Wednesday, November 5, 2014

photo update

Well, I have let another 5 months go by...time for an update.  Since my last post lacked photos, this update is FULL of them!! 

In August Simon started school!  We had a small battle with the district office, but in the end we were able to start Simon in first grade this year. (They wanted to put him with his "peers" and start him in 4th or 5th grade.  However, my dream was for Simon to have as much time in elementary school as possible, then skip junior high, because who wants to go to junior high, anyway?  I think the war may not be over on this, though, so you might hear more about it later.)  Simon rides the bus to and from school each day and he seems to really like it.  He has a one-on-one para at school and spends a little bit of time in the classroom with the "typically developing" children, who LOVE him by the way, and then he goes to the resource room.  In the resource room he gets to walk in his gait trainer, has floor time and practices eating by spoon (he is up to 16 bites without force feeding!!.)  He also meets with the speech teacher 4 times a week and has been working on communicating.

It is a joy to see Simon happy!  When he is happy he is very happy, but when he is sad, he is very sad.  Simon has a wide range of expressive emotion, from hysterical laughing (a bit of over-stimulation at times) to all-out sobbing tears.  His eyes are becoming more and more expressive as bits of the institutional autism wear off.  There have been times when I really feel like his eyes are saying things to me.  Sometimes when I am changing him in the middle of the night or giving him a bath after he has vomited, I think he is looking and me and thanking me for caring for him.  I pray that he doesn't remember all the times he sat in his own filth in that orphanage, as he spent 8 long years without the care he deserved.

  Ishmael is playing more and more with Simon and Simon is loving it.  Ishmael will wrestle around with him on the floor and Simon will laugh and laugh.  Ishmael has also taken to helping us, by giving Simon high fives and handing him toys when Simon needs attention and we have our hands full doing something else.

This photo is from March, when we went to the circus! Note that his head is BELOW the headrest.

I think that being Simon's brother has helped Ishmael to grow in his ability to empathize with others.  He is very possessive and protective of Simon.  He often asks us to buy things for Simon, he shares very willingly with him and is watchful over him.  Since Ishmael is only 4, he does make semi awkward conversation starters about Simon like, "Simon is adopted," "we got Simon from the orphanage," or my favorite, "Simon hits himself".  That last one makes me explain things if we are around people that don't know us :)

I took this photo because Ishmael got out the guitars, gave Simon his and asked me to take their picture.

In July Simon got a G tube placed and since then he has been growing by leaps and bounds.  I need to take measurements, but since I haven't, I have included some photos for you to see for yourself.  I have been able to tell that Simon has shot up like a weed, just by looking at where his head sits in his wheelchair. 

This photo is from June, when we went to Utah to say goodbye to Adam, a dear boy from Simon's orphanage who passed away. Please keep his family in your prayers. (Simon's head is getting close to the headrest.)
 This photo is from October, note that his head is finally ON THE HEADREST!!

Simon turned 10 on September 25th.  We had plans to celebrate on the Saturday after his birthday.  To the left is Simon enjoying his day with his aunts and cousin (who turned 4).  Jon and I were unable to attend however, because I went into labor that morning and brought little baby June into the world! Here is Simon's sister, June Bailey, at one day old.
 Below is a photo of our whole family together for the first time, the day Ishmael and Simon met their sister.  Simon had a bit of an adjustment after June came, but most of that was because I had not been able to care for him directly as much toward the end of my pregnancy and the beginning of June's life.  However, things are settling down now and Simon is giving me less dirty looks...we are back in the business of bonding :)

On Halloween we hung out with our community in the parking lot of our house.  We set up the bouncy house and the fire-pit.  It was a bit cold, so we bundled Simon up really good and settled in by the fire.   Simon LOVES watching the fire burn.  Later, we came inside and got some family photos.  To the left is a photo of Ishmael and Simon in their costumes (Scooby Doo and Fred!).

Here is a photo of Simon with his baby sister June.  She was dressed as Daphne :)

Here is the whole "gang."  I was Velma and Jon was Shaggy to complete the Mystery Incorporated theme we had going.  (Thanks to my sisters for letting me borrow their costumes!)Jon commented on how good Simon looks in white.  Everyone else in this family can't wear the color white because we look sick and pasty.  But Simon's beautiful olive skin just glows!  What a handsome fella.

