Tuesday, October 9, 2018

Test Results for Sam



We got the results back from Sam's sleep study and it is not good.  He had 164 obstructive apneas, 136 hypopneas, 2 central apneas, and 11 mixed apneas....  And although we were pleased that he slept,he did have prolonged periods of wakefulness during the study that the doctor who read the study felt resulted in an underestimation of the severity of his apnea! 

We received the results last Wednesday and were immediately given a priority appointment with ENT for last Friday.  It was assumed that he would need his tonsils and adenoids taken out.   If only.....
It seems his tonsils are smaller than normal and no other issues were seen.  We still have to get an x-ray of his adenoids but the ENT did not think there was an issue.   She feels it s more like muscle tone.  It may even be because of the near drowning!  She felt it was like a CP type issue. 

We've also noticed that his CP has gotten worse in his legs I don't think I've gone into details on here but Sam's legs are so stiff and he stands with them bent.  this has come on quickly over the past year.  He has seen orthopedics and is having therapy specifically addressing this issue 

So we are FREAKING out here!  He was given a prescription for an apnea monitor on Friday  today is Tuesday and we still do not have one.  I actually had to fight to get the prescription.  The ENT suggested it but since she is not seeing him again (no need) then I had to get his pediatrician to write an order after 3 pm on a Friday.  Our doctor was not in but did it anyhow.  He's a great doctor!!!  Our insurance approved it by 6 pm....   since then we have been lied to by companies.  Friday night a company said it was on the way to our home with a monitor.  They never came!  So now we've changed companies....still waiting!!!!

We borrowed a machine but it is not quite what he needs but it does alarm if he gets too low on his oxygen.  For the time being Sam sleeps with Mama.  He is quite pleased with that LOL  I've not got a lot of sleep but last night was the best.  I believe I slept through some of his lighter alarms.   Sometimes just hearing a beep with make him take a breath but it doesn't wake him up. 

The ENT is not sure what will happen now.  We have an appointment with a sleep specialist on Tuesday and we hope we get some answers.  They will probably do another sleep study and try both a bi-pap and a cpap machine.  We do not know if Sam will adjust to having something on his face.  The ENT  fears that neither machine will completely help him and he will still have to wear a monitor. 
To say we are concerned is an understatement.  I've been afraid for Sam at night for awhile.   Not to be overly dramatic but I've felt like death was near to him!!!  I know that sounds crazy but it's true.  Sleep Apnea has always been a concern.  He wore a monitor until he was 7 years old- the apneas he had back then were central apneas meaning the brain forgot to tell the body to breathe.  But he outgrew them.  We did try to do a sleep study in December of 2016 but he wouldn't sleep.  I don't know if anything would have shown up then or not.  Maybe this is just his CP getting worse as he gets older.  Sam has always been my mystery baby!  So many medical oddities that no one could ever explain to us.  thankfully he outgrew alot of things but now it seems he is growing into other issues. 

I'm not an easily discouraged person but I feel discouraged right now  We are still looking for that 4th nurse for Selah.  We have three committed and wonderfully loyal nurses but we just can't seem to keep that 4th nurse's position filled.  I'm beyond tired of dealing with our agency over issues.  They probably cringe every time I call as I cringe when I have to call them!  Sometimes I despair at the thought of trying to keep her home after our nurses retire. 

In my life I have so much responsibility.  Most of the time I can deal with it.  But the WORST part of being a mom with special needs kids is having to deal with a bunch of idiots (companies, providers, health care providers etc) that have no emotional attachment to Selah or to anyone.  Healthcare was a calling but I don't see that holding true for many  people involved in the healthcare field anymore.  I have some great doctors that we deal with that see my kids as people and we've been blessed with great nurses but it is very rare to find a provider (insurance, machines, supplies, nursing agency, pharmacy etc) that really cares.  We had the very best pharmacist for awhile.  I could count on that guy for everything.  He moved on and started his own pharmacy that our insurance does not work with as of yet.  I don't expect special treatment but I EXPECT PEOPLE TO DO THEIR JOBS!!!

So this has been a stressful few weeks for me.  It can only get better I hope!

