Selah's home!

Selah was brought home today by ambulance.  We didn't want to move her around too much and felt she'd be more comfortable in the ambulance.  This morning they were so quick to do her discharge that I didn't even make it up to the hospital.  I was really impressed with how quickly things got done.  The doctor and I did her discharge by phone and within a few minutes the ambulance folks were there to pick her up.  I couldn't ride with her anyhow so it made it really easy on us.  So I got a chance to get her room clean and ready for her.  She's doing ok, definitely having more pain issues but not too bad.  Our nurse was here to check her in and all of our nurses were ready to be back taking care of their girl.

Well three years ago tonight was when we made it home from Ukraine.  How ironic!  And two years ago Sam and I arrived home on May 9th from our emergency NY trip for his eye.


This is what I wrote on FB tonight
Three years ago tonight we made it home from Ukraine with our precious daughters. I can still remember how RELEIVED I was to put them in their cribs that night. So thankful I took these pictures....it was worth it all, every penny spent, every mile flown, driven or on a train to get to them, every inconvenience, every fear, every doubt and every worry. God brought these two girls home to our family and now when days are long, and there are other worries and concerns, I nev...er doubt that God will somehow see our family through. These pictures are a testimony to a faithful God who does not forget the fatherless, the ones deemed unlovable, the child hidden away in an adult mental institution. God still knew their names and cared for them. I'm so thankful that He gave us the guts to go and get them and I'd encourage anyone reading this post to never be afraid to step out and do the right thing, the thing that God puts on your heart to do. There is suffering in this world, but God can enable you to take away some of it if you will be open and listen to that nudge from the Lord. I love these girls, obviously I did not know what the future held ahead for us, but God is still good and He's still faithful.

Sarah always slept like that, for years!  Now she sleeps normally.  

 

 

 

This picture was taken in Kiev right before we left to come home

Sam, Jon and Selah.  Look at Jon and Selah, they are holding hands, even tho they are asleep.  Is that one of the sweetest things ever? And Sam has his shirt up LOL

 

 

 

 

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Pictures from yesterday at the hospital.

Doesn't Sarah look grown up how she is sitting?

 

 

 

All my kids together, no matter what:)

 

 

 

My Mother's Day lunch was yesterday (not even going to try and go out on Sunday!

 



 

we go to Olive Garden a lot when we eat out.  They will puree the soup for Sarah.  she ate THREE bowls of it yesterday.

 

 

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And my pick Mama Cat of the year.....

GLADYS!

the kittens are only 8.5 weeks old and are huge!

I feed Gladys all the time and the kittens all eat on their own but she still nurses them.  She has been the best Mama Cat.  The first day she was freaked out but she has done a great job. 

 

 

 

 

 

 

 

Please keep Selah in your prayers.  We are working hard on managing her pain.  So far so good, but you can tell it's only being kept at bay.  She looks great and is back to being very aware of us. 

 

 

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Shad asked me if I had told everyone his big news and I'm not sure I blogged about it but.......

He is in ALL 7th grade work now!

Yes he is finishing 5th grade next month but he is completely in 7th grade school work.  He is quite proud of himself and we are proud of him too!

He struggled with following the strict rules in class this year and tried to cut corners but he worked through that and now is a model student who follows the rules and is ahead.  Now he has a real pride in what he has accomplished.  So kudos to Shad!!!! 

More about Selah, Shad and Cuba!!!

Selah is continuing to be pain free!  She still has the epidural.  We are just a tiny bit concerned about her temp, she keeps having a small one.  Also her secretions are a bit discolored/yellow and her hemoglobin has gone down a bit since the transfusion.  No one is extremely worried about any of this (except me of course lol)  but she's never had the slightest complication before with orthopedic surgery (this is her 3rd)   I'm on cloud nine about her being pain free.  It looks like she will have the epidural through tomorrow so she certainly won't come home till Saturday at the earliest.    Our PT said the first 48 hours are the worst so thankfully because of the epidural, she didn't have to experience any of that. 

