Tuesday, March 6, 2018

All kinds of new things!

Look on who made it back to church!  this was the first time he'd been out of the house except to go to the doctor for 7 weeks!  He still is having issues getting his tummy back in order and is on some stool softener and laxatives.   We are working hard on decreasing the amount of meds as we know his belly needs to get back to work on it's own.  

 The other night Shad and I were out walking/running the new dog...pictures to come... and I took these beautiful pictures.  It was amazing! 
What else was amazing is one of my neighbors saw me and then sent me a message the next day to tell me that she had spotted a Florida panther  down by the river less than a mile from my house and only about a quarter mile from where I was walking!!!!  WOW!   At least I enjoyed the night!!!

Oh Lord!  Am I crazy or what?  Last week I got a call about this girl.  She is a  refugee from Puerto Rico.  She got sent here and a lady adopted her.  The lady lived in an apartment and the dog is not an apartment dog!  LOL  So I agreed to take her after talking with my husband.  He was gung ho  about her but you know who does the hard work right?   It took a few days for us to come up with a name but we named her Molly.  

Molly is a handful to say the least but she is sweet.  She's learning commands already.  We were told she only knew Spanish LOL  She is crate trained which is wonderful.  We have a huge crate that she sleeps in under our car port. We are planning on transitioning  her to a doghouse but want to make sure she won't go out the fence at night.   She hasn't tried to dig or jump the fence which is good.  Our Lab Brownie was a wonderful dog but she loved to dig!  Molly is way too excited  to be around the little kids yet.  We are really working on her not jumping up.  She has scratched all of us and knocked me down once. 

I need to take some videos of her and the cats-they have firmly put her in her place :)  

We have tried several times to find a dog for our family.  We had Brownie for many years, she was 16 years old when she died.  We just have not been successful with dogs since then.  We have been able to find homes for the dogs that didn't work out with our family thankfully.  It takes a special dog to be around my little ones.  I think Molly may work out but she is still a puppy- a 50 pound strong excited puppy .....   

Sam and Sarah got a lovely gift from our local Lion's Club yesterday!!!
The Lion's Club gave them a new swing set!  It's 8 foot tall and came with 4 swings.  We replaced two of the swings with the kids' swings they got for Christmas for now.   We are going to put a foot of mulch under the seing set, so it's not quite finished. and that's why the seats look so high.  
This swing set will be something they can use well into adult age.  Sam and Sarah both crave swinging.  - it meets their Vestibular movement needs.  

Vestibular ,movement  is necessary for us all but especially for kids who are vision impaired. 


From the website above

The Power of Vestibular input

Vestibular input (movement and balance) is critical for brain development beginning in utero. Then after birth, it is how we calm infants and also how we make them smile and giggle. We rock them, bounce them, swing them, and sway them. All of this movement is doing a whole lot more than putting them to sleep or making them smile. It is creating a foundation for the brain and development. This need for movement continues throughout life and is especially crucial in the developmental years, but it is essential throughout our lives to support self-regulation.

Key Points on Vestibular Input and How to Make a Difference

  • Everyone should have the opportunity to get up and move every 15 minutes. Even just a quick stretch is beneficial. 
  • Inverting the head is very powerful and an excellent tool for a quick dose of vestibular input. 
  • Fifteen minutes of swinging can have a 6-8 hour effect on the brain.
  • There are 3 vestibules, all which detect and process different planes and directions of movement: back and forth, side to side, rotary, diagonal, and vertical input. It is important to incorporate all of these planes of movement, but allow rotary input only in controlled doses.
  • Vertical vestibular input (bouncing and jumping) is typically the most accepted form of vestibular input and is very regulating and organizing since it also involves a great deal of proprioception. 
  • Whenever possible, offer options besides sitting in a chair…lying on the floor propped on elbows, standing on a balance board, standing on a BOSU ball, sitting on a ball chair or T-stool, etc.
  • Spinning needs to be limited and supervised. This can be very disorganizing for the brain and can cause delayed sensory overload and dysregulation. Monitor spinning and limit to one revolution per second and a maximum of 10 revolutions, then switch directions. This is referring to single point axis spinning. 
  • Respect a child’s reaction to vestibular input as it can be very powerful and cause a systemic reaction such as nausea, a headache, flushing of the skin, and even a low grade fever. Stop means stop if the child has had enough. Watch closely for signs of sensory overload, especially if the child is unable to verbally communicate.

