Thursday, June 1, 2023

Family Update

 Y'all I am the worst blogger!  Thanks to all who message me!


Soooooo.....Sam finally has has recovered!  He came home after a total of 16 days in the hospital.  It was exhausting.  We are monitoring him closely!  I'm out of the boot YAY!  My foot seems to have recovered for the most part although I get twinges when i do too much.  One night I had to ice my foot.  For Christmas Jon bought me these wonderful socks with ice packs in them.  They were one of my favorite gifts!!!


Shad bought a new car!


And this!  Not a thrilled mom!



But he is cute




Mother's Day!















OH my goodness Mother's day 1996




Jon and I ran away for another cruise.  That's our one get away.  We don't have  'date night" and even when we do go out occasionally it's not the same knowing we have to go home and get back to work!  A cruise gets us away  and it's cheaper than getting a hotel at the beach and going out to eat IF you are careful.  I'm planning on writing a blog soon giving our tips


This time we went to Jamaica, Cayman Islands with a stop in Key West



Key West.  I didn't do much lol I went to CVS and walked around for a minute  It was soooo hot


Dress Up night




AWWWWWWW one of my favorite places to be- somewhere south of Cuba headed East


Jamaica 





SkyLift


Mystic Mountain




Dunn River Falls



Hell-Cayman Islands





Even Hell had a message



Cayman Island




Turtle Sanctuary 









Last night 




Our son and daughter in law worked the National Religious Broadcaster's yearly convention and we got tickets to a meet & greet with Donald Trump Jr.  That was a lot of fun He is really a good speaker.







Steve & Nichole working



Sarah and Sam got accepted into the St Joe Complex Care Clinic.  The clinic has hired a doctor to care for older teens and young adults.  Sarah was the first to go in last week.  We took her to Olive Garden to celebrate afterwards.  She loves OG and can eat pasta fagioli soup which they will graciously blend for us.



love this picture with Shad and his girlfriend!  Aren't they cute????


Selah is doing great  Today I went and stayed with her for awhile and Jon is going tomorrow after we finish Sam's first appointment at the new clinic.  Please keep her in your prayers.  It's hard to not have her at home but I'm so happy with our group home.  It has such a great reputation with the medical community.  


Hope you all have a wonderful summer and I'll try and update more often



Monday, April 24, 2023

This too shall pass

 Sam ended up coming home Thursday unfortunately Jon had to take him back Saturday as he was throwing up.  He was admitted and we were told he had another obstruction in the small bowel.  There was alot of talk of different thing over the weekend but they did work with Sam  with alot of enemas and relieved the blockage.  Having a blockage that high up can't be solved by emamas but it took the pressure off everywhere else and things have resolved.  Today they are letting him eat and are going to see how things work in his system.    The plan is just to watch Sam and see if things are truly resolved before he comes home.  The hope is that there is nothing really wrong just a sluggish tummy after major surgery.  








The past few weeks have been a challenging time with Jon's heart procedure my foot surgery and Sam's surgery.  But we are still standing!  


Well I'm sitting alot lol.  Saturday I did way too much trying to help out and slightly injured my foot that just had surgery on it.  That has slowed things down and I'm really trying to pace myself.  Last night my foot was swollen when I took the boot off.  That has never happened before.  After speaking with my sweet doctor I'm going to do less.....really LOL  It's challenging with all our animals and little farm.  Plus our caregiver has been out so I'm taking care of Sarah.  Poor girl has not gotten a bath in days! I keep telling myself this to shall pass....I have lots of experience with that!  

Saturday, April 15, 2023

Sam update

Just a quick update on Sam.


Since the surgery on Tuesday he has not made alot of progress.  He is still dealing with things that Sarah never even dealt with after her surgery.  

He has an NG tube that is constantly running with bile being suctioned out.  It has decreased a little today but he should have been off it by now (Sarah never even had a NG tube)  There has been much bowel sounds.  He did poop a kittle on Thursday with some meds.  Today he was up for 4 hours in the wheelchair.  And he pooped with no meds!  But the doctors don't get as excited about poop as we do since his blockage was high up.  

Thursday was pretty grim I will be honest  was very afraid for Sam.  At that point he had made zero progress and there was talk about him going back in to surgery.  Instead of crying I get mad!  I read his surgical notes and grilled the surgeon.  Bless his heart he was nice.  My fear is a resident/intern being involved and making mistakes.  That happened to me during Steve's 's birth and I have issues to this day from mistakes made.  But I feel that everything was done correctly.  

We began getting him out of bed on Thursday, he has a huge scar probably 7 inches but he doesn't seen to be bothered so much by pain of the incision. Thursday he was only up 30 minutes and wanted to go back to bed.  Today he was up for 4 hours and didn't want to go back to bed. 

