Tuesday, July 31, 2018

On Steroids (literally)

Well y'all are all caught up to speed on our family.  We had a great summer.  Shad has already started his home school curriculum.  He is starting 10th grade a year early.  He plans on doing dual enrollment when he finishes this year's work.  He probably will finish by January.  He uses  Acellus..  It's computer based and much more like college classes are today.  The ACE curriculum that his school used and we did for a few years was very repetitive.  He'd have 50 long division problems to do a day and 50 sentences to diagram.  It definitely gave him and Steve a good base but we like this curriculum better.  Plus there is absolutely no way he can be tempted to cheat LOL  You don't move on until you've passed each test.  We monitor computer use like hawks and it's set up so he can only go on the one website (he can thank his older brother for that lol at least we're using that college education for something!)  It makes life easy for me!

In two weeks Steve will be back to college for his FINAL semester!  He's graduating in December, 27 years after his dad graduated also in December 1991.  Time flies!   He's had a great college experience and is probably going to start in January on his Master's.

Sam Sarah and Selah are getting back into more therapies, the summer is almost over!

Time goes so quickly-I often feel like I'm on a roller coaster hanging on for dear life as the days, months and years speed by.  Do you feel like that too?  I can get very melancholy about it if I'm not careful.  Sometimes it hurts to look back at old pictures and videos knowing those days are gone for good.  When I was younger, probably up until the time I had my first child, I was always looking ahead, excited about the future.  After becoming a mom, I wanted to hold onto every stage and treasure it.   But I had a little one who was pushing forward...and then a bunch of little ones....

Now I have to admit the future scares me, realizing there are more days behind me than are ahead of me. Having the responsibility of three children who will need life long care, possibly long after I'm gone is quite sobering.  We have everything in place for them and all legal things done to ensure their future as much as we possibly can but it's still scary.

See I told you I can get melancholy!

So an update on my health.....did I tell y'all they gave me antibiotics AND STEROIDS????  Well I'm not much of a medicine taker, I don't even like to take much Advil and I'll usually just grin and bear it so these steroids are on pretty virgin soil!  Lord am I flying HIGH!!!  I didn't sleep a wink last night and wasn't even sleepy.  This morning I took a hot shower and made myself sleep for about 3 hours but I woke up wide awake!  I've been up all day, cooking and cleaning feeling great, just a little cough, it's 10 pm and I am completely wide awake.  If only I could live on steroids!  That's what I need in my life LOL  Actually usually I'm a bit like a person on steroids anyhow, maybe it's a good thing I can only take it when I'm sick!!!!  I have to say I don't think I've ever gotten so sick so fast!  It was rough and I'm grateful for meds!  But these steroids are the BOMB!  I LOVE energy!  I have 3 more days on it I plan on deep cleaning the house LOL!!!!!

Tomorrow Sam has his appointment with orthopedics to check his tight hamstrings and decide if he has a little scoliosis.  Sam has been diagnosed with a little CP, mainly in his wrists and ankles.  We were lucky it was not worse.  This new problem is worrisome because we don't want him to start having trouble walking!  As it is now he is walking with his knees bent and booty sticking out.  It happened so quickly that we really just noticed it.  That's scary!  We've been racking our minds to remember when we first noticed it and it seems we noticed it on our vacation.  Surely he was doing it before then but I can't remember.  I think it registered but I thought he was just being overly cautious as he walked in new areas.  He's always assumed a bent postilion in unfamiliar areas, but now he is always in that position and his leg doesn't seem to want to flex.  So I'm worried about what we will find out with him.  Luckily we are going to the same doctor who sees Selah (and who did both of her hip operations)  it's easier when you have a good relationship with a specialist!

