Tuesday, December 30, 2014

The 21 day No Junk Food challenge!

So I saw this and put it on my wall....many of my friends want to do this.  We "voted" to begin it January 2nd so if you'd like to join us, we have an open group on FB
I'm determined to start the New Year off right.  I'm usually pretty good about exercising but my eating habits are not as good.  We all eat good IF we stay home....but my problem is eating out.  I've gotten better but it is always a challenge. 
We are 'rejoining" the Y.  I LOVE the classes but find it hard to always be able to go but I'm going to try harder.  Yoga is my favorite one and the outside pool aerobatics is great too. 
Anyhow this is my New Year's resolution. 
Another one is to read the Bible through this year with my kids
We are getting ready to celebrate New Years!  Having some friends over for New Year's Eve and some other ones for New Year's day.  Jon gets a 4 day weekend so we are happy.  The boys helped me to really clean the house today so they are on the "good" list for sure:) 

Sunday, December 28, 2014


Yes we got home on Friday!  Woohoo!

We spent Friday and Saturday unpacking, resting and for me, grocery shopping.  This trip seemed so long and hard for us.  Thank you all for your prayers for safety and for our emotions.  We did better than I expected.

Saturday I did a big shopping trip and began cooking.  For yesterday I made Taco lasagna, yellow rice and black beans.  I also did a pork roast and mac&cheese for today along with real mashed potatoes.  I have a meatloaf ready to cook for tomorrow and baked ziti cooked and in the freezer for Tuesday.  It felt good to cook and have "real" food!  I also made 3 quarts of sweet tea!  LOL!  My reaction to being "up north" 

Selah did really good while we were gone and I'm so thankful for our nurses caring for her.  It was hard to leave her during the holidays but we really feel like we didn't have a real Christmas either.  It's hard to be in the Christmas spirit when you are driving 1,200 miles!  Although I guess to some small degree I can imagine how Mary and Joseph must have felt!!!!

Today was church.....I would have stayed home if I weren't the pastor's wife.  My heart just felt heavy and I didn't feel like having to talk to anyone or be "on".   Wouldn't you know it, our music minister sang a song that just broke me.  "I Must Tell Jesus"..... this is a very old song, the writer has been dead almost 100 years but the truth still rings clear.  My trials that I bear right now is worrying about my children's health.  Selah and now Sarah's and Sam's new issues.  I'm sad but I know the One who can help me bear my sorrow and worry....

I must tell Jesus all of my trials;
I cannot bear these burdens alone;
In my distress He kindly will help me;
He ever loves and cares for His own.

I must tell Jesus! I must tell Jesus!
I cannot bear my burdens alone;
I must tell Jesus! I must tell Jesus!
Jesus can help me, Jesus alone.
I must tell Jesus all of my troubles;
He is a kind, compassionate friend;
If I but ask Him, He will deliver,
Make of my troubles quickly an end.

Tempted and tried, I need a great Savior;
One who can help my burdens to bear;
I must tell Jesus, I must tell Jesus;
He all my cares and sorrows will share.

O how the world to evil allures me!
O how my heart is tempted to sin!
I must tell Jesus, and He will help me    
Over the world the victory to win.

The writer Elisha Albright Hoffman explained how this song came to be....

There was a woman to whom God had permitted many visitations of sorrow and affliction. Coming to her home one day, I found her much discouraged. She unburdened her heart, concluding with the question, Brother Hoffman, what shall I do? I quoted from the word, then added, You cannot do better than to take all of your sorrows to Jesus. You must tell Jesus.

For a moment she seemed lost in meditation. Then her eyes lighted as she exclaimed, Yes, I must tell Jesus. As I left her home I had a vision of that joy-illuminated face…and I heard all along my pathway the echo, I must tell Jesus. I must tell Jesus

Thursday, December 25, 2014

Fox News Story!

Adam from WHAM in Rochester did a news story on our family.  Its a lovely piece and really captured a small segment of our daily life as well as told our story nicely.  I love that you can see Sarah standing and playing.


