Sam's cornea is coming out.....Some more pictures of Ukraine and a video

Well Selah had a wonderful night.  She slept through the night BUT Sarah woke up screaming, not sure if she had a bad dream or if she hit her head on her crib.  She tends to wake up during the night and stand up in bed, she usually is singing a happy song, cooing but she is a bit clumsy so if she got her foot tangled or something...I checked her out and didn't see anything but she was screaming bloody murder!  Once I got her calmed down, I went and changed Selah, this was about 4 am and her heart rate was in the 80's:)  That makes us HAPPY! 

Last night Steve mentioned that Sam's eye looked funny like his cornea was coming out....honestly I didn't pay much attention but thought to look today as I was doing eye drops...We don't normally open his "bad" eye, his left eye as it is small, it usually opened only a slit and we drop in his eye drops.  His retina detected in that eye so he is black blind and sees nothing from it.  The reason we put drops in is to make sure he doesn't get an infection that could go to the good eye...  OH MY LORD....this is what I saw....

(this picture was taken with him on my lap and upside down so it doesn't really look quite this bad usually.)

My heart dropped and my blood ran cold!  For real!  I called Dr Aquevella and he told me to bring him in....  Well "bring  him in" means going to NY.  We are working on the details and timing, based on his schedule and our situation.  I'll probably be going by myself with one of my other kids or a friend.   It could be as early as next week or as late as the first week in May.  Sam is not in pain and there is no infection.  He has no sight in the eye.  The thing we worry about is if it came out and ripped the eye and hurt him and then that would also be a way bacteria could get into the eye and cause an infection that could spread to his good eye.   I don't know what they will do, maybe take the eye out altogether.   All I can say is I'm glad that life is short, eternity is long and I have a God who walks with me.  Although he has no sight....this was still a sucker punch in my gut....  Please pray for Sam!

Before I noticed Sam, I went walking with my BFF Kandi:)  We have walked thousands of miles together, really, thousands over the last few years.  We've worn out walking shoes.  We both have 5 kids so this is our stress reliever...you can imagine I may need to start walking about 20 miles a day.  We actually usually walk 3-5 miles a day.  Obviously, I haven't been walking for awhile and I'm glad to be back to it.  Our local hospital has a 1/2 mile cardiac walking path that has built in hills.  This morning we walked it 6 times...there have been times coming up the big hill, that we were very glad to be near the ER LOL

 

We have 10 kids between the two of us  ( and we each only have one husband LOL)

 

 

My usual morning walk

 

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From a year ago today.....

 

We left our sleeping boys on the couch to go see our girls.  Look at their sweet heads!

 

Pigeons outside and all over the place!

 

Our 'street"

 

 

 

these are fuel lines connected to the apartment buildings.  We saw them all over the place, instead of in the ground, they were in the air!

 

our neighborhood dog couple.  they sat outside the first apartment door and barked at everyone.

 

Like the little old lady:)

 

She posed for me with the dog, who was growling LOL

 

 

the boys looking out at us waiting for our driver

 

the "Christmas" trees at the front of the institution

 

Sarah up! 

 

 

Here we got a swiss roll at the store!

 

 

 

I made rice with chicken in it

 

Here is a video of Selah and Sarah

yes this is a new day...Selah has on the same dress...

while Sarah is sporting a boy's look

 

Please keep our family in your prayers.....

 

 

I'm going to serve God......what about You?

Selah had another GREAT night!  Thanks for the prayers:)  We only got up with her once:)   Tonight she is already asleep and her heart rate is in the 60's & 70's which is completely normal for a 8 year old girl!!! I don't think I've ever seen her heart rate so low!!!!!   She had PT today.  I am so thankful for Chris who comes into our home and works with our kids.  It makes things easier and so much more relaxing for the kids, especially Selah.  We had her up most of the day in the new wheelchair and even tho I HATE the chair, she seems to like it and she looked wonderful. 

Steve is now on antibiotics so this is a first for me to have FOUR kids on antibiotics at a time.....Shad and me are the only ones still standing:)  Jon has been sick for a week.  I said Shad lived through too much in China to let a little bug get him in America and I'm too mean for it LOL! 

After a full morning of therapy for the little ones, we all went and ate pizza, and Sarah and mom got our hair cut.  Everything is so stinking emotional for me.  The last time we'd gone to the shop we all get our hair cut at, it was right before we left for NY and the girls were finally growing enough hair, they had to have it trimmed.  So the girls in the shop hadn't heard what had happened, and had wondered where we all were at...so I had to go through the story again....it was hard on my heart.  Literally, I felt a weight in my chest, just wishing I could go back to the last time I was in there.....

