Monday, April 8, 2013

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....


Sunday, April 7, 2013

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!

 

Saturday, April 6, 2013

Selah shared... Day 3 with the girls. URGENT NEED!

Well Selah shared....Sam & Sarah are both sick.  Yesterday both of them were grumpy.  With Sam, sometimes that is par for the course (he has my personality LOL) but Sarah is never grumpy and seldom cries.  Yesterday she was a mess.  Last night it was hard to get Sam to go to bed which is odd since he loves his sleep and usually will walk to his bed and get mad at us if we are not  ready for him to go night night (if he still has some eye drops to do)

This morning they both woke up with their eyes almost glued shut with mucus!  That totally freaked me out!  Thankfully our pediatricians office has Saturday hours and our doctor was there!!  Both of them have junky throats, sinus infections and eye drainage.  They both got three prescriptions.  After two dosages of meds they both are back to normal:) 

I use CVS pharmacy and they've just started a new program.  For every 10 prescriptions, you get back $5 LOL  So far this month, with Selah's regular prescriptions, Sam's 5 eye drop prescriptions, Sam and Sarah's new ones....I'm at 20 prescriptions....it is April 6th LOL  CVS may lose money on us!!!!

Selah on the other hand is doing great, totally back to normal.  I sat with her on the swing for almost 2 hours this afternoon.  My left arm is now useless as she leaned on it the whole time but it was worth it to feel her cuddle into me.  She was so totally relaxed and very content.  At first I thought she'd go to sleep but then she started looking around and was the most alert that I have seen her since last week.  She seemed to look at me anytime I talked to her. 

Sam's speech teacher always stressed to me the importance of "vesicular" movement, swinging movement and how it affects the brain and allows it to learn.  Kids who are blind or visionly challenged CRAVE it!  Sam is addicted to swings, you could swing him 5 hours a day and he'd still want more.  So I felt like the swinging today really seemed to "center" Selah and help her to relax as well as focus. 

 
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So back to my memories of last year.....hope you all like it, I haven't got many comments.  One friend said she was having trouble commenting...maybe something is off with blogspot but I LOVE hearing your comments
 
 
So Day 3 with the girls....   Here is Steve looking out the living room window as we were waiting outside to go to the institution.
 
Here are scenes of our apartment area

 
There were always people going through the garbage

clothes hanging outside

 
 

 
 

 
 

Jon sitting and waiting
 
 
 
First smile:)
 
 

 
 

 
Daddy and Selah

Natasha, Selah's caregiver holding her

 

Selah had to leave

 
 

 
Look at Sarah we thought she was self injuring herself.  Seems that was all scabies. 

 
 

 
 

 

 
 

 
 
 
 
 
Can you believe this is the same girl???
 
 
Doesn't seem possible does it?  The first picture was taken a year ago today....the bottom picture was taken last Sunday....
 
 
THAT'S LOVE!!!!!
 
I've never shared that top picture of Sarah before...it's rough...but it was real.  And I loved that girl just as much as I love that pretty one in the Easter picture...
 
 
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After we left the orphanage we had a flat (one of many) and I took some pictures on the outskirts of town
 
 

 
 

 
 

 
 
Pretty bleak town...Torez was a booming town until the fall of the USSR.  It was a coal mining town and very prosperous.  I dont' think  too many of the residents are happy with the current conditions.  The town is about 90,000 - 100,000 people about the size of Lakeland for my friends in the area...but that is where the similarities end.  Such a poor town, but I loved it. 
 
Here is our dear George and Sam playing at the apartment.  Jon had his coffee:)  We loved George even before we met him and he was one of the main reasons we had such an enjoyable adoption experience.  We soon felt he was a long lost relative...the wonderful interesting talks we all had together.  What a great friend!  He has facilitated over 100 adoptions and has fans all across the US:)  He handled all our paperwork/court issues with such grace.  We were finished in less than 6 weeks, an adoption of two unrelated girls, at an institution....Selah's case was very complicated but everything went so smooth.  We flew in with about 5 other families, and we were the first ones to go home.  He was amazing!!!
 
 
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URGENT NEED
 
 
 
This is the blog of the family who was just a few weeks from leaving to adopt their little boy and he passed away....  Now they have continued, and have been led to adopt another little boy at the same mental institution as their son.  They are still short about $3000....I have 3000 hits just about every day on here.  If everyone went to their blog and gave $1, we could help them out!  they've suffered a huge heartache on the way to becoming the answer to some little child's prayer.  I can promise you this family will be bringing hope to a hopeless life.  from what I understand, there has only been two adoptions from this mental institution and it is rough...
 
 
Let me tell you what a mental institution or an "internot" is...it is NOT an orphanage.  It is the end of the road.  Children who are considered UN adoptable, like my girls go there at just 4 years of age.  They "age out" of the baby house and instead of going to an orphanage (which is bleak enough) they are sent to a hell hole...there is no other words for it.  At my girls institution, there were children age 4-18 who were mentally and/or physically challenged, boys and girls, then there were the Girls over 18.  The boys are sent to other institutions after they reach 16 or 18 years old.  Many children die in the first year of going to a mental institution.  Torez used to average 5 children dying a month.  Thank God that started changing as Life 2 Orphans came in and provided care givers who helped.  I do not believe Sarah would have lived much longer if we hadn't come and got her, you see the picturs, what do you think?  What you don't see is pictures of her naked, I just could not bring myself to take any of them.  She looked like a skeleton, scary, so tiny....her pelvic area was indescribable...so sunken in. 
 
So you have a chance to help SAVE a child, one who can have a different life, like our girls have.  Please click on their blog and give towards their adoption and pray for them!!!