I went home last night and loved on my other kids.  Sarah wouldn't let me go:)  She was on me all night like a magnet.  It was good to be home for a little bit

This morning Shad woke up with his right hand the size of a baseball glove!  Yesterday he had been bitten by a horse fly.  I LOATH horse flies!!!!   Anyhow Jon took him straight to Urgent Care and they diagnosed him with cellulitis! AGAIN!!!  This is the 6th or 7th time in just 3 years.  The last time he had it, we were told if he had it again he'd probably be put in the hospital on IV meds to see if it could be knocked out of his system.  So I was envisioning two kids at two different hospitals!  I'm kinda glad they didn't follow through with that hospitalization but I'm going to look into this with our pediatrician soon. 

I think Shad's issue was from the orphanage.  When we got him, he had a rash at his waistline that was awful.   He had to go on a couple of different meds to clear it up.  I can't remember now what it was actually diagnosed as but I'm thinking it has something to do with these crazy bouts of cellulitis he keeps having.  It looked different and would even bled but I think it is related.  So once I get Selah home, I'm going to set up an appointment for Shad to get to the bottom of this problem. 


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This was a comment from yesterday's post
When we have extra medical supplies, we give them to our doctor to redistribute. He knows which of his patients need them. Why send them off to Cuba when Americans can use them right here?

So I just wanted to explain a few things.  First we have been giving away extra medical supplies for years.  To be honest, sometimes it is hard to find anyone who wants or can use them.  I ask all my kids' teachers, therapists and some of our doctors too. And I've found a home for some things.   I have been able to give some things to a ministry that works with handicapped young adults too.  But honestly it's been hard at times to find people who really need things and I have lots and lots of contacts.  Most people have insurance or Medicaid on their kids.  The things I have are things for more handicapped people and most of those folks are on Medicaid because of the severity of their disabilities and get their own supplies.  I've even gone on groups on FB and offered things before.  So, I've been there and done that!

I've also been able to give some things to ministries that were able to take the supplies to other countries.

So why would I think to send things to Cuba or any other country?  Because we are so blessed in this country and so many others do not have the chance to have all that we have!

I've seen so much in my travels.  We are so blessed in this country, even people like us who don't have a ton of money have so much more than families in other countries.  In other some other countries, people have such a hard time getting things that we take for granted.

And Orphans get the least and last of anything that is left over. 

In a country like Cuba, I can not even imagine the discomfort and lack of care/medical supplies/food etc....   so WHY send things to Cuba?  Cause the bible tells us to take care of orphans, it tells us not to withhold good when we can do it...that's why!!!!!

So I'm committed to find a way to bless an orphanage in Cuba.  I've been making phone calls from Selah's hospital room.  I've contacted out denomination  and the Catholic church too.  There has been little contact inside Cuba, I could find just a tiny bit of info on orphanages on the internet and none of them had any real info.  I'm sure that I will find a way to help out.  I figure if God puts something on my heart, then I need to do it!

I'm committing any funds that come in through my blog to Cuba for the next few months and I hope to make this dream a reality to help an orphanage there and maybe build a long term relationship in which I could help do projects or whatever is needed. 

Politically I'm very conservative and in theory supported the embargo that we had placed on Cuba for political reasons BUT it's hard for me to think of the people of Cuba suffering because of it.  I'm thrilled to think I can a very small part of helping our Cuban neighbors!

http://www.npr.org/blogs/thetwo-way/2015/05/06/404648523/u-s-approves-ferry-service-from-florida-to-cuba

The above article tells a little more about the ferry service I hope to be able to use to get supplies to orphanages there. 

So if you want to give, you can always give through our church

Grace Church
7060 Berry Road
Zephyrhills Fl
33540
 just mark your check/money order Cuban orphans and I'll see it will only be used for that purpose!!!!!

Day After Surgery, Memories of Kiev and Thoughts of Cuba

Boy do I have a lot to say today!

Day after surgery....

Selah ended up having to have a transfusion early this morning.  She didn't lose a lot of blood but her hemoglobin was down way low.  Her heart rate was high all morning but they had held one med because her blood pressure was a bit low.  I get so annoyed.... at the time when it was due to be given, her blood pressure was lower but by the time she had the transfusion it went back to normal but no one gave her her daily med.  So then her heart rate was up in the 140's for hours.  I finally went over the meds with our nurses to make sure nothing was lacking and realized what had happened.  Once they gave it to her and another med that was not given on time, due to the hospital pharmacy putting it in on their time not Selah's schedule...she was ok.  Her heart rate is back in a normal area and mine is too LOL!