Right now our prayer is that he has no more bile to be suctioned.  His output today was about 1100ml- that's alot.  He did poop today with no meds so that was really good.  He has not eaten since last Monday morning and that was only sips of soup.  The doctors aren't as excited about the poop because the blockage was so high up there was obviously poop in his system that could be expelled that has nothing to do with the blockage which wasn't really a blockage caused by poop if that makes sense.  

The gastro doctor wants to do a upper GI to check on things and to see if the blockage is still there.  The surgeon is considering a TPN line  that will give him nutrition.  TPN lines are way above my pay grade and nothing I've ever dealt with nor do I want to!!!~



By this point of Sarah's recovery we were home......


He gets a bed bath daily and his hair washed.  He loves it










yes i push him around some....



light machine




my foot....




These past few weeks have been stressful!  I'm not feeling very spiritual- I'm tired- so much medical drama.  Our caregiver has some medical problems in her family too and I'm worried about having to leave to go home to care for Sarah or bring her here.  I so wish I had not had foot surgery.  It's really made things 100% times harder.  I'm not in pain but I can not drive.  I'm really about a half second from just taking the darn thing off and hoping for the best!  UGH!


Thanks for your prayers and kind words! 








Wednesday, April 12, 2023

Well it's been a few weeks.....

 Well......since the last blog our lives have changed quite a bit. 


March 27 we were sitting on the couch after putting the babies to bed when Jon began rubbing his LEFT arm/shoulder.....well you already know where I'm going don't you......

He headed off to the hospital and in a few hours I got the call that there was Troponin in his blood suggesting something was going on with his heart.  Literally I started shaking so bad my teeth were rattling & I could barely talk.  Luckily our son got home from work and I called our oldest son and his wife.  They got over and we went to the hospital together.  Believe it or not a little 10 year old doctor (just kidding) was trying to tell Jon he just needed to get his shoulder checked out by a neurologist....the only one who got checked out was her!  We got the cardiologist in and of course he thought a heart cath was in order due to Jon's history and we knew there was a small blockage when he had his last heart cath in 2020.  At the time it was deemed to small and hard to get to.  In fact it was mentioned when he had the heart surgery in 2016 but it was too small to justify putting a stent in.  I know that sounds crazy but there is a protocol  to follow.  Anyway he had the heart cath the next day after many delays because of emergencies.  He was the last patient done and they successfully got a stent in.  It was on the LAD "the widowmaker"  Despite it being 90% blocked it was very reassuring to know this was not a "new blockage"  In fact his arteries are all clear and it shows that taking statins have made a huge difference!   I told on it was almost worth having to deal with all this to get that good news.  

So then he came home and all was good.....in fact I scheduled a cruise for us LOL  When he had his first heart attack and surgery I knew how much he wanted to go on a cruise so I told him "if he was a good boy in surgery" I would schedule a cruise for us.  I never wanted to go on one.....oh how that changed  So I scheduled one for us in a couple of months.  He's feeling great!

Then I finally made the appointment to have foot surgery.  I have Haglund's Abnormity and needed it taken care of.  It's caused by too much walking and high heels....Guilty!  So I scheduled it for the day after Easter.  There was no way I was going to wear a boot with my Easter dress!Easter was great~


We came home and had a great meal fun relaxing day.... later that night Sam seemed to throw up a little.  not much we actually thought maybe he intentionally made himself throw up.  He was playing and acting normal so we headed off to bed to be ready for my surgery the next morning.  I was beat because I'd spent the last week preparing for the surgery by laying pavers working on the lawn, cleaning the house and doing some meal prep.  Once during the night his pulse/oxygen machine went off but before I got out off bed it stopped so I did not worry about it.   But the next morning I looked in his room because I heard a noise and he was covered with horrible throw up- undigested food.  It overed him the bed and the wall.  We got him up and I cleaned (and retched) while Jon gave him a shower.... at that point I was questioning having my surgery!  But Jon said it would be ok.....Mr Optimist himself.

Our caregiver came and we told her just to give him some soup and tea a little later And off we went ....my foot surgery was easy peasy just a pain after with the stupid boot.  We got back home later and gave Sam some tea.  He had had a little of the soup but not much.  He couldn't even swallow the tea and threw it up  violently.   At that point we knew he needed to go to the ER.  Jon took him to our local ER hoping it was just a virus.  It wasn't.  He had a blockage in his small intestine.  He got transferred to Arnold Palmer in Orlando where thankfully we had a surgeon who had already seen Sam.   After we found Sarah's  malrotation of the small intestines we had Sam checked for it..... Of course he had it although it was not as crazy as her's was.  He had a regular malrotation which we were told was still serious but at his age we could just keep an eye on it,  Well....it was acting up so he had surgery yesterday.