Well we made it from Sutton West Virginia to Savannah Georgia today!  When we first started out there were no cars on the road.  It did get a little more crowed but not too bad.  However.....we could not find ANYTHING open for lunch so we ate from a gas station.  I had peanut butter crackers, a Little Debbie zebra cake and a Pepsi LOL!!!!  Thankfully the kids did eat breakfast before we left the hotel. It's really challenging with Sarah but I had brought some grits packages so I made some up for her for lunch.   But sweet Savannah had a Denny's open and we got something good tonight.


Empty roads in West Virginia

trying to get a picture of the snow on the mountains near the West Virginia/Virginia border
We always love to see this road in Charlotte North Carolina!!

And NO I was not driving!
Denny's saved the Day!


I've always wanted to stay at a Country Inn and Suites, but on road trips we go as far as we can and then we stop.  We've tried a few times to get in a Country Inn & Suites but they'd always been full.  Now I know why!  Huge rooms, clean and this one was only $84!!!   We are quite happy and only about 300 miles from home...so far it's been 998 miles since we left Rochester.....

My plan is to try and find a glaucoma specialist who will follow Sam at home so he can be seen more often.  His corneal implant is very stable and expected to last throughout his lifetime.  However his optic nerve is showing a slight change which indicates his glaucoma pressure is up.   That's not good.  Glaucoma can rob a person of sight as the optic nerve is damaged, it will not repair itself, so it can quietly happen. 

My problem is no one wants to follow a child as complex as Sam who has a primary eye doctor in another state.  Doctors do not like to cooperate with other doctors....sad but TRUE!  I've called every pediatric office in the Central Florida area and they have refused Sam as a patient.  As you can imagine that ticks me off!!!!!   Since he will now sit for an exam so that he does not have to be put under, I may find a doctor who will see him out of curiosity.  Not many doctors see a patient like Sam.  Perhaps I can find a good adult glaucoma specialist....   We did go to the University of Miami Bascom Palmer for years for follow up but there was a big medical mistake made.  We were told years ago that his glaucoma had worsen to the point of needing a shunt.  We rushed him to Rochester and found at that time (5 years ago) that there was no issue at all with his pressure.  After that, I had no confidence in the doctors we were seeing....OH and the doctor's assistant called me as we were literally walking into the Ronald McDonald House and told me off for taking him for a second opinion!!!   Bless her heart is all I will say.....she got quite the earful LOL!  I also called her back and let her know there was no need for the surgery and we would not be coming back there!  I think they were embarrassed that they were wrong. 

People often wonder WHY do we go so far for treatment?  It is because Dr Aquevella is one of the few doctors who work with corneal implants.  We've invested a lot of time and money into insuring that Sam can keep the little bit of sight he has and we don't dare "rock the boat" at this point.  IF I do find someone who will take Sam, it will ONLY be as an observing doctor.  Should there be any questions, we'd take him to NY for any type of intervention. 

When Sam was a little baby we realized we could love him, but the only thing medically we could do to help him was to do the surgeries and be responsible  for his aftercare.  Over the years we figure we have done over 100,000 eye drops.....yep....100,000.  At six years old we were a little over 60,000 so we figure we've far exceeded it now LOL!!!   For a period of about two years, we did 44 eye drops a day and did NOT miss a drop....even if it meant to wake him up to finish the regiment of drops.  Now we only do 9 a day now....that's nothing! 

Well we hope to be home around lunch time!  I can't wait to get home.  This has been a LOOONG trip to me.  I do like the route better than any other one that we've tried over the years.  We try to avoid I-81 in Virginia, it is so busy.  Next week all of the kids are off of school and Jon gets some time off.  I'm going to enjoy being home with them.  

Well hope everyone had a wonderful Christmas.  This Christmas really made me focus on the important things and I'm thankful that we were able to take our little ones up for a check up and know exactly what is going on with them.  Hopefully next Christmas we will be home together but I've really am learning to just get as much enjoyment out of the moment and not wish that things were different when things can't be changed.  I realize I am DOING Life!  It's not a goal to get to, it's the everyday things.....

Good night all!