I realize that at home the nurses and I watch over Selah's every little change and try and figure out what is going on and she is our only focus (well at least the nurses' only focus)   Here in ICU they do have other patients but it annoys me that things are just allowed to go on without finding an answer to them!  But  I'm very satisfied that the little glitch has been worked and it wasn't too bad but it's hard for me to see anything made harder for my girl!



Well I have a funny story again....
Last night it was after 11pm when I left the hospital.  I had actually planned on driving home but my oldest son absolutely forbid me to do it!  He told me I was too blind to drive home at night and he didn't want me to get killed.  It really was sweet.  So then I was trying to find a cheap room not too far from the hospital but this area is a bit rough.  So I was on the phone and he was looking on line and I was too.  I thought I'd try a chain that was near here and had a really low price.  I called and made sure it was a hotel where the doors were inside doors.  So I'm following the GPS and talking to my son on the phone.  I pass a HUGE Nudie Bar with all kinds of lights on it, I actually remarked on it to him.....and then I saw the  hotel I was looking for was right beside it!!!!!!!  NO wonder it was so cheap!!!!!!   

Needless to say I made a big U Turn and went to a Hampton Inn near the airport!  They only had one room and hadn't rented it because they'd just cleaned the floor that day and the carpet was damp.  The lady rented it for me for such a low price.  All the other rooms were over $240.  They were so nice to me.  I paid just a little over a third of that price.  It was only $20 more than the crappy chain by the nude bar!  By the time I got in there, the carpet was dry and everything was nice & clean!

It's been YEARS since I stayed in a hotel by myself.  Even though it was late, I enjoyed it!  I took a shower at night and one in the morning LOL!  With our family, we always run out of towels in hotels.  I controlled the tv channel changer too....  It was very relaxing.  


Tonight I'm going home,  Jon and Steve have been working and holding down the fort.  Steve has also continued working with Sam on his GemIIni speech program.  I'm so grateful to Steve for working with Sam and keeping the schedule consistent for all the kids.  Thankfully he works at night so it's easy for him and Jon to trade off.  What will we do when he leaves for college??????   He is such a big help. 

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Here's some pictures from three years ago in Kiev

we had the girls and were doing all the paper chase to get their American visas done.

 

 

 

Sarah and Selah were taking a nap after a big lunch

 

 

 

 

 

 I was soooooo happy with my meal from TGIF!

 

 

 

 

 

 

The street near TGIF and our apartment.  We were just one block over from where the big protest was at. 

 

 

 

 

 

 

 

 

that was our apartment building

 

 

MEMORIES!

 

 

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So I have a question....does anyone have any contacts in Cuba?  I'm interested in partnering with a special needs orphanage there.  I just saw on TV this morning that there has been ferry service approved between Florida and Cuba and each person would be allowed to take 200 pounds of luggage free with their ticket. So if Jon and I went down, we could take 400 pounds of medical supplies with us!!!    We often have extra medical supplies and know of other families who do also.  I've always been interested in Cuba-with it being so close to us yet so remote.  I'd love to get involved in helping an orphanage there and raising money for projects etc....  I've got some phone calls in and I've looked on line but there is not much out there.  It would certainly be a "new field" where people could jump in and help. It's so close and if we are able to transport supplies there, it would make sense to help out!  Please email me at theclanton5@aol.com and let me know of any contacts you may have....and no I don't speak much Spanish!

Selah's Surgery

 

Selah and her "grandma" Rose. 

 

Today Selah had a 7 hour operation on her hip.  I was not expecting it to be as long as that, and I don't think her doctor quite thought it would be that long either.  So she had the tendons of her leg cut, her muscle pulled away from her femur and her hip socket built up and the pin replaced.  Her doctor feels that she will not have any more issues with her hip after this surgery. 

 

Since Selah didn't walk much, the hip socket did not develop normally so now she is stiffer and her muscles pull up and then pull out her socket- to describe what has happened. 

 

She had some blood loss and was close to having to have a blood transfusion but thankfully did not end up having to have it. 

 

The doctor put in an epidural that will stay until Thursday so she is in no pain whatsoever.  She is sleeping good tonight. 

Please continue to pray for her, that she will heal quickly and have as little pain as possible once the epidural is taken out. 