Thank you Lion's Club!  I know Sam and Sarah will have many years of enjoyment on this swing set!!!!!  I'll post again when we put the mulch in!

Friday, March 2, 2018



Boy, Born September 2004
Nolan is such a handsome boy!  He needs a loving family!
Listed: August 4, 2010
From his medical records:  long-term effects of some early trauma (right-side hemiparesis), mild mental delays, seizures, flat feet, farsightedness
He has fine motor skills, understands everything, he talks but it is hard to understand him.  Nolan is very physically active, happy and cooperative, friends with other children.   A family living in the states who has 3 children, one who is significantly disabled, has taken a special interest in Nolan but cannot add Nolan to their own family due to the needs of their children. Per the family, “Nolan’s eyes and smile caught our heart. He is close in age to one of our own children. We hope this gift will enable someone to give Nolan the chance to live outside an institution.”
A family must have a completed homestudy to commit to Nolan.  Due to the size of Nolan’s grant, 50% of grant funds will be available upon receiving a travel date, and the other 50% upon passing court.
Nolan has a grant of $19,597.50 available towards the cost of his adoption!

This was written by a family who had hosted him and wanted to adopt him.....
(hosting is a program where the child can come to America for a few weeks with the hope of meeting a family who will adopt him/her

As some of you know, we were going to adopt Nolan. HE ONLY HAS 2 YEARS BEFORE HE IS TOO OLD! ALSO: WE DON'T KNOW HOW LONG INTERNATIONAL ADOPTION WILL BE ALLOWED. He is an orphan with very mild special needs who lives in Ukraine. In fact, we had spent many thousands of dollars to do that, but some bad things happened financially. HIS ADOPTION IS FULLY FUNDED! YOU WILL JUST NEED TO PAY TO HAVE A HOME STUDY AND FILE A USCIS FORM AND BE FINGERPRINTED! We're in a lawsuit with a Chinese factory who committed fraud against us and I don't really know what will happen to my family right now, as essentially, they stole so much, we are actually thinking of buying a cheap RV to live in with our 4 kids as a back up plan. I hope that gives you some idea of the magnitude of what we're going through. I hoped this would all get settled fast, but right now, I just want to know that he is not going to be left behind.
I tell you this ONLY because many of you also know that we hosted him and I don't want anyone to think that we backed out because of him being difficult or anything besides the issues we are facing.
I visit his profile several times a week because I can't stand the idea of THIS child being left behind...so I am writing this plea for him.
There's a lot I want to tell you. He lived with us for a month. WE LOVE HIM. He *really* needs medical help. His jaw is out of alignment very very badly, so much so that when he eats and drinks, it comes out of his mouth.
1. He sat on my lap every single night and listened to Gospel music. His favorite is "Amazing Grace." He knows when it's a Christian song, even if it's in English and he says "Christo!" Somewhere, someone has told this child about Jesus.
2. He was calling me Mama from day one without me telling him to. When I had to send him home, he was crying so hard, they were not going to let him get on the plane.
3. He cried when I went anywhere and actually got insanely upset ( he self harmed) BUT...This is actually a good thing, because he bonded with me so easily.
4. When he first came, if he got hurt, he would keep smiling and tried to take care of himself as if they are not allowed to have feelings, but after awhile, he cried and came to me.
6. He is a very fast learner, having learned the English ABCs in 3 days. He has mad building skills.
7. He bonds with women and sees men as a big brother and likes to harrass them.
8. He is a vegetarian.
9. He is a food hoarder and also hoards other things. I worked with him on this and it got much better.
10. His sense of humor will keep your family laughing, but also, he is sometimes very very naughty.
10B. You HAVE to give him work to do or he will get in trouble. He LOVES working. He can not take a minute of boredom or he starts rocking.
I wrote about him extensively while we were hosting him and I am here to answer questions to anyone about him. He never had a seizure while he was with us.
PLEASE PLEASE PLEASE CONSIDER HIM. HE IS SO WORTHY! https://reecesrainbow.org/1377/nolan117

I am not advocating for any program or adoption facilitators JUST for this child.  

