Friday, March 22, 2019

Update on Fam Feb 2019

Well I have been a lazy blogger once again!  So let me catch y'all up on what's been happening here.  Everyone has been well except our oldest son got the real Flu A.  We've all been getting the flu shot for over 15 years and he is only the second one of us to get the flu despite the shot.  Thankfully he was really only felt bad for about 2 days and no one else got it.  (he came home from school for it lol)  It got me motivated to do all my spring cleaning so now you can eat off my floor at least for now.
Sam has some appointments coming up as we follow up on gastrological issues (that are doing good right now)

We are still waiting to see the sleep specialist regarding Sam's sleep apnea.  He is still currently on a pulse/oxygen monitor.  Following Sam's diagnosis I got tested for sleep apnea too as my family often complains about how i snore.  I won the prize too lol.  What a story with that.....  our insurance was going to charge me $305 a month for a machine.  I just laughed and figured I'd have to die because there was just no way we could pay that.  A friend gave me an older machine so I took it in to be set up.  Evidently the whole office was amazed by this older machine-they all examined it out of curiosity.  Unfortunately it could not be set up for me.  The office was so nice to me that they loaned me a machine they had!  I was in tears actually.  People have always been very helpful to us because of our children but this was a huge thing just for me and I was extremely grateful.  Thus said I have attempted to be very disciplined in using the machine.  How many of you use a c-pap?  It can be a bit challenging.  Evidently I have a very small nose but the smallest size is a bit too big for my nose.  I feel like I'm drowning in air at times.  Thankfully I'm one of those rare folks who usually falls asleep as soon as they lay down so that has helped me because I can not talk or move around after I turn the machine on because it bothers me so much even though the pressure is programmed to build up.  My nose is very sore inside and I do have an appointment to go back and maybe have it reprogrammed.  My husband is quite happy he says I do not snore anymore LOL!   This morning about 2 am  I woke up to find I had turned the machine off during the night!!  I have no memory of doing it but I dutifully turned it back on.  Having the machine myself makes me realize there is no earthly way Sam will tolerate a machine like this and it could be extremely dangerous for him.  He would surely bring it to his eye which could be a disaster given the force of the air.  Plus there are too many strings he could and would get tangled in!

Steve is very busy as a Graduate Assistant at SEU while he is working on his Master's.  His classes are on-line thus far so he has been working alot of "gigs"  He currently works for 5 companies doing different type of audio/camera/directing.  Obviously he works for the college weekly as part of his GA position but he also takes jobs with them too.  He works for MABE (an audio/vision company ran by one of my college friends.  They hired him before they realized he was our son!)  He also works for the Detroit Tigers, the Florida Tropics and most recently TBN!  He recently traveled to Alabama to do a conference and worked a large convention in Orlando for TBN called The Send" It's interesting.  When Steve first tarted working jobs we had a serious talk to him about being careful in choosing the companies he worked for as some of his friends had worked some questionable things.  While we have never tried to force our older boys into the ministry we want them to use their skills to glorify God and not to promote anything ungodly.  I'm not sure at the time that we talked that he really thought it was an important conversation.  If anything I think he thought it would limit his work choices.  But to his credit he honored what we asked him and he has more work than he can do!  He often has to rearrange his schedule to get all his jobs done!  Now I think he sees how faithful God can be!!!

Shad is working at a local restaurant doing a great job as a busboy.  He entertains the folks and gets tips all the time.  The owner told me Shad is the best hire he's ever had.  That's always good to know cause you know no kid works like that at home LOL  We are hoping all his paperwork gets in by the next quarter so he can start college in the dual enrolled program.    He has now finshed 10th grade work (a year and half early)

Sarah continues horse back therapy and is more an more independent.  We've taken last week and this week off because of Spring Break and we just needed  a little break but will be back next Monday ready to work hard.  She is also verbalizing more which is great

Selah has been well and doing great.  She has had some of her yearly specialists appointments and they all say she is doing perfect with no issues.  Every doctor seems to be amazes at how healthy she is which makes us happy!







The country makes me happy.  It's spring time in Florida






My potato garden




our guard dog




our neighborhood pigs.  She has 12 babies




herb and lettuce garden












celery




back porch



 my favorite couple on the front porch




the guard dog lol








We were out in the woods near the Hillsborough River and Dead River on a quiet Sunday afternoon





 we just spotted some deer-we think they were spooked by something.  We kept seeing deer all afternoon running.




