Friday, August 17, 2018

Summer's Over

Well Summer 2018 is in the books.  It was a great summer and went by way too quick.  From Haiti, Miami,  New York, Canada, El Salvador and camp..... movies, late nights, friends over...  It was good lots of memories.  

Today we took Steve back to college for his Senior semester.  He will graduate in December a semester early.  His roommate of three years is getting married in December so he moved off campus and Steve is living with new roommates but old friends.  One of his friends is the Student Body President so we called their room, the President's Suite LOL   As our usual tradition we ate at Olive Garden (the same one that was the site of mine and Jon's first date) then we followed him to school, walked around a bit and I bought a new SEU t-shirt.  

This was a snap from College Days back in 2014  it cracks me up

Monday Shad will start up his 10th grade year.  We are also looking at Dual enrollment for him at our local college for January.  

I love being on a schedule again but I sure hate to see the summer end.  
Thanks for the memories Summer 2018!

Wednesday, August 15, 2018

Six Years Later-Selah

Six years have gone by since that fateful day that changed our lives.  There is so much I can say but this post I wrote on FB three years ago really says it all...

Three years ago the accident that changed our lives forever happened. Looking back I see God's faithful hand in our lives. He never left us, He never forsook us. He was there when we were alone. He worked every detail out for us on so many different levels Beforehand I knew God was faithful NOW I KNOW GOD is Faithful! There's not a devil in hell or anyone on this earth that could make me doubt God or His faithfulness. The last three years have been difficult but we've made it. We're still a close family, we've weathered so many things that brought us closer together rather than apart. I'm grateful. I can remember hardly being able to breath & wondering HOW we could deal with everything but we did by the Grace of God! So whatever you are going through I can promise you that God is able to walk you through it!!!! Just put your trust in Him, don't look to anyone else. What He's done for us He can do for you. You may not have the easiest path but you can have peace!

God has been faithful to us   In many ways we lost our daughter that day.  Just being real here, I've thought if Selah had died we would have found healing from that loss by now.  But every day the pain is there and it's raw.  Don't get me wrong we love our daughter and are completely committed to her care and well being but it has been a difficult road to walk.  There have been no signposts along the way and it's been a very lonely road.  BUT GOD..... He has been with us every minute and every step of the way and I'm forever grateful for that realization  Even as I type this I can think of the many ways God has helped us and strengthened us.  People tell me to write a book but honestly it's more than a book would hold.

I could not have made it this far without God.  Even with Him it's been so difficult.  But I've learned a few things, the number one thing I've learned (besides the faithfulness of God) is every day is a CHOICE!  Every day I chose to trust God.  I remember doctors and social workers telling us that our lives were basically over if we brought Selah home from the hospital.  They said it would ruin our family.... their words scared me but I determined in my heart that OUR HOME WOULD NOT BE A HOUSE OF MOURNING!  And quite honestly, that depended on mine and my husband's daily choices.  We could lay down and live in sorrow but we chose not to do that!  We had four other little people watching our lives and how we dealt with this awful tragedy.  And our lives were very public so there was a watching world looking to see if we were going to honor God even through this....and that was the choice we made.

To be honest, I made that choice for various reasons and even selfish reasons....  let me tell you I knew what it was like to separate my life from God because of heartache.  I'd done that when we lost our twins and that was an awful way to live!  I did not want to experience that bitterness again.   I also did not want to lose my family through sadness and bitterness.  Things like that happen all the time when tragedy strikes.  I knew if I trusted God He would see us through.  And He has!!

Recently I had a long talk with our oldest son about the whole thing and other tragic situations we know of and he told me about how he felt about the whole thing.  It really touched my heart the things he said to me about how Jon and I handled the accident and the 6 months afterwards while Selah was in the hospital and rehab before she was transferred home.  He said he knew everything was going to be ok because he saw we were calm and peaceful (most of the time)  He never doubted us and our ability to mange the situation.  Wow.... that was God helping us!  But even as we went through the very first traumatic day, I somehow kept things together enough to reach out to my other kids and reassure them while being truthful and honest.  My son acknowledged to me that he realizes that we chose to trust God's faithfulness.  That meant so much to me.  While it was all so raw, one of my prayers was that the boys would see this and know that God could also carry them through any situation in life by seeing our example.  I knew they were watching.

Please know I'm not prideful in myself, I could have never ever handled one day of this, let alone 6 years, without God's grace and empowering Spirit.  I have literally thrown myself on the mercy of God time after time.  It's all God but I made a choice to trust God.

Over the years we have had people at our church or people we have met that I call "God accusers".  They tell us stories of how they've felt God has failed them in various areas of their lives because of tragedies.  These folks are bitter and they blame God because life was not perfect.   Recently Jon had someone begin to recount how she felt God failed her and he stopped her and began recounting stories of folks who have walked through the valley but have trusted God.

You know what?  I'm going to trust God. I'm not an optimist or a pessimist...I'm a REALIST!  So to some folks I sound like I'm Miss Sunshine and to others I sound like Miss Gloomy but I tend to be very pragmatic about things.  Life can be extremely hard.  But even in the hard places there is beauty.

We live out our life and commitment to our family day to day.  The future sometimes scares the Hell out of me!  And it drives me to prayer.  I balance so many different things and responsibility but God has given me the strength thus far and I believe He will continue to do so.

 I encourage you to make a choice to trust God in your situation.  CHOOSE daily to depend on Him.  Don't live in defeat no matter what you are going through.  I'm not a person who makes silly statements in a glib way and I realize the realities of life.  Many times I've had to say "God I truest you" through tears knowing that things were not going to go the way I wanted them to go.  I can't change the fact that my daughter was in a near drowning and is living in the aftermath of it but I can CHOOSE to not wallow in grief.