 

One of my best friends came and stayed with me and kept my mind off of things.  I don't know what I'd done without her.  Jon was with the other kids.  He worked a half day and then came home with Shad so Steve could go to work.  We all work together:)

 

 

 

 

 

I took this picture right before she was admitted.  I said "Selah look at Mommy and she looked and then moved her head away three times so I gave up:)

 

 

 

 

 

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Today was three years since we left the orphanage with our precious girls. 

 

 

What a wonderful day!!!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Funny Story!

 

Last night about 2:30 AM, dear Molly was barking and barking.  She did wake me up but I ignored her.  Finally Steve came in our room and told us that he thought the dog was fighting another animal right by their window.  So we all go outside....Molly had trapped an ANGRY armadillo in our flower bed.  The armadillo had dug in a hole, and only his shell could be seen.  But the armadillo was so angry, it was growling!  I had to bring Molly inside and Jon & Steve had to get shovels and dig out the armadillo.  We figured that if we didn't get the armadillo out of the yard, then Molly would not shut up all night!  So they got it out safely and it ran off in the woods AND then we all went back to sleep!!!!!

 

 



 

 

 

Champs!

 

 

 

 

 

 

The group, Rhythms of Grace that Shad is in won FIRST place in our state competition for Fine Arts!  Not only did they win first place, they got a PERFECT score!   Now they will go to Nationals this summer.  The kids did a great job practicing and their band leader Rodney brought it all together.  He is an awesome teacher!   We are proud of the kids!!!!!!  (To be honest, I'm proud and a bit shocked LOL  Shad had never played the marimba till February of this year!   And he really didn't practice like he should have LOL!  But I'm happy for them)

 

 

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Tomorrow Selah has hip surgery at 12 noon at St Joe's in Tampa.  Her things are packed and ready thanks to her nurse.  I have a bag packed too.  I'll play it by ear, it's hard to coordinate everyone's schedule so I'm not sure if I'll stay the night, stay at a friend's house in Tampa or come home.  Jon is working but getting off early to pick up Shad and so that Steve can go to work.    We expect her to be in from Tuesday- Friday or maybe even Saturday. 

 

Please pray for Selah and for her doctor so that he will have wisdom to know exactly what to do so Selah won't have this issue again! 

 

 

 

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If you'd like to go to my FB page

https://www.facebook.com/pages/My-Real-Life-By-Yvonne/1405082996394656?sk=photos_stream&tab=photos_stream

 

 

And LIKE it (only need 18 more likes t hit 500)

 

You can see about 70 pictures from three years ago as we did our "paper chase" the day before picking up the girls from the orphanage.  Most of our time was in Donetsk  so sad that now that city is bombed.

 

 

 

Tomorrow is our three year anniversary of our "gotcha day"  Bittersweet!



Therapy Time

Back at the library with my baby boy!  He is sitting here listening & watching the GemIIni program repeat over and over.  He loves it.  I'm praying that this will be the key that opens his little mind to speech! 

With our three little ones, we have tried everything there is out there to help them whether it has been various therapies, doctors, medicines, and now this.  Sam has been in therapy since he was 2 months old.  We've tried different kinds over the years.  He even got to go to Dolphin Therapy in the Florida Keys for a week before he had the eye implant.  With Selah we have focused on fish oil and Hyperbaric Oxygen Therapy.  With Sarah it has been more therapy and consultations with various specialists as well as swimming lessons. 

Do I know that any of this has helped?  It's very hard to say with therapy since each child's base line is different and there is no real way to compare children but I feel it has helped.  I don't regret anything we've tried with any of the children.  Our three little ones have significant issues, they will never have a "normal" life but we want them to have the opportunity to have a life that is as stress free as possible.  So if Sam can enjoy the therapy and gain some words/understanding then it is worth it.  Of course we are hopefully that this program might be a key for unlocking language for him.

One thing over the years that I'm very adamant about is, that therapy should be enjoyable for the child.  I've seen children cry and scream in therapy.  Thankfully my little ones have almost always enjoyed whatever therapy they were in.  If they didn't, I probably would not keep them in it.  Also I've been super careful with choosing the children's therapists.  I've had some bad experiences especially in the public school system but overall most therapists have been good. 

One thing I'd like to try with Sam and Sarah is horse therapy.  I don't know of any services near our home.  Maybe one day we can try that.

I don't feel the need to make my kids "perfect"  I think they are perfect the way they are!  But I do not want to be lazy if they need special help in an area.  Most of the time I feel if the child is going to do/learn something he will without a lot of help but I want to give my little ones all the opportunity to learn things "their way"   It's a fine line to walk. 

