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.  

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!
 


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!!!!!

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

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!

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. 

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!

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!!