Why anyone, especially a Christian would want to live their life wallowing in grief?  It's not going to change a thing and it robs you of your joy.  I'm not saying we don't grieve-I still grieve the loss of my twins, I still grieve the accident.  As I type this, the clock is nearing the time of when it happened 6 years ago today and my heart just pounds thinking about it and wondering "what if"......   But I make the choice to look towards that day when God Himself will wipe away every tear from our eyes and make all things new.  That's what I'm headed towards....the other stuff is in the past.  I can't wait till the day Selah is heal and whole.  It will be glorious.  The bible says we (Christians) don't grieve as those who have no hope.  It doesn't say we don't grieve, just that we don't grieve in the same way as those who have no hope 

In the story of King David's life, there is the time when his infant son lay dying.  David wept, prayed and fasted.  When the baby died he got up, washed himself and went and worshiped at the temple.   He said the baby can not come back but one day I will go to him.  Well I get that, for any situation.  What has happened, has happened, it's time to quit grieving and get up and go towards God.  That sounds so simple but it's true.  So let me encourage you to trust God through every circumstance of your life.  I can absolutely promise you that He will be faithful to you if you entrust your life to Him. ========================================================================

Selah turned 14 years old yesterday so until next month I have three 14 year olds (Selah, Sam and Shad!)    Recently she's gotten all kinds of new things as she outgrew everything.  She got a new mattress and gel pad for her bed.  She got a new stander and wheelchair, and new hand braces and leg braces.  I'm so grateful for her two insurances that cover almost everything.  I know families in other countries that have such problems getting any type of equipment for their kids.   We are blessed.  Even with two insurances we sometimes have some out of pocket but I'm thankful that we are able to get her and the other kids the things they need.  We are waiting for her new slings for her Hoyer Lift.   She also is getting a new seat for her bath chair.  Someone gave me her nice huge bath chair/bed.  It has a blue cover on it but it's getting frayed so we are ordering a rose pink one! It's going to be so nice!  I pass on all her old equipment to others so it blesses them too.

I want you to notice Selah's head.  she is doing all the moving on her own and she was quite annoyed with us LOL

I love Selah and I'm honored to be her mom.  I'm thankful for all the things she has that makes her life comfortable and helps the nurses care for her.  Selah is usually happy and content.  I'll always ask for prayers for her, I'd love to see her healed this side of heaven....but we are committed to her no matter what happens.

Saturday, August 11, 2018

Face to Face

Yesterday was a busy church day for me.  My friend and I cleaned the church and hall and it was a job!  Usually it's easy but it was more than usual.  then after eating a late lunch I had to run and buy softball equipment because we are starting a church softball tradition.  I get back home in time to get everyone out the door, then we gave Sam and Sarah a bit of a break because it was still so hot at 5:30. pm.  We left a little later, drove by , got the pizza order from the team and went got pizza .  We got back just in time for everyone to eat before it got too dark.  The mosquitoes began attacking us so we cleaned up and headed for the church fellowship hall till 10 pm!  That was a late night for us and for the little kids. 

After we got home, and got the little kids to bed, we stayed up with the boys and one of Steve's friends who was spending the night.  He is the Student Body Class president of their college and recently was at a symposium for young Conservative leaders in Washington DC.  He had an amazing experience and was even surprised by having President Trump "crash" a  seminar at the White House.  We stayed up talking till after 1am and would have probably stayed up later but Steve and Shad were going on a kayak trip today with some other college friends. 

I recounted ALL of that just to make the point of how good it is to have FUN with people without technology being involved!   Honestly I was a doubting Thomas about how the whole softball game was going to go over with the teens and young adults in our church but everyone (including me) had a great time.  It's so good just to connect with people face to face.  I like technology and I confess I'm always checking my phone especially if I'm bored just for something to look at.  But I can put it down for hours if I'm with others. 

We didn't allow our oldest son an cell phone until he was 15.5 years old and going on a missions trip!  His phone was only call/text.  He didn't get a phone with internet access until he was 17!  Shad is 14 and doesn't have a phone much to the shock of everyone.  He may get a cell phone with texting only for his 15th birthday or he may not LOL  Personally we feel kids need to stay kids-the internet is a dangerous place for many reasons but our main reason for greatly restricting their on line time is more for their mental health than anything else.  It is just not normal to see kids addicted to phones, tablets, computers, TV, video games.....  And let me tell you it is a challenge to say the least.  We're not against any of that stuff if it's used in balance but it seems the younger a child is, the harder for them to find balance  I'd say that 95% of the arguments with our kids have had something to do with electronics.   It saps the common sense out of them and gives them an attitude.  We continue to fight to keep a standard in our home of not being addicted to electronics and sometimes it feels like it is a losing battle but other times I can see how they have been able to separate themselves from it.  .

My biggest advice for parents of younger kids is to restrict time on electronics and keep them from "owning" any of it.  We never let our oldest have a tv with cable in his room until he was college age.  he did have a tv that played DVD'''s and he could play video games on it.  Our biggest regret is we allowed him to have video games.  His first system was given to him, he bought the next one and we seldom bought him games or accessories but he collected so much stuff.  That was always an argument with both boys!  Thankfully he out grew it and realized he could sell it all and buy a really good video camera so he did that a few years ago.  Of course Shad mourned the loss for a couple of days because he knows we will never allow that back in our home.  Not because it's particularly sinful or ungodly but because it sucks the life out of kids! 

I grew up being outside all day or playing dolls, reading, if I couldn't get outside.  I was busy.  When I was in junior high, a neighborhood friend and I would meet every day after school to skate on a street in our neighborhood.  We'd skate till it was dark out and I had to run home.  I didn't know then what a good childhood I was having!  That was the life!

It's important to lead your children even in areas like this. Electronics are enjoyable, we still occasionally have a family movie night.  Just this past week we watched "White House Down" a suspenseful drama but we are not big TV watchers.  Jon and I watch a few things on FOX news and we have discovered a few great TV stations, like MeTV, Decades, and a few others that show old shows but if I don't DVR something, I can't stand to watch commercials LOL or I forget to watch it.  Personally I'd rather read a book any day than watch TV.

So this last weekend of the summer for us, we are being busy, outside, enjoying Florida.  Next week Steve has a "gig" that he working for a company then he leaves for college, his last semester!  Shad will be starting 0th grade work and starting the paperwork to do dual enrollment in college.  What  a fast summer this has been for us!  Back in May we had so many trips and things scheduled for the summer, it seemed it would be so long, but it went by very quickly   That always makes me sad.  But I'm thankful for every memory made with my family.  

Thursday, August 9, 2018

Walking Can Be Hazardous To Your Health!