We had some friends stop by to see us.  Pictured above is our friend Grace with her daughter Sam and son Tony.  Both of these kiddos once lived in Simon's old orphanage.  As a side note, Grace had a lovely story written about her adoptive journey on the FRONT PAGE of our local paper.  We were also interviewed and was pretty fun seeing us all in print!

Simon's favorite place is in his swing.  Since he is outgrowing his swing and winter is coming, we are hoping that Simon's Make-a-Wish happens soon.  They want to give Simon a "swingnasium," which will include two spots for swings in our house and a new swing set for Simon outside. 

Simon's development has taken off.  He is sitting up on his own more and more.  He can pass objects from his left hand to his right.  He explores toys that do NOT vibrate :)  He makes more and more eye contact with those around him and I think he is on the verge of crawling.  His rolling over on the floor is more and more controlled.  He used to just stop on his knees and forearms but is now pushing up onto his hands.  I am AMAZED at his progress.  He is doing so good.  

Thank you for all your prayers and support over these past 2 years.  Thank you for your patience with me as I am slow to keep this blog updated, even though it is the cry of my heart to share Simon with all those that have helped us and those who might desire to bring other orphans out of their prisons and into their homes. 

Thursday, May 8, 2014

A great update....

Here it is, the long overdue update.  I think the longer I waited to write the more overwhelming writing the blog post actually sounded.  I think I have left you all hanging long enough.

So I referred to a "motivational" talk from the pediatricians office last time I blogged and the family meeting that ensued.  At some point after that we decided to switch Simon to a higher calorie formula.  We switched from Complete to Boost.  The boost offered us a flavor and also 360 calories per 8 ounces rather than the 250 of complete.  The results the first day were sensational, Simon was opening his mouth wide and keeping his hands out of our way.  He finished one of those in 15 minutes, which was a feeding miracle and record for us!!  That day he had 1800 calories!!!  Things continued on pretty good for about 2 weeks maybe...but then the feedings got hard again.

We had been battling the pressures we were feeling to get a feeding tube from every angle.  Finally after a few months of feeding him Boost only (3 a day) and prunes (we have to give him this to balance the constipation that comes from the boost) the feedings weren't going much better.  We were still spending too much time and now, instead of spending time getting purees of good stuff (the avocados, coconut oil, nuts and other protein sources, fruits, veggies, supplements) we were spending almost the same amount of time and only getting, synthetic food in him....sadly with lots of sugar (that is what helped him like the taste!)  So the idea of getting him the feeding tube so that we could actually blend REAL food and put it into his belly with NO STRUGGLE started to sound great.

So we decided, with much grief at first to get him a feeding tube.  So far, he still doesn't have the tube because of bazare illnesses striking each time we have had it scheduled.  But currently, he seems pretty healthy and we have the proceedure set for July 11th.  Please pray that we are able to get it done that day.  Also pray for wisdom for us as we look into spending a large chunk of money on a blender that will liquify things for us.

In other fronts, Simon oddly, while taking a break from most therapies (we only go once a week now for 30 min of speech and 30 of OT) is in a developmental heyday.  He is now rolling over on the floor onto all fours.  He likes to stop there and look around a bit and giggle.  I think he is pretty proud of himself.  He will also scoot over to things he is INTERESTED in EXPLORING.  (I put those in all caps because those statements are HUGE)  Yes I just said he is showing interest in things and exploring!!!  Right now he will grab toys and bring them up to his chin, I think he likes to check to see if ANYTHING will vibrate for him as vibrating objects bring him comfort and calming like nothing else.  He is also in an oral phase.  He will grab our finger and pull it into his mouth.  Sometimes he will suck on it, which is huge since until now he has shown no ability to drink from a bottle (perhaps now is the time to see if he will take a cup with a straw??)  He has also bit down on our fingers but most of the time he just wants to show us how to flick his lip.  When he was at the orphanage he spent a lot of time in the crib alone, as you know, and he played with his hands.  One of his things to do was to play with his lip.  So he finds it amazing that he can show us how to play with his lip and while we are doing this for him, he has both of his hands free to wring (he rubs his hands like a devious chartoon character).  It brings him great makes me happy that he has "communicated" his desires to us and also that he is asking US to bring him comfort....which I think is a pretty huge deal.

