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

Wednesday, April 24, 2013

My LOVE ~ MA

At our house we sing~
                               "Here she is Miss America!"
and MA poses and struts her stuff!
Because she IS Miss America! :o)

Her sweatshirt has a picture of a dog that is the same breed as our dog Snow. She saw that I had several Shiloh Shepherd tshirts and she asked for one too!
I said o.k., but I explained to her that the dog on the shirts was not "our" Snow, just the same kind of dog. She politely told me no, the dog on her sweatshirt is our Snow! LOL!

You can see SP watching to see what the pictures are all about!

Why is it if one person (Mosie above) sticks their little tongue out~ the other person (MA above) sticks hers out too! LOL!! Too cute!

Can you believe this little boy could not stand 6 months ago! And now here he is! Standing holding hands with his best buddy! His second mamma!

MA is pointing for him to "look" at the camera! "Look" at Dad! Nah! He's not interested!
MA helps us out so much!

MA would have preferred we adopt five little girls.
But MA understands.
These boys needed saving. Mosie was too near death. So frail so tiny.
And he's such a good boy! Who couldn't LOVE him! Who wouldn't LOVE him.
The challenge was bringing him here, miles from the Country of his birth.

My heart wants wanted a little girl too. But God knows who belongs where. I am filled with LOVE for these little boys. God's boys that He has shared with me! My boys! My cup is over flowing!
I think MA agrees!

Saturday, April 20, 2013

God sets the lonely in families

This post starts out sad..............

But it ends VERY HAPPY!! :o)

Noah developed an infection and tiny tear in his surgery area. He has a high tolerance to pain. So I knew when he was a little shaky...........something was not right. I found the problem- cleaned it and the Dr said it will be o.k. Except it really really hurts! I don't care if he has a high tolerance for pain! I know it hurts him! So BIG HUGS are given even more frequently!

Remember my post called "Did you ever wish more than anything in the whole world for a little brother?" (here~ http://theroaddownhome.blogspot.com/2013/04/did-you-ever-wish-more-than-anything-in.html

Well, Noah is Isaiah's big brother by 6 months! Look at the smile on Noah's face! Noah had no idea what a little brother was! But he got one! He got Isaiah! (and a few more! LOL) And he LOVES his little brother to pieces!!

This is Isaiah making his brother Noah laugh and laugh..............

AND laugh!!
What a doll! What JOY this boy gives to all who LOVE him!

Noah needs a lot of fluids. He caught the intestinal bug that MA brought home. We have all had it in one form or another. Noah has bad diarhea. He is drinking pedialite by the buckets! But the only way he drinks enough to flush out his infection and re-fill his potassium is with a bottle.

Noah is the only boy out of the 3 bottle fed boys who still will use a bottle in emergencies. It really helps. I wish Jakie and Mosie would take one when they had their surgeries. (Dad also calls Noah- Nosie- HA!)

So "little" brother lovingly gives Noah his bottle. Because its a guy thing, and they really really bond over guy stuff!

 LOVE!

LOVE! LOVE!!

This is a pictorial of ~

Psalm 68:6 (NIV)
6 God sets the lonely in families,
    he leads out the prisoners with singing;
but the rebellious live in a sun-scorched land.
 
                                          Thank You God!

Tuesday, April 16, 2013

The babie's of the family

Only 6 months ago. Pauly and Julius were like twins! They are only 3 months apart in age. Both 5 years old. The youngest- the babies of the family!

They came home together August 2011 and they have grown very close here as brothers. They had a full year here before the 3 older boys came home.
Last summer they decided to share a play pen up north for sleeping and then a bottom bunk bed at home. They sleep so sweetly together. Well except when Julius decided undressing Pauly was fun! LOL! The sleep sack stopped that! ;o)
The bottom bunk still works great for sharing~but~ they are to big to sleep in the playpen together this summer!!
Pauly is still in a size 3T sleeper. Julius is in a size 4T sleeper.
Julius is tall and wiry! We tried to tell his endocrinologist he's too thin, but he's 50% weight and 70% height for DS. So she does not share our concern.
Pauly is plump and cuddly like a little stuffed bear!!
And Pauly's blue eyes (our only BG baby with blue eyes!) are captivating! He really has more of the all American football hero look!
 