Wednesday, February 28, 2018

My Thoughts on Recent Events

I love History-my favorite time is World War II.  That time frame and what led up to it, fascinates me.   But recently I read "Killing England" by Bill O'Reilly.   It's been awhile since I've read about the Revolutionary War.  Of course I studied it in school and in college as most of my generation did and have a basic understanding of the time frame.

But reading this book, reminded me of how brutal the war really was.  As I read of the decisions of  General Washington and other leaders it made me think.   Washington would hang deserters, no appeals...  he pushed his soldiers to the limit, and himself also.   While in most battles, the losing soldiers were often killed rather than taken prisoner.  This war went on for five long years.

Do we have that same kind of strength today to fight against an enemy?  Unfortunately I do not think we do.  If our generation had to make a choice to either stay with an unjust government or rebel, this generation would not have the courage to stand up and fight.  It would cost too much.

When I look around, I can not imagine our younger generation being able to stand up and fight like America did in WWI or WWII.  I see young men who are not growing up to be men but rather just older boys.  It's sad to me.  Oh there are some who are growing up to become men but so many who are not.

This all ties into what I'm seeing in social media following the shooting in Broward County Florida.
For the record, I feel the FBI, the Broward County Sheriff's Office and the Broward County School District are responsible for not stopping this attack.   Sheriff Israel is the absolute worse sheriff and I am glad the Governor has the FDLE investigating his office!   I believe Sheriff Israel with be relieved of his duties!

After the shooting I wrote this on FB

"Y'all know I grew up in the South in the 70's-80's. Every home I visited had guns in it. My home had loaded guns in it and I was instructed not to play with them so I didn't. All my relatives were hunters and they all had a lot of rifles and pistols in their homes. At my school Taylor County High School many boys drove trucks with gun racks full of rifles in them to school. It wasn't even something you thought or worried about. What has happened in these few years to change things?
What I truly believe has happened is the culture has changed-it's not guns. Unfortunately there have been so many changes.
Growing up most people I knew came from a two parent family. They were taught to respect God and most people I knew regularly attended church with their family. Were they good Christians? Maybe not maybe some people had to sow some wild oats but they had a foundation that seemed to keep them from straying too far.
They were taught respect for adults. When I was growing up we might've been doing a few things we weren't supposed to do but we didn't talk back to authority. We respected teachers and Administrators and we respected law enforcement and other kids' parents as well as our own.
There was no one on a bunch of medication. We had PE and recess and after school kids played outside and got out all their frustrations and stress by running & playing. They didn't sit inside on computers or watching television or playing violent video games. There was no double lives being led on the Internet or being in Facebook groups the no one knew of.... There was no isolation-
Everything was out in the open other parents looked out for you & would call your parents in a heartbeat and tell them if something was going on. And your parents would deal with it. If you got in trouble at school there was no coddling or blaming the school - you got in trouble at school you got in trouble at home.
Back then they were clear gender roles. Men were taught by their fathers or other relatives as well as teachers and religious figures on how to be a man and handle their feelings. They were taught what being a real man was and they didn't have such an underlying anger toward society. I think every young man I knew growing up believed that his life was going to be even better than his parents lives were - they were taught to focus on building a life not destroying society.
I feel societies changes are what is causing these type of shootings. Of course the root cause is sin and the devil. But that restraint that was in society for so many years is gone. I doubt it will ever come back.
I am so sorry for the families that grieve. I always worry about my children when they are at school, college, or a busy crowded place. The sad thing is my husband works in a prison and I am often reminded that he is probably safer going to work than most people are or most students going to school!
I think immediately every school needs to focus on Security and training their staff on how to deal with this type of situation. There was a coach yesterday he gave his life protecting students. If only he would have been allowed to carry a gun perhaps he could have stop this before it escalated!! God bless him for his efforts to keep the students safe. The college my oldest son goes to has recently authorized staff who go through a rigorous training to carry concealed in order to protect students. I'm very grateful that the plan is in place as well as having armed law enforcement on the campus.
My hope and prayer is this actually will cause a real conversation not a anti-gun reaction. Guns of been around for as long as this country has been a nation and it's only been the last few decades that this has begin to happen. It's not guns!"

