Housework & Responsibility

You know it's not hard to find an interesting discussion argument on FB but this one was annoying to me.  Basically a stay at home mom wrote how she expected her husband to do chores when he came home from work so she could spend the day making memories with her kids..... yeah right- probably wasting the day watching TV or being online!  Some of the stuff I see on FB makes me laugh for real.  We love doing things with the family- but we also like an orderly ran house.  I can guarantee you that if you take the time to clean and organize your house, you'll have more than enough time to do all the other things. I've found the more organized I am the more I have time for fun things!!!   I'm all for making memories but there's a balance.  Believe me some of my kids' memories will be doing chores LOL  It prepares them for real life!   I've met grown adults who had no skills in taking care of themselves in the real world.  That made me determined that my boys would not have that problem.  Sam even knows how to pick up his toys.  I think that's healthy.  I know I've heard the argument that none of their friends have to do chores....I tell them their friends will not be prepared for the reality of life.


One thing I think is very wrong with parenting today (and it started with my generation) is that the kids are like little gods. Now I love my kids but I don't worship them.  My kids know better than to interrupt me if I'm speaking to another adult.  I don't feel I have to meet all their needs by playing with them all day (even my little ones-need to learn to play and entertain themselves some)  We've never turned a birthday party into some  extravagant thing.  I doubt I've spent more than $100 on any party for my kids.   If they have issues with some other kid, I let them deal with it themselves (I'm talking about my older boys of course)

When I talk about my parenting style-there is a difference in how I deal with my older boys and my little ones with disabilities obviously.   With the older ones, go watch a Madea movie....that is my role model LOL  But even with my younger ones, I still draw a line if they understand what they are doing.  Sam has gotten in a bad habit of vocalizing over our conversations.  It's the same thing as a verbal kid interrupting their parents for something silly.  So we remove him from the situation and tell him "shhh"  He is learning he is not allowed to do it.

That brings me to another very annoying discussion I see on FB (and real life) sometimes about the behavior of special needs kids.  I can not tell you how often I see parents basically saying that people shouldn't judge them or their special needs kids for their misbehavior!  That's a bunch of bull.   With Sam and Sarah (and Selah before the accident) we absolutely believe they should be taught to behave.   Believe me, in 20 years when they are in their 30's, life will be so much easier for everyone if they can follow rules.  There is certainly a balance and we use different strategies for them than we did for our older boys  Most of the time we remove them from situations until they can handle them.  For example they go to church weekly and sit on the front row.  Since Sam was a baby he's been going to church.  If he gets loud I take him out and sit with him quietly in the office with NO toys.  I don't let him enjoy himself nor do I play with him, although I'll hold him quietly.  He's learned over the years to sit in church and rarely has to be taken out.  Sarah has almost always been easy with situations like that as long as I'm sitting by her, she's happy.  And that behavior of learning to sit still has transitioned to us being able to take them anywhere and they behave!  They handle themselves great at restaurants and movies.  So I figure if these two little ones can learn to behave without spankings then there's hope for any child.  It's a cop out if you don't teach your child coping measures and it will only hurt the child in the future.  Of course if the child really doesn't have the ability to understand that is one thing, but most of the conversations I hear is about kids who are much higher functioning than my little kids.

Back to my other peeve- Before Sam I worked a crazy job as a Probation Officer Supervisor.  I also commuted about 45 minutes each way.  Now that was hard but I loved it at the time.  But I can absolutely promise you that staying home with my kids is easier than being a working mom even though most of my kids require more than the average kids.  It's a different kind of stress but I can assure you I don't expect my husband to do housework when he gets home.  Of course he does little things like putting his dishes in the dishwasher or dirty clothes in the hamper but that's about it.  He does help me get the little kids to bed most nights and he is the toothbrushing King!  When I worked we cleaned the house together on Saturdays but with us all gone all week it was not much of a job.

Actually sometimes I do miss working but that would be impossible for me.  I've kidded around that I could go back to work and Jon could stay home but if that happened I'd expect the house clean and supper on the table when I got home LOL  It's not about gender roles to me it's about being fair and responsible, something that seems to be lacking in this day and age.

Speaking of being responsible, I've done laundry all day long-God bless the inventor of the washing machine!  I think that is my most used appliance.  I've got the same washer and dryer that I bought when Sam was a baby.  I do so much laundry-I can not believe how good those machines have worked!  The laundry room backs up to Selah's bathroom and our nurses always say that they hear the washer going every day.

Tonight I'm going to cook Chicken Fettuccini.  I'm using a mix because it's very low fat and I'm adding spinach.  I don't usually use mixes for anything but this should be ok.  I'm also making garlic biscuits which is not something I do much either.  I use fat free milk and cheeses with mixes and that keeps it more heart healthy.  Sometimes you just have to have a little something different.