They feed themselves now! Pauly practises here with his spoon and a bowl of cheerios as he plays picnic!
Between the wet spoon and his habit of licking his upper lip- we fight chapped lips.

 HA! We caught you Julius!! Still the spitter. Spit- spit- spit. It makes him crazy happy. :o( I've found nothing yet to replace the joy he gets from spitting! darn!

Julius loves sign language. And he picks it up quickly and uses it very appropriately! Only with me. He knows the others aren't understanding his signs. Why waste time!! He hesitates to make sounds to communicate. Definitely seeing more signs of apraxia. And yet hearing him make great sounds throughout the day.
Julius' favorite sign is "all done"!! I say- Julius give your sister a hug! Julius signs- "all done". I say- Julius take off your shirt. Julius signs- "all done"!! O.K. I think he thinks this is the universal sign for "no way"!! LOL!!

While Julius is in constant motion watching, learning, jumping, leaping, living!
Pauly is laid back- laughing, loving and watching! LOL! If any of the boys I feed cause trouble (spit food on me!) Pauly will copy them! Today he leaned in to see why Jakie wasn't swallowing his breakfast and I kissed him. That seemed to help him see it wasn't worth trying the same thing! But he's thinkin about it!
Julius doesn't need to copy anybody acting out. He has his own original stuff to try!

The 3 new boys love going outside. It took Julius a year to even dare to enjoy the outdoors, or a shopping trip with dad. His anxiety caused drool soaked shirts. Now he loves outside!
And Pauly is still thinking about it. Thinking if he should just look out the door or actually go outside!
All 5 boys should be so ready to play on the deck in the playhouse any day now. If spring ever decides to get here! LOL!!

Monday, April 15, 2013

Love stinks!

In our house, 2 out of 4 adults living here have a developmental disability.
And 8 out of the 11 children living here have a developmental disability.

Only 3 of the 8 developmentally delayed children, have a physical disability. We don't even notice physical disabilities here because the Developmental disabilities are so significant!

What's a little thing like not walking when they mainly can't communicate. They can't even tell me, if they're sick, or tired or hungry! 

We have women in diapers. We change them just like the kids, only they sit in he bathroom.

We have 7 children in diapers.

Five of them treat their diaper as an activity waiting to happen! LOL!! Like our nine year old who digs in his diapers and spreads what he finds onto himself, the furniture and us.
We have a 17 yr old who can change his own depend, but does so sitting naked on the linoleum floor spreading the contents! O.K. sorry TMI. Sometimes the way "I" think it should be done, is not the way they do it.

You know the old saying~ "Choose your battles!" ;o)

So today when the 12 yr old with FAS flushes the toilet and it overflows for 20 minutes with all of its contents (from 2 people) into the kitchen and MA's bed room. Slowly flooding through the floor into the basement..................

But she doesn't tell me because, well the effects of alcohol robbed her of reasoning. (We know this so well from our 37 yr old son Andy who also has FAS) And to stop the flood herself, she throws full rolls of paper towels onto the mess, one still in its plastic wrapper. And runs to the basement for more! But she will never call for help. (Why call for help when there are more paper towels in the basement!)

I had to figure out something was wrong. She doesn't know how to ask for help. She won't ask for help!

Two hours later after disinfecting everything in MA's room and the kitchen.

I surrender.

I'm in the minority here.

There are only 5 of us out of 15 living here who think hygiene is a priority! (And 3 of us out of those 5, are 10 and under. So its still kinda iffy! :o)


Before today, I thought maybe I could help the 12 yr old's confused reasoning. I decided to explain to her what she should/could do, using examples. Like "what would you do if....happened" and "what should you do if... happened".

We started simple. Things like don't answer the phone if mom is gone. But if you do, don't say mom and dad are not here. Say they are busy. We practised. First time I left- worked like a charm. Second time I left she answered the phone once. Two people called and she couldn't remember which one she answered. The caller ID told who they were. She said she answered because she thought it was ........me?? Hmm that answer doesn't work when she can read the caller ID and see that it did not say me!!

Nope. Our "what if" situations didn't work, didn't even help, and then I was just as confused as she was.

We try to live a super simplified life. That way order and hygiene make more sense in the big scheme. Those who are hungry, soiled, need medications or are sick get top priority.

