one will be happier than us. 

On a frustrating note- please pray our insurance starts covering her. Since she's not officially an adopted yet they are rejecting over $3,000.00 worth of medical bills. We have no support for our kids other than Samson pays $500.00 room and board. Our group home gals support us. None of our children get any aid. Only 2 out of 21 children ever did, and they are long grown. That's another reason no one "wanted" Mercy, who would do this and support her. We rely on God!

The last family that Mercy lived with divorced. You can't help but think that the stress of caring for her had to be a contributing straw that broke the camels back. But I am just guessing. I can tell you that after Tom dreamed of having a beautiful daughter from Bulgaria, Mercy was not a welcome sight. He really struggled with her level of difficult care. And if I had said she should go, he would have supported that. But I prayed so hard and this is who God sent, I believe we need her as much as she needs us.

Today after much prayer over this precious child it came to me that our marriage is stronger because of Mercy. Because of her very high needs for both Tom and I, we are united in caring for her. Isn't it amazing how God can use hardship for good?!
And so that's how my post for today came to be.

Thanking God for teaching us that it is not about us. But we are BLESSED beyond measure as a result!

(((((HUGS)))))))) everyone! Thank You for your prayers! 

6 comments:

  1. To God be the glory for the things He has done! Praise God He built your family the way He wanted and is there for you and us all in our walk in His path for our lives. I am grateful that you gave every one of your children that needed you and your husband a home. Especially Mercy. Blessings!

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  2. Mercy is so blessed to have a family work so hard to find answers. I know it must be hard and I am always amazed at all you do. God bless you and your family. Also, I love it when you post pics of the kids -- they are all so cute!

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    1. Aaaw! Thanks Sweet Sharon! (((HUGS)))

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  3. God Bless you guys, saying a prayer for Mercy tonight

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