Gorgeous


Right after I took the above picture we saw a Florida Panther about 100 feet in front of us.  I had never seen one in the wild before but Jon has before.  I reported it Florida  Game and Wildlife and they scoffed at our sighting saying most sightings are south of us.   But we saw it and it walked very unhurried across the road.  I was in awe and to be honest a bit afraid.  I didn't even think to take a picture plus it had gotten darker but we could see it and it's long tail.  My great aunt (who raised me ) was born in 1899 in north Florida out in the woods  She had horror stories of Florida panthers so all I could do was think of the stories she told me of them killing people as we walked  rushed to get to our car! We had to cross where it had crossed so I was keeping a close eye out!





Ok back to the family  Sam Sarah and Selah get the Gardiner Scholarship for homeschooled disabled children in Florida.  It's an incredible tax credit funded program.  It pays for their horse therapy and lots of equipment.  Here's some of our equipment

















Isn't she beautiful?



















Sam still prefers the fake horse  Sam turned 15!!!!!


our bunch!


Tuesday, January 22, 2019

A Day in my Real Life

Last Thursday will be one for the book....

To start off we had Horse Therapy.  That means getting the kids up and dressed and fed and out of the house by 9 am.  It's not too bad but it takes a bit of effort.  It's almost an hour drive there then about two hours there and then an hour drive home.  Well I was dying for a drink so we stopped for a Big Gulp!  It was a good one.....

As we are driving down the road, I notice the tire light was on..... then Shad said he thought he heard a pop as we were leaving the convenience store...   I stop at another convenience store-this time to check the air pressure- only 15 pounds!!  We fill the tire up and head for Walmart.  I'm praying that the tire doesn't go flat on us and leave us on the side of the road. 

We make it to Walmart.  I called Jon to meet us because Shad had to go to work  He comes and picks him up.   The nice man fixing my car said it would only be a few minutes so I decided to stay with the kids.  Well it took a bit longer than a few minutes.  We tried sitting in the automotive waiting area but it was small and Sam kept lightly touching an older lady who was sitting by us.  She did not like it.  So I thought I'd put them in buggies and walk them.  Thankfully our respite care worker was with me or I would have never gotten them into the buggies 





See those Big Gulps.... they cost alot of money!









Of course I had to get a new tire and had no warranty left on that particular tire.  So while we were waiting, I walked through the toy section  It made me think I seldom take the kids with me to the store.  With Sam I'm paranoid about germs and with both of them, particularly Sarah people stare at her too much. I'm not an anti Walmart person but I've had some of my worst moments in Walmart with people staring at my kids.  It's not good for me-I'm afraid one day I will really get into it with someone.  When people stare at my kids, I usually get a bit obnoxious.  Other people say to use such moments as a 'teaching moment ' for the folks who stare- I do - I teach them NOT to stare-believe me they remember my "teaching moments"   So in light of the fact it's not a good thing for a pastor's wife to end up in jail I just don't take the kids there.  Believe me they don't care!  It's probably been a year or more since they went with me to a store. 

Anyhow I handed Sam a toy as you can see him holding.  I've done that before, no biggie.....until I tried to take it back!  Sam decided he liked it!!!!  It was so funny and so good developmentally that he understands when something is taken away.  I almost bought it for him UNTIL he took one of those expensive Big Gulps and smashed it.... yep.... I had to clean it up.  He did not get that toy!! 
Sarah only likes certain types of toys so she pushed away everything I handed her. 

Anyway my cheap little Big Gulps cost me alot that day! 

We finally got home around 3 pm.  I gave them a late lunch and baths.  That's another thing I'm very particular about how they look when we go out in public.  I've always been about all my kids but for my little ones, they are completely dependent on us to help them be clean and presentable.  They had helmet hair, Sarah had horse poop on a shoe....they looked pretty grubby! 

That afternoon, Sam kept gagging himself.  He would put his hand in his mouth, he even stuck his straw down his throat.  Years ago he swallowed something tiny so I started thinking he'd swallowed something.  By that evening I was convinced something was wrong so I took him to the ER.  Jon stayed with Sarah and Shad came with me. 

