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

Saturday, December 14, 2013

...............sigh.........................

Moses says~ "Just because I fit in this truck Lysa, does NOT mean I want to ride in it!" LOL!

We recently received the blessing/donation of diapers from a precious reader! Thank You so much! You know who you are! And her cousin who lived many miles away delivered them near to us! Thank You! God Bless you all! :o)

                    This beautiful child- haunted by 5 years of rejection.

We were told our precious daughter Mercy had a vascular malformation. This is true. We were told it was at the base of her spine where she sat- this is NOT true. At the base of her spine is an abrasion- due to who knows what it has grown- looks mean and the surgeon can remove it and it should not return. Just something odd she has- no explanation? Well no explanation we know because she came here at age 5 with it.

The vascular malformation is true. It is in her brain.

The Hematologist connected the dots and found out that all information sent to us contained huge errors. We knew info was lacking- but we are not Drs. It took a Dr to piece it all back together for us. Thank God she did! Sadly it's so much more complicated than any parent could imagine.

Here is a small bit of information on her vascular malformation-

"Some AVMs cause no symptoms at all and may never be discovered, but most become symptomatic at some point during the patient's life. Some AVMs can cause seizures or persistent headaches, sometimes as painful as migraines. Other symptoms depend largely on the location of the malformation and can include weakness or paralysis on one side of the body, trouble speaking, loss of coordination, numbness, tingling or pain. If the AVM is large or is blocking the flow of cerebrospinal fluid, severe headaches due to hydrocephalus can develop."

THIS is why she cries, THIS is why she screams, THIS is why she hits her head, slaps her face, throws herself into inconsolable melt downs refusing to be touched and cannot sleep without hitting her head on something because IT HURTS! This is why she refuses to be held when she is in pain.  

I called our adoption Social Worker who cried with me. There has been no one else here to care about her other than our family, and her/our adoption workers. Recently added to her caring list are our new friends/family in the Sotos Syndrome Association. Few choose to walk along side us as we LOVE Mercy. 

The Dr now says her developmental progress is iffy- we don't care. She most likely will not "talk"- we don't care. She could eventually lose all skills, or hemorrhage to death. It's all unknown. We won't worry about what hasn't happened or may not happen. All we care about is that we get a medication NOW to stop the pain that causes her to hurt herself. The Hematologist could only suggest Tylenol. We are waiting for an emergency referral for a neurologist. We had to cancel the Vascular specialist. But the VSM specialist will only write us a care plan, tell us more bad and good (hopefully) news- there is no cure/treatment. The neurologist should be our answer to pain management.

Can you believe this has been overlooked through 5 families in 5 years until us? Her birth family was told some of this. Why didn't they ask for more information? And then was it too much for them to let her next homes know this?

The "experts" we had spoken to from her past felt that a psychiatrist was needed because her behavior was so over the top? (a behavior management plan for your head hurting??) This just breaks my heart! Look what she's tried to do to tell everyone about her pain- all this time!!! and "experts" treated her with things like Risperidone? Which our new pediatrician also wanted, she wanted us to get a psych for her to continue the Behavior Management, but I said let's see what happens if she can sleep first! Let's see what her behavior is like if she can ever sleep! And now I see why sleep is so hard. Already Tylenol has helped her pain in ways that prove- it's pain NOT behavior! 

We have started a pain journal to help.

Maybe this is why her Sotos growth has also "slowed"? Maybe this is why her hair is so thin?

This brings up a whole NEW ball game.

The Lord brought her to us, because we are the family that will not give up- even if others doubt us or criticize us. We are the family who truly cares about her. And now with the 37 years of parenting experience, learned from 20 blessings before her- we finally see a better picture of God's plan. 

Yes, it has been very hard. We even questioned ourselves, our sanity. We questioned God. We had fear of failure. We were afraid. We had doubt. It has been 4 long months of questions we were afraid to ask. Because how could we explain it? How would we explain behavior that others had already identified and labeled as something else? No one was listening- no one believed us.

Until now.

Now we are free to say- THIS is why! We knew it was NOT behavior! We Praise God, only He could help us. He answered our fears, our doubts, our prayers.

We are FREE! To move forward. And Mercy is responding beautifully- as we always knew she could! Her future looks bright! God is so good! 