As you know I have a Fitbit and am addicted to getting at least 10,000 steps a day.  My real goal is 15,000 but I'm happy with 10,000 if  I'm busy.  It doesn't do any good I'm still fat LOL but I figure it is good for my health.

Since I got so sick almost 2 weeks ago, I haven't met my bottom goal.  I felt breathless for days, like I couldn't get a good deep breath.  But that all cleared up and yesterday I decided to get up and go walking this morning.  Great healthy idea right?  WRONG!

So I woke up about 5:30 am and laid there, thinking about walking.....I finally got up about 630 am and headed out.  It was an absolute gorgeous Florida morning.  There was just a tinge of coolness (that means it was only about 80 degrees and the sun wasn't up yet LOL)  I have three different ways I go so I decided to go my favorite way this morning..  As I'm walking I'm thinking happy thoughts...glad the house was cleaned this week, glad I was going to have respite care today so I could get a few things done.... AND THEN......

I hear a growling on my right side, I look over towards the sound and these two gigantic Rottweilers like this picture are charging straight for me!
 Image may contain: dog and outdoor

Almost every time I've walked down that street those two dogs charge at the fence.  They are gorgeous and well taken care of.  Their fence is high and the gate is closed (except for today)  And I can not tell you how many times I've been thankful for that fence and gate....  BUT today the gate was wide open!

They charged across the road at me.  I was backing up and seriously thinking I was about to die!  I'm not kidding.  Not alot of animals really scare me-I was raised in the county but these dogs scared me.  As I'm backing up not knowing what in the world I was going to do, the garbag pickup truck came rolling up.  The driver saw what was going on and he already had his door open to help me!  But the sound of the large truck scared the dogs and they went back up their driveway a little.  He and I just looked at each other and he said "Run!"  So I turned around and headed for home as he watched the dogs and kept his loud truck parked at the end of their driveway until I got down to the corner.

God bless him!  I truly feel like he saved my life or at least saved me from a mauling!!!  I tracked him down today to thank him and I got in touch with his supervisor to tell him what his driver had done for me!!!  His supervisor said he would pass it along to upper management.  I truly hope he gets rewarded for helping me.  He certainly went above and beyond his job duties today!!!!!

Also I called our local animal control to report this.  Although I think the owners usually take good care of their dogs, this mistake today could have been a disaster.  When you own such large and threatening dogs, you have to be very careful all the time.  These dogs were not coming up to me for me to pet them on the head.  They were charging at me to hurt me.  And they would have hurt me, no doubt if my guardian angel had not been there!  If it had been a child, they could easily kill a child.  That's one of the bad things about living in the country is that everyone has dogs, and some dogs are more aggressive than others.  These were probably the most aggressive dogs I've ever had come at me.  It was terrifying.

So walking may not be good for your health after all!  Although I'm sure my heart rate got up there to the fat burning numbers LOL!!!!!

Wednesday, August 8, 2018

Genetics Appointment!

We got some very interesting information at Genetics today!   To explain it all I need to give some background.

The University of Wisconsin has had an ongoing DNA study for kids with vision issues particularly kids with Peter's Anomaly.  Sam has been in the study for years.  As DNA testing and gene sequencing has improved we have gotten more and more information.  We placed Sarah in the study about 4 years ago.  They both had a microarray DNA study done a few years ago when it became available.

We had already found that Sam had a deletion in chromosome 4 at the 35qt marker-a very large one.  I did a lot of research on it and found the ONE doctor (at the time) who was doing research on that particular gene.  The part of the deletion we were concerned about was the deletion of a liver tumor inhibitor.  Most people have two liver tumor inhibitors in chromosome 4- Sam only had one.  We were concerned that made him at higher risk for liver cancer.  The researcher does not think that is so based on his research with mice.  Jon and I were both tested and we have both markers so his deletion was just a random thing that happened at conception. Even though the doctor reassured us, we started being alot more careful of what Sam eats.  Thankfully Sam absolutely hates sweets and craves BEANS and PEAS!  He loves guacamole and all kinds of healthy food.  But if you give him something sweet he will spit it out and act like he has been given poison   We've never discovered the cause of his lack of sweet tooth. LOL

So today we went over the results of DNA sequencing type testing that has come back from the U of W.  We may have a deeper answer on Sarah than just Peter's Anomaly.  The research has found that she has a deletion in chromosome 2 which is called SOX2.  It is characterized by anophthalm (no eye) and/or microphthalmia  (very small eye) that is usually bilateral.  Other common findings include brain malformations, esophageal atresia, hypogonadotropic hypogonadism and/or pituitary hypoplasia.  There can also be deafness or early onset seizures involved. It seems all children have intellectual disabilities   Thankfully for Sarah she has none of the problems except for the small eyes/no eye and the intellectual disability  I'm sure if she were a newborn we'd be devastated by this but we kinda already knew this and absolutely love her!  We are just thankful she doesn't have any other hard thing that is associated with this.   She had to be tested for it so that she could be medically diagnosed.  There is a difference with researchers saying she has something and actually being diagnosed by a medical doctor.  So we won't know for a few weeks for 100%.  But I think it's pretty sure.

The one way this may impact her in the future, is she may never reach puberty.  The "hypogonadotropic hypogondism and/or pituitary hypoplasia" basically means ovaries/uterus  may never grow with or without involvement of her pituitary gland.  So she could have normal levels and she stil might not mature or she could have abnormal levels and still not mature.   If this is confirmed, we would have to watch her bone density closely.   Hitting puberty for boys and girls causes the bones to harden and become more dense.  Other than that, there is no real issue for her since she would not be planning on getting married and starting a family.  Honestly it was a relief for me to hear this because obviously I was not looking forward to her hitting puberty and all that involves.   It's funny, I have always thought she might have something along these lines, don't ask me why but I have had a feeling about this. 

We have pursued genetic testing for our kids for several reasons.  Obviously since Sam and Steve are biological brothers, we want to know if Steve is a carrier of anything.  He is not -all of Sam's DNA issues are non genetic so far (more about that later.)  We also want them tested to make sure there is nothing lurking that we don't know about in time.  Often when a child has one issue, there are other issues out there.