****just as i was finishing this blog I got a call from the sleep specialist and they've moved up Sam's appointment to Thursday morning.  i am so glad!!!

Monday, October 1, 2018

Highlights




Do you want to meet our new pet?  Meet Possum baby  I've always liked possums and this is the smallest one I've ever seen.  He eats after the cats every night


The cats leave him alone.







Possums are really good animals and eat up bugs.  They can make holes in your yard but we have a 1 year old Lab who makes way more holes than this little guy ever would.



Last week we took our lives into our hands and went with our church, skating.  Growing up I was quite the skater.  Near my friend Lisa's house there was a road that had asphalt on it.  Most of the roads in our area weren't paved but this one was and was perfect for skating on.  We both had skates and skate boards. I can't tell the how many hundreds/thousands of hours we skated on that road!  Also the road by my church was paved and I'd meet up my little pastor daughter's friend Cheryl and we'd skate for hours.  I also frequented the skating rink outside of town.  It had an uneven wooden floor and NO air conditioning just big windows and a giant fan in the back of the room.  But it had a good juke box:)  I'd go s often as I could get a ride out there.  Sometimes our church's youth group would rent the place out but back in those uneducated times we would blissfully skate to all the rock and roll songs we could play on the juke box LOL  Later when the new rink was build in town with air conditioning the youth group would still have skate night but we'd only be allowed to play Christian music,  We'd learned about "backwards masking" by then LOL  At our skate night last week we only played Christian music- of course I as the pastor's wife understand why - but something was just missing without having the Rolling Stones singing "Beast of Burden" LOL







Couples skating








Show off



I did skate some in college but I'm pretty sure I hadn't skated since Steve's 12th birthday party when we rented out an old skating rink near where we live now.  since Steve is going to be 23 this month, I think it's been awhile LOL  Luckily neither Jon or I fell.  By the end of the night I was starting to be able to cross my feet over each other on turns!  Yay Baby!


We had a belated birthday dinner.  



















We ran over to see Steve for a couple of hours.  Sarah stayed home this time with her respite worker.  Sometimes it is easier just to take one of the little ones with us.  


Last Wednesday it was time for Sam's sleep study.  He had Apnea for years and slept with a monitor on till he was 7 years old and would take it off nightly.  He had improved enough that the doctors were ok with him coming off.  I didn't really want him off but it was impossible to keep them on him.   About two years ago we tried to do a sleep study on him.  I didn't know how it would go.... well he was very good about being hooked up BUT he stayed awake all night with his hands folded on his chest!   We knew we would have to help him more this time so we went to the beach for the afternoon.  


Fort Desoto Park is beautiful!   There has been some red tide so we had the place to ourselves.  We were afraid to go in the water but we didn't really see any signs of red tide.  













Sunshine Skyway bridge!




Then we headed back to the Ronald McDonald House and Sam had some playtime
































I gave him a bath and a BIG supper full of lots of carbs (thanks Carrabba's)  He tried to fall asleep after his bath but I told him he had to wait!

So we finally get over to the hospital and he gets hooked up.  Thankfully he was so sleepy he literally climbed in the bed when we got in the room!!!












 It looks like we are by teh bedside of our critically ill child!!!!



Daddy stayed with him.  I enjoyed a Ronald McDonald House bedroom all to myself!! I dont' know when the last time was that I was alone!!!



We haven't got the results yet.  Sam slept good and snored so I'm sure they got a good reading.
Of course our hope is there is no apnea and he just snores....but he snores so loud!

We stay busy!  Sarah does her horse back riding therapy 3 days a week and Sam 2 days.  They along with Selah have Occupational Therapy an hour a week.  There is always some appointment on the other days.  Tomorrow Selah has her yearly neurologist appointment in Tampa.  She is doing good   Then Wednesday I'm interviewing a new nurse for 2 shifts.  There's always something going on here.


Hope you have a great week!

Wednesday, September 19, 2018

Life and Reflections

Reflections on my 53rd birthday.....

WHERE in the HECK did the years go and how can I be 53???  Oh my Lord that sounds so old.  I'm not old- at least not in my mind!  