Wednesday, December 24, 2014

Christmas Eve in Sutton West Virgina....in an empty hotel

Last night one of my best friends from college came by the RMH to visit us.  Charlene and I have been friends for over 29 years.  I'm so glad she lives in the Rochester area, we get to see her every year!  We were laughing last night that seems impossible that we have ADULT children!!!!!  How did that happen?
We want to thank Rochester Ronald McDonald House again for their kindness to our family.  they are so gracious to us and our large family.   The staff and the volunteers are just amazing.  The food was so good during this holiday season.  It was like staying at a 5 star resort:)   Volunteers come in daily and prepare suppers for all the families.  This week some volunteers also came and made breakfasts too.  My kids were very happy!  We just love everyone there, it's like coming home to be there....
So we left about 9 am and hit the road.  We stopped in Morgantown WVA and ate at the Olive Garden there for Sarah's bday, a few days late.  That is her favorite restaurant.  They will puree the soup for her so she had two big bowls and then ice cream for her birthday!
This is her Birthday dress.




Ice cream time!!!!

yes the boys were there!
We drove another hour and a half before we stopped for the night.  We are in a Microtel (one of our favorite hotels to stay in on a long trip- usually clean and cheap for just a few hours sleep)
I changed Sarah into her new pj's
she looks about how I feel!!!
We hope to make it to Columbia SC by tomorrow night but we try not to get too stressed about things because when you travel with these little ones, you have to make sure their needs are met!  That means FOOD!  My kids like food!
On Christmas Eve it's odd to be here on the side of a mountain in a big hotel that is empty....only 9 other rooms are occupied....the parking lot is bare of cars.   The big storm has started and the lights have blinked off....  the rain is coming down, glad we got in before it hit.   This hotel caters to hikers/white water rafters in the summer months but it's empty now, most everyone else is home with their families.  I have to say this is the strangest Christmas we've ever spent but we are together and on our way home to Selah so I have to try and be positive!   I will say I never want to do this again!  Even tho I'm not a big holiday person, this is a real downer to be away from home at this time.  I'm a practical person and I can think of things that way and it helps-    Sam needed to come & Sarah also did too.  We didn't want to wait till January we certainly couldn't chance the storms then and we had to drive to take both of them, otherwise it would be too expensive for us to fly all four of us.    Oh well....we're done and almost 500 miles closer to home than we were last night.....
Hope everyone has a wonderful Christmas and along with myself realize the message of Christ is more than even being at home for the holidays.  The message of Christmas is more than what is happening in my life or your life....it's what happened over 2,000 years ago when a Baby was born who came to save the world....

Monday, December 22, 2014

Good News/Bad News

Sam really did good but had a funny expression for this picture

Dr Aquavella and us

Good news/Bad news....the story of my life it seems.

Sam did so good during his exam that he does NOT have to be put under anesthesia!  This is the first time for him and I never thought it would happen but it did.  Everything looks good except it seems his glaucoma pressure is slightly elevated and we will have to add an addition eye drop twice a day. It is ok.  We used to do 44 eye drops a day so just adding two more is nothing.  All in all the change is small and should be easily controlled.  Otherwise he is doing great!

The bad news, although it was expected, is that Sarah's eye is dying.  It has shrunk significantly and the reason it is blood red is that the eye lid is irritating the eye as it is sagging.  The reason it shrunk is that when the eye dies, it gets smaller.  She seems to have some light perception still.  The only thing we could do is to put a shell on the eye, it would hold up the eye lid but we won't do that till her light perception is gone..  So it's sinking in that I will  have to watch my precious girl go completely blind.  To most of you, she is already blind but to a mom of kids with all kinds of vision issues, she is not "black blind" she sees light, maybe colors, sometimes she puts her face on mine and she looks intently into my face, it's not much compared to "normal" kids but it is to me.  It's not that I didn't know this was coming, Dr Aquvella warned us over two years ago but now it is happening and I'm afraid it will happen fast.  The eye has shrunk so much in the past month that there is an empty space between the side of her eye and her socket. 

Sometimes I just have to wonder WHY I seem to be asked to go through so much heartache?  To watch your child go blind is horrible.  We had to do that with Sam but we were able to fight it and won.  With Sarah there is no hope of any medical intervention.   Please pray that Sarah will get used to this as it happens and she won't be frightened.  Pray that she will feel so much love that her little heart won't be sad.  Again I know she doesn't have much sight to lose but I've seen her enjoy the little sight she has as she pulls a light up toy close or puts her face towards the sun.....my heart is sad....very sad. 