Sam got back some research that was a little murkier.  He had a hit come back on something, that I also tested positive for-it also has to do with small eyes.  Luckily Steve was with us today and was able to be tested for it.  Steve has normal size eyes while I have small eyes.  I can remember when i was a little girl my great aunts telling me that when they first saw me I had such very small eyes.  It always made an impression on them but no one seemed to put it together with my vision issues.
Anyhow if Steve tests positive for this-then it's nothing-just a funny piece of DNA since he has regular size eyes.  If he tests negative, it will lead them to do a deeper study on this to see if this is a new marker for eye issues.  The doctor wants me to try and contact some of my biological family for testing....awkward....  While I am so interested to know more, I don't have much of a relationship with my immediate birth family since I was not raised with them.

So despite all the new info, both of my kids are still considered to have Peter's Anomaly-which is rare.  This is just a deeper explanation of the DNA in both of them that gives even more details and obviously even more rare!  They are each one in a billion!

We plan on taking Selah over there soon.  I had scheduled an appointment for her that was for a few weeks after the accident happened:(  With everything else, genetics did not seem very important.  But we'd like to see if we could get a diagnosis that will give us more insight into her.

This was long and involved and I doubt seriously if I explained everything correctly but its very interesting to me.

*One cool thing was we were in Orlando near where I did ministry at a soup kitchen for the homeless when I was in college.  We also worked with prostitutes and drug addicts.  I was able to find the building and saw it was still in use.  That area of Orlando (Orange Blossom Trail)  has been cleaned ups some but it's still a pretty rough area.  It's only about 2 miles from the kids' doctor's office and a large children's hospital.  That ministry defined my life and pointed me in a direction I probably would have never gone on my own.  I'm not sure how many lives I changed but it certainly changed my life.  I'll have to write about some of my experiences on OBT one day

Monday, August 6, 2018

Busy Week

This week is dedicated to all the end of summer chores.  I do this every year and every year my kids hate it LOL  Today we deep cleaned the back half of our house.  Then the boys' pressured washed the drive through garage area.  They couldn't do the whole house because it is just way too wet and the last thing we need to do is to add more water around the house.  Then after supper, they water sealed the front porch.  Tomorrow we deep clean the front half of the house, good Lord willing! Deep Cleaning involves alot more than regular cleaning for me and makes me happy  It doesn't necessarily make anyone else in the family happy!!  LOL!
 Selah has a Nutritionist appointment-Jon will take her.   Wednesday Sam and Sarah have genetic appointments.  Thursday Steve has meetings at his college regarding the football season- he's the producer for football.  Friday I'm cleaning the church with a friend and we have a big church softball game that night.  Saturday a group of college friends are going with Steve and Shad kayaking.... Usually that means we have sleep over guests.  I got smart and bought camp cots now we have beds for everyone and anyone.  They fold up pretty small and are quite comfortable.  Air mattresses were always a pain and would end up collapsing  during the night.  The camp cots were one of the best decisions I've ever made!

Last Friday I did have fun with a couple of my friends.  That doesn't happen all the time either but it makes me happy when it does!  My college roommate and life long friend and I try to be artistic together.  We have tried various things with varying degrees of success.  But I have to say we absolutely love Rock Painting!   This beats some of the other projects we have tried!  We also watched some old home videos and laughed till our faces hurt.  The funniest one  was about 7 years ago some neighbors of ours robbed a bank and had a shoot out with cops.  Well I'd known these folks for decades so all of the press came knocking on our door asking about them.  We were on several TV interviews for the local news.  BUT then as the manhunt went national- all the networks came knocking too!  We ended up being on a LIVE  national news talk show on FOX.  It was all fun and games until I heard in ear piece "Mr and Mrs Clanton we have about 3 million viewers tonight.  You are on in 3,2,1.... I FROZE!   Some friends taped it.....and gave it to us.  I basically look like Morticia from The Addams Family!!!!  It is absolutely hysterical to watch and rather painful too.  I hadn't watched it in years so the tears were running down my face.  At least I can laugh at myself!  You know the old saying "If you can't laugh at yourself, come see me.  I can laugh at you"  Oh and our former neighbors were captured unharmed and are in prison probably for the rest of their lives (which is sad)   All I can say is I have an interesting life.

My rocks are to the right side.

Oh my gosh we look like twins!  Straight hair, bangs, glasses, sleeveless shirts and fitbits!!!  I'm laughing at us!  We've been together for a long time!  We say we are going to be roomies in the nursing home one day!  Nothing better than life long friends who can laugh with you and at you!!!!!

Then that night I got to go out to eat with my other BFF!  What a treat!  All in ONE day!  I was a happy girl.  I don't' have many days like that!

Hope your week is going good!

Sunday, August 5, 2018

Travel Video

Hope you all are having a great weekend!  I've included a short video Steve made of his summer trips.  The opening footage is shot in Haiti.  Then it goes to northern Canada and back to Niagara Falls and Fort George.  He was able to get on the Ferris wheel as the fireworks started over the falls and got great shots.  I thought you'd enjoy a glimpse of our summer.  Hope you have a good week!

Thanks for all the comments!  I love hearing from folks. 

Thursday, August 2, 2018

Horse Therapy

Sarah rode the BIG Horse today  She loved it!  Doesn't she look pretty in the saddle?  I grew up around horses but I never developed a love for them.  I never liked riding them and thought they were a bunch of work.  But I'm worrying that we may end up having to get one for Sarah LOL  She certainly loves to be on a horse. 

Sam was on what we call the "fake horse" It's really called a Equicizer.  It gives the same sensation as riding a horse but of course it is a much more controlled situation.  As you see Sam is turned around here facing the back of the horse.  His therapist moves him around in order to cause different muscle groups to have to work harder  He likes both the real and the fake horse.  Sarah on the other hand gets angry if she is not on the real horse!  It's great to have this too if there is bad weather, the kids can still get therapy.  Sam got alot of stretching today on the horse and his brothers learned how to stretch him out.  

All three of the little ones had Occupational Therapy this afternoon at home.  I'm so glad I have found someone who can work with them  She also stretched Sam's legs out and he was delighted with her  He was so delighted he wanted to crash Sarah's session!  