Our society has changed so much in my lifetime.  The fact we are having shootings in schools, churches or stores show a break down in society.  I read a statistic that of  75% of school shooters were from fatherless homes.....     And if I were to guess, I'd guess most of those kids did not grow up in church.  Last night Shad and I watched a documentary on a British citizen who became a fighter for a Jihadist army.  One thing I noticed was his father was not in the home and the mother said she raised her children without any religious training.   But that young man was seeking a relationship with strong men and some type of belief system.  

What can we do?  I guess I don't have much faith that society will change and people become responsible and have respect for each other and authority.  That sounds awful but it's truly how I feel.  

Maybe Old Fashion ideas is what we need & it needs to start in the home.  If it starts in the home, it will become evident in society.  

Tuesday, February 27, 2018

The Best Christmas Present

If you are a parent you know how every time Christmas or a birthday rolls around you want to get a good present for your child.  You want to get something meaningful not just junk.  Over the years I have really worked to not waste money on stupid gifts that never get used.  It is challenging!

Well this past Christmas, I think overall for all five of my kids I did the best I have ever done.  I refused to be suckered into junky presents or things that would never be used.  But it took some thinking!

For Shad and Steve I (we-I do 99.999 of the shopping for our family lol) got them a test kit from 23 & Me!  Jon and I had done one last year and came to find out we were cousins....JUST KIDDING!  Our DNA make up was so close it was very scary LOL   But thankfully we had no relatives in common:)  If you wonder we were England/Irish with a little bit of other European thrown in.  Interesting but a bit boring.  We figure Steve's will be just as boring.  (his is not back yer)

But we were expecting more from Shad!  Come to find out he is mostly Chinese....who would have thought?   But he also has some Mongolian and Yakut!  AND he has some biological hits!!!!!!!   The closest are 4th cousins but it is so exciting to all of us.  We've made contact with one of his relatives and found out she has contact with others mostly from the Chengdu area of China.  That relative was also adopted.  She has an adopted sister who has found her parents through 23 & me! 

When I ordered the kit, I immediately had reservations.  Of course Shad is only 14 years old, would this be opening something too soon for him?  He has asked questions since he was about 4 years old about his background and family.  Of course we had few answers.

In the last couple of years we found one of Selah's sisters who was adopted in the US and we found Sarah's dad in Ukraine.  He was very interested in both situations.  Now we are on a path to find out as much as we can of his background.

The report came on Sunday so all afternoon was spent on his reading it and looking up things.  It was really cool to hear the excitement in his voice.  He was actually finding out some very concrete things about his lineage.  Then on Monday we got a response from a relative.  the look on his face was priceless.  Now he knows for a fact there is someone who shares his DNA (if only a tiny bit of it).

Boy that present was worth every penny! 

We don't know where this will lead, maybe he'll find his birth parents, maybe not but it does give him a basis of where he came from that he couldn't have had otherwise.

Monday, February 26, 2018

All About Sam!

Well our story continues!  So after my last blog, nothing got any better.  A few days later Sam began having explosive diarrhea and the next day he was  throwing up.  Now I absolutely HATE throw up.  I can deal with anything else but not throw up.  More often than not, I join the child and throw up myself.  Well this throw up deserved a very special place in hell.  It looked and smelled like cat food!  In fact the only way we knew it had happened was our cat began crying and crying in Sam's room!  It was so odd for the cat to go in there that I went to check and walked in on a scene I will not easily forget....  I think the cat was traumatized also!   Dear Jesus.... I put Vick's chest rub up my nose and covered my face with a mask in order to clean it up!

We took Sam to the ER where we were met with the most odious little doctor man.  He absolutely took nothing serious that Sam had been going through nor any of his special needs.  All he did was to give Sam some meds for nausea and try and send us home without even wanting to wait and see if he could tolerate it.  And the doctor kept calling me 'Mama" in an false Southern way....  Rather than go to jail at that point we took Sam home....and of course he threw up 3x before we got in the door.  I called back to the ER and all they said was give him more anti nausea meds.  It did work and about 4 am we all got to sleep.  (And yes you know I registered a complaint against this doctor!)