Today my best friend from childhood sent me an amazing present....so amazing it will NEVER be shared publicly .LOL   While cleaning her childhood home she found pictures of us sunbathing probably around the time we graduated from high school.  Dear Lord in heaven above we were so skinny in our little bikinis.  There was one quite racy one with us lying on our stomachs with no tops on!  OH MY GOSH!  We just can't figure out who in the world took these pictures!  We can tell we realized that pictures were being taken-it's not like a perv did it LOL.  But neither of us have any memory of this.  We are guessing one of her crazy brothers took them WITh our knowledge.   LOL  But we absolutely LOVE the pictures because we were so tiny and hot!  But the thing of it, is at the time we had very little self confidence and thought we were fat and not hot at all.  We were dying laughing about these pictures and how absolutely stupid we were back then.  If only we'd seen ourselves as we truly were....  well heck we would have probably got into waaaaay too much trouble!

Then as I was taking Sam for his massage therapy session I was thinking of LIFE.  You know LIFE with the capital letters,,,,LIFE is a funny thing.  When you are young is is so long and stretched out before you- you just can't comprehend getting old.  I was raised by old people and I couldn't grasp it!  Now all of a sudden there is more LIFE behind than what is ahead and it's sad.  

I get so nostalgic for the 1970's and 80's.  A song or an old movie can take me right back to that time.  I guess everyone thinks "their time"  of childhood and teen years was the BEST time but my time was the best!  We had just enough of the new technology to be helpful and just enough of the "old ways" to keep us grounded.   We had 3 TV channels-that was enough.  We had phones but not a stupid cell phone that is attached to you like another limb (yes I carry one too)   It was a good time.  No one was too crazy about safety rules and we all lived to tell our story.  All the folks who raised me have been dead for years but sometimes I think of what I would give to be able to go back for just one more day....   Back then one day just dragged on especially in the summer.  Now a day would be such a treasure.  

I started thinking about my life.  I only have a few regrets-TWO  to be honest- of things I did that hurt someone else (and no I'm never sharing those on here!!)  Most of my regrets are things I did NOT do....however if I'd done some of the things that I regret NOT doing....I might have more regrets of the things I did do LOL  Most of the things I regret are chances not taken.  I was too cautious in so many areas.  But then again I'm thankful I was cautious in some areas!!!!!   

My upbringing was strict.  Once I got older I was not allowed to wear pants until I completely rebelled and refused to go to school if I couldn't wear pants.  Evidently I was pretty strong and won that fight!  But even after I had more freedom I was so worried about what I wore-I remember wearing two slips under some dresses because they were too thin... really???  What the heck is a slip??  LOL  I was such an old lady.  

I regret I did not tell more people to "kiss my grits" when I was younger.  I wish I'd had 1/10 of the confidence I have now back in high school.  Dear Lord I would have been a force to be reckoned with if I did!  Honestly I'm not sure when or how the confidence came in my life because even after I was married I can remember times when I handled things so much more differently that I ever would today.  Now I just do not care....  what people think or if they get their feelings hurt.    That doesn't mean I go around seeking to hurt anyone but I say what I mean without any double speech or lack of clarity to say the least.  I've often been told that a person knows where they stand with me.  Honestly it is soooooooo much easier for everyone that way.  I've found that it is usually untrue to a person to not be honest to them about things-whatever it is- usually there is a reason when I'm not clear with someone and it's usually means I am trying to curry their favor.  For example if someone was doing work for me but not doing it right and I don't say anything....why is that?  Maybe I have a fear of displeasing them or I'm trying to make them like me..... that's not good and I'll end up having a job done badly.  That's just one little example but it's so true.    Anyhow I don't know when this happened in me but I'm so glad it did and so sorry it took me years to have it!  Other people may not agree with me LOL


And boy do I regret the SILLY tears I've cried!  I wish I could tell my younger self to take a freaking chill pill and only cry about important things.  Actually if I went back to my younger self chances are I'd slap the crap out of her! LOL


