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)))

Friday, April 25, 2014

Mesothelioma - we need to be aware, educated

For more information on Mesothelioma please go here~

About 14 years ago. A neighbor (that I have known for over 36 years) told me her husband had cancer. Mesothelioma.

I knew he'd been sick. He was only 62. He was a retired police officer in our then small community. He was the officer that went around to speak to the schools, the children and other groups. Everyone knew him. He had a gift with people. Everyone loved him. And I felt special because he was my neighbor, right across the street. My children loved him. He called me "lees". My nickname for Elizabeth is lisa, it wasn't short enough for him! LOL! So he made it shorter. 

He was a good father. A wonderful husband. And he was a much loved Grandfather. He was the kind of man every man would want to be.

Since he was retired, he had been traveling across the the states, in his RV with his wife. But during their last trip, he had a cough with chest pain. Each Hospital brushed it off as pneumonia. Even when he was home, the Dr treated it again as pneumonia. After it eventually became worse he went to the hospital here. It was finally diagnosed. Mesothelioma and it had spread to his esophagus. There was no cure. There was nothing left to do. Chemo, radiation would not fix the damage or make him well. He died within 3 months. 

Jim accepted it. The rest of us did not accept it as well.
Why didn't we see it? Know what it was? And was asbestos really that dangerous?  

We bought our house across the street from Jim in 1977. We have asbestos siding. The police station where Jim worked was very old and filled with crumbling asbestos. It was/is everywhere. My parents poo-pooed asbestos warnings. So Tom and I didn't worry about it either. Until Jim died. 

And now a precious woman named Heather had contacted me and asked me if I'd get the word out. About Mesothelioma.
When Heather was only 36 she was given 15 months to live. She had Mesothelioma. She didn't know I lost a friend to this horrible disease. And I told her I'd gladly blog about  Mesothelioma awareness. In memory of my friend Jim. 
We need to get the word out!

Heather has a great blog here~
That tells her story.
It also has a link to the Mesothelioma dot com website with tons of information on everything! I have not read through all of it- there is so much!! But I have learned a lot already. Heather's story and courage inspire me. 

I think you too will be touched by Heather's incredibly brave story!
This is her beautiful family now!

I think Mesothelioma is something we tend to think is not that common or worrisome, until you too know someone with it. Asbestos has not gone away. And we never know who might be affected by it next. There are things we can do to protect ourselves and be pro-active against asbestos. There are things we should know. So please get the word out! Please visit Heather's amazing blog as well as the Mesothelioma.com web site to be aware of this horrible preventable disease.

When you visit her blog, let Heather know that she is in your prayers. She is an amazing young woman who wants to help save other lives! I think she's doing an amazing job!   

Thursday, April 10, 2014

Hope this makes sense

Julius (6) is our only little boy who is interested and inquisitive about our daily routine. He likes to "know" everything! Like where and when he goes/does next. And he wants to "help". He likes our new puppy and pets her. He signs a few signs, only signs that he likes! But he refuses to mimic sounds to speak. He understands just about everything we say to him. He understands what "pick up" means when we say "pick up it's bed time".
Julius will watch us talk or watch us do things and we encourage him to try everything with us. But he's just not interested. He can come hug me or kiss me if I ask him. He likes to make his brothers and Mercy do what we ask by pushing them toward us if we call their name. He likes to be the "rule" keeper. And yet he's our biggest rule breaker! LOL! Julius doesn't like to be told no! Lots of normal behavior!

What's different is that none of the boys know or care what Holidays are, or why we celebrate a thing called a Birthday. They have no interest in TV/Movies or popular children characters. They don't care about music, or singing or dancing. They have no favorite toy.  Julius may hold Mercy's baby doll like a "real" baby. And then he'll throw it on the floor and walk on it. They don't know what stuffed toys are for. And dolls mean nothing to Mercy. 
We don't eat a lot of sweets, but the older kids always enjoy them when we do! Not the 5 boys! Nope, they do not like ice cream, cake cookies or candy at all. They get a "pained" look in their eyes. "If" they will even take a bite! So no Birthday cakes. Mercy had been exposed to sweets so she will eat them, and of course prefers them! And my Julius unfortunately eats lots of non-edible items like carpet fuzz, stickers and kleenex with great glee.