So with Sam's immunity issues (never got a real diagnosis but we all know to be super careful) I didn't want to take him into the ER.  So I went in and filled out the paperwork.  The staff was very obliging.  Then I went out to wait with Sam.  When he was called for triage, he began throwing up terribly so I figured he probably was sick and was trying to tell us.  The staff were so kind to us, they didn't want us to wait outside, it was cool but quite comfortable, so they found us a private area to wiat until we went back.   I couldn't get over the kindness of our local hospital.  But as they were taking us back to the small private room, I saw the sign on the outside said Bereavement Room!  I literally balked and came to a dead (no pun intended) stop! Honestly I had rather wait outside but they were so kind and I felt it would be rude.  So we sat down and waited in there. 

Other than being in the Bereavement room It was one of those rare amazing ER visits where you get the best doctor and nurse and staff in the world.  The doctor did X-ray him and saw nothing.  Sam was so good, the nurse did an IV and he just sat there.  She looked at me very doubtfully when I told her he'd let her do it.  Afterwards she was full of praise, she said he was her best patient of the night including grown ups!!!  So it was just a little fluke I guess.  He has basically seemed fine every since.  Maybe that's his new way to tell us his tummy hurts.  Although he will gag himself if he gets mad so it's hard to tell!

That was a long day!!!

Sam did have surgery scheduled to have his adenoids removed to see if it would help his apneas.  After discussing it with the specialist we have decided to see yet another doctor first.  The ENT didn't think it would help enough to risk a surgery and we did not have a peace about it.  He is on a pulse/ox machine at night that alarms if his oxygen level or pulse go too low.  A few nights ago he had a really bad time.  His heart rate kept dipping into the 40's for about an hour.  We just kept waking him up and re positioning him.  The ENT actually talked about doing a trach on Sam in order to put him on oxygen.  I don't know what to think about that!  I'm not even sure why she'd say that- his oxygen levels are great except for when he is asleep and then they can go in the low 80's with the apneas
There is alot of concern about him being on a CPAP machine because if he took it out of his nose and put it up t his eye, he could literally tear out the cornea implant because of the high rate of oxygen flow.  Sam puts everything up to his eye.  So we have to figure out what to do! 




We had some family time last weekend-got together and went out to eat. 



 Jon and his brothers and Shad:)









Steve is dating the sweetest girl!  We all love her and think she is a Keeper! 




Last weekend Shad went to the annual PK (preacher's kids) retreat.  He had a great time.  They stayed in Orlando and went to Universal one day.    He has a group of friends that are PKs too.  They are 4 other boys- 2 sets of brothers.  One set lives in the northern part of our state and the other lives in near Miami.  He gets to see these guys for all the activities in our district.  They go to PK , youth convention, youth camp and missions trips together.  It's really neat for him to have these guys that can relate to him. 

Today was a busy day for me.  Tomorrow looks even busier.  Sam and Sarah have Occupational therapy and Speech therapy.  Thankfully it's at home.  Then Sam has a fitting for gloves.  Occasionally he has to wear gloves on his hands/lower arms because he will bite himself.  He'd done so good for so long but the other day I had to put them on him.  He actually welcomes them and calms right down.  But it had been so long they were too small for him!  I just ordered him some "chewerly" it's wearable bracelets and necklaces that he can chew on if he needs to.  Sarah doesn't do it.  Selah did some before the accident.  We will see if he will use them. 

We have had a little "winter" her in Florida but it's supposed to warm back up.  It's been great.  The kids were out today for several hours on the swings. 

Hope you are having a good week and no crazy days!


Wednesday, January 16, 2019

Happy New Year!

Well I hope everyone had a Merry Christmas and a Happy New Year!  December was a whirlwind for me with everything going on and I have to admit I am glad the holidays are over.  Just call me Scrooge but I like things back to normal. 


Here are some pictures from Christmas and New Years

Look at Sarah standing!




We took some pictures before church during music practice. 
















The weather was not good enough for Selah to be at our Christmas Eve service




New Christmas PJ's on Christmas Eve






Selah with some of her Christmas presents





Steve & Shad Christmas morning



Sam and Daddy



Sarah with new toys





New Year's Eve service and Selah came in her new gold dress








People probably wonder why we always take pictures at church.  One reason is it's such a part of our life and the other reason is everyone is together and dressed nice LOL









To be honest Sam enjoys the "fake horse" more.  His issues are very different than Sarah as he has CP and stiffness.  They work with his on stretching exercises. 