If I could go back in time I wish I could go back to the start of high school with the wisdom and confidence I have now.  But I guess almost everyone wishes that!   I think due to my upbringing with no real mom or dad I had less confidence than most folks.  My day to day future became very shaky when my great  uncle died and my great aunt began having issues with Alzheimer's.  My other great aunt who lived with us really did not want the responsibility of a teen girl (and I don't blame her)  But she was very hard to live with.  Prior to her being the "one in charge" she was sweet and fun.  But with the stress of everything she took it all out on me.  My great Aunt Bertha (who I called Mam) loved me like she was my mother and all my childhood years I had that strength but once Alzheimers took over I was on my own in most ways.   I went from being very strictly raised to really no rules and there was no concern for me other than they didn't want me to bother anyone or be an embarrassment.  I get it- I'm a caregiver now of three children with special needs- some things are not important to me in the scheme of life as I am dealing with day to day issues of care giving and all that entails.  There are things with Steve and Shad that we did/do not worry too deeply about.  there is just not enough of the pie to go around sometimes.  But the difference is that my boys have a secure home and life.  It was not an easy time for me.  

I just wish I could have looked ahead and had an idea of what was going to happen and the things I was going to accomplish.  Of course the struggle is what makes us all grow into the people we are.  I wouldn't have minded the struggle so much if I had just had more confidence in myself.  Although it's funny because people will tell me I was very confident as a teen- I think I was a good actress!!!  I dd't feel it inside.  

Sometimes a smell can take me right back to a place and time....  Hot pine trees remind me of preschool at the Armory back home.  It was the same place I graduated from high school at and where we had a festival every year.  It's surrounded by pines and there is a smell that I love.  There is a smell of a certain cleaner that our dorms in college were cleaned with, that smell can take me right back to those days.   My grandmother's house had a smell, not a bad smell but an old smell, recently I hugged an elderly lady and she smelled like that- I wanted to go to her house and sit for awhile.  

Maybe as you get older, the past is safer to think about than the future.  The past whether it was good or bad or a mix, is something that is done, finished, no surprises there and you survived it!   The pain dims a bit as you can put it into perspective along with the rest of your life.  

Truly my life has been one with extreme highs and lows.  No nice middle of the road for me-no sir!  There's been one big drama from the beginning till now.  Sometimes it does not seem like all the things that have happened to me could have happened to just one person!  LOL  come on God give me a break!  I'd love for the rest of my life to be boring and predictable!  Well I wouldn't mind the drama of winning the lottery!   I truly do not seek drama-it just seems to follow me and now I'm resigned to it.  I have friends who have faced normal life situations, some hard times but mainly just the regular inconveniences of life and I get jealous!  But hey I don't have many regrets about my decisions in life at least!  How dramatic I sound and I haven't even been drinking!  

Anyhow as I drive my kids from here to there I tend to have alot of time to think. 

So since I was near our son's college we stopped in to see him and bring him a few things he had forgotten.  By the time we got there he had to get to work but it was still good to see him on my birthday.  Plus today is Shad's birthday!!!! Don't worry he got all the presents-never have the same bday as your kid, I'm just sayin' it'll never be the same!  Shad turned 15 and got a phone.  It's a text and talk ONLY phone.  He is out more and I don't like him to not have a way to talk to us whenever he needs to.  He also asked for two different kinds of tool sets.  Who does that?  He got what he wanted and some clothes too so he was happy.  
























Shad telling about his mission trip



My Uncle Mack and me on my 4th birthday.  I loved him so much



Sally and me!  She was my present for my 8th bday I think.  Sally was with us for many years






So another year is passed.  My goal is to hit 100 the good Lord willing!  And I want to stay healthy and in my right mind so to speak!  Not sure if I've ever been in my right mind! If anyone comes up with a time machine let me know I want to go back to the 80's for awhile.  