Then Thursday we have horse back riding in the morning  and Occupational Therapy in the afternoon.  Selah is getting her new wheelchair on Monday, Sarah has horse back riding.  Then Tuesday Selah has an appointment in Orlando with a Nutritionist.  I don't know if you can tell but she's put on a bit of weight and had a huge growth spurt.  She is wearing women's sizes now!  We want to make sure her calorie intake is not too high  Her Gastro was a little concerned.  Personally I love to see the girls grow but we want her to stay healthy.  Then Wednesday Sam and Sarah have an appointment in Orlando with a geneticist.  They've had DNA testing but neither of them have any of the DNA markers associated with Peter's Anomaly.  The Geneticist feels there may be another marker out there so they are going to be tested again with a new kind of test.  I don't' know much about it but I'm sure I'll learn more next week.   NOW you know why I'm loving the Steroid so much!  My life doesn't slow down!  It's a crazy life.  So I'll keep rolling:)


Will the Circle Be unbroken



So I've been banished to my room all day because I have a terrible sinus and double ear infection.  My eyes are literally just rolling tears & if I tip my face I better have a Kleenex to catch the water. Since all my kids except Selah have been sick this summer I'm hoping not to give them back their wonderful present to me!  Even my husband just popped in to get his clothes for work tomorrow and gave me a wave LOL  No one wants to be with me but Sarah and she was the last one sick!  She handled it like a pro- only was sick for a couple of days but boy did she want to love on Mama during that time!  I sure don't want to give it back to her!  It's funny but I've fought this junk for more than a month- I'd have a little sore throat or ear pain so I'd take some Vit C and Advil and it would be gone.  But I just couldn't fight the inevitable after having all these sickos around!  I don't think I've ever been so glad to see a doctor as I was this morning!  She got me on three meds and I am happy!!!  This week was/is all planned out!  Time to get better!


So being in my bedroom all day but not wanting to sleep, I have watched way too many YouTube videos and read way too much on Facebook.  I find myself going back to videos of church services (yes I'm wild like that) that remind me of my childhood in a Pentecostal church.   You know, I saw some foolishness, and some fakeness but I saw plenty of real moves of God.  There was a reverence for the things of God, even though the church folks might be loud and undignified -there was a reverence that I don't see today.


As a disclaimer, I've always been more of an observer than a participate.  But my heart was touched and I believe those childhood/teen/young adult memories are something that has kept my faith strong in spite of many adversities.


 I can remember times of being at a camp meeting-back when I was growing up the "tabernacles" were all Open Air!  That means no air conditioning in the summer time-which is when camp meetings were held!  We went to two different ones each year.  One was held in Wimauma Florida-near Tampa.  It was the BIG one for Florida and held in June.  The other was nearer home in Mayo Florida and held in August.  And that one was right down the road from chicken farms and cow farms....it was fun!


There were wooden seats inside the tabernacle and ceiling fans.  But if you brought your lawn chair you could sit outside and try to catch some breezes-usually all you got were bugs lol.  It was an experience.  One time we were guests of a family friend who was the head of the Church of God in South Caroline, so we went up and stayed on the campground in a trailer.  Their tabernacle was on a mountain (probably a hill but I was young and from Florida it seemed big!)  I will never ever forget sitting there singing an old hymn "Peace Peace Wonderful Peace, coming down from the Father above, sweep over my spirit forever I pray in fathomless billows of love"  I was only 5 or 6 years old and I can remember the song, and looking out in the dusk down the side of the hill at the trees,  and just absolutely knowing God was real and near to me.  Almost 50 years have passed since that day, all the folks I was with are gone, but that assurance is still there in my heart.  It's guided me all my life.  What a legacy!


Also I can remember being at Camp meeting till late at night and people praying around the altars.  There was no time clock, no one was ready to leave.  Sometimes during the service, a message in tongues would be given along with the interruption.  There was hundreds of people there but the whole building would have a solemn hush come over it-you just knew God was speaking.  All those memories made me who I am today- although I'm a mess-I could be a much bigger mess if I didn't have a framework of God in my life.