 We laid low a couple more days.  Then we began having another issue NO poop....for a week and a half even though he was eating normally.  Again we called our doctor and began trying everything he could tell us to do.  Time kept passing but NO poop!  Every so often I could get a little undigested food out with the use of an enema.  Our pediatrician   and I have a great relationship and I appreciate him and his nurses-I called them so many times and they were so gracious to me.  I followed his advice to the letter.

Our wonderful respite care worker has a Mexican grandma who has helped people out with massage.  She came over and massaged Sam's back in a way that helps his digestive system  (She did it for Selah too)  We also tried a remedy their family has used before- Papayas!  Sam ate a half of one but still no poop!

Then I took him in to see our doctor and I just broke down bawling!  I think I freaked him out.  He's been with us through some rough times and I'm pretty sure he has never seen me cry!  Believe me the floodgates were opened....I told him all the strange little things that were going on with Sam.  When you parent a child with special needs who is non verbal, you really learn to read your child and there were so many things out of the ordinary with Sam.  I told him I wasn't trying to be a drama queen but I felt like Sam was dying from something and no one could tell us why all these strange things were happening.  He sent us for x-rays and labs.  He took me seriously.  Of course the x-ray showed  a very full gastro system.  We tried some stronger things with him -stuff that would have adults running to the bathroom- but to absolutely no avail.  By this point he was sleeping with me and would just groan in his sleep which really freaked me out!

So we went back to the ER, this time we had a wonderful doctor who listened, spoke with our pediatrician and did more x-rays.  At that point there was talk of surgery for a blockage.  He was transferred to Orlando.  While we were waiting he did pass some stuff but it was more undigested food and water.

Sam absolutely was wonderful through all this and so cooperative it was unbelievable.  He LOVED the ambulance ride to Orlando.  He kept laughing with the bumps.

The next day they ruled out surgery and did a full ultasound of all his organs in his digestive system due to a rare chromosomal deletion to make sure there was no tumors.  Thankfully that was clear.  The idea was just to give him a different med and give it some time.  Well as we were being discharged he actually did a normal poop!  At that time it had been almost 3 weeks since there was anything normal.  The undigested food was really worrying me.

Since then he is finally getting back on track.  He is taking a liquid laxative and stool softener.  Now things are a little too good LOL  The challenge will be getting his system to work on its' own!

Sam has always eaten a good diet.  He doesn't have a sweet tooth although he will eat some fruit but hates any type of cake or ice cream.  He literally will gag on sweet things.  It's really amazing.  He loves vegetables and  rarely eats bread.  He will eat any type of bean or pea.  The doctors feel it was not his diet but an after affect of the flu.

Again I will tell you I am so glad he had the flu shot last fall!!!!   I believe he would have been so much sicker if he had not had the shot.  He has had a flu shot every year of his life and this is the first time he or any of us have gotten the flu after having the shot.  This year's flu was rough!  So 6 weeks later we are cautiously optimist that we are done with this!  I can not believe all the strange things that have gone along with this.

His room AFTER I had cleaned up everything!

Opening a birthday present

Birthday boy put himself to sleep on the swing

This was the day after he was born... I held him for the first time and he opened his little eyes.  Up to that point no one had noticed our baby was blind.  He showed me.  This picture used to break my heart but now I can say I'm glad I was the first one to notice.

14 years later getting an x-ray

the famous ambulance ride that brought him so much joy:)

Finally he got to eat!  He was so happy

We were able to take him on the roof top garden one day.  It was very nice out

This toy......Sam loved it I MUST find it!

This girl was waiting on me!  She missed MAMA!  she got right in my lap!

Notice the hand....it's wrapped around my arm tightly

We sat on the porch for hours on the swing, this was my view.

Sam outside loves a polar pop!

I love this-took it last night.  He crosses his leg and swings his foot like a grownup man:)

Jon and I both were able to be with Sam in the hospital because his respite care worker stayed with Sarah several times.  And our oldest son gave us his whole long weekend to help out.  Thankfully we got home on Sunday and were able to have some time together before he had to go back on Monday.  Both of those young people are such a blessing to us!!!