During my day, I have time to think about things as I am busy with chores.  Today I just kept thinking of eternity.  I'm not one to listen to much christian tv or radio but my husband is....and he listens to it loud.  He had driven my van last night so this morning on my way to walk, I heard a bit of a sermon from the book of Daniel.  One thing that really stuck out to me was the character of Daniel.  He was a Jew, taken from his country as basically a slave.  He became a trusted advisor in various administrations in Babylon.  One thing the minister said was during the various reigns of different leaders, Daniel remained constant.  He was known as a man of God.  He was known as a man of God during good times when he was loved & appreciated and also in times when he was thrown into the lion's den.....  I want to be known as a woman of God who stays consistent through the good times and through the bad times. 

I'm not perfect by any means but if you take anything from this blog, take this....trust God and live for God through all the seasons of your life.  God will give you the grace to do it, if you will ask Him.  He has given me that grace....because I asked him.  On the days when I get really down, I ask Him to give me the grace so I won't bring reproach on His name.  Believe me, there are days when I worry about that!  I am not known for meek & mild spirit LOL.....so I worry....

We are living in eternity now.....often we think of eternity starting when our life here is over, but actually eternity had no beginning and has no end.  You will exist forever, according to the Bible.  It is up to you where you chose to exist at.  You can chose to serve God, or you can chose not to serve Him.  If you chose to serve God, you will go to heaven when this life is over.  If you do not chose to serve God, you will go to Hell when this life is over.....according to the Bible.  It's up to you, God gives us free will. 

Life sucks....bad things happen...God is not a genie....but He is a God who walks with us through the valley of the shadow of death.  We are all going to die one day.  Whether you are a great woman like Margret Thatcher, or a unknown on the street, death comes to us all.  We will all stand before God.  Hearing of various famous people who have died this week, knowing that a country is making threats against our country...it all makes me think of eternity. 

Through everything that has happened to me, I can sit here tonight and tell you that I still believe firmly in God and in His goodness.  He doesn't always deliver us from our trials.  In the book of Daniel, Daniel was thrown into the lion's den...but God shut the mouths of the lions.  In that same book, Shadrach Meschach  and Abendego were thrown into the fiery furnace.  They replied to the king "Our God is able to deliver us but even if He doesn't deliver us, we will not worship or serve your false gods."  They were still thrown into the fire, but God delivered them out of the fire and  then the King acknowledged God. 

I love the statement they made that God was able to deliver but even if He didn't they were not going to serve a false God.

So I say that to you tonight....even if God doesn't deliver Selah and us FROM this trial, even if my heart breaks...I'm going to serve God and not turn to a false god of my own making.  I will not turn the God of this universe into some feel good god.  I'm not going to turn to sin.  I'm not going to blame God foolishly,  I'm not going to turn my back on God.  I'm not going to let bitterness be in my heart. 

So I encourage you, whatever you are going through, turn to God.  He will light your path. 

When I was a kid growing up in church, I'd hear all these great testimonies of folks delivered from sin.  Man they could tell their testimonies so well!  I thought many times "well I have no testimony, I'm just a church kid"  LOL  I was too afraid to sin too much because I was afraid of going to hell.  (btw, that is not a bad thing to be afraid of)   Well I certainly WISH I didn't have a testimony now...but I do.  Not quite the same but I can true testify to you that God is a very faithful God.  

Daily about 3000 - 4000 people take the time to read my blog.  That blows my mind that people care enough to read this.  I get hits from all kinds of different countries including a few I've had to look up to see where the heck it was (the Isle of Man -an island off the coast of Ireland)  I'm sure there are folks of various faiths and I know some folks who have no faith.   I'm sure that everyone is at a different place in their lives.  But I can promise you, even if you've never experienced it, hard times will come to you.  Find your Anchor NOW, so you are prepared for the storms of life.  I was prepared that day when I ran down the street to the emergency vehicles.  I knew the God I cried out to as I was running....and He was there. 

Be prepared for eternity, we don't know what the future holds.  We live in uncertain times.  No one is promised tomorrow whether you are a wealthy famous person or just an average Joe.  I feel strongly tonight that I should encourage you to turn to God and if you do know God, to hold to Him tightly. 

You guys know I don't usually get too preachy, I let Jon do that....but this is just stirring in my heart tonight. 

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Here are some pictures from today!

 

 

Home schooling at its best.....

Steve & Shadrach (love the story and the name)

 

Selah in her chair

Look at her nice legs and feet!  The surgery was such a success!  No more "ballerina toes!"  And we have knees:)

 

my garden

Okra and lettuce

 

 

collards (on steroids- I can grow them!)

 

potatoes....

