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)))

Sunday, September 29, 2013

A wedding..........

You can click on our house above to go to my other blog and read more.
                              There was a wedding at our house!

Friday, September 20, 2013

Pauly home 2 years!

                               (Pauly likes to repeatedly tap his teeth)

I'm sorry this is long over due. We had a wedding, a new puppy and today is Pauly and Mercy's 6th birthday!! It would also be our daughter Joy's 25th birthday if she was with us. (she's in Heaven) We are not celebrating until tomorrow so MA can join us! (she has senior center week days)

                                 Our Pauly home 2 years!!
When Tom was visiting Pauly in the orphanage, the 2nd visit~ he laughed with great JOY from his entire body! The staff was in shock. They said he was a "serious" boy, never laughed. But somehow Pauly LOVED Tom right away and from then on each visit brought great JOY to him. And the staff believed it was a spiritual gift. We do too!

Of course Tom had to leave and could not go back for him, for 5 more months.
Pauly being used to disappointment, living in fear. Yet still, I'm sure it set him back to lose his new friend. But pain was nothing new to him.

And then Tom did come back. Julius and Pauly went to the hotel and they cried with fear.
Pauly attacked Julius out of fear. Pulling his hair and knocking him down.
He has a good reason to fear, he has a huge "mountain" of a scar from his heart surgery where the ribs were re-connected as a very small baby.
I'm sure he must have cried in pain and terror after that surgery. Causing the ribs to misaline.(sp?)
And that fear was the beginning of his shutting down.
Shutting out the world.
So he could cope.
Developing Autistic behavior.

              (He has a cold here. He does not like to make eye contact.)

My precious precious baby. My heart holds the heavy burden of your pain with my LOVE.
Every mom with a bruised child from an orphanage carries this pain. Where oh where was I when he cried out? Where was I when he needed to be held? To be loved? Oh where oh where? As a mom you have the overwhelming urge to have been there.

Pauly loves to be with me. He looks for me! Recently he actually started getting out of his bed- just like the other boys try. But instead of finding trouble or running away~ he runs to me.
Do you know how hard it is to discipline him for getting out of bed when all he wants is to sit with me? Impossible!
So I make sure he gets his mommy time. :o)

He giggles when he's with me. He wants me to tickle him. I don't even have to tickle him- I can say "ticky-ticky" in my tickling voice and he rolls around with laughter in anticipation!

He struggles to communicate. He sits, stiffens his legs and arms straight out- hums and makes repetitive movements stiffly with his hands and feet. Over and over and over.
He doesn't seek to communicate with us.
We tell him "No hum Pauly"
We say "Yah-Yah-ba-ba-ga-ga" We encourage him to make consonant sounds. He used to say "yah-yah". And then he learned to make the highest pitched squeal we've ever heard!!
Till we told him "No squeal Pauly"
And he did stop.
He learns, he listens, it all takes time. :o)

There was a time he refused to clap his hands. It was a sensory thing that made him go stiff if you tried it with him. And yet he slapped his face over and over. He slapped himself so hard you could hear it a room away.
Our hearts hurt to hear and see this.
We tried to stop it.
And then one day we heard a noise that sounded like a loud slap. We looked towards him and there he was sitting, fully satisfied that he had done a big loud clap!! LOL!!
Now at night you might hear him clapping- crazy kid!
Or you may hear him laughing like something is un-believably funny while the rest of the boys are sleeping!

                                     (This is his avoidance posture)
His ears bother him. He was scheduled for his 2nd tube surgery but he became ill. It will be this month now.
He has a hard time falling asleep.
Late in the night I hear him and remind him to "shhh" because the other boys are sleeping.
Isaiah even has to stop his loud rocking in the middle of the night, when it gets to be too much. Firmly laying him down with a "shh" reminder. Most times he listens. :o)

Beautiful, beautiful boy. How can I reach you. How can I help you.
I know you are in there- I see you! And I LOVE you with every ounce of my being. I can't remember my life before you came.

Here he's on his sister's bed. His favorite thing to do. He has such a laid back personality, he just loves to snuggle, loves to lay on a cozy bed, but not his bed of course! LOL!

His upper lip is chapped from licking. He goes through spurts of licking continuously. Sometimes I put a tiny bit of the stop thumb sucking liquid under his nose. Immediately he knows this means no licking. He stops.
He also knows how to wipe it off.
We use it only as a last resort when the chapped turns to bleeding. Careful that the medicine does not touch the chapped area. He holds his head still.

Here he's clapping because he's happy. He's going to the ENT with Dad. Wearing the shoes has not registered yet. He hates shoes- coats- mittens- hats. Very sensory sensitive.

Yup- the shoes are not good. But he'll do his best to wear them.

He has just started learning to "listen"
Before he memorized routines and just did them. Example- I used to always change his diaper first. So when it was diaper change time he just came to me first. If I asked him to wait, he could not accept it. So I decided I needed to mix things up everyday so he would "listen" to what I said.

One place he waits his turn is on a stool by me. So if he gets in the way of my helping another boy I say "go sit". He used to just hear the "go" part and he would "go" wherever he thought he should. But it wasn't where he needed to be! :o) Now he understands- "go sit", "go play" "go to bed". He "listens" to the words and goes to the correct place!
Of course when he does the right thing we clap a lot! :o)

That is pretty amazing considering that when he is with us he often reacts to what he thinks we are doing. If he thinks he doesn't like it he begins to hum, stiffen, make hand gestures, turn his head and eyes away. We pull him back in with us by holding his hands, holding him, and talking. And now he hears us! Precious boy!