But I will admit. The days are long, even if simple. And some days I dream of a day without fecal matter consuming my every thought. And then a child hugs me and I am reminded why I love my life. Why my life isn't really a metaphor for fecal matter. LOL!

Physical disabilities can get therapy and adaptive equipment. They are "fixed" to the best of our (PT/OT, child, me) abilities.

Developmental disabilities not so much.

In my heart I know the rewards are great. In fact they are out of this world! When we re-unite as family in Heaven!

(The pictures are of Kitty age 9 helping her brother Noah age 9 recover from his surgery!)

I love how they put up with me!

Sunday, April 14, 2013

Noah post surgery

Noah our love!

Happy.

Very little post surgery discomfort!

Sleeping well.

Surgery successful and complete!

Such a precious little guy!

The older kids love these pjs on him. So each time they are washed- they grab them out of the clean laundry for Noah! LOL!!
I love how the new fleece does not "ball up" like the old fleece!

Here he doesn't want to walk to mom! He's thinking he needs to hang on to this big white thing with both hands!

I didn't cut his hair pre-surgery because we were getting cold and snow! And he doesn't keep a hat on! So his hair was needed to keep him warm on the long drive in the drafty 15 passenger van!
April/May is spring hair cut time. But not this year with temps in the 30s!

We are always looking for places to stand Noah so he will try those first steps on his own. So far this one's a no-go! Dad thought this spot was worth trying!

This is Noah's "he-he" face! He likes to snicker when we set him somewhere he finds amusing!

Noah says he's hanging on! And he's not letting go!!

 Hey dad! Look-I'm one handed!

 O.K. now I'm no handed!

Let's see who can out wait me on this? I'm super relaxed here now. I'm kinda thinking you better come get me, because I'm not walking over to you! LOL!!

We are so Thankful to God that Noah is doing so amazingly well after his surgery!

Saturday, April 13, 2013

Adopting!!!

No not us!

The Burman bunch here! LOL!!~
http://www.carringtonscourage.blogspot.com/

And they have a beautiful fund raiser!! here~
http://www.flowerpowerfundraising.com/campaign?campaign_id=15812

I ordered Lilly of the Valley (my daughter Angel in Heaven's favorite) and Bleeding Heart (my Maternal Grandma's favorite- Tom accidentally tossed mine that was from my Grandma's 100 year old plant. :o( TOM!!!)
And a few other wild flowers!

A lot of the $$ goes to the family!


Friday, April 12, 2013

Noah's Home!

Oh my! We've been so busy, no time for pictures.
Thursday was the big day for Noah!

Tomorrow I'll post pictures!

Tom and Noah left at 8 a.m. in a snow storm that gave us 8" of snow here and rain/snow south of us, where they were going. It was hard shoveling with our oldest shoveler now being only 12! Faith and I shoveled off and on all day to get the dogs a way out to potty!

Public school was closed, so we were sure that MA and SP's day programs would be closed. But there they were bright and early to pick up MA. We waved them on and told them no. Because if they closed early, how would I get her back home in all the snow! I called to check SP's program and they too were open??!! SP's is from 2 p.m. to 7 p.m. So we cancelled hers too. Cars were getting stuck on our street all day! Our sidewalk was not shoveled. The plows hadn't even come by!

Back at the hospital, Noah was so cooperative! He thought he and dad were just having a daddy~son day! LOL! The Drs did not wear the white lab coats, they wore green and blue surgical uniform. Noah hates white lab coats- it reminds him of the orphanage. :o(

His surgery was 1 p.m. It was finished by 2 p.m. And this incredible, sweet loving boy came out just as loving and happy as he went in! No fear~ no worries! Of course the anesthesia etc helped his dis-comfort. But you would not have known that he had just had surgery! Or that anything had even happened to him! He did not look like his brothers did after theirs! He looked happy! LOL!!

He was the fastest kid ever in the recovery room! He ate! He drank! He cooperated! He was AMAZING!! He was home by 7 p.m. !! The traffic was incredibly light for the drive there and home thanks to the weather. So that helped.

When he came into the house he was so happy to see us! And we were so happy to see him!! During the night he would wake and talk so we could tell he needed his tylenol. But he didn't cry. He is so so SO chipper and happy! I LOVE this boy! I adore this boy!