  
Another little one rejected by many- now fighting the affection/attention we give. It's so much easier to live what you "knew" than to learn to receive so much LOVE and attention. Jacob says "It's hard work being LOVED!" Sorry Jakie! We don't give up here!!
 
E-bay rules! $19.99 + $50.00 shipping- a new gait trainer for Noah! (Also known as "No-No-Man"! LOL) My lovely Son in Love will be adjusting the height on it as Noah grows! Thanx Dan! ;o)

Noah does NOT have Kabuki Syndrome! He has exactly what I wrote about here- http://theroaddownhome.blogspot.com/2012/10/fetal-alcohol-and-down-syndrome.html
 
Is he not one of the most beautiful boys ever? YES!! :o) The FAS will also be another reason that he is not going to grow as tall as he should.
And yet this boy IS LOVE!

 Yup! He knows he is cute! And he works it! Unfortunately when he is mad at us and is dead serious - who can believe it?? Poor guy! He has advanced stage Cuteness Syndrome!!

Once there were 3 boys who lived in one of the most frightening orphanages in cribs for 7 and 9 years. Only to be rescued by their old Daddy and brought to America to become- BROTHERS!!

Even Jakie cannot hide that THIS is a GOOD thing! LOL!! THIS is LOVE!!

 Last but not least our oldest still at home in his new suit! As Dad took pictures he yelled to me "Samson's giving me a lot of attitude!" To which I yelled back- "Well duh! He knows he's lookin good!" LOL!!

Eighteen years old. In homeschool grade 9 this year. What a special gift from God he is! He was just 3 yrs old when we drove him home from TX to Minnesota in a 12 passenger van with MA and Susie, and 6 of our children packed to the roof! We wondered how long we'd have him with such a serious heart condition. God must have wondered when we were ever going to fully trust His plans. After only a few months home his leaky heart IMPROVED!! And stabilized!!

And that is only a peek into our lives in the last 6 weeks!
LOVE and ((((HUGS))) to you ALL as we celebrate Christ's birth!

Friday, November 29, 2013

What a difference a year brings!

Last November we thought we were adopting a baby girl with Down Syndrome. She was born without Down Syndrome. And the agency gave her to another family.

We were devastated.

Noah, Moses and Jacob had just come home in September and life was amazing. We LOVED every minute of getting to know them, adding them to our family was pure JOY! And in finding out how little we knew about them, it helped us realize how bonded we were with Julius and Pauly; after having them home a year.

And then someone allowed satan to use them. And made false allegations against our family.

Our happy healthy children then ages 8,9,10 and 11 had to be interviewed by police and social workers. I took them immediately to our Dr to be examined for any possible sign of abuse. The false allegations were only regarding our non-disabled children.

The JOY we had with our new blessings homecoming was gone. The pain was horrible and it interfered with our bonding of our three new precious boys. As we told everyone we worked with and knew, people began to judge us. Many people supported us, but those who often were astounded by what we do- wondered about us.We don't keep secrets, we've worked with our County and State for 35 years. But when this happens you are on your own. My mother was heart sick for us. You find out who your real friends are.

This wasn't the first time there were false allegations. Our Molly reported me for "hitting" her in 1989. We had evidence that she'd also reported her previous adoptive family and that was why they disrupted their adoption and gave her to us. We also had an allegation, (2001) also found false regarding a group home client. Both times we were found not guilty and we requested they keep these on file. We have nothing to hide. Things have changed since then and they no longer "find" allegations false, they investigate only, and proceed if true.

When you choose to follow Christ, satan is never happy. People we loved allowed satan to use them against us. Please join us in praying for them. The sad part is they wanted to hurt Tom and I, but they hurt the non-disabled children living here, by having them go through exams and interviews; things that they themselves never had to experience as a child. No child should have to go through that. We encouraged the interviews. I wish you could read the interviews. They made me cry tears of JOY! They are such good kids, such wonderful blessings and they were as precious as could be in the interviews. They enjoyed meeting the police man and hearing about his kids. And they told the truth. We were asked more than once if one of our girls was "always so happy and cheerful"! Well of course she is! We wouldn't have it any other way!

We also had the "adoption" flu from the time the 3 boys came home (Sept) to January. Stress, adoption, their immune systems meeting ours. It happens every time and it makes everything 100X harder. Days are harder. Until we regain our strength, share our bacteria, we struggle. We didn't need the false allegations on top of it. We were already spread so thin, trying to gain momentum. This on top of everything was cruel.