Monday, September 17, 2018

Easy Like Sunday Morning




Easy like Sunday morning??  What a LIE!  FAKE SONG   LOL  Whoever wrote that song did not have children to get to church nor were they a from a pastor's family!  LOL

Our Sunday mornings have to move with military precision.  Jon is at the prison at 8 am to do a service for the inmates.  Our nurses have shift change at 8 am and  there is the feeding of the cats and dog that are staggered so the dog is not out while the nurses change shifts.  Now on Sunday mornings our wonderful respite care worker comes to help me.  She gets here at 8 am too and gives Sarah a bath while I'm getting ready.   Then it's time for Sam's bath while I'm doing Sarah's hair.  Shad makes the beds.  Sarah eats breakfast (sometimes Sam and Shad if they want to but they haven't been lately) The whole time we are doing this-our nurse is getting Selah ready for church.  I try and leave at 9:30 so I'm at church by 9:45.  Shad gets the words on the screen for worship and then has Sunday School at 10 am. Jon comes back t 10 am and picks up Selah and her nurse.  (BTW the times are approximate except for MY times!!!!)   And then they head for church.  

So by the time I get to church I'm pretty done!  There are days I dread the whole process because it is a lot of work.  Some people would even question why we take the little kids- especially Selah but to me there is something very significant about being in church together as a family.  It's just the way it should be.  There are times I can grasp the enormity of the spiritual ramifications.  Today was one of those days.  

There was a slight glitch in the music selection.  Our music minster thought we had a missionary speaking and had tailored the music accordingly.  But we were off a week so he like me pick the songs since my birthday is next week.  I confess I LOVE Hymns- the old Pentcostal revival kinds.  So I picked  "When the Roll is Called Up Yonder",  "He's Coming Soon" -he'd already was going to sing one of my favorite songs "Leave it There"  Along with some newer songs- we try and do a mix.  

Anyhow as we were singing, the realization that one day our family will be in heaven together singing and worshiping really hit me.   Sarah is allowed on the floor to "dance" she spins on her knees and claps and she was so happy during the songs, sometimes I just know she understands in her heart what is being song about.  Sam was clapping.  It was precious.  

Then we sang the last hymn "Leave It There"  To me that song is sort of a guide to me reminding me to leave all my burdens with the Jesus.  It's always meant alot to me at various times in my life.  We changed the highlighted words in the chorus from- If you trust  and never doubt -to If you trust Him through your doubts 

Each of those verses speaks to me about various things we have gone through or in the case of the last verse will go through.  It reminds me of times when God provided financially for us.  It reminds me of times when God made a way through some bad situations.  It certainly reminds me of the many times He has been with us through sickness.  But it also reminds me that I have to take my burdens to the Lord and leave it there.  





[Chorus]
Leave it there
Oh leave it there
Take your burden to the Lord and leave it there, 
If you'll trust Him through your doubts, He will surely bring you out
Take your burden to the Lord and leave it there


[Verse 2]
If your body suffer pain and your health you can't regain
And your soul is almost sinking in despair, 
Jesus knows the pains you feel, he can save and he can heal
Take your burden to the lord and leave it there

[Verse 3]
If your enemies assail and your heart begin to fail
Don't forget God in heaven answers prayer, 
He will make a way for you,  He wll lead you safely through
Take your burden to the Lord and leave it there 

When your useful days are gone and old age in stealing on
And your body sinks beneath the weight of care
Jesus will never leave you then, He'll go with you to the end
Take your burden to the Lord and leave it there



So in the chaos of this Sunday morning I was reminded yet again of God's faithfulness and the hope of Heaven!  It might have taken a bit of effort to get everyone there this morning but again it was worth it!  

Wednesday, September 12, 2018

My Schedule is FULL!



We are back on a tight schedule once again.  Sam and Sarah have horse therapy Monday and Thursday mornings and Sarah has an addition session on Friday mornings.  Our horse therapist has built a new barn and therapy area which is almost an hour drive from our house so it's a bit of a drive.  Then on Thursday once we get home and eat lunch they have Occupational Therapy at home. 
On every other Tuesdays Sam has massage therapy and a chiropractor visit-it's also about an hour drive in the opposite direction.  Pray for my ten year old van!!! 



I have to say I have barn envy!