 Pauly (6) is Autistic. He likes a toy lego only to tap on his teeth. He hates to give anything eye contact. He'd be happy just to sit and snuggle and laugh chewing on his hands. (he always chews on his hands when he laughs??!!) I could hug and squish him all day! But I have to push him to grow and learn.  
He's curious but fearful. He must have a strict routine or he has no idea what to do and that upsets him. He doesn't like anything new or different. If you call him he has to build up the courage to come, because he'd rather sit, it's security to him. If I get him to come with me, he waits his turn patiently, but if he can't wait he just does what he wants hoping it is his turn!

Moses (9) wants to run. He's figured out how to use Noah's gait trainer (walker) to run and he can manipulate it in any room even though it's bigger than him. Physical activity is everything to him. He is free from the orphanage- free from the crib, free from weighing 15 pounds with little strength barely able to sit. He climbs up the front of Daddy all day long! Tom holds his hands and he climbs! If you walk past him he grabs your pant legs and pulls to a stand and walks "with" you! He's always on the go. He's always curious- especially of the bathroom!   

Jacob (9) likes to tear, rip break and destroy! He's the only boy who can manipulate certain electronic toys to stop working, every- single- time!! He also kicks, hits and pinches his siblings- and then laughs. He only wants to do what he wants to do or he cries and "yells" at you! Jacob does not like to be included in activities.
But you can't help but love him. He's a little lost soul trying to find his way- on his terms. He prefers us to strangers and shows us he appreciates all we do by that. He has always been fearful of people, for good reason. So his trust is prized here!

 Noah (10) is just love. He always makes each day a happy day for himself and us! But he chews, and chews. He chews his clothes and our clothes, books, toys, rugs. He's a chewing machine. He likes to be included in everything. Sometimes his feelings get hurt and you can't console him. That's hard. He's kept the most behaviors from the orphanage as the oldest. He still rocks on his back arching his neck rubbing off hair. He still pokes his eyes and chews his hand. We let it go, except for eye poking, because he's such a good natured boy, and he does these things without thinking. It was how he survived 9 years. 
Mercy (6) does like one baby toy that pops balls. She'll pop it in anger, or just pop it to comfort herself. Almost an Autistic behavior. If it is missing or a brother has taken it she SCREAMS! 
Mostly she prefers ripping pages out of books and catalogs that are not hers. And getting into her sisters things. 

Some days I feel sad. I feel a loss for some of the behaviors we tend to think all children have, or should have, but these 6 children don't. I expected them to appreciate what our other kids did, even our older special needs kids. Like having an interest or a favorite something- anything!!

Things like-
Getting excited that their Birthday is coming- they don't get excited about, they don't understand. The Birthdays come and go with a favorite dinner made for them and a small gift of a toy or book that they throw aside with no interest.
They don't want "things". So what to buy? 
If a new animated movie or cartoon character comes out- they don't notice or see.
If a fun/popular song like "Let it go" is sung/played over and over, it means nothing to them.
If we buy them a shirt with a cute picture/character- they don't pay attention.
If we buy them cute clothes and shoes they don't really care.
If we have something new in the house, they aren't interested.
If we go somewhere fun like shopping, out to eat, the park, up north they fret over the change/changes in their schedule. They don't enjoy it.
If we celebrate good news they watch us.
If their older siblings have fun things- they don't notice.

You might think, with time this should come. We did too. But Julius and Pauly our youngest boys came home at age 4, and both have been here almost 3 years. The only things they've really picked up on enjoying is us and our relationship with them. Of course those are the most important things of all!
Noah, Moses and Jacob have been here almost 2 years, they came home much older. (7,7,9) They actually appreciated us faster and earlier than the younger boys. But with time they are even less interested in "things" than the younger two. 
And then there is Mercy our Sleepless Beauty! She always has to trump all 5 boys! *wink*. She has only been here a year and now she's ready to move on since a year is the longest she's lived anywhere! She doesn't appreciate us yet, but we have hope that she will! We certainly appreciate her!

I hope I don't sound like I'm complaining! I'm not complaining. It's just hard sometimes. I just miss sharing the excitement of Birthdays and Holidays with them. Or getting them something special. Or asking them who a popular character is like Barney. Or where the toy cars are. Or playing with a toy with them that they enjoy.