Since Sam was born, I've been very passionate about finding therapy for him.  We've had good therapists in different areas over the years but I feel like horse therapy is the best therapy they've ever been in!  I'd wish I would have had Sarah in it since we got her, I'm sure she would have walked by now if we would have.  But thankfully we are in it now!  Sarah loves to be there.  I used to think that swinging was the thing she loved the most but she loves horse back riding.  If it were up to her, she'd ride for a couple of hours  She has never wanted to get off the horse but she is good about cooperating.  Just don't put her on the fake horse!!!!  LOL 

Here's a video of Sarah on the fake horse last week.  She was NOT happy  She was calling for MOM to get her off of it and back on her real horse!  She stayed mad about it the whole time but did work with her therapist.  I hope you can see this video posted below if it works, it is very funny.  Sarah is usually such a happy child and doesn't complain much but this got her mad!

Wednesday, August 1, 2018

Sam and the Orthopedic Dept! Plus Freezer Meals!

Sam had his orthopedic appointment today. We got there really early.  I read the reminder text as 11:40....but it was really Aug1 1:40  LOL  Since we had extra time we went out to eat with big brother who was driving us.  Sam absolutely loves to go out to eat.

We got a lot of information at the appointment.  Thankfully he has only has a very small amount of scoliosis but his hamstrings are very tight.   The doctor does feel he has some CP  which aggravates it.  He gave us some exercises to do and our therapist too.  He also prescribed massage therapy for Sam!  Let me tell you that is right up his alley!  That boy loves massages and every now and then I splurge and pay for him to get one.  He started getting them when he was about 4 and he knows just how to get up on the table and put his face in the hole LOL  It would be wonderful if our insurance paid for him to get some!!!!

Having such tight hamstrings can cause some real problems and even  cause him to stop walking.  We have to really work with him to get him to walk much distance as it is.  Today I didn't even take his wheelchair so he got quite  bit of walking.  He walks slowly in unfamiliar areas and gets a little stressed.  In one of the many elevator rides we took today as we went around the hospital, he tried to show me he was tired by sitting down LOL  But he walked the whole time.

The first doctor we saw looked at his x-rays and felt that Sam had no growth plate left meaning he is as tall as he is going to get.  The second doctor thought he saw a little bit but doesn't expect Sam to grow more than 1-2 inches.  Sam is 4'6 with a tiny mustache and so cute:)   He hit puberty around 12 or so and has not really had any issues, other than possibly this, that we feel are related to it. 

Sam did so good with all the doctors and x-rays and the long waits.  He enjoyed being with me and Steve and alternated between the two of us.  He liked being the center of attention today.  It was a long day.  It's amazing how quickly this problem started with him.  While he has always bent his knees and walked slowly, because of his low vision,  in unfamiliar areas, he walked normally at home or when he got used to areas.  But one night last month I realized that he could not stand up straight and straighten out his legs.  I started looking at pictures but so often in the pictures he was away from home so he had his bent look going on.  I found a few at home from Christmas and it looked like his legs were straight.  But this has been getting worse.  I noticed pictures at the church, a place he knows, and he was standing with his legs bent in some and straight in others at Christmas time.  Anyways, there's always Mama guilt.....  But hopefully we will work this out and help him to start using his legs normally so there is no long term issue.

After we got home I had to go grocery shopping.  While I was sick I saw a friend was doing freezer meals.  She posted some great sites and I thought I would give it a try.  The sites she used was  Stockpiling Moms.  So having nothing to do but stay in my room sick I made a list of all the recipes and ingredients.  Some of the ones I'm going to use are Meatloaf, Stuffed Shells. Friendship Casserole, Baked Ziti, Chicken and Dressing, Chicken and Rice, Mexican Chicken, Chicken Fajita, Lasagna, Mexican Chili, Chicken Pot Pie, and Chicken and Shrimp Jambalaya.

Of course, I have to redesign some of these recipes to make them healthier.   No red meat-I only use ground chicken breast 1% fat.  I don't use any oil in cooking unless it's a quick spray of olive oil.  I use fat free or low fat cheeses and I use less than the recipes calls for.  I use fat free milk when called for and absolutely no butter. Most of the time I substitute gluten free pasta, sometimes even veggie pasta. I also substitute cauliflower "rice" at times. We were using it a lot but we got a bit tired of it.    Ragu has a healthy new sauce out called Simply Ragu that is chocked full of veggies (but the kids can't tell) and much less sugar and only a smidgen of olive oil.  When a recipe calls for eggs, I use egg whites.   We almost always have  salad on the side every night and sides of veggies.  To be honest, I get SOOOOOO tired of chicken!  But my husband has to have a low fat diet and it's good for all of us.  So I try to keep things different, it's easy to fall back on my favorite 10 recipes.  Spices help!  I have so many spices in my cupboards and I use them!!!

To keep down the need for oil, I use  copper pans.  Lately I've been stir "frying" chicken and adding different flavors.  My favorite was using fruit only orange marmalade, BBQ sauce and red pepper flakes to make Orange Chicken.  Lord have mercy that was good!  I made white rice to go with it and everyone was happy.  You know sometimes I surprise myself LOL  It's challenging to try and eat healthy and cook for this many people every day!  They like their food!  I figure even if I make a meal that is a little starchy-it's a 100 times better than fast food!

So I got half my list done, and found the sale paper for Publix that starts tomorrow and saw that chicken and several other things I need will be Buy 1 Get 1.  So I will be back tomorrow!  Walmart is on my list too.  My goal is to have at least one week of meals in the freezer.  Some may be in the large quart bags ready to go straight into the crock pot and some may be in casserole dishes.   We have a great refrigerator but the freezer is small and has an ice maker that takes up more room.  We have a second fridge in our shed but I don't trust the freezer any more.  It's used to house bottle water and drinks in the fridge.  One of these days I'm going to buy a new freezer.  Growing up we had two giant freezers because my aunt "put up" some much of her garden and my uncle did a lot of hunting. There were only 4 of us living there.  I have 7 and I'm not as well prepared as they were!   Keeping everyone healthily fed is a full time job here!!