Let me encourage you to take your kids to church, every week, keep them involved-you will not regret it.  At the time when I was growing up I had absolutely no idea what was really happening as I was dragged to church, Sunday School, Sunday morning worship (no we didn't have "children's church-we weren't wimps LOL) Sunday night service, Wednesday night service, youth group, Girls's programs, REVIVALS (so many) Vacation bible School, and Camp meeting, church camp......I did it all!!!  Honestly I didn't really mind it too much, but I didn't have a choice if I did LOL!!  But something was being imparted to me in my spirit that would take me through life.  Don't ever get too busy for church Mama, don't believe the lie that you don't need the church.  Yes you do!  So do I and so do our kids.


No I know you can't always keep kids from trouble but my husband and I determined early on that our kids would have to get through us to get to the trouble.  And keeping kids in church will give them a rock to stand on even when they may stray some.


Our church doesn't have all those services like I grew up with and I miss it.  And I have to say I worry about my kids not being in church enough.  There is something about immersing yourself in God and the things of God that will get a hold of a person.  I know that's not really popular in this crazy busy world we live in now but it is true.


Ok back to fond memories....the last time I went to the Mayo Tabernacle was to take my grandmother.  She had quit driving out of town at night (she was about 88 years old thank God she had quit driving her little bright blue Nova at night!)   Anyhow a friend of her's Bro TL Lowery was preaching.  Our son Steve was about 2 years old.  The tabernacle was still open and I spent some of the time running around with him but it was sweet.  Now my granny is gone, her friend the preacher is too.....   We went by there a couple years ago when we were camping on the Suwanee River  and I saw that it was now enclosed and air conditioned.  No more smelling the chickens or cows or having bugs fly around you!  I imagine some of the "dancing" I saw was shaking off a bug!



A few years ago, we went down to Wimauma camp meeting.  That tabernacle has been enclosed for some years and was comfortable but I missed it being open.  But that night I sat all the way in the back and was so ministered to by God.  We had been going through alot in our church and with Sam who was still very sickly.  Let me tell you that minister preached right to us about not giving up and trusting God.  I wept the whole time but was so encouraged in my heart.  BTW I'm not a crier either, preachers can't work me up emotionally.  But I know when God is in something and He was in that sermon.  I'm sure we were not the only ones who had been through some fiery trials  but it was a precious time for me.  It did remind me that something can change on the outside doesn't have to mean that the inside has changed.


Most of my earliest memories were in church.  Earlier this year we were in my hometown on a weekend.  Our oldest son was showing his documentary at the town's park that he had done for Perry.  Since we were there over the weekend I got to go to my family's church.  It had been at least 20 years since I'd set foot in there.  Our family sat in my family's pew where we sat every service, on the left side about 4 pews from the back.  The memories overtook me, in my mind's eye I could just see all those folks again.  The church has dwindled down, so many have passed away.  We sang the old songs, we sang "Oh I want to See Him" and I thought of how God had brought me from there as a child and now has given me a family and a ministry.  I thought of how it is a continuous of passing the faith along.  The faith of my family was passed down to me and sown in my life, I had to make the choice to accept it and pass it on to my kids.  I thought my great aunts and granny would be proud that I was there with my kids in church, serving God.  Yes, I cried a bit, in fact I was afraid I might "ugly cry" if I wasn't careful!  But it was very meaningful to me.



I almost forgot to take a picture but I did right before we left.  You know recently we took some pictures of the whole family at church.  for some reason we take pictures at the front of the church and have for years.  Our friend who was taking the photos asked if we wanted to take them somewhere else and it kind of startled me.  I didn't realize how meaningful it was to me to take pictures inside the church.  Anyhow then I started looking at our pictures over the years and so many of them are at church.  But that is where we are dressed up and all together so I guess it makes sense LOL







So I encourage you to make church attendance a regular part of your family's life.  You will not regret it.   My husband was taken to church on a regular basis and he also feels it gave him a foundation.  His church was in no way as entertaining as mine was and I doubt you can hardly find a church today that is like it was LOL   But there's something to be said about taking the time to acknowledge God as a family on at least a weekly basis.