I wouldn't change them for the world! They are perfect in every way. And their LOVE of us is the only thing that matters. And they do get that. They do understand that. Now I need to toss these cultural expectations and enjoy what we have!
I thank God for what we have!

Tuesday, April 8, 2014

Life is what happens when you make other plans.............

This picture is from last fall. We don't use the play pen anymore. The boys are waay too big! We have a gate in front of the TV now.
The kids on the floor- Jacob (8) left, Moses (8) Faith (right) 12 on the couch, Lysa 11, Kitty 10, Isaiah 9. Noah, Pauly and Julius in the playpen. Don't know why they are sitting, they used to stand and watch TV. Miss Mercy is off floating around- she hates to sit still!

I wanted to write a post about raising kids who have no interest in "normal" kid things and how hard that is. 

And then the Neurologist called............twice.
(yup the "bad" Neuro)

People were praying over my last post! I know they were! God answered your prayers! 
The Neuro read Mercy's ENTIRE medical file. The same woman who could only flip through her phone to "scan" Sotos, while Tom sat anxiously waiting to hear she would help us. A Neuro who believed the Psych who believed the Social Worker mom (of Mercy's last family), diagnosing her as mentally ill. The Neuro's heart was changed and she read every word and gained new found wisdom to share with us.

I wish I could say it was good news from the Neuro. The good news is we now have the Neuro (the Hematologist and the Geneticist) fighting on our side.

The "sore" on her bottom that we were told by the last family was one thing, and then by her pediatrician told us it was the vascular malformation, which is really on her brain. 
Well the sore (dimple) is a "symptom" of a tethered spinal cord. Not good- but now we know exactly what THAT is. She'll see a Neuro Surgeon next. But first I want her to see the Vascular Specialist about her brain. Just going on Mommy instincts.

Tethered cord can cause pain, and/or lack of feeling, Thalasseima can cause pain, Vascular malformations can cause pain. I feel like I need a 5 year nap. It's a lot to swallow for a 6 yr old. And it's not even me. I cry for her every day.

The Social Worker called right after the Dr. There was no way we could talk to her after digesting all of what the Neuro said.

Plus the Neuro now believes us, she believes that Mental Health issues are not causing all of her behaviors. And she completely understands why we don't want her on psych meds. at 6 yrs old. She also read about Mercy's sad past (all families rejecting her) and commended us for caring so strongly about her. And she applauded our efforts. 

She suggested we see the eye Dr. We are going to give it a shot. She does not cooperate with exams. But it's worth a shot. Neuro is strongly recommending Speech therapy, as we are too. We do Speech games with her now. But we need to get all of these medical appointments done first. (More MRIs and ultra sounds, traveling 140 miles round trip) 

We've had other kids reject Speech therapy (our Samson refused to go) so we know with Mercy, she may scream to get out of it. She does not like to cooperate. :o) We will see! *wink* If it takes no one will be happier than us. 

On a frustrating note- please pray our insurance starts covering her. Since she's not officially an adopted yet they are rejecting over $3,000.00 worth of medical bills. We have no support for our kids other than Samson pays $500.00 room and board. Our group home gals support us. None of our children get any aid. Only 2 out of 21 children ever did, and they are long grown. That's another reason no one "wanted" Mercy, who would do this and support her. We rely on God!

The last family that Mercy lived with divorced. You can't help but think that the stress of caring for her had to be a contributing straw that broke the camels back. But I am just guessing. I can tell you that after Tom dreamed of having a beautiful daughter from Bulgaria, Mercy was not a welcome sight. He really struggled with her level of difficult care. And if I had said she should go, he would have supported that. But I prayed so hard and this is who God sent, I believe we need her as much as she needs us.

Today after much prayer over this precious child it came to me that our marriage is stronger because of Mercy. Because of her very high needs for both Tom and I, we are united in caring for her. Isn't it amazing how God can use hardship for good?!
And so that's how my post for today came to be.

Thanking God for teaching us that it is not about us. But we are BLESSED beyond measure as a result!

(((((HUGS)))))))) everyone! Thank You for your prayers! 

Thursday, April 3, 2014

I threw a tantrum.........

Last month we saw the Geneticist Dr T. 
I LOVE him. 
He diagnosed our Molly over 15 years ago. (Along with her child Psych Dr R we LOVE him too!). I asked Dr T if he remembered Molly/us. He did. :o) 
He wrote the nicest letter/summary of our visit with Mercy! Did I mention how much we LOVE him? :o) He is so supportive!

