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)))

Wednesday, September 9, 2015

Ride 'em cowboy!

 We found the perfect "simple" rider for Moses! The pedals are too far up for his feet which is perfect for him. He can't pedal. yet. He will. For now he likes to pull himself forward with his feet along the floor. For now pulling with his legs is what he taught himself. Not even Julius yet understands pulling forward with your legs and feet. And Julius understands so much more coming home 3 years younger than Moses.

But watch out! He'll ride into the back of your legs!! He's fast!

 He can go forward and backward!

 Taking a break to think!

 Even in tight spaces like the hall way!

Yelling back to his brothers to come watch him! But they don't dare!

 Nope, nobody coming! :o)

Cutest shot ever of my sweet boy!

Jacob continues to recover amazingly well! Please forgive me for not answering personal e-mails. These first 7 days of recovery have been overwhelming.
One unusual, but wonderful thing we noticed today is how "fast" Jacob does things now. He used to move from activity to activity slowly. He used to stare off into space between things. Now he is very sharp, responding so quickly to my verbal prompts for him. And even trying for the first time ever to feed himself!

Today 3 of the boys (Noah, Jacob, Moses) met one of their older brothers. A brother that had never had an interest in meeting them. This brother was the one who wrongly reported us for child abuse. It was good to see this son, to hug him and to share about the boys. We hope and pray that he will become a good example for the little boys. Who need all the LOVE they can get! Moses took it all in stride- he loves "guys", he loves showing off how he's a guy too! LOL! He was wearing his "In Charge" minion tshirt of course!

God IS Good! My heart rejoices in His Goodness. Giving God the Glory! Moment by moment, day by day!

Monday, September 7, 2015

Jacob's recovery

The tongue hanging out always helps him feel better. You can tell how upset he is by how far it hangs out.

Normally we say "Tongue in Jakie!" But after brain surgery we'll just let him do whatever it takes to feel better.

I LOVE this boy so much. I dared not breathe as I prayed to God to heal him. Until now. Now I REJOICE as I pray in Thanks giving!

What would I do without my Jacob? I don't even want to know. I have three daughters in Heaven. God knows I want to precede the rest of my children in death.

The new incision, sewn up much nicer and tighter than the last. It's about an inch longer. They sure don't cut much hair off for this. I really should have given him a hair cut first. But he hates hair cuts the most, so I did not want to upset him.
Stitches come out in 14 days. And we have to drive 70 miles to the Neuro at the U of MN office just for that. He won't see his Neuro for post op until 3 months later.

 Once home he slept semi sitting in Mercy's time out chair. (Rifton Feeder chair) I think he thought he was having a time out because he was not happy about it at all. Poor guy. Laying flat was not recommended for a few days. Tonight he is laying on his tummy hugging his soft blankie that Auntie Sonya in TX made him when he came home. It has washed well and is as soft as ever! It's his favorite. :o) 

He came home Friday night throwing up- darn pain meds were not helpful for his tummy. We put him on liquid Tylenol and then he could eat. We had to start small, a few bites every half hour or so until he turned his head away. Everything soaked in broth to hydrate since it hurt for him to drink. He's not a big drinker anyway.

He was so happy to be home. And he seemed to feel much better all around, than he had in months.

He used to laugh and sing the first year home. As time went on he'd laugh, not much, but still laugh. There was eventually no more singing. 
He never complained or cried. But was he having a lot of pain from the large incision of the Dura being open? Or from the brain fluid leaking? Or from the brain fluid disintegrating his skull?

Whenever we ask the Neuro about Mercy's head pain she tells us - nope, she has no pain. But then why does she respond so well to Tylenol? Or cry if we don't give it to her? And why did a Grandma tell me she too had an AVM and it hurt??

So we didn't ask Jakie's Neuro about past pain. We try not to think about the possibility of him suffering so long.

 And maybe its just me.................

But I think this surgery has helped him in many ways that we had no idea it would help him. He is happier. He is more bonded. He is pain free. Everything we always hoped for!
Of course we had no idea how awful his situation had become.
(his blankie is in the background ;o)

We are so so SO THANKFUL! God is Good!

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.

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! 

Sunday, August 30, 2015

Too big for his britches!

 This is a very small wagon (10" x 13"). But Moses fits in it perfectly. (he's wearing 5T jammies) He has a new fascination now-riding and driving! He can pull the wagon with his legs! Something his brothers haven't figured out yet!
His other favorites are his little cars that pump and go or wind and go.

He really doesn't need any help here. He sets it up to drive it himself! Yes it is a "frozen" wagon. It is Mercy's but she doesn't have any interest in it. We couldn't donate it because Moses says then it's his!

Nope, he's not gonna "drive" for pictures! LOL!! 
In the background Jacob is making "buh-buh" noises with his hand. We discourage this, but he used it for comfort for 7 years. Hard habit to break.

 Jacob says to Isaiah "I said no pictures bro!" LOVE-LOVE-LOVE my spirited boys!

 Pauly singing! LOL! It sounds like a low monotone "uhhh". But its beautiful! He also plays a "mean" xylophone! He whacks the keys with such force! If he misses hitting a key you hear "whack-whack" on the plastic! And then he hits the keys again. He plays for up to 15 minutes. We clap, he saunters off to sit in his thinking chair!

 Noah just hangin out. Never a dull moment for Noah!

Julius' regular photo pose! He stops everything he's doing when the camera comes out! He's so big that at his last Drs visit the chart showed he was fat?? I- don't- think- so!

 Precious Pauly, autism steals his spontaneity. Pauly and Moses are still the same size. But Moses is 2 1/2 years older.........and he knows it!! Julius has "out grown" his closeness with Pauly. Julius has moved on to other things. This made us and Pauly sad.  

Pauly LOVES having a buddy. And Moses decided that he would be Pauly's new buddy. It was so sweet. They held hands, Moses helped Pauly. 


Moses became bored with Pauly's predictable routine of repetition. And his lack of emotional response to Moses. And if Pauly got the sillies and laughed because of something he was thinking.......Moses wasn't impressed.
Moses got bored.

So Moses decided to tell Pauly what to do! OY!

He pulls Pauly out of his thinking chair- he pushes Pauly to walk. Pauly sits on the floor, disturbed that Moses would ask this of him! Moses pushes Pauly to stand. Pauly gets up and goes back to his favorite thinking chair. Moses runs after him, pushes him out again. Pauly walks/stumbles till he sees another chair and sits! Moses tries to pull the chair away, with Pauly refusing to budge.
So Moses hits him!

Now agitated Moses wants everyone to know that he's not happy! So he runs to his other brothers and hits them too! They are oblivious to the fight? that is going on and ignore him. Moses doesn't care, he got to hit them!! 

He even goes over to take Jacob's toy away just because he can! (there was a year and a half when he couldn't win that fight with Jacob)


And then mom tells him "No hitting Moses! Give Jacob his toy. Tell your brothers you are sorry." He does with my help. But he lets me know he is not one bit happy about it. 

All those years. 
7 1/2 years of being told what to do and "taking it" from adults who don't LOVE you; have come boiling and spilling out. 
Now he's 10, even if he's not the size of someone 10. He taught himself to walk and run, hit and climb. Now he is in charge. He has gotten too big for his britches!

After lots of hugs and finding his favorite fire engine. He's sorry. We LOVE him, his brothers and Mercy to pieces! 
And now we need to find something Mosie size for him to drive!