I think when Sam was a baby, I did try and "fix him" with therapy BUT I still do not regret it.  I see the things he can do that Sarah can't do (I compare them because they have the same diagnosis with Peter's)  and I wonder if Sarah had had therapy, maybe she could do more things that would help her enjoy life more. 

But if my little ones never change from where they are right now, it's still fine with me!  I'm not going to love them any less or love them any more if they learn new skills.  But at the end of the day, I want to know I gave them every chance in the world!!!!!!

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Well I hope everyone is enjoying their weekend.  It is gorgeous weather here in Florida.  We are going to go out some this afternoon.

Shad is in Orlando at our church's denomination's Fine Arts Competition.  He is in our percussion group.  He has learned to play the marimba.  They did a great job in competition and will learn today if they make it nationals. 

My kids keep me hopping!  From the oldest getting ready to go to college in three months, to Shad in Fine Arts, Sam doing this new learning system, Selah having surgery on Tuesday.......everything is so different with each one I just have to pray for strength and wisdom!!!!!!

GemIIni program

What a busy week for us!

Recently I've been hearing a lot about a program called https://www.gemiini.org/  Gemiini.  It is a program to help non verbal children speak.  We decided to take the plunge and buy it for Sam, as well as a tablet.  It's a bit hard to use for us because of our horrible internet service but I've just been sitting in the church with him, listening to the video over and over again.  It is a totally web based program.  I did get it to work some in our home last night but it's been a challenge.  Today I have Sam with me at the library in a study room. 

Sam is quite engrossed in it to say the very least!  Basically it's like a Baby Einstein video with all the music taken out and all the pretty pictures LOL.  It shows a lot of close up on people saying a word over and over and over and over and over again.  Pretty much purgatory for the parent!  Yesterday I had such a headache I thought I was going to puke!  I'm so thankful that Sam is so engrossed in it.  The sessions are lengthy-for some reason I think they are 40 minutes each.  AND the child is to view it 40 times....yep...40times before you can move on to the next video.  We are on view #5.....we have a looooong way to go. 



Here is Sam last night

 

 

 

 And today at the library

 

 

 

He is quite adorable isn't he?  So intense on watching this.  If this works.........

 

 

Yes we are going to try it with Sarah and Selah too.  First I wanted to work with Sam on it..  I'm not quite sure I could work with more than one child on it at a time at this point.  Sam does say NO and Mama and sometimes Dad.  He has a larger understanding of receptive language than the girls.  I won't work with them until we move because of the internet issue. 

 

 

I'm not even sure we are doing it 100% right.  In the beginning it's actually supposed to be used at mealtimes.  We can't do that because of the internet issues we have, so I'm just playing it over and over as much as he'll take.  Luckily he likes things  repeated  over and over again.  I do NOT! 

 

 

So in all of this, is our hope and prayer that something will unlock language in Sam.  I felt a real sense of urgency to get him started on this.  I can't imagine it working on a completely blind child.  I'm going to try it with Sarah but I can't imagine it working.  I worry about Sam's sight all the time, it's in the back of my mind at all times that he could lose his sight.  He has a fragile grasp on his sight, so many things working against him all the time, his body works against him.  If he could get some real speech, I think it would make life easier for him especially if he ever completely loses his sight again. 

 

So pray for me that I can work with him and get him started in this.  It's quite an undertaking for a mother of five! 

Next Tuesday Selah will have hip surgery.  I'm nervous about that too.....

 

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Well my husband has been enjoying Molly our OUTSIDE  (lol) dog.  He has been taking her out in the woods with him every afternoon and she loves it.  The other day they came up on three wild hogs and she wanted to go after them.  THEN as they were walking, a big 7-8 foot gator went across their path!  It came out of the woods on one side and went into the water on the other side.  Molly wrapped the leash around Jon- she was a bit spooked.  He said he couldn't tell who was protecting who at that point:)  The next day they spooked up some hogs again and he had to hold her back from chasing them.  She is becoming more vocal now that they go out in the woods.  She will bark at cars after they get back home.  She loves riding shotgun and sits up high so she can see everything. 

 

 

Well we are having beautiful weather here in Florida!  I want to be outside not stuck in the library but here I am!!!!