Tuesday, July 31, 2018

On Steroids (literally)

Well y'all are all caught up to speed on our family.  We had a great summer.  Shad has already started his home school curriculum.  He is starting 10th grade a year early.  He plans on doing dual enrollment when he finishes this year's work.  He probably will finish by January.  He uses  Acellus..  It's computer based and much more like college classes are today.  The ACE curriculum that his school used and we did for a few years was very repetitive.  He'd have 50 long division problems to do a day and 50 sentences to diagram.  It definitely gave him and Steve a good base but we like this curriculum better.  Plus there is absolutely no way he can be tempted to cheat LOL  You don't move on until you've passed each test.  We monitor computer use like hawks and it's set up so he can only go on the one website (he can thank his older brother for that lol at least we're using that college education for something!)  It makes life easy for me!

In two weeks Steve will be back to college for his FINAL semester!  He's graduating in December, 27 years after his dad graduated also in December 1991.  Time flies!   He's had a great college experience and is probably going to start in January on his Master's.

Sam Sarah and Selah are getting back into more therapies, the summer is almost over!

Time goes so quickly-I often feel like I'm on a roller coaster hanging on for dear life as the days, months and years speed by.  Do you feel like that too?  I can get very melancholy about it if I'm not careful.  Sometimes it hurts to look back at old pictures and videos knowing those days are gone for good.  When I was younger, probably up until the time I had my first child, I was always looking ahead, excited about the future.  After becoming a mom, I wanted to hold onto every stage and treasure it.   But I had a little one who was pushing forward...and then a bunch of little ones....

Now I have to admit the future scares me, realizing there are more days behind me than are ahead of me. Having the responsibility of three children who will need life long care, possibly long after I'm gone is quite sobering.  We have everything in place for them and all legal things done to ensure their future as much as we possibly can but it's still scary.

See I told you I can get melancholy!

So an update on my health.....did I tell y'all they gave me antibiotics AND STEROIDS????  Well I'm not much of a medicine taker, I don't even like to take much Advil and I'll usually just grin and bear it so these steroids are on pretty virgin soil!  Lord am I flying HIGH!!!  I didn't sleep a wink last night and wasn't even sleepy.  This morning I took a hot shower and made myself sleep for about 3 hours but I woke up wide awake!  I've been up all day, cooking and cleaning feeling great, just a little cough, it's 10 pm and I am completely wide awake.  If only I could live on steroids!  That's what I need in my life LOL  Actually usually I'm a bit like a person on steroids anyhow, maybe it's a good thing I can only take it when I'm sick!!!!  I have to say I don't think I've ever gotten so sick so fast!  It was rough and I'm grateful for meds!  But these steroids are the BOMB!  I LOVE energy!  I have 3 more days on it I plan on deep cleaning the house LOL!!!!!

Tomorrow Sam has his appointment with orthopedics to check his tight hamstrings and decide if he has a little scoliosis.  Sam has been diagnosed with a little CP, mainly in his wrists and ankles.  We were lucky it was not worse.  This new problem is worrisome because we don't want him to start having trouble walking!  As it is now he is walking with his knees bent and booty sticking out.  It happened so quickly that we really just noticed it.  That's scary!  We've been racking our minds to remember when we first noticed it and it seems we noticed it on our vacation.  Surely he was doing it before then but I can't remember.  I think it registered but I thought he was just being overly cautious as he walked in new areas.  He's always assumed a bent postilion in unfamiliar areas, but now he is always in that position and his leg doesn't seem to want to flex.  So I'm worried about what we will find out with him.  Luckily we are going to the same doctor who sees Selah (and who did both of her hip operations)  it's easier when you have a good relationship with a specialist!

Then Thursday we have horse back riding in the morning  and Occupational Therapy in the afternoon.  Selah is getting her new wheelchair on Monday, Sarah has horse back riding.  Then Tuesday Selah has an appointment in Orlando with a Nutritionist.  I don't know if you can tell but she's put on a bit of weight and had a huge growth spurt.  She is wearing women's sizes now!  We want to make sure her calorie intake is not too high  Her Gastro was a little concerned.  Personally I love to see the girls grow but we want her to stay healthy.  Then Wednesday Sam and Sarah have an appointment in Orlando with a geneticist.  They've had DNA testing but neither of them have any of the DNA markers associated with Peter's Anomaly.  The Geneticist feels there may be another marker out there so they are going to be tested again with a new kind of test.  I don't' know much about it but I'm sure I'll learn more next week.   NOW you know why I'm loving the Steroid so much!  My life doesn't slow down!  It's a crazy life.  So I'll keep rolling:)

Will the Circle Be unbroken

So I've been banished to my room all day because I have a terrible sinus and double ear infection.  My eyes are literally just rolling tears & if I tip my face I better have a Kleenex to catch the water. Since all my kids except Selah have been sick this summer I'm hoping not to give them back their wonderful present to me!  Even my husband just popped in to get his clothes for work tomorrow and gave me a wave LOL  No one wants to be with me but Sarah and she was the last one sick!  She handled it like a pro- only was sick for a couple of days but boy did she want to love on Mama during that time!  I sure don't want to give it back to her!  It's funny but I've fought this junk for more than a month- I'd have a little sore throat or ear pain so I'd take some Vit C and Advil and it would be gone.  But I just couldn't fight the inevitable after having all these sickos around!  I don't think I've ever been so glad to see a doctor as I was this morning!  She got me on three meds and I am happy!!!  This week was/is all planned out!  Time to get better!

So being in my bedroom all day but not wanting to sleep, I have watched way too many YouTube videos and read way too much on Facebook.  I find myself going back to videos of church services (yes I'm wild like that) that remind me of my childhood in a Pentecostal church.   You know, I saw some foolishness, and some fakeness but I saw plenty of real moves of God.  There was a reverence for the things of God, even though the church folks might be loud and undignified -there was a reverence that I don't see today.

As a disclaimer, I've always been more of an observer than a participate.  But my heart was touched and I believe those childhood/teen/young adult memories are something that has kept my faith strong in spite of many adversities.

 I can remember times of being at a camp meeting-back when I was growing up the "tabernacles" were all Open Air!  That means no air conditioning in the summer time-which is when camp meetings were held!  We went to two different ones each year.  One was held in Wimauma Florida-near Tampa.  It was the BIG one for Florida and held in June.  The other was nearer home in Mayo Florida and held in August.  And that one was right down the road from chicken farms and cow was fun!