Always trying to get his legs straight


Sarah petting her horse! I hope you can get it to play





Steve has started his Master's program and is working as a Graduate Assistant.  Everything is going good but he's still a bit nervous about the classes he is taking.  He is doing a lot of writing.  Shad will be starting college in the second spring semester in March.  He is finishing  10th grade work on line now. 

My husband is starting his 22nd year as a chaplain and has also become what is called a home missionary in our denomination.  All it means for him is increased paperwork but more access to curriculum and things for the inmates that is paid for by our denomination.  We were appointed as home missionaries in the 1990's when we worked in the inner city of NYC. It was not my more favorite memory.....I'll leave it at that LOL

Moving on...I've got a new goal of 11,000 steps a day.  So far I've been on track- most days I do more than 11,000 but some days I don't -so far it's evened out LOL   The idea is if a person does 11,000 steps a year- it's basically 2019 miles.  I love things like that:)  I've also discovered skinny jeans.... that's a story in itself but how did all my friends know about skinny jeans but me?  I bought a few pairs and gave away all my old regular jeans.  They are like magic jeans :) :) :)   I was testifying to all my friends and they were all like "yeah we know"...They knew but didn't tell me????   Then I tried to remember the last time I'd bought jeans and it was 6 years ago when we were stuck in NY for all those months after the accident.   I'm more a skort/shorts type of girl.   I live in Florida-I seldom wear long pants!!!  But now I'm prepared which is a good thing because it seems like our two weeks of regular winter is happening now!  But the skinny jeans can only work so much magic!  I did buy Jon a couple of pairs for Christmas. But he's an old Levi's boy and was not too thrilled with them. 


Well I hope your year is off to a good start.  New Years are a fresh start for me (I also like Mondays-I'm a freak what can I say?)  But as I get older new years are also frightening for me because we don't know what the year may bring.  I guess I've lived through enough now to have some fear of the future.  At the end of last year, I felt some anxiety about welcoming in a new year but there's nothing I can do about it except trust the Lord who has brought us through all the other years to bring us through this year safely.   

Thursday, December 20, 2018

Graduation 2018



HE DID IT!!!!!



I love this shot!  It's on the football field-Steve produced the football games for the last two years. 



this was from the weekend before at his roommate's wedding in north Florida. 





Nick and Steve- he was a great roommate for Steve.  Both pastor's sons but they didn't get into trouble (or at least not too much lol)  God bless him and his new wife!




It begins....





Diploma in hand!




Leaving the building














Steve's aunt and uncle were able to come too



Another one of  Steve's suite mates.  Pablo is student class president and I expect to vote for him as president of the US one day lol! 














Graduation was held at Victory Church.  Ironically this is where Steve started preschool and attended their private school up to 3rd grade.  He graduated from kindergarten here too:) 


We had a graduation party Sunday

































As you can imagine we are just a little proud:)   It was an incredible feeling sitting in the graduation service and reflecting on everything.  Twenty seven  Decembers ago Jon graduated from Southeastern in a small ceremony at the chapel on campus.  I had to go look for this picture. 





In April it will be 30 years since I graduated from college.  It doesn't seem real to me!  We are so glad that Steve was able to have a similar experience as we did going to Southeastern.  Of course back in our day (lol) things were way more strict.  Steve made friends that will be life long friends just as we did.  College is a great experience.   

In January Steve will begin as a Graduate Assistant working on campus in the studio and working on his Master's in Human Services.  The advantage to him being a GA is he gets more hands on experience and his tuition for his MA is paid!  He'll be living with some pastor friends of ours so that will be a huge help also.  





In other news guess who started his first job?





Shad has wanted to work at our favorite home town restaurant for years.  He enjoys it and I love getting pictures when friends go in and see him working.  He is a busboy and helps the wait staff out too  He is saving money for his mission trips this summer.  All the reports we get have been extremely positive 




Sarah got caught smiling.  she smiles all the time until I try and take a picture!!!




Tomorrow she turns 12!  I love my girl so much!!!!