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, August 28, 2013

Mosie's growth spurt and a new family member!

This outfit is size 18 months.
The missing shoe is somewhere in Bulgaria! LOL!!
The shoes were size 2 and fell off his feet.
I never took a picture of Mosie at 15 pounds without clothes because I just couldn't. I just couldn't look at it. I didn't want to remember. (It was hard enough finding the brain surgery scar on Jacob's nape of his neck after I cut his hair.)
So I kept some of Mosie's tiny clothes.

"Hey Dad! This is fun laying on the floor having my picture taken!"
(I know- isn't he a doll!)

                          "But Dad- there's no one in those clothes?!"
                           (And he just gets cuter!!)

                   "O.K. Dad if you say so! But I still think it's weird!!"

Next week Mosie has his orchiopexy surgery.(both sides) We had to wait until flu season was over and he was healthy enough to do it. Next Thursday is the day. Mosie does not recover easily from surgery- so prayers are much appreciated! And we pray that his bigger size will help him recover easier. This is our last surgery for the boys. (Bella Mercy needs surgery next/last.........sigh)

Hopefully Mosie will have a big growth spurt like Julius after his orchiopexy.
Although we are noticing that Julius is growing unusually tall for a child with DS. Bella Mercy is very tall with her Sotos, and Julius is catching up to her height!!! (they are the same age) Pauly also the same age is still short for his age.
Regardless of why, everybody is growing heavier and taller!! We are literally sweating lugging the non walkers around!

This is a 5 wk old puppy from a litter we are buying a puppy from! This is a purebred British Labrador.
We are getting a new Therapy/Service dog in 2 weeks! It is a girl and her name is "Mary Queen of Scots".

The British Lab founding club is in Scotland, my paternal Grandmother was Scottish, first generation American. Her sister's name was Mary. And Mary was the name of the Queen of Scotland when the British Lab Club/breed was founded! That is how I named her.
Yes, this type of dog (they evolved into what we have today) originated from Labrador Canada. (UK ruled)

American Labs are bigger and more driven. British labs are calm, quiet and all purpose. They are also shorter and smaller and sturdy. Our Queen Mary is going to be my mobility service dog and she will be the boys therapy dog.

My last Service Dog was put down because of a genetic defect in his knees. It was very sad. He was huge- 28" tall and 120 pounds, he was a Shiloh Shepherd, a gentle giant. My other Shiloh boy- Snow (now 5) is too protective of me to be my SD. He is my right arm. He is good with children but is not a "kids" dog. He doesn't play, since being trained to be an SD he doesn't even fetch! LOL! He prefers to watch the kids and let them crawl over him! Which is good because he's 27" tall and 110 pounds!

The boys have never seen a puppy! They are going to learn from scratch how to love/have a pet! Our new puppy Queen Mary will be smaller (60-70 pounds) and easier for us to go out into the community with. With 6 young special needs kids- that will be a plus.

We can't wait!

Sunday, August 25, 2013

A new 18 year old! Samson Malachi

This very handsome young man is the "baby" of our 2nd group of children.

Our first group of kids ages are (and would be ages because 3 are in Heaven) 37,37,34,32,30 and 26. (one 37, 30 and 26 yr old in Heaven)

Our second group of kids ages are 23,21,20,18 and Samson now 18 too!

Our last group of kids ages are- 12,11,10,10,9,8,8,6,5,5 !!!!! (next month the last 2- 5 yr olds will turn 6, so it will be 3- 6 yr olds)
I think we need a 7 year old! LOL!!

 Samson was 3 when he joined us. He was 6 months younger than Gabriel. Gabriel was quite excited to have a brother who was "3" like him...........until he saw him in person!! I don't know why but sibling rivalry set in within moments. So we did not talk about them both being 3. Which bothered Samson none. We talked about Gabe being 3. And truthfully Samson was so delayed he was far from 3 yrs old developmentally. He had just started walking.

I have blogged about Samson's start in our family here~ 
http://theroaddownhome.blogspot.com/2010/12/samson-my-survivor.html
In 2010 when I started this blog I wrote about him. And more about him in early 2011. Around 2012 Samson lost interest in being blogged about! LOL! He stopped asking me to post his pictures. And to be honest I was so busy with Julius & Pauly coming home I was fine with that!