My husband loves that old song made famous by Johnny Cash "Daddy Sang Bass" I think it was written by one of his associates about Cash.  There is another song called "Will the Circle be Unbroken?"  Both songs have the theme of faith knitting our families together throughout eternity











Monday, July 30, 2018

Summer 2018 Part 4 Selah Sam & Sarah

Now for an update on Selah, Sam and Sarah.

Sam and Sarah have been doing horse therapy for several months now.  Sarah goes twice a week but will start going three times a week in September.  Sam goes only once a week but will start going twice a week in September.  Sarah is slowly progressing.  She is getting a more normal gait while she walks with us holding her hand.  She absolutely loves horse back riding.  She is a natural.  Everyone who sees her in the saddle says she rides like a horsewoman!   We have more hope than ever that Sarah will walk at least in familiar areas.

























Our horse therapist is a Physical therapist.  She has been able to determined that due to a small growth spurt Sam's hamstrings are too tight and causing him issues when he walks.  He also may have some scoliosis.  We have a doctor's appointment with orthopedics  on Wednesday for a check up and x-rays.  We had noticed that when he stands, he keeps his knees bent.  This is a new thing that has happened gradually and we hope to fix it before it becomes a huge problem for him.

We did horse therapy the day before we left for vacation, then we got the sad news that both horses the kids ride and another one of our therapists' horses had been hit by lightening and killed.  Unfortunately this happens a lot in our area.  Some friends of ours had this happen a few years ago.  The horses go under a tree and then the tree gets struck and the electricity travels along the ground and kills the horses too.  They have been able to use another horse for therapy.  They are moving to a brand new stable & riding area so we are looking forward to that!

All three little ones also started Occupational Therapy weekly.  We were able to find a company that will come to our home to do it.  We are hoping to add more therapies also.









Sam also loves movies and popcorn!  He liked the Incredibles 2 and Hotel Transylvanian 3.



Sam got a new I-pad and is enjoying it very much.  He loves Baby Bum and ChuChu on YouTube.  Sarah will listen but she doesn't want to hold it.   I think we will start him on Gemini again.  It is a program that helps non verbal kids learn to speak.   We tried it for a few months a couple of years ago but it seemed to annoy him.  Now he's older and more used to electronics-maybe it will help him.

We are able to fund all these things with the Gardiner Special Needs Scholarship.  It is a Florida program for special needs kids who are homeschooled.  The OT & any medical equipment  is through our insurance.  I'm thankful for programs that help us to do things for our kids.



Selah is doing great!  We have FIVE nurses now!  For several years our three nurses covered her shifts but now we have two more who live close.  It's making things so much easier.  Selah has had most of her specialists appointments and everything is perfect.  She just got a beautiful new stander and is getting a new wheelchair next week.  She also is getting a new mattress and gel pad for her bed.  Earlier this year she got new hand and feet braces.  She also has a new sling for her lift coming.  She had a growth spurt and needed all new things  Selah is doing great and very awake and aware of everything.  We ae so grateful for her health and her comfort.



We are having an awful issue with our parking area as we have had rain daily for the past three weeks.  We paid to have a dump truck of rock brought in and then had to have another 2,000 pounds brought in for the end of the driveway.  2,000 pounds is not as much as you would think it is believe me!   As I type it is pouring again.....  We've have several people stuck in the mud.  One hysterical story on me.....  Steve's roomate came by and got stuck.  He's a country boy- didn't need me to call AAA.  He and Steve were going to push his car while I gave it gas.  No problem right???  So it's pouring rain and I'm in the car giving it gas, they are pushing it so hard but it just won't move..... then someone says "Do you have it in reverse???"  Well I did then....LOL  they laughed about their workout trying to push a stuck car in Park!!!!  LOL  That'll probably be a story told at my funeral!  We all got a good laugh out of it!