There were wooden seats inside the tabernacle and ceiling fans.  But if you brought your lawn chair you could sit outside and try to catch some breezes-usually all you got were bugs lol.  It was an experience.  One time we were guests of a family friend who was the head of the Church of God in South Caroline, so we went up and stayed on the campground in a trailer.  Their tabernacle was on a mountain (probably a hill but I was young and from Florida it seemed big!)  I will never ever forget sitting there singing an old hymn "Peace Peace Wonderful Peace, coming down from the Father above, sweep over my spirit forever I pray in fathomless billows of love"  I was only 5 or 6 years old and I can remember the song, and looking out in the dusk down the side of the hill at the trees,  and just absolutely knowing God was real and near to me.  Almost 50 years have passed since that day, all the folks I was with are gone, but that assurance is still there in my heart.  It's guided me all my life.  What a legacy!

Also I can remember being at Camp meeting till late at night and people praying around the altars.  There was no time clock, no one was ready to leave.  Sometimes during the service, a message in tongues would be given along with the interruption.  There was hundreds of people there but the whole building would have a solemn hush come over it-you just knew God was speaking.  All those memories made me who I am today- although I'm a mess-I could be a much bigger mess if I didn't have a framework of God in my life.

Let me encourage you to take your kids to church, every week, keep them involved-you will not regret it.  At the time when I was growing up I had absolutely no idea what was really happening as I was dragged to church, Sunday School, Sunday morning worship (no we didn't have "children's church-we weren't wimps LOL) Sunday night service, Wednesday night service, youth group, Girls's programs, REVIVALS (so many) Vacation bible School, and Camp meeting, church camp......I did it all!!!  Honestly I didn't really mind it too much, but I didn't have a choice if I did LOL!!  But something was being imparted to me in my spirit that would take me through life.  Don't ever get too busy for church Mama, don't believe the lie that you don't need the church.  Yes you do!  So do I and so do our kids.

No I know you can't always keep kids from trouble but my husband and I determined early on that our kids would have to get through us to get to the trouble.  And keeping kids in church will give them a rock to stand on even when they may stray some.

Our church doesn't have all those services like I grew up with and I miss it.  And I have to say I worry about my kids not being in church enough.  There is something about immersing yourself in God and the things of God that will get a hold of a person.  I know that's not really popular in this crazy busy world we live in now but it is true.

Ok back to fond memories....the last time I went to the Mayo Tabernacle was to take my grandmother.  She had quit driving out of town at night (she was about 88 years old thank God she had quit driving her little bright blue Nova at night!)   Anyhow a friend of her's Bro TL Lowery was preaching.  Our son Steve was about 2 years old.  The tabernacle was still open and I spent some of the time running around with him but it was sweet.  Now my granny is gone, her friend the preacher is too.....   We went by there a couple years ago when we were camping on the Suwanee River  and I saw that it was now enclosed and air conditioned.  No more smelling the chickens or cows or having bugs fly around you!  I imagine some of the "dancing" I saw was shaking off a bug!

A few years ago, we went down to Wimauma camp meeting.  That tabernacle has been enclosed for some years and was comfortable but I missed it being open.  But that night I sat all the way in the back and was so ministered to by God.  We had been going through alot in our church and with Sam who was still very sickly.  Let me tell you that minister preached right to us about not giving up and trusting God.  I wept the whole time but was so encouraged in my heart.  BTW I'm not a crier either, preachers can't work me up emotionally.  But I know when God is in something and He was in that sermon.  I'm sure we were not the only ones who had been through some fiery trials  but it was a precious time for me.  It did remind me that something can change on the outside doesn't have to mean that the inside has changed.

Most of my earliest memories were in church.  Earlier this year we were in my hometown on a weekend.  Our oldest son was showing his documentary at the town's park that he had done for Perry.  Since we were there over the weekend I got to go to my family's church.  It had been at least 20 years since I'd set foot in there.  Our family sat in my family's pew where we sat every service, on the left side about 4 pews from the back.  The memories overtook me, in my mind's eye I could just see all those folks again.  The church has dwindled down, so many have passed away.  We sang the old songs, we sang "Oh I want to See Him" and I thought of how God had brought me from there as a child and now has given me a family and a ministry.  I thought of how it is a continuous of passing the faith along.  The faith of my family was passed down to me and sown in my life, I had to make the choice to accept it and pass it on to my kids.  I thought my great aunts and granny would be proud that I was there with my kids in church, serving God.  Yes, I cried a bit, in fact I was afraid I might "ugly cry" if I wasn't careful!  But it was very meaningful to me.

I almost forgot to take a picture but I did right before we left.  You know recently we took some pictures of the whole family at church.  for some reason we take pictures at the front of the church and have for years.  Our friend who was taking the photos asked if we wanted to take them somewhere else and it kind of startled me.  I didn't realize how meaningful it was to me to take pictures inside the church.  Anyhow then I started looking at our pictures over the years and so many of them are at church.  But that is where we are dressed up and all together so I guess it makes sense LOL

So I encourage you to make church attendance a regular part of your family's life.  You will not regret it.   My husband was taken to church on a regular basis and he also feels it gave him a foundation.  His church was in no way as entertaining as mine was and I doubt you can hardly find a church today that is like it was LOL   But there's something to be said about taking the time to acknowledge God as a family on at least a weekly basis.

My husband loves that old song made famous by Johnny Cash "Daddy Sang Bass" I think it was written by one of his associates about Cash.  There is another song called "Will the Circle be Unbroken?"  Both songs have the theme of faith knitting our families together throughout eternity

Monday, July 30, 2018

Summer 2018 Part 4 Selah Sam & Sarah

Now for an update on Selah, Sam and Sarah.

Sam and Sarah have been doing horse therapy for several months now.  Sarah goes twice a week but will start going three times a week in September.  Sam goes only once a week but will start going twice a week in September.  Sarah is slowly progressing.  She is getting a more normal gait while she walks with us holding her hand.  She absolutely loves horse back riding.  She is a natural.  Everyone who sees her in the saddle says she rides like a horsewoman!   We have more hope than ever that Sarah will walk at least in familiar areas.