He is very easy to love. He is very vulnerable, you want to protect him. And yet he shows us he can do things. When he refused to walk last year. He saw Noah standing with Julius and he decided he should too! When the new brothers came they were fast and active. He learned to quietly come beside them and hold their hands. (Altho I'm sad to say only Noah and Julius will return the affection. It breaks my heart to see the others push his little hand away.) When we need him to listen he does.

There is still so much work to do to get him more independent.
It is a work of LOVE.
Just yesterday he put his spoon to his mouth on his own at breakfast! No hand over hand- he tried it.
Fear holds him back, LOVE brings him forward.

I learn from him every day!

Saturday, September 7, 2013

Surgery Success

This boy- is LOVE. Oh how we love him. He's such a big part of our lives. How did we live without him?
He completes us!
I know he looks small in size. He is.
But his personality is HUGE!

When you feed him, he controls your hand with the spoon.
When he's angry he ignores you completely.
When he LOVES you he gives you his neck to kiss or blow silly noises on!
His choices.
He's so not a baby. He's 8.

He's finds himself incredibly funny. And he's right- he is funny!
His growth spurt brought in a row of adult healthy looking teeth! YEAH! Top and bottom!! YEAH!!

They came in right behind his baby teeth- BOO!!!
More surgery. :o(

In January he had his tonsils/adenoids out and tubes put in his ears.
For 2 weeks after that he spiked fevers, and had so many set backs. We were on our toes doing everything to keep him from going back to the hospital.
He made it!
But we saw his will was not strong at that time.
It frightened us.

So yesterday as he and Dad headed to Mpls. Children's Hospital for his surgery. We held our breath.
We knew he was in good hands.

Silly us, he blew threw that surgery like a champion! His bigger size, his physical strength, he handled it beautifully!! He woke up from surgery hungry! He ate, he drank! He was home by 8 p.m. He was happy! But sore. He was amazing!! Amazing!!

We are beyond blessed! Our JOY is overflowing! Praise God! Mosie is strong- he is healthy- he is precious! He is a gift to all who know him!

Wednesday, September 4, 2013

Mercy, my baby in a big body.

My sweet love with  Sotos has gained 8 pounds since March with us. I knew she was getting heavy! But holy cow she's rock solid! And so tall too. A head taller than her peers. They say with Sotos that you need to set rules early before they are too big to stop you! :o)
(With DS loves you can buy a little more time! They are smaller! ;o)

Right now if we tell her "time out" she plops to the floor, full well knowing only mom and dad can lift/move her to the time out bench! Her siblings aren't allowed to push or pull her to sit there, due to health concerns. She has Thalassemia . And she can't be allowed to "sit hard" because she needs a surgery at the base of her tailbone.

The top picture is the OT therapy I do with her. She is learning to eat with her hands and build muscle strength in her wrists. Her hands are so large they tend to "hang" from her wrist. She's doing a FANTASTIC job!!

When she first came to us, she had fed herself in her last home, but was not getting enough calories. Going back and forth for months from us to the last family, caused her a lot of confusion, upsetting her. She fought feeding herself. So why push things that can be worked on later.

So we fed her. And we fed her and we fed her. (thus the weight gain) And then we sat her down one day, with her new adaptive spoon and "Cali" bowl. (it has a inner lip) And we gave her her food. And she fed herself, slowly but surely! The spoon balances her hand out. The bowl has a non skid bottom too. We also put slippery plates on silicone hot pads or cookie sheets when she eats off of those.
 She feeds herself beautifully! You can see in her large hand the muscles are working very hard to grip. Her school program with the last family had started a feeding goal, she was at 10%. It's 100% now! We are so excited at this new milestone!

She's so independent here I love it.
She used to walk bent over, head hanging, with her back to everyone.
She used to kind of "clomp-clomp-clomp" up and down our wooden stairs, bruising her shins.
She used to drool and have a "hangover" from her meds.
This morning she was quickly, stealthily running up the stairs- when she got to the landing, Samson was standing, waiting for Mosie to finish crawling up. Mercy pushed Samson aside and squeezed through a small space past him, to get ahead! Poor Samson, we make him say "Excuse me"! And Mercy just budges ahead!

 We put a "tent" cover on her playpen bed so she can not stand up in it. If she stands she wakes her sisters tapping and yelling! :o) We zip the tent at 9 p.m. just as a visual that she needs to go to sleep, and stay in her bed. Kids with Sotos often have sleep problems. If it's too hard for her to sleep we give her a small dose of her "old" medication. That med was not for sleep but has a "sleepy" side effect. (We can't get new real sleepy meds until we get her new psych, long frustrating story!)

First thing in the morning while her busy sisters run to the bathroom- she unzips her tent top, jumps out and runs off to her destination- usually to eat, but sometimes to see me! :o)

Love- love-love her determination! It's almost gone!
And that left hand wants to help! So cute!

Kids with Sotos are developmentally delayed. Some will be "normal" (whatever normal is :o) functioning, as they catch up around age 12 or so to adulthood. It's unknown why they are delayed so long and then catch up!

But Mercy has the added Sotos marker, another chromosome abnormality- the NSD5 deletion. Mercy will not catch up. Her normal will be different.
We think as long as she enjoys her quality of life, it doesn't matter!

Right now her only educational need is Speech. I am working with her, but hopefully soon we'll get our speech therapist! I even have dreams where she talks to me. I can't wait! Most kids talk by her age, but there's still hope she will talk!
Such a blessing from God!