On his recommendation Mercy saw the Cardiologist, had a Scoliosis x-ray and a kidney ultra sound. All good! Praise God!!

We need to watch for tumors. Anything unusual- could be the sign of a tumor. Oh my how vague can that be? We pray that there are none and we pray that if there are the Lord will show us a sign from her!

Dr T did not recommend a Neuro, even tho I told him we were seeing one. He had the feeling a Neuro would not be any help. I found that interesting, because I shared with him that one Neuro had already rejected taking Mercy as a patient. But Children's Hospital said a Neuro could come there to see her. (Children's is 75 miles away, in awful traffic.) I told Dr T I was confident Children's would help us. And since the only pediatric Vascular Specialist also works at Children's- surely they could work together. He suggested we stick with Children's then.

Two of the boy's with difficult "little men surgeries" used Children's Hospital Drs and we loved them! They really understood us.

Yesterday Tom took Mercy to the much anticipated and awaited Neuro visit. And it was awful. They left at noon and returned at 7 p.m.

The Neuro suggested~ stopping Tylenol because long term use may eventually cause pain, try to figure out where the pain really is because Vascular malformations do not cause pain! When we were told by the Hematologist that they can cause pain, plus we know her Thalassemia causes her pain. Neuro suggested we try to "find" the pain first?? Neuro said we can't test for seizures because Mercy's non-verbal? Neuro said the pain may really be "behaviors" so maybe Mercy should go back on Risperidone until a Psych can see her? (The Risperidone by the last family was said to be started for sleep- but then it was upped to 3 doses a day??- she was then given 2 mental illness diagnosis' which we find not to be true.) Neuro thinks she should go to Public school instead of Homeschool getting her home based therapies- when we know school will ask us to medicate her to stop her screaming, and we don't think that is the answer. That's what Public school did with Samson after they locked him in the padded time out room and he went crazy. He never goes crazy! So we did try meds with him, but they made him sick, and there were no changes at school, so we quit the med and by the next year we decided to just take him home and we home school him successfully. 

We have lived with Mercy over a year now. Every Dr has mentioned Behaviors. Yes she has behaviors. But how can we know what the Behaviors are and what aren't Behaviors; when we can't get help with her medical concerns first!!! Goodness, we aren't making things up! Why are Drs more eager to accept "Behaviors" than our concerns?

Poor Tom- 
I'm ashamed to admit I threw a tantrum. I cried and yelled in frustration. My hopes had been too high. 
Darn it I LOVE this little girl.
And no one is listening to us. And how can we be successful in raising her without more Dr support??!!
This is not the kind of child you can raise without extended medical help!
How can these Drs use the information from her past (described as "behaviors") against her; when none of those people lived with her longer than a year. None had ever committed to caring for her, for her whole life. 

But we have. 

And we don't understand why the Drs wouldn't appreciate our determination to save a child. Why are they more ready to accept the negative past Behavior and not the positive behavior we tell them she has now when she's pain free? Why does she fall through the cracks? 

Well we do have Dr T and the Hematologist on our side. And maybe her pediatrician (who is the same age as my oldest daughter) has come to have an "understanding" with us, but she tends to side with the other Drs if she has to choose. Altho she does admit~ we are the parents. Meaning we can try things we see fit. And I appreciate that. Because we will try anything to help her.

Because we have been the last hope of a family for Mercy. We have fight for her needs, we learn/study/research everything about her conditions, we re-arranged our lives to watch her closely to "see" what she wants/needs, we listen to her non-verbal communication, we search for the best medical help for her, we saw her in pain and responded, we saw her respond to Tylenol as a huge help in relieving her pain. We continue to read and reasearch so we can tell the Dr exactly what we see, what we know/think she needs.     
We still don't have an appt with the Vascular Specialist. Right now I don't have my hopes up about his help. But Dr T did say he'll be able to tell us the seriousness of the condition or if we do not need to worry. 
Other than that Tom and I feel like we have done a lot for her with the help of the Hematologist and Dr T the geneticist. I'm thinking maybe Dr T can tell us if the Pain Center here takes children. Or if there is a Pain Center for children?

We won't give up this fight.