As we were judged we weren't getting any referrals for our daughter. But that was o.k. we decided we needed to mourn the loss of those who hurt us, and we would re-start if we felt ready in March. Lord willing. Without a word from us-it was exactly mid March when the call came about our precious Mercy! God always answers prayers. God knows our hearts and God opens doors. He did not have to. We would have been fine with 1 less daughter. But He knew Mercy needed us. And we LOVE that our God is so much BIGGER than our prayers! He looks at our hearts, He knows us! He created us! He has judged us and we are glad!

So this November, this Thanksgiving, we had the happiest Thanksgiving ever!! We had so much to be Thankful for our hearts were over flowing! Each Thanksgiving we are here can only get better! We Worship a God who hears our cries, cares for the weak, and blesses the humble. We have no strength. He is our strength!

We have so much to Thank Him for! So much more than we deserve!
I only share this to show that anything you lose by following Christ will be returned to you. satan can hurt, but satan did not win! Hurt and pain will only be temporary- because God is LOVE!
(((((((((BIG HUGS))))))))))))

Tuesday, November 26, 2013

This and that...............

                               Julius trying on Mosie's pumpkin cap!

Where have we been. Wow! I had not realized it had been so long!
We just lost track of time.

Noah has decided the new puppy is boring. Of course she's twice as big as this now! She slipped on ice and hurt her leg. After a week she's still not putting her full weight on it. :o(

Mosie has been begging for free rides in the huge Tonks truck the boys think is too big to play with!! Lysa is more than willing!

 This is Samson's Iron Man mask. But Julius says it's his!!  Silly boy!

                                  I love the eye contact here! LOL!!

None of the boys are afraid of our 120 pound white dog Snow. But show them a puppy and they are wary!! Julius now loves our puppy "Sassy". And he helps with her a lot!

             Jacob thinks puppies should be "seen" and "not held"!! LOL!

Pauly is of course reserved with his Autism. He's not really reacting to her. And yet just yesterday for the first time ever, without looking at her, he reached his hand out to touch her!! And then he kept his hand on her muzzle! It was such an exciting moment! He does see her! And he has decided he likes her!! He has never touched our boy Snow.

And I found a gait trainer for Noah! It was under 100.00! It is slightly too short but my new SIL should be able to help me adjust it with something we can make so it will be a perfect fit!

                     The boys are busy~ busy~ busy with homeschool.

Miss Mercy has had a health scare. We thought she had a tumor, and after multiple tests and Drs visits we found out it is a (more severe problem) a vascular malformation- in a dangerous place. This plus her Thalassemia are cause to be concerned for her life. But we know she is in God's Hands. We are soon going to see the only specialist in our state for this. We aren't going to worry. The Lord did not bring her to us without a plan! We just don't know what it is yet! His Will be done!

Sunday, October 27, 2013

Pumpkin Day!

 You take 3 sisters and 1 brother, ages 9-10-11 and 12 and they wrangle up their 5 brothers, that absolutely MUST become pumpkins for October!
(Noah 10 left- Moses 8 right) And here are the results!

 Now these two boys knew exactly what was happening- because they have been here three Octobers now! But they weren't impressed with the tradition!
(Jacob 8 back left, Julius 6, Pauly 6)

Last year we had only 1 pumpkin outfit that fit Moses. After October there was a sale on these- and how could I resist? The only bad thing was none of the costumes fit Mercy. We did not know she was coming when I bought them.

                    L to R~ Jacob 8, Julius 6, Mosie 8, Pauly 6, Noah 10
                     Mission accomplished- 5 pumpkin boys! LOL!!

 Now you might think we have a favorite pumpkin.
But I hate to tell you it is just not true. Each pumpkin has the most distinct personality- we just cannot choose a favorite.
Mosie our smallest pumpkin is not as cuddly as he looks. But he is so absolutely adorable! He wins cutest pumpkin!

 He does not even have to do a darn thing to make the cuteness meter blow up from overload!! Oh how we LOVE this boy!!

 Julius 6, is one smart pumpkin! He's always one pumpkin ahead of us on everything. His adorable innocent look fools only those who do not know him! :o) Oh how we LOVE this boy!