He had the malrotation moved, the small intestine worked on appendix removed and the red mole on his nose taken off!  Unfortunately his surgery could not be done like Sarah  through a laparoscopy  so he has a huge cut down his belly.  He turned out to be more difficult than Sarah in a different way.  He has a NG tube that's removing all the bile and gook from his small intestines.



right before surgery

after




He recently has gotten obsessed with blankets.  this is so soft

so much bile 



Please keep Sam in your prayers  He has a long recovery ahead  My foot is pain free but I'm wearing a boot and suing a knee scooter a friend lent me  The doctor said if I obey his rules I should make a full recovery! My plans were a long 2 week marathon of tv and books.....welp.....I'm still doing things just like he told me-just not at home.  Jon and I take turns staying in the hospital.  He is staying nights and i'm staying during the day.  Thankful for a Ronald McDonald House right next to the hospital..  I do wish I'd cancelled the surgery but I had no idea how sick Sam was!!!  I'm stuck and need help to do things but at least I can sit with him.  


Honestly I was so overwhelmed by all this and a few other things going on that I just did not see how we could do this but we are making it.  Thanks for your prayers


Thursday, March 23, 2023

2023 Update

 Well let's just recap 2023 thus far LOL 


Jon and I went on 2 cruises...one in January and one in February.  We have travel agents as friends!  (if you want a great travel agent contact OVI at Kay's travel doesn't matter where you live he can help you plan a great vacation tell him I sent you!)


The first we went to to Key West and Nassau with my BFF college roomie and her husband.  It was their first cruise and they had a great time.  















this is a real unfiltered picture from my phone!


We left out of Tampa so that was easy for us.  It was the coldest cruise I've ever been on and the oldest.  We were some of the youngest folks on the cruise.  But we had an absolute blast!  It was in January during a cold snap.  It was even cold in Key West!  I don't think I've ever been there when it was under a 100 degrees!  Then we went to Nassau-we took a tour around the city-that was interesting especially the rum cake factory!  We laughed so much on this trip! 


Then in February we went with a group from my hometown to the Bahamas.  The group included our travel agent.  This time we left out of Cape Canaveral one a huge ship.  It was the biggest one we've ever gone on before with Broadway Shows, a theater, an amazing promenade area filled with shopping and restaurants that were mainly included in our fare.  At first I was a bit overwhelmed being on such a large ship but it was very comfortable and although there were more people it did not seem crowded. We shared the ship with a convention of Anime folks and "furries" that was interesting.  The last night we got into a conversation with a group of them and really enjoyed them.  They were very open and respectful.  I'm glad we didn't let our differences keep us apart!

The ship had Grease the hit broadway show running.  It was a treat!  On this trip we just stopped at Royal Caribbean's Bahamian Island  Coco Cay.  We had gone there years ago but it was rather unremarkable.    It's been updated and is wonderful with trams, lots of shady places, lots of things to do, places to eat, very nice!






We went on the balloon ride-none of my family or friends can believe I did it but it was beautiful to see the island from 450 feet!











There were lots of chickens on the island so I felt right at home.  To be honest I didn't think I'd enjoy the island but it was fantastic.  

Here is our group don't we look like we are from Downton Abbey??



Some folks wonder how we can afford to cruise but we don't go out much in our day to day life.  We don't go on "dates" because it's usually just too complicated. And over the past years we don't even go out to eat that much either.   It's not relaxing to us knowing we have to come home and take care of our day to day duties.  In other words it stresses us out.  Going out to eat with the kids is getting harder as Sarah has a strict diet now on top of having to have her food pureed.   If we were to go out and get home at midnight, then our caregiver would leave and we'd have to be up early in the morning to start the day.  For us we relax at home by reading or watching tv after the kids are in bed. That is great and we do enjoy it but going on cruises are all our date nights at one time LOL  So we go on cruises so we can relax and spend time together. Living in Florida makes it easy and having grown kids means we can usually get dropped off at the terminal so we don't have to pay parking. (and we return the favor to them too)  It doesn't hurt to have a great travel agent who works hard to find us a good deal.  We generally get an inside room which is the cheapest - sometimes less than $100 a day.  Meals are included at no extra charge.  You can't beat a cruise for the price, convenience and over all relaxation!


It's been really good for us as a couple to get away from our extremely complicated life and focus on each other and having fun.  We have so very many responsibilities that our life is filled from the time we wake up till we go to bed.  I know everyone has responsibilities too but we are almost 60!  Yes Jon will be 60 this year!!!  Our responsibilities with our family is like having toddlers in bigger bodies that require total care.  We get so tired physically then Jon has the prison and the church.  We have our older boys too and Selah to watch over at her group home.  It's alot and God gives us the strength to do it but this gives us a time to recharge.  I'd recommend it to everyone!  