This evening he crawled in to see me as I was correcting homeschool books on my bed. He was playing in Samson's room. The kids never notice him sneak away! He's very quiet and determined! He does this frequently. Sometimes he sneaks out the wrong door. (there are 2 door ways in Samson's room) So he backs up and turns around. And you know he was there because you see his little toy left behind! After he found me tonight I took his hand to see if he wanted to climb up by me. He only put one leg on the stool to get up. Then you could see he was thinking- he better not do it because it might hurt. I hugged him and loved him up and his siblings whisked him away to play. :o)

Mosie will be the last boy to have this surgery. I don't think he'll take it as well as Noah. Mosie will fight the recovery, he won't eat or drink when he's mad! So it has been fun to see Noah just take this all in stride. He's such a big boy. It makes me think that he's so happy with his family that he can do anything with our LOVE and support! What a blessing he is!

What JOY these boys bring us each and every day!

Tuesday, April 9, 2013

Growing like little flowers in the garden of love!

On Thursday Noah has his surgery. Please pray it goes well.

It will be 70 miles away at the Children's Hospital; to make sure his challenging case has everything he needs. I have to stay home with everyone else. I wish I could go. I won't be able to hug him when he goes in and comes out. It will be hard. But he loves his Daddy. And Tom is our orchiopexy expert now! He is the best Dad, so Noah will be in excellent hands. He has a great Dr/surgeon, and a great Dad!

This face! I LOVE this face!
He is such a fun little guy! Always so happy! So kissable and huggable!

But when he cries, it breaks your heart. He gets so sad. And he responds quickly to a hug!

He has grown so much in 7 months! He wore a size 3T sleeper and a size 4 diaper when he came home. Now he wears a size 6 diaper and a size 5T sleeper! He is heavy! He is huge! LOL!

Here he was last year when Tom first met him. April of 2012. He was so tiny for a 9 yr old!

Here he is gently holding Sissie's (Kitty) head as she hugs him! He LOVES his hugs!! He LOVES his sisters and brothers! He is very gentle. He never throws or hits.

 He still pokes his eyes on occasion. But not as often as he used to.

Sissie will help him keep that arm down! LOL!! No poking Noah! That's what good Sissies are for! :o)

Our cup is over flowing! Thank You Lord! Your gifts are many!

Sunday, April 7, 2013

Did you ever wish more than anything in the whole world that you had a little brother! (Told by Moses)

"Hey Dad! I see you out there in the hallway with the camera! Isaiah is busy showing me this fun electronic toy. You're taking pictures over there again, aren't you!!"

 "O.K. Dad. That's close enough! I like to watch YOU! Remember??!! Go take some pictures of my other brothers!"

 "Oh Dad! Good picture! Mom is going to just die from the cuteness of this picture!! Hmmm... maybe you should have centered me better! Look at my little boy colic! Look at my BIG brown eyes! Look at how chubby ubsy I'm getting! Look at that sweetness on my big brother Zay's face!"

 "O.K. I have to look back at Zay again. That toy made a cool sound! Look at all the hair on my head Dad! Remember when I had only wisps of hair and no colic because it was all rubbed off in the back! I don't rub my head any more Dad!!"

"Climbing time! I love to climb! But I'm so small there isn't much I can climb around here! Isaiah and I are only one year apart in age. He's 9, I'm 8. Did you know that Isaiah hated being the baby of the family? That he wished more than anything he could be a big brother. He was 5 then. So he asked Mom to have a baby. But mom was 52, and she said no. Mom did say maybe they could adopt. Maybe someone wouldn't think she was too old! (God didn't think she was too old for Isaiah!) And so that's how I got here! Mom and Dad decided to adopt me"

 "Isaiah never asked mom for a brother or a sister. He didn't care. But as soon as he heard at age 7 that he was getting TWO little brothers (J & P)...........well that was it! He WISHED more than anything in the whole world that he would have a little brother! But it was a long wait!"

 "And Isaiah LOVED J & P so much, that when he heard Dad was going back for me, Noah and Jakie, well, he could hardly contain himself! He was laughing with JOY! More? More little brothers! YES!!"

"And I guess by this picture, you know the end of our story!
We lived Happily Ever After!!
Yup, Very Happily Ever After!
Because Isaiah's wish came true even better than what he could have ever imagined! Is he a great big brother or what? We are a match made in Heaven! We are ALL a match made in Heaven!"