I feel like Sam is on the mend.  But I still feel a little worry in my heart for him.  As a younger child he was sick so often and it would progress like this, something would happen and it would just continue on and on with no real diagnosis.  It was an awful way to live.  Until he was about 7 years old I kept a hospital suitcase packed for both of us.

Based on what has happened, we have made the decision to withdraw Sam and Sarah from school.  I'm just not ready to take a chance on his health again.  His immune system has never been good but we've kept him from being sick by keeping him home.  These past week have been very scary.  With him, you never know what could happen and it is just not worth the risk.

So I have Sam and Sarah set up for ABA therapy (applied behavior)  It will be done at home.  We are also setting up for them to do horse therapy at a local farm.  We hope to get both started within the next week or so.

Saturday, February 3, 2018

WBC and Sam!

Well we have had a time over here!

Sam and Sarah started school.  Sam did pretty good from the start.  Sarah had a harder time on the first day but then was able to handle it.  They only go for 4 hours a day so it hasn't been too stressful for them.  For ME? Different story.  It was much easier with them at home with me.  But I'm willing to do it if they are learning new skills.  Right now they are working on getting used to the class as we are applying for therapies etc.   I think it will take awhile to see how school does for them.

Then last weekend I noticed Sam was running a fever, we took him to our doctor and he tested positive for the flu.  He had had the flu shot last fall, as all the kids do yearly.  Thankfully he only had two days of fever and that was it.  But he seemed "off" I knew in my gut something was wrong and as my husband and I discussed it we both remembered little things, that put all together worried us.  So last Wednesday I took Sam to our practice's lab for blood work.  There's a whole story behind that....

First let me say I love our pediatrician dearly and trust him totally.  However the practice that he is in is huge & growing.  It's all kinds of doctors and specialties for all ages.  Of course with tremendous growth it is harder and harder to deal directly with our doctor.  It's not his fault it's just how it's all set up.  So with such illnesses going on, I could not talk to a real live person on Wednesday so I just decided to show up to the lab.  (BTW this is all in another town)   I was pretty sure that his doctor had ordered basic labs on him at his last check up before Christmas that I hadn't gotten done yet.    My gut was literally SHOUTING  at me to get to the doctor so we went.  And of course there were no labs ordered but the receptionist called the doctor and bless his heart, he ordered me all kinds of labs.  I want to think he trusts my gut that was telling me something was wrong.   He probably just thinks I'm a crazy mama and it's better to humor me lol.

Unfortunately I was right.  We got a phone call at 9 pm that night.  He told us Sam's White Blood Count (WBC) was extremely low (it should have been high)  and his ANC was life threatening low.  The ANC is what fights infection.  His was at a severe neutropenia level.  I'd only heard of this in patients that had cancer/chemo !  He said Sam needed to stay out of school.  He felt like it would resolve itself in a few days. 

We went back on Friday for more blood work and unfortunately it had not really changed, maybe even a little worse!  We had thought he had to be better as he is acting mostly normal.  Actually we met our oldest son for lunch and was getting Sam a haircut when the doctor called and told us to take him home and stay home!  We went home and I gave him a bath.  Now he is not allowed out at all!  We are keeping Sarah home too.  At first we did because we were concerned that she might have gotten the flu from Sam and would pass it on but no one got it from him.  Now we are concerned she might catch anything and give it to Sam.  I'm also staying home from this point on so I can take care of him and not pass anything on to him.  The biggest concern is that he might catch something while his body is unable to fight it and it could easily be life threatening!  We will be going back every few days for labs until they are normal again.  He will be home bound until this works out.

If you want to read about this copy and paste this link.

This is just an odd thing, I'm so glad that he got the flu shot because it obviously helped him not to be sicker than he was.  Please don't ever let people tell you flu shots are useless!

Here are some pictures from the last weeks

Sarah loves her dada!

Sam sleeping on the swing

Selah almost asleep one night.  I thought she looked so sweet

Sarah swinging

 Steve and Jon
we always think it's so ironic when we eat at this Olive Garden, it's where we had our first date....
LOL I couldn't have imagined then  that one day 28 years later I'd be there with my kids!

I took this picture while on a walk!  I think it's one of the nicest pictures I've ever taken!