He was going through his teens. He was busy. Adolescence has been rough. Including a little depression.

And then Gabriel turned 18 in February and jumped into his chosen life of total independence. Samson was the last child in his age group left at home- he was alone, he was sad. Life seemed to have passed him by. His favorite number one mentor and brother was gone. I know Gabriel doesn't notice, after all he's 18, but I hope when Gabriel is settled into adulthood he remembers Samson. Samson never forgets Gabe, and Samson would love to be a part of Gabe's life. Just as he's a part of his sister Grace's life. He has a new suit for her wedding!!

So after Gabriel left we had some adjusting to do. "We" (Tom and I) had dropped the ball. Samson rebelled. Samson was ready to move out too. And if he couldn't, he could check out mentally!

Ouch! This mommy's heart was hurting for him.
And I made some big changes.
Now this BIG guy is in charge! Now he has his own purpose. Yeah minus the Independence- but one thing at a time!
I'll post some fun pictures of his "in charge" activities soon.
He's still in homeschool, grade 9 this year.

We celebrated that God allowed M.A. to live and see his 18th Birthday!

When we adopted Samson from TX, M.A. and our Susie (our gal who had DS and died from alzheimers at age 44 after living here 16 years) came with us. We had 5 of the kids along too. Only 1 of our children traveling with us was white! Believe me in 1998 this did get attention! Grace found it quite humorous! TX helped us rent a $300 a night suite for $80 a night!! It was 2 floors. We loved it, it was so much fun! A kitchen, living room etc! There was a Laundromat to use at the hotel too! We stayed 5 days! We drove to TX, it was our 2nd trip driving down. (we did 3 total driving trips to TX, for 3 of the kids)

Our first trip to TX we flew- after that I said no more! It was the Blizzard of 1990 here with 3' of snow- we flew home into a closed airport. Tom almost killed us driving us 70 miles home from the airport on the closed Interstate with a 1 month old baby. It only took us 4 hours. OY! Travels with Tom!

Samson was born with a heart valve problem that could not be fixed. So the Dr in TX did his best to mend what he could.

When I took him to his first pediatric cardiologist visit in our City, the Dr (who drove up from the University of MN) told me
"The Dr who did Samson's surgery is a very well known Pediatric Cardiologist who had just moved away from working at the University of MN. He is the best there is!"
I get chills typing that- God sent the very best pediatric cardiologist from my state to TX so that when Samson was born, he would operate on my son! Thank You God!!

Samson's growth was affected by his heart, he is 4' 11" and 130 pounds of muscle. That muscle due to his black heritage has meant he has had very little hypotonia.

His heart used to beat too slow for his age. The leak was a level 4 but after joining our family it went to a 2!!!!!!!! But now it's back to a 3. He will take medication if anything is more concerning, he's stable for now. But he does tire easily and needs naps and at least 10 hours sleep.

M.A. says "O.K. Samson I think this is enough pictures!" LOL!!

Because our baby Joy had died from heart complications I was afraid. How long would I have Samson. With God's gentle prodding I realized it didn't matter. It was going to be just fine, no matter what happened. God is with us!

After Samson arrived home we took him to our city's very first Pediatric Cardiologist. The Dr was brand new from Medical school. He too is black. Samson loves him. His Cardiologist's name is Dr Chip, and he has given him excellent care for 16 years! (Dr Chip is an adoptive Dad of 2!!) Samson knows that he, himself is black. He had never lived with white people before us. But thanks to his foster families love and kindness towards us, he accepted us. (He is drawn to people of all colors and especially loves people who speak foreign languages!)

I just realized as I typed this- soon he will have to move on from Dr Chip because Dr Chip only cares for children!!......................oh! no! (sniff-sniff-cry) How can we trust anyone else? Praying God has a special Dr for us!! :o)

The frustrating thing for us now is getting his SSI to continue from childhood. In TX he qualified 100%, they sent the SSI to him up here. Now SSI says he must re-qualify, get another blood test for DS and see their Dr not ours. What a waste of government money! ugh!
This is why we've only had 2 out of 17 children adopted receive government funds! Too many hoops!