Well my bunch have all been a bit sick over the summer besides Selah.  Steve & Shad had "it" worse and several times.   It seems to have finally caught up with me.  Saturday afternoon I started getting sick- every hour I felt worse.  I finally went to Urgent Care today to find out I have a double ear infection and a sinus infection!  GEEZ!  Ain't no body go time for that!  Especially not me!!!   I'm on three pills-normally I avoid meds as much as possible but this time I'm gladly taking them!!!  Usually I can take a hot shower, drink some hot tea and take some vitamin C and beat it but not this one.  It has kicked my butt!  I'm so thankful for the meds that gave me and am hoping to feel better soon!!




Sunday, July 29, 2018

Summer 2018 Part 3 Shad's travels

Shad had a summer to remember!  In May he went with the Peninsular Florida District of the Assembly of God's youth department to an outreach that is held yearly in Miami.  Ironically I went on the first outreach held back in the 80's.  I was college aged!  He is only 14 years old.  He rode with another youth group and when I dropped him off, my stomach dropped everyone was old and so much bigger.  He was the youngest to go but he was so ready to do it! 

They stayed in a church's gym and did many outreaches in conjunction with the Assembly of God churches in the area.  He literally went from sun up to way after dark and he loved it!  They gave out food daily, did skits, sang and invited folks to local churches where the folks can find spiritual and practical help all year long.  













































Just a few days after he got home from Miami we headed out for NY and Canada!  Then the Monday after we got back from our trip he headed out for a week of camp with our church kids.  The picture below is of him after he got back.  He was telling us all about camp then he crashed!!!




 Then the next week he headed for El Salvador with the Pen Fl District youth.  If watching him leave for Miami was hard..... watching him leave for El Salvador was much harder!!!  Again he was the youngest not traveling with family and so little looking,  They left at an ungodly hour of 4 am so Steve and I got a hotel room right by the airport so we could sleep then take him and go back to sleep.  The night before we walked around Disney Springs and took him to a Red Lobster.   We just found out that he needed to take 250 small toys & candy  the day before he left.  Thankfully my friend who runs a thrift store had more than that for him of clean unused toys.  He was so happy! 

We had fun packing those!!!!
















Leaving from Orlando.  Yes I almost cried!  There was some confusion at the gate, I'd been watching some bags and I thought he had headed through security without saying goodbye!



They worked with King's Castle which is an Assembly of God program that works with all the local churches.  It provides camp for the locals and respite time for missionaries.  Shad met some missionaries who had had to flee Venezuela because of the issues going on there.
He dressed as a clown, did skits, handed out toys, went to local schools (all still in session - they have a different schedule than we do)  they were able to reach out to the red light district and to many brothels where there were prostitutes as young or younger than they were.  They were able to share with them about ministries that could help them get away and find safety.  It was a very eye opening experience for Shad that was sobering, seeing such great need.



































































Going on a mission trip may not changed the whole world but it can change the person who goes on it.  It can make hearts more tender and giving.  It can help a teen realize how much they have and to be thankful for it.  And hopefully it will teach that person to be open handed to do for others whether it is at home or abroad   On this trip Shad got baptized in the Pacific Ocean.  That was an experience for him.  He had always wanted to be baptized in the ocean.  This was very meaningful to him.   

Shad had a fantastic summer and now he will be starting back homeschool early.  He is a year ahead and hopes to finish 10th grade by December, then he can apply to do dual enrollment with our local college.  .  

Saturday, July 28, 2018

Summer 2018 Part 2 NY and Canada

This was our 11th year of going up to NY for Sam's annual eye check up.  In 2007 Sam had corneal implants or the Boston Kpro put in his eyes in placed of his rejected corneas.  He was born with Peter's Anomaly an eye condition that affects primarily the corneas.  He had received corneal transplants when he was an infant in 2004 but they failed and his corneas had clouded up again.  Our original doctors in Miami felt it was not a good idea to do further transplants and hesitantly told us of Dr James Aquevella who perfected the artificial cornea.  We are so glad we chose the Kpro for Sam.  It has worked wonderfully in his good eye.  He had some issues in his left eye but we were expecting that it might not work.