The frozen meals have been a hit and very easy.  I've kept that going and it's made dinner time much easier.  I need to replenish my freezer but I think I have three meals ready to defrost and cook.  It's challenging to think of meals to fix when we use only chicken.  Publix has a ground chicken breast that is only 1% fat that I use in place of ground beef but sometimes you just crave BEEF!  Then I use chicken breast for everything else.  There is only so many ways to cook chicken LOL  I did make a beef stew for Sarah and the kids and Jon and I had a bowlful (no meat for him though!)  It was sooooo good!  I think that's Sarah's favorite meal.

Tomorrow horseback therapy starts back .  I know my kids will be glad.  Sarah loves riding horses as much as anyone I know.  Then they come home for an hour each of Occupational Therapy.  Most Thursday Sam is also going to massage therapy at a chiropractor to see if it will possibly help his legs.  Thursday is my crazy day.  But this still beats hunting down probation cases LOL

Hospital Week!

So you saw the headline and wondered which child it was..... well....the patient was not a child but Jon! 

Last Monday night I was at a Republican meeting for our county and I get a phone call from Jon saying he was still at work but felt weak and nauseous and he thought he'd go to Urgent Care.... He then proceeds to tell me he'd felt like that since Sunday night.....  I was at a meeting in an echoing community hall in the middle of a absolute lightening storm so I couldn't step out and tell him off  for working 10 hours before he told me this!!!  Plus I was afraid he was having another heart attack.  I told him to skip Urgent Care because they'd only send him straight to the ER!  Of course he would not call an ambulance and I absolutely was afraid to leave the building for a little bit because of the ferocity of the storm.  I got to the ER right after him and they began to immediately check his heart 

Thankfully his heart checked out ok but he began to get progressively sicker.  He was admitted and the doctors all began to run tests on his heart and Gastro system.  Let me tell you everything was looked at several different ways LOL  It turned out that he had something that had caused him to have terrible reflux and a hiatal hernia.  He has always had a strange condition that caused his espohageal muscles to stop working and caused esophageal strictures that had to be stretched out.  Usually a person has reflux first that would cause that but he had the problem then he got reflux as he got older.  I remember at my 10 year high school class reunion we had to leave becasuse Jon got a piece of food stuck in his throat.  We were on the way to the ER when it went down.  He had been dealing with that for years before then.  Anyhow he had to get his throat stretched out again last week and the doctor saw that he had the hernia and that his whole system was inflamed

Unfortunately the inflammation went through his whole digestive system and he also had colitis!  . He was so sick!  Actually I don't think I've ever seen him so sick-he was on morphine around the clock that only took the edge off his pain.  It was rough.  I stayed with him as much as possible but Steve was already back in college and the young lady who helps me out with Sam and Sarah had also just started college.   It was a busy week for me running back and to from home to the hospital.  Thankfully by Friday afternoon he was feeling better and was released on Saturday afternoon.  He came home on a bunch of meds.  The doctors couldn't really agree with what caused all this havoc on his system.  They suggested food poisoning but came to think it was just something that kicked off "the perfect storm"

One night on the way home I felt so burdened.  At that point no one had any idea what was really going on and there had been some strange heart pauses while he was being sick on the toilet (that had turned out to be nothing related to his heart condition but just showed how sick his whole system was)  I felt very alone as we have no family in our town and people spread out.  Many times we've been essentially alone in hard times.  I'm not saying friends and family don't care-everybody has their own situations.  But I was definitely feeling very alone and worried.   We have a bit more responsibility on our shoulders than most people our age, as we realize that will be there for the rest of our lives.  On the way home that night I couldn't help but think of worst case scenarios...and how in the world we would handle things.  But you know what?  I literally just gave it all over to the Lord and told Him that he'd carried us in times past and I knew He would carry us in the future too  I got home, did some things for the kids, took a hot shower and had the best sleep ever!!! 

I'm so glad I have a God who is with me through the good and bad times & I'm so glad that I know He will carry me through no matter what! 

This week is starting better and I'm hoping we have a nice quiet week!  LOL  I've had enough excitement for awhile!

During the week I managed to get another load of gravel brought in for our parking area in front of our house.  We have had such rain that people have been getting stuck for weeks in our parking area.  We've now brought in about 10 tons of gravel-it helps but it's still bad!   And it smells sooooooo bad outside!  I've lived near a swamp for the last 14 years but I've never smelled this smell before.  My husband asked if it was possible that one of the cats got buried in the gravel!  (LOL- no I actually counted all the strays we feed after that statement)  Then I found out that others are having this same smell.  It's something new and not very nice.  I honestly don't mind the smell of a regular  swamp.  I like it to be honest, it doesn't smell bad but this smell makes me gag!  Since May we've rarely gone a day without rain and usually a very hard rain.  We just keep hoping that we don't have a hurricane, if we do, I wouldn't doubt that we'd get water up in our house!

So that's our latest update! 

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!

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.

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