We did do a family date night at the Strawberry Festival this year....

The cutest couple 


Sam got his corn



my boys- i had no idea how much they looked alike







Then we went on a night just for Sam.  Both trips were for his birthday present.  He loves the Strawberry Festival.  We rode most of the kid rides and all of the ferris wheels














Jon had more sense than to ride this one.  I got so sick  Sam loved it




Then I even took my friend to it so she could be a Strawberry Queen!


So far this year Sam has NOT had an issue with seasonal depression and has not lost weight!  This is the first year we have not struggled from January -May (of course we still have some time but we've never seen it hit this late)  We use a light box-it must be helping!  Sam has topped the scale at 124!  Last year he was up to 119 but lost to 84 pounds and doctors got very worried.  We did too  A doctor suggested this so I bought a cheap one on Amazon never thinking it would work but it did!!!!!!!




Steve and Nichole are doing great as newlyweds and recently went on a trip out to the Grand Canyon and Utah.   We called it their 3rd honeymoon LOL 


Shad got a promotion at work and has new responsibilities.  We are so proud of him.  He is so focused on his future and has such a great work ethic.  He has his future planned and has goals.  It's really great to see your children grow up and start their adult lives.  When Steve first left for college I did not know how I'd live!  He was the first one out of the nest and it was hard for me.  I loved having all 5 of them at home.  But I chose to embrace their growth and with that I grew too.  Shad still lives at home but he works a crazy schedule and really only is home to sleep. He's like our roommate HAHA  I've learned to treat them as adults and both of them have entered into their adulthood in a way that has made us very proud.  They are both responsible and dependable. Steve has an amazing job as a video producer.  It's crazy to think of my little boys all grown and completely self sufficient.  

Selah is doing great in her group home.  She has been there over a year and we are so grateful for the care she receives.  I was there today and had a wonderful visit with her and her private nurse..  Yes they worked out a way to get her her own nurse! Since she is under 21 she is eligible for a peds nurse.  So she has one during the day and at night.  It's incredible.  

Sarah was in the hospital in February.  She had a blockage.  Since her surgery things don't move as well as we would like them too.  We have her a a regimine now that seems to be working but it's not exactly the most natural meds.  But at this time we have to keep things going and hopefully her system will get back to normal.  

Her new gastrologist did get her and Sam into the St Joe Complex Care Practice.  Originally they were at Arnold Palmer's but that doctor moved.  Our original pediatrician retired and moved too.  It's been a challenging couple of years.  If you don't have older special needs kids you will not believe how hard it is to find healthcare.  We had 2 doctors refuse to take them as patients!  Even our personal gastrologist was uncomfortable with their care because of their complications.  I thank God for the many years we had such a wonderful pediatrician.  Dr W gave me his home cell and back office numbers.  I never took advantage of that trust.  He would call and check on us when things were going on.  I felt like we were a team taking care of them.  He respected my input and I trusted his decisions.  I knew he'd give med the best advice.  Even back then I knew we were blessed but boy do I realize now just how blessed we were with him.  Those kinds of doctors are few and far between.  Thank you Dr W!!!!  I'm hoping things will work out good with this new group/doctor

The day after Easter I'm having foot surgery.  I opted for a lesser surgery on my heel in hopes it will fix my issues.  I only have to be in a boot for 2 weeks....only.....  I'm very tactile defensive myself and am hoping I can handle it!  Just trying it on made me feel stressed.  It goes up to the knee and has air compression in it.  Evidently between all my 10,000 steps and my love of high heels I have what is called Haglund deformity  It's affecting everything now and I get pains down the back of my legs.  It's been a problem for almost 2 years.  I had hoped it would get better but it hasn't.  So wish me luck!  


So that's it in a nutshell.  We have more chickens.  I ended up buying chicks for my broody hen at the end of the year.  My hen was in chicken heaven and took them under her wings immediately.  It actually brought tears to my eyes. (see a couple of posts back)  Now those chicks are bigger than their tiny mama..Another one of my older chicks went broody and is sitting on 9 eggs (from various other chickens too) I had to mark them as some of her sisters will sit almost on top of her and lay their eggs and she'll roll them under her!  So every night I pull the unmarked eggs out from under her!  These eggs should actually hatch on Easter!  Wouldn't that be adorable???

 Good homes were found for the other 3 roosters and now there's just  my one beautiful sweet boy.  He is literally the best rooster I have ever known.  Isn't he gorgeous?  He has 14 girls so he is a happy boy!



Life is good-I'm thankful for my family and for all God has done for us.  There are challenges but He brings us through and helps us out.  Have a good weekend!!