 

 

 

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So please keep praying for Selah.  I don't know what the future will hold but my prayer is that our family can glorify God through whatever happens.  If Selah isn't healed, I pray our family's trust in God will encourage others to trust Him.  If she is healed I pray God and ONLY God gets the glory!  (you can be sure it won't be because we are some spiritual giants!  and all my friends said a BIG AMEN! :)

 

 

This is a video of Selah and Sarah a year ago today..... I took videos that day...tried to load some more but couldn't...hope you can view this!

 

 

 

this video shows how weak Sarah was and the sores on her little head.

And it shows Selah being a bit put out by us for some reason.  there was a lot of noise and she hated noises....

 

 

 

 

 

Wheelchair.....remembering....

Today Selah got her new wheelchair.  I can not believe I didn't take a picture or ten LOL...  Actually it is quite emotional to get your child's wheelchair.  I should be used to the "punches in the gut" but I'm not.  I HATE it...hate that she has to have one, hate that everyone thinks it's great...the only thing that restrained me from really saying that was I had all kinds of therapists at my house and they'd probably think I'd freaked out!  I am pretty sure they could tell I wasn't happy.  At first I really didn't like it, because there seems to be little support in the upper back/shoulders area to me.  If I were in a wheelchair, I'd like one that was basically a Lazy Boy on wheels.  But it seems the idea of wheelchairs today is to be as little as possible.  It's very complicated and has to be taken apart when we go anywhere so it can fit into our van.  I don't see that happening!  We really need a full size NEW or newer van ( I don't want something that will break down and leave me stranded on the side of the road with Selah)  It is so very hard to get her in and out of our mini van.  We have to put her car seat in the back row of seats and take out the 2nd row in front of her ....then it takes 2 or 3 people to get her into the car seat.  It would be so much easier to just put her into her wheelchair and push her into the van and lock her into place.  I can NOT imagine having to take this wheelchair apart every time we go somewheres...we are NOT mechanical people in this family!!!  I've always been good at finding things for others...I've tried to look some but we couldn't afford a monthly payment so honestly I'm praying that some company will just give us one.  Please pray that someone will hear our story, and be moved to bless us with a new van.  I'd much rather NOT need it and have Selah back to her normal self climbing into her car seat....but that doesn't seem like it is going to happen.....  I know some folks sent me some info on various places that sell or refit vehicles but we really need to know if there are any organizations that help families to get these type of vans.  So please pray for this need for us.  We had thought maybe moving would be the most important thing for us but really this is our biggest need right now.  We still are somewhat living in the moment and not really looking too far ahead.  We know that a move will be in our future but we are just learning to live our "new normal life" and aren't up to alot of change right now nor is it necessary in the next few months.   If you know of any grant organizations or agencies that do things like that for families, please pass my blog on to them.  I'm sure there is some organization that can help us out with this.  I've really not got the time to look around alot on the internet or chase down leads, so if you know of something, can you check into it for me and find out some in depth info before you pass it on to me?  I'm not much of a "googler" believe it or not.

I do want to say that we have been blessed by several very generous people who have given to our family through our church.  So far we have kept that in a fund for Selah until we need it and haven't used any of it.  Our thought has been to wait and see what is the most necessary thing for her and use it towards that.  So if you want to give towards Selah's fund, you can send a check to our church...Grace Church  7060 Berry Road Zephyrhills Fl 33540...just mark it Selah's fund or Clanton family and it will go into a fund for her.  I think our priories right now are her HBOT therapy and a new van.

I did like the way Selah can sit her bottom all the way back into the seat and her legs/feet looked really comfy. Her heart rate was in the 80's sitting up in it so that is great.   It's just another piece of equipment to get used to.

Last night she had a wonderful night...her pulse/oxy machine did not....it wouldn't stay on her finger!  But she never woke up and didn't need any meds:)  Actually the machine only woke us up twice, not too bad!

Poor Steve is sick now...only me and Shad are still standing!!  I'm eating Vitamin C!

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right by our apartment

City bus

Russian Orthodox Church 

their new sanctuary

this was an old lady cleaning the church on Saturday I LOVE this picture....I feel like her some Saturdays here LOL!!!

Bell Tower

the priest's house or the parsonage (like what we live in )

Is this a cool picture or What???

I like this picture

Right by our apartment

two little friends out walking

So a year ago today, was a Sunday for us and we were just walking around Torez.  

Here are some of the pictures of the girls we saw before we met them

Selah

Sarah at the baby house

Selah and her worker

Selah in the crib

these funny pictures of Selah with her tongue out....she was in a ball pit.

Selah

One thing I was going to say for anyone who reads my blog and adopts from Ukraine....it is CRAZY...Eastern Europe adoptions are crazy and stressful BUT take advantage of the time between court and taking custody of the child   We saw the girls every day.  Some families fly home during the 10 day wait  (10 BUSINESS days) But I hate to fly and it was cheaper to stay but more than anything it was GOOD for the girls.  When it was time to leave, they knew us and we knew them.  I wouldn't trade those days for anything.