Our horse therapist is a Physical therapist.  She has been able to determined that due to a small growth spurt Sam's hamstrings are too tight and causing him issues when he walks.  He also may have some scoliosis.  We have a doctor's appointment with orthopedics  on Wednesday for a check up and x-rays.  We had noticed that when he stands, he keeps his knees bent.  This is a new thing that has happened gradually and we hope to fix it before it becomes a huge problem for him.

We did horse therapy the day before we left for vacation, then we got the sad news that both horses the kids ride and another one of our therapists' horses had been hit by lightening and killed.  Unfortunately this happens a lot in our area.  Some friends of ours had this happen a few years ago.  The horses go under a tree and then the tree gets struck and the electricity travels along the ground and kills the horses too.  They have been able to use another horse for therapy.  They are moving to a brand new stable & riding area so we are looking forward to that!

All three little ones also started Occupational Therapy weekly.  We were able to find a company that will come to our home to do it.  We are hoping to add more therapies also.

Sam also loves movies and popcorn!  He liked the Incredibles 2 and Hotel Transylvanian 3.

Sam got a new I-pad and is enjoying it very much.  He loves Baby Bum and ChuChu on YouTube.  Sarah will listen but she doesn't want to hold it.   I think we will start him on Gemini again.  It is a program that helps non verbal kids learn to speak.   We tried it for a few months a couple of years ago but it seemed to annoy him.  Now he's older and more used to electronics-maybe it will help him.

We are able to fund all these things with the Gardiner Special Needs Scholarship.  It is a Florida program for special needs kids who are homeschooled.  The OT & any medical equipment  is through our insurance.  I'm thankful for programs that help us to do things for our kids.

Selah is doing great!  We have FIVE nurses now!  For several years our three nurses covered her shifts but now we have two more who live close.  It's making things so much easier.  Selah has had most of her specialists appointments and everything is perfect.  She just got a beautiful new stander and is getting a new wheelchair next week.  She also is getting a new mattress and gel pad for her bed.  Earlier this year she got new hand and feet braces.  She also has a new sling for her lift coming.  She had a growth spurt and needed all new things  Selah is doing great and very awake and aware of everything.  We ae so grateful for her health and her comfort.

We are having an awful issue with our parking area as we have had rain daily for the past three weeks.  We paid to have a dump truck of rock brought in and then had to have another 2,000 pounds brought in for the end of the driveway.  2,000 pounds is not as much as you would think it is believe me!   As I type it is pouring again.....  We've have several people stuck in the mud.  One hysterical story on me.....  Steve's roomate came by and got stuck.  He's a country boy- didn't need me to call AAA.  He and Steve were going to push his car while I gave it gas.  No problem right???  So it's pouring rain and I'm in the car giving it gas, they are pushing it so hard but it just won't move..... then someone says "Do you have it in reverse???"  Well I did then....LOL  they laughed about their workout trying to push a stuck car in Park!!!!  LOL  That'll probably be a story told at my funeral!  We all got a good laugh out of it!

Well my bunch have all been a bit sick over the summer besides Selah.  Steve & Shad had "it" worse and several times.   It seems to have finally caught up with me.  Saturday afternoon I started getting sick- every hour I felt worse.  I finally went to Urgent Care today to find out I have a double ear infection and a sinus infection!  GEEZ!  Ain't no body go time for that!  Especially not me!!!   I'm on three pills-normally I avoid meds as much as possible but this time I'm gladly taking them!!!  Usually I can take a hot shower, drink some hot tea and take some vitamin C and beat it but not this one.  It has kicked my butt!  I'm so thankful for the meds that gave me and am hoping to feel better soon!!

Sunday, July 29, 2018

Summer 2018 Part 3 Shad's travels

Shad had a summer to remember!  In May he went with the Peninsular Florida District of the Assembly of God's youth department to an outreach that is held yearly in Miami.  Ironically I went on the first outreach held back in the 80's.  I was college aged!  He is only 14 years old.  He rode with another youth group and when I dropped him off, my stomach dropped everyone was old and so much bigger.  He was the youngest to go but he was so ready to do it! 

They stayed in a church's gym and did many outreaches in conjunction with the Assembly of God churches in the area.  He literally went from sun up to way after dark and he loved it!  They gave out food daily, did skits, sang and invited folks to local churches where the folks can find spiritual and practical help all year long.  

Just a few days after he got home from Miami we headed out for NY and Canada!  Then the Monday after we got back from our trip he headed out for a week of camp with our church kids.  The picture below is of him after he got back.  He was telling us all about camp then he crashed!!!

 Then the next week he headed for El Salvador with the Pen Fl District youth.  If watching him leave for Miami was hard..... watching him leave for El Salvador was much harder!!!  Again he was the youngest not traveling with family and so little looking,  They left at an ungodly hour of 4 am so Steve and I got a hotel room right by the airport so we could sleep then take him and go back to sleep.  The night before we walked around Disney Springs and took him to a Red Lobster.   We just found out that he needed to take 250 small toys & candy  the day before he left.  Thankfully my friend who runs a thrift store had more than that for him of clean unused toys.  He was so happy! 

We had fun packing those!!!!

Leaving from Orlando.  Yes I almost cried!  There was some confusion at the gate, I'd been watching some bags and I thought he had headed through security without saying goodbye!

They worked with King's Castle which is an Assembly of God program that works with all the local churches.  It provides camp for the locals and respite time for missionaries.  Shad met some missionaries who had had to flee Venezuela because of the issues going on there.
He dressed as a clown, did skits, handed out toys, went to local schools (all still in session - they have a different schedule than we do)  they were able to reach out to the red light district and to many brothels where there were prostitutes as young or younger than they were.  They were able to share with them about ministries that could help them get away and find safety.  It was a very eye opening experience for Shad that was sobering, seeing such great need.

Going on a mission trip may not changed the whole world but it can change the person who goes on it.  It can make hearts more tender and giving.  It can help a teen realize how much they have and to be thankful for it.  And hopefully it will teach that person to be open handed to do for others whether it is at home or abroad   On this trip Shad got baptized in the Pacific Ocean.  That was an experience for him.  He had always wanted to be baptized in the ocean.  This was very meaningful to him.   

Shad had a fantastic summer and now he will be starting back homeschool early.  He is a year ahead and hopes to finish 10th grade by December, then he can apply to do dual enrollment with our local college.  .