 Noah 10, is our "great" pumpkin. Older, wiser than his younger brothers. He takes it all in stride. He's even tempered, kind and sweet! Oh how we LOVE this boy!

Pauly 6, is our pumpkin pie. His heart is always on his sleeve. You can crush his little feelings so easily if you don't notice his little attempts to be near you. He hugs and loves with every ounce of his being, and yet his fear of rejection often holds him back. Oh how we LOVE this boy!

And this is Jacob 8, our "Peter-Peter pumpkin eater"!! He will be your best friend if you have food and share with him! He entertains us with his amazing xylophone playing and now- singing! He has the sweetest little voice when he sings. But don't tell him or he'll stop! Oh how we LOVE this boy!!

So do you see what I mean? You just can't have one favorite pumpkin!!

I have to tell you though, that we never have a bad day with our boys. Never. They give more to us than we give to them. They find JOY in every day. And they share it with us constantly. Our cup over flows.

So when this young lady~
has bad days and negative behaviors are a chosen way to get attention. Especially in the middle of the night. (she has horrible insomnia) Or her frustration leads to self injurious behaviors.

Honestly,

We wouldn't have the love and patience without the LOVE that these boys share with us so freely.

Do you see how we did not just save their (the boy's) lives~ they most certainly saved ours as well.
It was only by the grace of God that we are the ones who God chose to parent these precious children.
Never think for a moment "we" did anything!
God is so good!

Tuesday, October 8, 2013

900 diapers a month later

Maybe you remember last year?
We put all 5 boys on the couch together!
This year you can see the results above! LOL!!
Yup 100% ALL BOYS!
Below is the most semi-calm photo we could get.
However in their defense if we practiced daily- we could get something not as fun but more posed!

Now compare those 2 pictures! September 2012 and September 2013.

Even we can't believe how much they've grown!

September 2012~Julius, Noah and Jacob wearing size 3T, Pauly wearing 2T, Mosie wearing 18 months.
(Julius 5,Pauly 5, Noah 9, Mosie 7, Jacob 7)

September 2013~ Julius, Pauly, Noah, Jacob wear size 5T and are outgrowing 5T as I write. Mosie wears size 2T and should be in 3T soon.
(Noah 10, Mosie 8, Jacob 8, Julius 6, Pauly 6)


                              Our Princess had a birthday! 6 years old!

And yes, 6 children in diapers. No subsidies or government funding, and 900 diapers a month. Thank the Lord for Amazon Prime and free shipping!
No complaints here! :o)

(((HUGS))) and prayers everybody!

Saturday, October 5, 2013

Therapy puppy

Our Honeybee works hard. Even tho she's just a baby.
She's only 10 weeks old here. And she's already started her job! Loving her people. Encouraging them to be the best they can be!

Please excuse the fact that Noah is wearing Pauly's size 3T shirt! LOL! Not sure who dressed him?
And the food on him is from finishing breakfast. Hungry guys let food fly!
And the need for a haircut! Well, I have been begging him to let me trim it and he refuses. So I've dreaded doing the shaved head. I do so love his hair! But if he won't let me trim it..............

Honeybee fascinates him! We have to be careful, Noah's curiosity makes him vulnerable to puppy scratches.

Noah studies her and watches her. He "tells" us all about her with his sweet voice and his little words like "byo bga k". No we don't know what that means, but the way he "talks" is so gentle and with great purpose, you just have to agree with him! We love every minute of it. He has such a soft heart. If Julius steals his toy he cries with anguish and sadness our hearts break with him.

Noah is not able to repeat words we say to him. But he mimics the sounds of others voices! He's so good at it he can fool us into thinking we hear someone else!

There is so much for Noah to see and learn about on a puppy. Good thing she has small teeth. They may be slightly poky, but they aren't able to hurt much.

               Noah likes her but he's not quite sure yet what she's good for!

Noah likes tongues. Noah still enjoys a random spit. Wow! look at that tongue Noah! LOL!

                              Yup, Noah's tongue still works too! :o)

Honeybee is beginning to wonder if Noah does anything besides watch!

            Noah likes everything about her. But what do you do with her?

                 Yes! We can touch tongues! That is what she's good for!
                                                        Perfect!

We are still waiting on the Chromosome test results for Noah. They said the Kabuki test was too $$. But if he does not have DS, they might pay for the Kabuki test.