I'm just so glad that she is with us as she faces this.  And as always it's just one more thing to make me look forward to That day when everything will be made new.....

Well we could leave to come home tomorrow but we think we will wait till Wednesday as planned as the roads should have less traffic- who knows.....it's sorta the old saying "six of one, half a dozen of the other"  We are all so tired today.

On the way up,we got a call from Sam's geneticist on Friday. Sam is so unique that they've asked Jon & I to be tested AGAIN. Evidently his DNA is very complex & interesting. He presents 100% clinically as Peter's Anomaly-with his eyes, small size, heart defect...but he doesn't have the markers in his DNA. Now they have an even more advanced DNA test. It's really cool that the scientists at Univ of Wisconsin are studying him so in depth!! Sarah will be tested too.  This is mainly for research purposes.  It's interesting. 

Again thank you all for your prayers......

Sunday, December 21, 2014

Back in Rochester

It's a bit surreal to be back in Rochester with my family.  We drove the same long route to get here this time as we did back in 2012....  As we passed several places we had stopped before at, it invoked painful memories that Selah was not with us.  Tonight I sit in the same room that we lived in for over five months (it's the only room big enough for us)  I've already made up Sam and Sarah's cribs.  The furniture has been turned some so even tho we have one less Clanton with us, one crib has to go in the our large private bath.  Just like 2012.....    And today is Sarah's birthday, she even turned 8 years old just like Selah did in 2012.....   It's a GOOD thing I don't believe in superstation.  Even so.....

Today as we drove into Rochester from the west, we did the big loop at the I-90 and I-390 interchange and I remembered that day, another Sunday, that seems from another life back in 2012 as we entered the city that way.  On that day, I felt like I had "the world by the tail"  We had just adopted the girls in May 2012, we'd had a wonderful adoption experience in Ukraine and made many new friends.  Then we'd come home with our darling girls and had had a wonderful summer, took them on a short vacation to the beach, just fell in love with our girls and enjoyed our life.  I told Jon several times that I'd never been happier in my WHOLE life ......    As we drove into Rochester, on the big turn, there was a double rainbow back in 2012.  I tried to get a quick picture but couldn't' but I felt it was such a happy sign.  We had just got the girls set up for all kinds of therapy and doctor/specialist appointments for the fall and we were bringing Sarah up to see if she was a candidate for the corneal implant like Sam was.....only good things were ahead....  little did I know that in only THREE days my life would never ever be the same.  I'm so glad I did not know the future that day.....

So today we drove in to a cold, cloudy, leaden sky.  It snowed on us off and on since yesterday, just flurries....  The sky reflected how I felt.  There was no blue sky, no rainbow against some thunderclouds....

There is always a sense of "coming home" when we get to Ronald McDonald House....if you add up all the days we've spent here since 2007 when Sam first got the implant...it would total about 8 or 9 months!  In spite of the heartache, we've had some joyful days here too.  How can you compare it?  We first came here and our son received sight....no matter what happened since, we are so thankful for that!

Tomorrow we have a tv interview, several reporters keep in touch with us and one is going to do an interview with us at Flaun Eye Institute & I think even go with us for Sam's appointment with our dear Dr Aquevella.    It's ironic...we were to do a tv interview the day of the accident too.....

Sarah also has an appointment.  Her eye is shirking in the socket and looks bloody.  This started last month and seems to have gotten worse.    There is nothing medically that can be done for her but I want him to follow what is happening so we know what to expect.   Her little bit of light perception does not seem to have changed much but I'm not sure.....

Tuesday, Sam will be put under and his eye examined in great detail.  Sarah may be also, depends on what Dr A thinks. 

I'm just having all kinds of emotions wash over me tonight.  Earlier I gave Sam a bath and I remembered that was the tub I last gave Selah a bath in before......My family is all in the tv room, reading and I'm in here doing my blog

On the way up here, I had a curious dream.  I dreamed I was being chased, pursued by a manic killer.  He got caught for something else but I know he was still after me...  I got furious and got in his face screaming that he couldn't touch me.  I had Jesus to protect me  (in fact in my dream I sounded very Pentecostal!)  Then I told him I had a husband who loved me to protect me....AND I had a .22 and I would blow his A## away if he came after me again .......  LOL  those were my exact words!!!!!!    So I think I had a mixture of Pentecostal and Madea....in my dream!)    It was quite a vivid dream, never dreamed in "cussing" before LOL  So I'm not so sure how spiritual it was but "it is what it is" and I do feel like that was how I was feeling. 