Here's the gang having Birthday cake.............before the littles in their high chairs get their cake everywhere! LOL! No candles for Samson- fire and Samson don't mix! LOL!
The Iron Man cap is from me, Big sis Grace and her soon to be hubby (in 3 weeks) got him a book, drawing paper and cool crayons. I ordered him a super cool Spiderman jacket but it did not arrive in time. :o(
We don't "wrap" gifts here. Wrapping paper is a luxury- we can spend those $$ on diapers! ;o)

Don't mind the dining area- its become a conglomeration of donations for the pregnancy resource center on the end of the table, and my glass collection that did not sell in the curio I'd hoped would be empty. :o(
The table is real wood and we've shortened it from the 10' it was to make room for high chairs. The worn-ness on the table shows 20 years of use. School books, dinners, crafts. It has been well loved!

We are SO BLESSED!!
PRAISING God!!
(((HUGS)))

Tuesday, August 20, 2013

Did she really bite Dad's toe?

Cute as a button isn't she? She has come a long way since she joined us last March.
She had used crying and tantrums as a means to communicate everything she did not like. And there was little she did like.
Now she only cries for reasons that make more sense. Things we can figure out.
When she cried for no reason, she seemed a lost soul.
Now she belongs. No longer lost, home for good at long last.

Communication is still challenging for her. Some days she does not let me know she "hears" me unless I have to discipline her. I want to communicate during our happy times too, but she's not ready yet. So when I tell her I love her or ask for her hand to give her something, she's not responding or wanting to listen. For now we pretend she does!

But if she hits her chest in anger or slaps her face, or taps things loudly to show she's not happy; she listens when I warn her that she may receive a time out. And she settles down.

Today washing her hair she let out one loud cry. I told her no crying. She did so well. She listened. Crying leads to tantrums, tantrums lead to hitting others (even me) and self abuse.

She gets it. She's trying! She has the maturity of a 3 year old. She'll be 6 next month. It's hard for her.

She has lots of life experience. First living with birth mom, then living with birth dad and paternal grandma, then living with a pre-adoptive family about 9 months, then visiting 2 more pre-adoptive families, and finally us.

But then being carted back and forth from March to June, due to legalities.

She had no say in any of it.

Only about once a week now. (not as frequent as before) She just can't handle things. She just can't get herself together. She completely loses it, and we can't reach her.

This is often from lack of sleep. She has a very hard time falling asleep. But she is learning to do that now too. So if she needs help we have to give her her medication, only about half a dose. She knows what it does, she was on it for years before we weaned her off. It makes her drowsy. It calms her down. Once all her medicals come we can get her new medicine from her new Dr to help sleep.

She's an absolutely beautiful child. She is so sweet. I am so thankful God sent her to us! We did something good for God to bless us with her! Thank You God!

And yes, we don't know why, but after Tom changed her diaper and as he was changing her brother Mosie's diaper, she bit his toe- hard!! LOL!! We have no idea why! But y'know Dad's not one to pay much attention to little girl's moods, so she figured out a good way to get his attention! LOL!! She's very smart!

Saturday, August 17, 2013

My LOVE Mosie's update- home one year

The shoe on his foot is size 2 and it was too big.
He weighed 15 pounds. Holding him felt like holding air. I was afraid the kids were going to accidentally break his bones.
He could barely sit up.
In August 2011 he had almost died.

Having him home was so much JOY!! LOVE and JOY!! That's my Mosie!! This was one month home! A little chair for a little boy! Now he needs a big chair!

"Look Ma! No hands!" My little daredevil. He can stand, climb, do a 4 point crawl faster than you can see him exit a room! LOL!! He also likes to commando crawl at high speeds to escape! He's very curious! He wants to run! But first he has to practice bending his knees to walk.

He stops at the top of the stairs and never goes closer than 2' by an open door. His brother Julius is trouble enough to open the door and run from us- but not Mosie. Mosie considers the seriousness of the situation. If he escapes to the bathroom he doesn't get into trouble, he sits and takes it all in!! Sometimes he takes it all in in the dark! He sits very quietly so he won't be found. That's hard for him to do!

He's a noisy guy who laughs with JOY all day long. And he "calls" us with silly sounds at nap time to let us know he's NOT napping! LOL! And when he crawls up the stairs he grunts "UH! UH!" loudly!! As if it gives him added strength!