Noah is now walking along the furniture! He won't take any steps without hanging on. But to see him walk along the furniture is exciting!
We looked high and low for a used gait trainer, but no luck. We might be able to get one made out of weighted PVC pipe! Insurance won't pay even with our PTs recommendation.

Tuesday, October 1, 2013

Welcome Readers from GOMI

I'd like to clarify a few things for my precious GOMI readers.
Yes God says we are ALL precious in His sight. It says that in the Bible.

Your postings about us on GOMI have been less than truthful.

Tom and I are 59 and 56 years old. We aren't older- we're old. We have no problem being old. We have raised children for 37 1/2 years. Children with and without disabilities. WE ARE QUALIFIED. We have training in Foster Care, Waivered Services, Disabilities, Developmental Delays..........and I could go on and on. We have done Child foster care, Adoption, Adult foster Care, Waivered Services, sheltered un-wed birthmoms, to name a few of the services we've provided with County, State and Federal licenses. We've worked with non-profit agencies as well. We work under the supervision of Social Workers and Case Managers.

We are not "religiously driven". We are members of the Church of Christ a non-denomination church that does not follow religion, but follows the Bible. We express our beliefs. We follow Christ. We are led. Not driven. Yes, there is a difference. I imagine you have your own beliefs as well. Did I attack them?

We have adopted 7 children with Down Syndrome- but one may have been misdiagnosed.

We have 15 people in our teensy house, not 14.

We do not do OT/PT we have hired professionals who come into our home. Since they don't live here, we do things as well for our children to educate them and help them learn. Teaching adaptive living skills through Homeschool as well as using curriculum. I am a trained Adaptive Living Skills teacher for the Adults in our group home as well.

I can legally post pictures of my daughter that we have custody of. I only share medical conditions of my children that my readers can use or relate to. My children have many medical conditions that I will never post about to protect their privacy. My daughter was here for months before I posted a picture, or told anyone.

I find calling us and our precious children "assorted people" rude. First you come off as caring about the children's privacy/identity/adoption etc and then you call them "assorted people"?

You also mentioned this- and I quote~
{For a taste of how aware of adoption issues they are, a recent quote about their 18 year old's birthday says the child'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."}

Obviously the poster is unaware of adoption issues. Because my son's heart condition, lack of hypotonia, his stature or his heritage has anything to do with adoption. If he was our birth son his prognosis would be the same. And his heritage is what it is. Are you racist?

So now that I've become really popular attracting a lot of attention on your website I just wanted to give you the facts. And since I could not do so directly to you, I knew you'd be anxious to come here and read more about our spectacular family and beautiful life. So since you are all coming to see me here, I can respond to you here!

Remember, Do unto others as you would have them do unto you.
You are in my thoughts and prayers.
In Christian Love,
you know who we are ;o)

M.A. and Honeybee

                                   (M.A. is laughing hysterically here!)
Well I changed her "call" name to Honeybee. There was no way she could have a regular name when she is so incredibly special.
She is not like any dog we've owned!
She's not a Shiloh Shepherd like our Snow. Or a Pembroke Corgi like our Squiggy. Or a Great Pyrenese like our Bouquet and Babe. Or even a Pomeranian like our Lilly. (we've had many dogs in 38 years!)
Honeybee is a British Labrador.

M.A. has never been able to hold any of our other puppies. They did not have the "trust" to be held. They could get hurt or hurt her. They never could have been held by anyone who may hold them in a unusual way. But Honeybee can!
Honeybee trusts M.A.

 M.A. is very happy about the puppy's name change. She did not approve of a dog named Mary! LOL!

It's so cute that M.A. is feeling a huge responsibility holding this 12 pound puppy. Honeybee is really not that difficult to hold! :o)

 In fact Honeybee prefers to be held! At all times! By anyone!

She is truly the most "people dog" we have ever had! Some of our dogs like kids but ignore the adults, some like adults but bark when the kids get rowdy.
Honeybee LOVES everyone. So it's a good thing she'll wear a harness that says "Do not pet I am working!"
She will need to learn to ignore those outside our family.

What a blessing to have such a well rounded puppy in our lives. We are enjoying her so much!

I hope you won't get sick of puppy pictures because we have pictures of Honeybee with everybody! And they are too cute not to post!

We thank God for our precious new canine companion, who is soon to be my mobility dog and our Therapy dog!
Love-love-love this puppy!