I want to explain....after the accident, I truly thought I could Never EVER happy again.  Well there is happiness and joy in my life now BUT there is a difference.  There is an underlying sadness that never goes away.  It's like the "elephant in the room", it's always there.  There's a place in my heart that will never be whole again until THAT day when we stand before God and all things are made right....  I can be joyful and laughing but a wave of intense sorrow might sweep over me.  I don't always show it but it is always there....

Selah has done fine with her nurses and they all went to church today.  In fact EVERYONE went to church today, seems our church was packed out!  We have a man in our church who works with CMA Christian Motorcycles Association and he preached and some of his friends came.  We are so glad he was able to share the Christmas message with our folks.  We have a UNIQUE church...believe me there is not another one like it...Motorcycle Ministry, prison chaplain and volunteers, large homeschooling families, public school teacher, adoptive families, families with special needs kids (another family and us share one of our nurses)  We have all kinds of folks who all get along and love each other.

Anyhow....thanks for your prayers for this trip and for our emotions too....

Today is Sarah's bday.  I don't feel I could do her life justice tonight but I'll share a Sarah post soon.  She is eight years old today....and was abandoned eight years old today in the delivery room.   I love her like she grew in my belly.  I can't imagine my life without my best little friend who wants me to be with her all day long:)   It amazes me that she was born to someone else and not to us...but God gave her to us.  I hate the years she spent in an orphanage but every day I'm determined to give her so much love that she won't ever remember those days.  People think we are "saints" for adopting her with all her disabilities but it's not like that at all...she is a JEWEL in every way and we are the ones who are honored to have her in our lives.  Jon and I say almost daily, how very precious she is.  If you ever get a chance to spend any time with her, you'd see it.  People are literally amazed at her and I get asked all the time if she always is so happy and she is....  (unless Sam bothers her LOL)   It's almost spiritual how sweet & loving she is although she can't talk.  Sometimes out in public she gets a little stressed and retreats inside herself, with noise around her and confusion.  But that is not her, her sweet little spirit is unbelievable......  Well I said I wouldn't write about her, but I just can't help but express my joy in having her as my daughter!!!!

Some funny pictures from today

Somewhere on I-79 in Pennsylvania
YES I know Shad doesn't have his shoulder strap on!
I noticed it in the picture and woke him up and made him put it right....

yes we have smart phones and GPS BUT I'm OLD school I like a MAP!
No the highlighted area is not the way we took....
We took 79 up
We've been coming ups so many years that we've tried different routes and we think that we've found the best one so we can avoid I-77 --our Nemesis!

In NY on I-90 at a rest stop where you have to walk out over the interstate
Look at Sam, Sarah and Shad's new coats!
Someone blessed us with money to buy them new coats and I FINALLY found some thick ones at JC Penny's last night in West Virginia.  They had such a sale, each jacket was originally $70 and I got them for $25 each!  So I had enough left over to buy Shad a new pair of tennis shoes (you can see them if you look hard enough)  Steve had a jacket but didn't wear it!
So a funny story about the shopping trip last night....
I had on pajama pants and a soft velour shirt.  SOMEHOW I convinced myself it would be ok to run in the store.  It was in a town where I knew no one, right across from our hotel.....
I looked in the mirror in the changing room (yes I tried something on)
and could NOT believe my family let me walk out looking like that....
No make up, my hair was a mess and I had on tight (they didn't feel tight but that's the trouble with waist high mirrors....you do not see everything)
I very meekly bought the coats and got out of there!
I VOW on facebook to never ever go anywhere in pajama pants again!
It does NOT look cute!
AND I put myself BACK on a diet after getting a really good look.....
I've done great today and I'm rejoining the gym when I get home!!!!!!!!!!!!!
Plus this morning I put on make up and did my hair!
I'm not a vain person but that was a REAL eye opening experience for me!
And probably for the other shoppers!
More snow pictures

Well good night all, hope you have a wonderful week as we approach Christmas and thank you for your prayers for us!!!