All 3 older boys avoid danger. The 2 younger boys seem to think they are invincible- running into traffic looks good to them. Not Mosie, Noah or Jacob- they'll just watch!!
Tomorrow I have a few more beautiful pictures showing how our now 30 pound son has grown!

Still workin on Pauly 2 year pics. He hates his picture taken!

Saturday, August 10, 2013

Kabuki Syndrome??!!



One of these boys may NOT have Down Syndrome!
WHAT???!!!
Can you tell who it might be?
Mr Noah's medical description from his Country emphatically states: "Down Syndrome is present with the child. Chromosome Anomaly- 47 XY +21- complete form."

Yesterday a precious wonderful new friend/ blog reader enlightened me to the possibility that Noah might have Kabuki Syndrome. Found here~ http://kabukisyndrome.com/
Are you kidding me??
Those faces are my boy's face!
 Noah's precious birth mother was un-married. He was a second birth. Birth father un-known. Mamma was not careful. Noah "looked" as though he had FAS. (flat philtrum, low set ears, eyes wide apart) His facial features weren't too far off for the Down Syndrome they had diagnosed him with.
In fact I read that when Kabuki Syndrome babies are born the Dr tells them the baby has DS 90% of the time.
 I sent 2 pictures of Noah to an on-line DNA/Gene facial recognition program today. And on Monday we will set up DNA testing for him through his Dr.

 What is interesting to me was that his Pediatric Cardiologist took Noah's birth Country's word on his diagnosis. Noah's heart is healthy- which is a blessing. But being a Pediatric Cardiologist he has surely seen other children with Kabuki Syndrome, children with Kabuki Syndrome who do have heart conditions. I'm surprised he did not question Noah's diagnosis by what he saw.
You see when Julius saw his Urologist; that Dr questioned two big issues. First the Dr questioned Julius having Down Syndrome by his facial features. Then he questioned whether Julius was a boy by his anatomy. We thought it was crazy that he questioned the DS. We were frightened when he questioned Julius' gender. So we did the DNA blood tests. (almost $900.00 worth!) Julius does have DS and he is a boy! Phew!! :o) Not that we wouldn't still LOVE Julius, we just really thought we knew the answers before the tests!
 But now we are glad that Urologist asked questions about Julius. It was good to rule out the things he thought. I think Drs can easily be wrong, and for them to question is good. We were able to find out for sure with his help!
 But with my LOVE Noah, no one questioned anything until my dear new friend/blog reader saw him. I'm so glad she brought this to my attention.
 I'm so glad we can check now- because Noah has all of the classic facial features of Kabuki Syndrome. He also had the digestive issues common to Kabuki, the strabismus, the food tolerating issues, the finger tip protrusions. We can now find out what else we should need to check for.
Because this boy means everything to us! Down Syndrome or not. Kabuki Syndrome or not.This boy was sent to us from God. Only God's Hand could have brought him into our lives. He is perfect for us. Perfect for our family. Chosen by God for us! We LOVE this boy with every ounce of our being!

And I LOVE my blog readers!! (((HUGS)))

Wednesday, August 7, 2013

We are still here!

 Oh my! We had just kind of emotionally checked out from relief after M.A.'s court on the 26th of July.
We've also been drowning in Bella Mercy's finalization paper work. Our state is requesting tons of information- which is our responsibility to get because we have legal custody now. Thank goodness for FAX machines.
And then there's Group Home licensing.
Taxes. (in 2012 we filed for an extension)
And the boys decided to add tummy troubles aka blow outs in case we didn't already have enough to do!
I am still going to post about Pauly 2 yrs home as soon as Tom takes some pictures! We recently realized that Bella Mercy's favorite boy is her brother Pauly!
In the meantime, here's Jacob. The picture above is so typical of how Jacob looks when he prefers not to be interacted with.
 
This picture reminded me so much of his referral picture below! You can tell they are the same boy! This is Jacob's "go away" face. He knows he should not spit. But if you insist on bugging him- he'll make sure you get some.
Cute-cute-cute, he is certainly blessed with very handsome Bulgarian features. I know his birth parents are beautiful on the inside as well as the outside!
 
And this is how Jacob looks when he's plotting trouble! He can not resist laughing and smiling devilishly whenever he tries something naughty- like hitting, spitting or kicking.
Please excuse his early morning hair- he just got up!