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)))
CLICK ON THE BOYS PICTURE TO READ OUR FAMILY BLOG

Thursday, September 3, 2015

Thank You for your precious prayers for Jacob!





To read about how we found out Jacob had surgery on his brain read here~
Read the comments. One comment by an anonymous was a neurologist who was asked to read Jacob's story and give us his thoughts. It is very telling.


I was angry about the surgery. Angry not knowing he had had this surgery. But time and my LOVE for Jacob softened my anger. 

He was released to us 9 months post op with no instructions or information on his care. 

The cysts are still there. Nothing was removed.

We moved forward to give him the best care possible. His first MRI showed nothing remarkable in October 2012. But that neurologist, not wanting to speak against another Dr; did admit it was not normal to do this to a boy like Jacob- otherwise healthy. (with only arachnoidal cysts on his brain) Since Down Syndrome is not a disease you would operate on. But he was obviously malnourished. And suffered neglect. And lived 7 1/2 years in a horrendous orphanage. One of the worst. Maybe he was disposable. 18 children had died in that orphanage that year. And like "anonymous" commented why not give dying children living there shunts, that are less expensive- why operate on Jacob, unless the Dr offered to cover the expenses of his experiment.   


Today Jacob needed a surgery to repair a suspected surgical incision/hole in the Dura surrounding his brain from that operation. This was the incision from when he had the experimental surgery. They said his brain fluid was leaking into his spine. The incision through the Dura never healed. This 2nd MRI showed the problem.
We thought.

But oh it was so much worse than that. 

They had no idea until they cut his head open.

My precious son, the son we traveled the world for. The child born in my heart. My beautiful boy.

The incision/hole that had never closed. The brain fluid was not leaking into his spine. It was leaking into his skull. Brain fluid can disintegrate bone.

The incision hole was large now- much bigger than expected. And the brain fluid..............it leaked into his skull. 

It made his skull begin to disintegrate. 

A large area of skull bone surrounding the now large incision hole had disintegrated. The surrounding skull was now very thin and brittle. There were now holes of disintegration in his skull. They had never seen anything like it.

They put large patch over the hole. And they put bone cement every where they could on the skull bone. They closed it up and came out to tell Tom. 
Shaking their heads in disbelief. 
They had never seen anything like it. 
The original incisions were much too large for the type of surgery they said was done!


                   My Jacob. My precious Jacob. I am so angry.
I
AM
SO
ANGRY.

The rage just wells up inside of me. You can see the photos of Jacob in that 10/12 post (link above). He was so tiny. He was just a baby. 7 years old. A brain surgery. All alone. No family, no parents. He was hospitalized 2 weeks. Returned to the orphanage. Then 3 days later returned to the hospital for 2 weeks because he was not recovering well. 
He was traumatized. He was frightened. He's never adjusted well to strangers or new people until now- 3 years after living in the USA. With LOVE and a family he has learned to conquer his fears.

How could anyone endanger his life to this level? And why? Did they learn from their experiment? Did they get what they wanted while endangering his short little life. A life they valued less than a child without Down Syndrome. A de-valued child who had no family to fight for him?

I'm horrified.

Yet I will REJOICE in knowing that God has placed a value on Jacob that trumps all values. Jesus Christ died for my boy! died for me! died for us all! He even died for the surgeon who hurt our boy. And in this I REJOICE and PRAISE God!

What a blessing Jacob has been in our lives! Thank You God! 

7 comments:

  1. How horrible! Thank goodness he now has a family to take care of him and love him.

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  2. I came on here to see if there was any news regarding Jacob. I am so sorry about everything though it sounds like all will be well. Sorry he had such a hard life and such treatment (or lack of in his earlier days). But, thank God he has a family who loves him now, who cares about him and cherishes him. Thank God he can have treatment and that the doctors can do a little for him if I'm understanding your post correctly. Take care and don't be hard on yourself. It's okay to be angry in some manners about some things and I think this is a good one to be angry about. : ) We care about you here. Take care and we'll be praying for you all.

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  3. I have no words, I'm beyond horrified. Poor Jacob. I hope he can recover somehow. He's come on in leaps and bounds since he came home, so let's hang on to that!

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  4. I am so grateful that he came thru the surgery ok. Bless his heart! What horrid people to do this to a baby! I am grateful the doctors that fixed this had an idea how to close this and give some strength to that area. I pray he will recover peacefully and not bump that area till healed. I am so sorry for his past but am so grateful for you and your husband for adopting him and giving him a blessed and happy future. I know he will always be fragile, but to know love and a home. A mother and a father. Siblings. To feel God in your home. That is a blessed life. Hugs from me. I love you all and will be praying.

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  5. I'm so so so sorry for the horrible news, but am hoping the doctor's attention now will help Jacob. Poor boy! I'm praying for him to recover whatever might have been stolen from him, and I'm so thankful for you as his family.

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  6. His scar looks like mine. I went through brain surgery as an adult - and it was terrifying. I also have had a fluid leak...but wow just wow. As a person who has gone through brain surgery, I am shocked and appalled that someone would do this to a child without just reason. I am praying for complete healing over your precious little boy! He is a true gem!

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