Friday, December 19, 2014

BIG Catch up...Christmas Play pictures...and we're on the Road!

Well we are on the road!  We made it to Columbia SC and are in a hotel for the night.  FINALLY I can download the Christmas Play pictures.  For some reason the pictures I've loaded lately have been odd....someone who understands computers better than me, might be able to figure it out but I think tonight's will be ok:) 
So to catch up, Sunday morning was our Christmas play...one I wrote & directed with LOTS of help from St Matthew and St Luke and our music pastor Guy!  Basically the kids acted out the Christmas story with the congregation joining in in song with various people leading different songs.   Jon read the scriptures
Our band did "Carol of the Bells"  (Shad played the marimba)  and "Sleigh Ride" also.
So we included everyone in the congregation in the play in one way or another:)
 Our Angel Selah

                                      Shad playing!

 Sarah and Selah were part of the "Heavenly Host"
 My two wise men!!

Sam was VERY thoughtful!

Sam smelled the cologne bottle ( it was a wiseman's gift) and looked as if he were bowing and worshipping:)



My Angel Baby!

Baby Jesus was sent to Sam from a reader, its a Cabbage Patch doll that he loves:)

The cast!!!!






This week just flew by as I tried to get ready to leave and just had a zillion things to do.....this was hard as packing for our trip to Ukraine.  We are Florida folks and even our "winter clothes" are quite thin.  I managed to find a few things and layer up things for them all.  Shad, Sam and Sarah had had such a growth spurt from 2012.  When we were up in NY after the accident, we had to get all winter clothes since we came in August in shorts and left in December in winter clothes!  then last winter, the kids wore the clothes again...but couldn't make it a third season LOL!!!  Anyhow I learned it is VERY hard to find thick clothes in Florida but at least Sam and Shad have plenty of pants now since they mostly live in shorts!
I got a chance to spend the day with one of my best friends on Thursday.  she was at the airport when we came home from Ukraine and took this picture....I'd never seen it before....
Sarah was 5.5 years old and weighed 19 pounds at the doctor's the next morning....this picture blows me away...
Those clothes were 18 months....It was actually a jumper but we added the pants.  She was a BABY!
So we had our Christmas last night.  It was easier to do it at home than to try and bring the presents up as some were things we wouldn't bring with us. 

Sam liked his doggy and it had a light up tummy

Steve got this at the Habitat for Humanity's Restore for $60 from his Christmas money given to him by a friend!
Brand new, the guy who brought it in said the remote didn't work so he was going to buy another one!
LOL we have heard of a Universal Remote.....
Steve is so excited.  He had given away his tv to our church's band yard sale this past summer.  He didn't use it anymore since he didn't have a room.  But soon he'll have a room and a new tv:) 

It's ALL about the light up toys in our home!!!

LOVE that my little girl is FINALLY playing with toys.
Selah had gone to sleep by the time we did presents so I laid her's on her bed. 
Selah has been remarkably alert lately. As always it is so hard as one day she will look at everyone when they speak to her, then other days not seem so aware but over the last week, she has looked at us so much.  I love it
Here are some funny pictures from our day today.....
I looked back after we stopped for brunch at Cracker Barrel....
I think they got drugged....
I did wake Shad up and made him turn around!!!!!!

Later Sam fell asleep....

Please keep us in prayer.  As you can imagine, this is a stressful trip.  It's the first time we've returned as a family to Rochester since the accident.  Also traveling over the holidays is harder than I expected emotionally.  I'm having a lot of anxiety and am quite thankful for my meds that I've not had to touch for months.  I'm not a superstitious person but I' dealing with lots of fears, even the driving makes me have to take some deep breaths...  I hate feeling such a sense of dread.....
Well we are all in bed.  the boys are reading and we have a Christmas choir playing.  It has put Sarah to sleep and Sam is just lying next to Steve rubbing his hands together in his sleepy little way he does. 
Thought I'd leave you with a picture of a neighbor!
we have lots of peacocks in our neighborhood

And no I'm not worried about anyone breaking in our home!  We have nurses there and people staying with Selah!  Plus an alarm system and a big dog....