So once again we  drove up and I have to admit I was dreading the trip this year.  Usually I don't feel like that till we are on the way home but this year I started with it.  Some of the dread I think comes from going to Rochester NY where we had to deal with the memories of Selah's accident.  It's hard to even look at the Erie Canal for me.  But I fight those feelings.  So off we headed....









Our first stop was Rochester to visit Dr A.  Sam had a wonderful report and cooperated in all his testing so he did not need to stay and go into surgery for an exam under anesthesia.  His cornea looked great.  His pressures were perfect.  We got to give all the staff a hug and thank our beloved Dr A again!








Then we had an extra two days to spend in Niagara Falls!  We stayed on the Canadian side for the first time.




Yes it was cold for us Florida people!








This never gets old!











Funny bird




Outside our hotel









We did something new and went to Ft George north of the Falls.  It was an absolutely beautiful day.







Steve an his camera








My happy girl






















After we NF we went about 5 hours north to Sturgeon Bay a national camp ground.  For years we had talked about doing this and thought we should do it this year since we still have Steve with us for the summer.  The hardest part of the trip was the traffic around Toronto.  It made NYC look like a parking lot.  I've been all over the world in some crazy places and I've never seen such aggressive traffic.  During the ride I wanted to cry it was so bad but I didn't want to be a wuss or distract Steve who was driving.  We had no idea how bad the traffic was going to be.  Since then we learned that the Toronto area is considered North America's worst traffic spot!  I can attest to that!!!!



We were glad to get to our quiet campground!








Our cabin.  I hate to admit it but it was not very comfortable.  We have done cabin camping in Florida and were a bit spoiled.




Shad and his camera





We also went further north to Gundry Lake park  it was breath taking.















 Yes we got matching shirts!




















Sam loving on daddy for giving his snacks



We also went to Killbear Provincial Park



It was interesting but a bit difficult for me with the little kids.  The bugs were horrible and remember I am a Florida girl and I know bugs LOL  We felt like we could not hardly have the little kids out.  We literally parked right next to the door and then rushed the kids out.  We drove them around to all the parks but didn't really take them out of the van.  One day there a good breeze and we were able to be out more.  I didn't even walk much because i was getting eaten up.  Those bugs sneered at our bug spray!  It didn't faze them a bit.  

With cabin camping I cooked and cleaned and did it over again the next day.  It was not much of a vacation for me.   But everyone else had a good time.  My husband doesn't seem to attract bugs as bad as I do so he took really long walks.  .  Of course the boys didn't mind much.  They did some fun things including kayaking on the bay during a tornado warning!  (we did not know about the warning!!!!)  Steve called me from the bay and said that water was coming over his kayak and he was about a mile out.....  Good Lord I was worried.  Thankfully they made it back and then we learned of the weather advisory!  It got much worse and we lost power for hours!   Steve had downloaded the classic movie The Shining on his computer so we watched that while the storm howled LOL!!!!!!

One night we were so cold we turned down our window unit and immediately mosquitoes began flooding our cabin!   We had kept the unit on because we needed some fresh air and the windows didn't have screens in them.  So we were up for an hour killing mosquitoes.  Poor Sarah got bit up so badly and she scratched the dickens out of herself.   She still has slight scars from them.

Despite it all both Sam and Sarah seemed quite happy except for the bugs.  They liked the smallness of the cabin and like riding in the van places.  They both did so good.  They are easy going when it comes to traveling.   


I'm really glad despite the difficulties and challenges that we went up into Canada.  It was interesting and some spots were so beautiful.  Next year we are planning for Jon to fly up with Sam for a quick doctor visit and then the fam is going to the beach for a week!!!!!!!!  THAT is my kind of vacation!  I have to admit we don't do many relaxing vacations.  We really want our kids to see the world.  It changes a person to get out of their environment and go new places   Growing up I had little opportunity to do anything or go anywhere so vacations have always been important to me.  We have always tried to do interesting things with the kids.

Next Blog will feature Shad and all his travels this summer.  He has been a busy young man!!