Sam and Shad sitting on the porch










Double stalls


I'm weird but I love the smell of a clean barn  I'm so thankful my kids get to do this!  To be frank, I'm not much of a horse person.  I think I'm too much of a control freak to enjoy being on a horse.  Growing up so many people had horses and I rode some but I never really enjoyed it.  Sam Sarah and Shad enjoy horses.  Steve and Jon are more like me-not too interested LOL  But I love barns.   Barns make me happy.  I can get a little anxious to see my little kids on such huge horses but I know they are in good capable hands.  

Sarah is walking more normal by the week.  She used to "scissor" that means she'd place her feet in a scissor formation in front of her and try to walk.  She never does that now.  The horse back riding seems to be rewiring her brain and helping her to understand where to place her legs and feet.  Sarah has no physical reason at all that would keep her from walking.  Her bones, muscles, brain have no issues from any damage.  It's just she missed the "window" of time that kids have developmentally to learn to walk.  She wasn't given the chance and given her blindness and intellectual delays-she just could not figure it out.  We'd had her in traditional  physical therapy since we got home with her but we really were not seeing much progress after a point.  My thoughts are that the therapy was actually teaching her bad walking habits.  Sarah was using a walker and that caused her to be too reliant on it.  She could move her feet in any crazy way and still not fall down.  Now for the great majority of kids- the type of PT she was getting would have worked for them.  But with her limitations and background (being left in a crib tied down for years) it just didn't work  

Riding the horse actually seems to reprogram kids brains.  Horses move like humans do so she is feeling the movement and it's reprogramming her to move correctly.  Sam does walk but he has some issues that are different than Sarah because he has a little CP.  






Sarah is being reminded to touch her horse to get him to go



















































 Sam hooked up to the electrodes-he liked it 


Sam has an adjustment, has the electrodes, goes on a water bed massage, and has a 30 minute massage.  He absolutely is the most cooperative patient LOL



Shad is gearing up to do several things.  He is hoping to go on THREE missions trips next year!  Have passport will travel!  He is hoping to raise the money to go to Uganda, Miami inner-city and El Salvador!  He will have to raise about $5000!  This Saturday kicks off his first fund raiser for Uganda.  Shad will be helping to man a table at a town festival.  He is also helping a neighboring church.  The church does a "Walk Through Bethlehem" at Christmas time and he is helping them build the set and probably will be in the play. Shad has also been offered a job at our family's favorite restaurant in town.  He turns 15 years old next week and will go in and fill out an application then.  He is really excited!   Our theory of child raising is to keep them busy for the Lord!  I've always told the older boys when they were doing things at our church like cleaning or doing yard work that they weren't doing it for me or even the church but for the Lord.   (That's also what I tell myself when I'm cleaning a toilet LOL)   I think it's actually worked! 

Steve is back in the college life!  He is the producer for the Fire Football games and is busy most weekends.  We haven't seen him since he left in mid August more than a month ago!  Over Labor Day weekend he went to Georgia because he was in a friend's wedding.  I'm glad for Facetime!!! 
Steve is also planning on going back to Haiti next summer to shoot a longer documentary about the ministry he worked with. 

Selah is doing good.  She has gotten all new equipment.  Her new wheelchair has some issues so we have an appointment next week to change out some things.  Last month we were FINALLY able to get her into see a Nutritionist.  It took YEARS!  We have two insurances but both were denying her and it is very expensive to see a medical nutritionist.  I was quoted $200 for the first 20 minutes!  Anyhow her gastrologist somehow got it approved.  For years we'd asked for her to have an increase in fluids-it's a delicate balance with a child like Selah.  Too much fluid can cause all kinds of problems  but of course too little can too. The Nutritionist agreed to increase the fluids.   We'd hoped to add more fluids in order to help her poop better.  She often gets constipated.  Since the fluid increase she has been doing much better.  Things aren't perfect yet but we have no doubt we are on the right track!  We give her Prune juice, Aloe Vera Juice and Cranberry juice daily as well as her feeds.  She also gets more water now too. 

So that's a bit about us.  Sometimes I don't know how we do it all but somehow it all works out. 



Wednesday, September 5, 2018

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




Monday, August 27, 2018

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!