Friday, November 30, 2018

October and November update

Well it's been awhile!  Of course we have been busy as always,  Here are some of our highlights.




Steve has an interesting job working for SEU   Recently they had Geraldo Rivera as a guest speaker and Steve worked the conference doing several things including camera work.  He later got to meet Geraldo and got a signed book by him. 









Living in Florida we've had nice weather!  The kids are back outside on the swings and look what we found in our hedge!  A cotton mouth moccasin.  Shad shot it dead then cut off it's head to make sure it was dead.  Yes he was wearing snake boots but he took them off even though i was fussing at him WHILE I was taking the picture so no snide messages please!  He put them back on to go in the woods and bury it so none of the animals would get ahold of it.  ..  for the record we do not kill non poisonous snakes in our yard and we can usually tell the difference.  We also don't kill poisonous snakes we see in the woods.  But this one was right by our front door and it was firmly in place.  Our dog and cat were actually both flanking it.  The two of them worked together to keep it in one place-it was like a Disney movie.  We had to remove the animals first before we could deal with the snake.  After we got them moved-we decided it was best to kill it because it was too close to the house and we were not about to try and relocate it or let it slither off and maybe into one of our doors (yes that happens I've found two in our church before!)  I really do't like killing things but I'm more concerned about my family than I am a snake!  Shad was very brave -he shot it then separated it's head with an ax.  I can't say I was as brave this time as I've been in the past with snakes LOL









Then the kids could go out and play after we checked the yard out!










Some random horse riding pictures.  Sarah absolutely has found her love!  She would probably ride all day long if she could LOL 

I promise to put up some videos of her walking.  It's improving weekly!









Sam enjoys it too



Sam really likes the "fake horse" because it comes with lots of muscle therapy.  He loves massages and stretches.  The few times we've put Sarah on the fake horse she has had an absolute melt down.  She is never like that but she was so not happy.  




Sam is learning to use a cup and he loves black coffee.  My strange little boy.  He kept wanting to try Jon's so Jon gave him some despite my protests and he loves it!  Black no sugar!!  How funny he is.  We let him have a small cup a day.

He is on a pulse/oxygen machine at night to let us know if he has a bad apnea.  It doesn't pick up the smaller ones.  He has had some severe drops but the alarm generally is enough to bring him out of the deep sleep and take some breathes.  It looks like he will be having his adenoids removed  January 3.  I'm already stressing!
We've decided to try the surgery.  We are not going to do a CPAP machine because of his eyes.  The CPAP delivers oxygen at a high force into the nose.  IF the machine got pointed towards his eye.....which could happen by accident or by him taking it out and looking at it, it could damage his corneal implant.  We are having to weight the benefits and risks on this and it's not easy.   His corneal implant KPRO is just sewed in the eye.  While he has been lucky some folks have had issues with stitches and with the implant becoming dry.  We feel comfortable that we are making the best decision for this situation-we do not want to risk him losing his sight!!!  So after he has surgery he will have another sleep study to see if it's been helped by the adenoid removal.  





Look at Selah's lower feet.  I got her a new attachment rather than leg holders.  I'm so happy with it Her legs are different lengths so we've always had issues with her and it looked so uncomfortable.   This is not the best picture at all of her.  She has been so engaged but she was about to nap.





In October we had Homecoming at our Alma Mater  Southeastern University (where Steve attends) 



A group of us from the 80's! 




It worked out that that weekend was also Steve's 23rd birthday :)  How do we have a boy that old???











Confession-none of our family are sports fans but Steve was the producer for their football program for the last two years.  We enjoyed watching him direct the game.  This is what he loves.  







Our Church



My beautiful girl!!!




Shad has started the process to become a dual enrolled student at our community college!  He is now almost two years ahead in his school.  He has finished 10th grade work except for math.  So he will be starting college the 2nd spring semester!  Currently he does an on line college prep curriculum.  We are excited for him.  If he continues to do good he should have his AA by time he graduates high school!!  He will be doing classes on line.



And speaking of college.....this is a picture of Steve leaving to go back to college after Thanksgiving.  We have a tradition of walking him out and waving-sometimes following him out to the road LOL
Unless something unplanned happens this is the last time he'll leave home as a college student!  He graduates in two weeks!!!  He did it in 7 semesters and saved us and him some money!  Today he just got his cap and gown so it's getting real!







Steve has also officially been offered a GA (graduate assistant) position.  This position will pay for his tuition as he continues on to get his Master's in Human Services!  He will be living with some dear friends of ours so that will help him him tremulously financially.   Through some provision his grandfather made and many grants and scholarships that he worked hard for, our help and his help too he is graduating with just one small loan about $3,000.  We could not be any more happier about that and proud of him!  It's a huge accomplishment for him and for us too LOL  

God has really helped us through various ways throughout his whole education process starting from pre-school on.  We determined waaaay back then that for our family, we chose to never be involved in the public school system  (of course we did some home bound services for our little kids but that was done in our home)  Back when we made that decision I did not have any idea how we would be able to do it and we only had one child LOL  I would have fainted if I knew what was ahead of us!!!!


But we made it, we gave up some things so we could afford to send him to private school (and later on Shad too)   We used to joke that he and then later the other kids are our hobbies   Shad was eligible for a scholarship but Steve was not due to when he was enrolled. But we made it through.  Then after the accident we began to homeschool because of the transportion issues and our various issues that arose.  So his last two years were homeschooled.  Shad went back to school for a few more years then we decided to homeschool him too.  

I'm thankful that God helped us to work things out to keep him (and the others too) in a Christian environment.  Many people will make fun of that and that's fine with me.  It's something we feel strongly about for our family.  Ain't no body else our responsibility but these five kids are and we know what we want for their lives.  

People say you can't always shelter your kids and that's only partly true, on the other hand an adult can handle themselves in situations that a 12 year old can not.  I fear we put young children in adult situations and expect them to have the maturity to handle the situation like an adult.  They don't have the experience an adult has to filter things.   Our kids have experienced so much real life and they've seen so much I've never worried about them being unprepared to deal with life.  

I don't say this to condemn anyone-it's just an encouragement to younger parents.  Truly we can say this has been one of the best parenting decisions we've made.  I don't regret a penny, an extra mile or an extra convenience that our choice caused us.  

"If you send your kids to Caesar for their education, don't be surprised when they come back as Romans".

Thursday, October 18, 2018

Quick check in!

We met with Sam's specialist last week.  After reviewing X-rays we are considering surgery just for his adenoids.   We have another sleep study scheduled for November 1 to see if the Cpap machine will even work for Sam.   Of course there is the issue with Sam's eye.  We have to worry about the mask pushing air into his eye implant and drying out his eye.  We've been working with Sam with just a nose mask.  He's been good about it but it's worrisome to think of him taking it out of his nose at night while we are asleep.  He brings everything up to his eyes.  So we are in a waiting mode right now looking at options.  Of course i hate the idea of an operation given Sam's ability to turn things into a crisis!   But maybe if he has it there's a small chance we won't have to deal with a machine.  Please pray that we make the right decisions for him.  

Selah is in the process of getting a new nurse or two.  We have a base of three nurses who are very loyal and faithful.  They've been with us for years.  They have carried the case between them for years too but we've always tried to find a 4th nurse that fits in.  It just hasn't happened yet.  So we have things up in the air with interviewing and training people.


Our oldest son is home for fall break and some of his friends are joining us so we will have a full house this weekend:)  That's always fun:)



Sarah was featured in an article about horse therapy.  It's so cool to think of her being featured in a news article!! 

Read about Sarah and her horse therapy here





Well just a quick check in! 






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.