There were MANY differences between adopting from China and adopting from Ukraine and the BIG one was the time frame spent in country.  When I first heard SIX weeks...I thought we could NOT do that but I was already too in love with Sarah to back out at that point!  BUT those SIX weeks were so good!  I believe the girls learned to trust us and to know we'd be there for them.  Our love grew and theirs did too....yes it was hard, yes it was inconvenient  ...no doubt but I'd advise any family to go and just camp out there...don't be worried about ANYTHING but spending time with your new child(ren)  it was the best thing ever for them.   I don't know of anyone who was blessed to be able to see their kids almost daily even during holidays and we took advantage of that to grow closer with them.  We truly feel that made such a HUGE difference in our transition home with the girls.  When I say we had no problems...we truly had no problems....  It was amazing....and reading other's stories, the only difference was the amount of time we spent with our girls.  So if you do adopt and you can possibly stay, STAY, even if you are at a place that is as easy to work with as our girls' institution.   I believe as much time as you can invest, it will make it easier for everyone on the way home and adjusting at home.

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So please keep praying for Selah...please pray that she is healed and doesn't need all these things that remind us again how much things have changed....Pray that she comes back to us....all the way....

Poop Day and memories

Thanks for ALL your comments:)  They were all so sweet!!!!


Today was a POOP day ....first Selah in church, that necessitated a wardrobe change...then Sarah not to be out done, gave the Chinese Restaurant a "poo poo platter" in her high chair!   At that point, all I could do was apologize and leave!!!!  We may never be allowed back!



As you can see Sarah's dress had layers...let's just say each layer had a layer of poop....LOL Then Sam got angry when he need  his diaper changed and tried to help get his clothes off....  some days you just have to laugh!  (Sam is really working on potty training!)

Last night Selah's alarm went off continuously...she kept having high heart rates.  I have no idea what is going on but it is disheartening after 2 great normal nights!  She is completely chilled out today, let's hope it lasts!


I wanted to answer a question about Sarah's eye on here as someone asked the question in the comments and I thought others might be wondering too....

Sarah has Peter's Anomaly, just like Sam.  PA is characterized by a thick cornea, that is the whiteness you see.  It seems that the eyeball itself moves more that a normal person and I think that is because the eye is trying to find a "clear spot" to look through.  Before Sam had his surgery, he'd roll his eyeballs up in his head (we'd say "Sam has on his scary eyes" LOL)  Now his eyeballs are stable and don't move so much.  We can see Sarah's eye ball through the haze and it looks blue.  the other eye did not develop at all.  Dr A is really the top doctor in the world (IMHO) for PA.  There is nothing that can be done for Sarah because her retina is uneven, which could cause a detactment if it was stressed by the surgery.  Then she'd only have darkness.  Also her optic nerve is twisted and there is nothing that can be done for that.  So in his opinion, the tiny bit she sees, is not received by her brain very well.

But does she see?  She does a little.  We know how to "test" a blind kid, by not giving any noise clues and just moving things towards her quietly.  she will reach for her big blue peanut therapy ball, or for us.  She seems to try and peer into our faces when we hold her.  She has a light up toy that she does like and she will reach for it if it is about 6 inches from her eye.  Dr A thinks that one day her retina will detach anyhow since it is so fragile and she may lose the sight she has.  I pray that doesn't happen, she really uses the little sight she has to the fullest advantage

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2012

 

On the weekends we didn't get to visit the girls at first but once we had court we were allowed to see them daily, even during all the holidays (there are many in May) but that first weekend, we weren't allowed to.  So we walked around our area and took pictures...  the break was good for us, as we were a little overwhelmed with everything.  I had been at the internet cafe searching for an answer to Selah's "quirks" trying to diagnosis her and really worrying about it.  I needed to take a breath, that first weekend, gave me that break, but then after that, I was so glad we didn't have to miss anytime with them. 


                                           
Moon over Torez.....I LOVE this picture. 

 

we saw needles all over the place.  We were told lots of drugs.

 

this is the hotel in Torez.  I have heard some awful stories about this place, very glad we had a beautiful apartment to stay in!

 

Little girl

 

the morning view out our kitchen window

 

 

a neighborhood cat we saw and fed several times

the path we took to the Internet cafe

 

I've been trying to load pictures for hours....so I guess tomorrow I will hopefully load the rest of that weekend's pictures.

 

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I really appreciate all the sweet comments on my blog, the love and interest in my little family:)

Please continue to pray for Selah, it's 9pm and her stats are perfect with no alarms sounding.  Pray that we all get a good night's sleep.  I have a headache and really want to sleep tonight!  And I don't want her to be sick!