In April, while Simon was under for some testing, we checked his hearing again. (we had done a few tests that were always inconclusive while he was awake) Well, this time we found out a few things....some of which were hard to hear.  Firstly, they thought he might have liquid behind his ears because they couldn't get a reading, so we gave them the go ahead to put tubes in his ears.  Well, it turns out that wasn't the problem.  The problem was that for years he had ongoing ear infections, most likely from being fed on his back.  The ear infections were never treated, and as a result, created "resessed pockets".  At this point they told us that this could lead to a cyst in there that would lead to an infection in his bone that would cause hearing loss.  (AHHHH, I did not see any of this coming)  So that was hard, but fast forward, it turned out fine on this front, he didn't have a cyst, he didn't have the bone infection hearing loss.   But then when the test was complete the audiologist came in and told us the "great news" that our child was a canadate for hearing aides, oh, and she mentioned that he wasn't hearing much of what we were saying to him.  The pictorial graph showed us he could hear motorcyles, loud pianos and airplanes.  Her exctiement about the hearing aides was very tainted for me, as 1. she had never met Simon awake and was saying things that would NOT work about how they would set the hearing aides up. (I was being way to practical and thinking, how would he ever keep them in, and how could they possibly test them?)  2. She just told me my child had profound, permanent hearing loss....that was a big deal to me.  At this point I thought it was alll related to untreated ear infections....insert anger and grief and frustration at the NEGLECT during the first 8 years of his life.  However, we still don't know, he could have been born with hearing loss....or we could put this in the pile with all the "incidents" that happened, you know the "incident" that harmed his brain, and the "incident" that is causing his right eye to die....The not knowing is hard for me.  SHould I be angry at a person for beating this helpless child??  Or should I chalk it up to birth defects?  Does it matter....?

Okay, so anyway, the good news.  Simon got hearing aides last week and he LOVES them.  He LOVES having them in and while we haven't seen huge strides in the understanding or speech department, and really we shouldn't for like a year, he is chattering at lower volumes so we KNOW that he is hearing himslef and I think he is looking at us like he is hearing more as well.  I forgot to add above on his devleopmental heyday, that Simon has been tracking us with his eyes and "tuning" in on what is going on around him a lot more.  He is making more eye contact and people are noticing :)  This was even before he had his ears on :)

Last but not least, Simon sat up for the first time EVER.  He held himself there for nearly one minute.  It was amazing!!  

Here are a couple of pictures off this ipad.  I will do my best to add some pictures to this post from my computer very soon :)

Tuesday, February 25, 2014

Out and about in Pleven

Today I went to the Pleven Panorama, it cost me 5 leva to get in, once inside I was then paired with a man who spoke some English and asked if I wanted to pay 20 leva for a guided tour.  He also informed me that I would need to pay 5 leva to use my camera.  (about 2 minutes into my taxi drive to the monument I realized that I had forgotten my standard lens on my camera, I only had a close up one, so I knew there was no way I was going to get any descent photos of the place.  When I stood 100 feet from the front door I could still only capture the building front entrance in 2 shots, the top and the bottom, HA)  So I told the man I wasn't going to pay for pictures and I didn't act super interested in paying the 20 leva for a guide….but for some reason he decided to be my guide anyway.  (I feel like I am paying the "gringo"tax everywhere I go, but it needs to be named something else like the "gringesky tax" or something.  Either way I am a target….but I am fighting back!  You may have ripped me off yesterday but today I am getting a tour for FREE :) )

When you enter there is a very LARGE staircase that wraps around and has 4-5 large paintings.  There is nothing to explain the scenes, so if I hadn't had my "guide" I really would have had no idea what was going on in them, other than the obvious men at war.  Once we cleared those paintings we made it to the grand show, a large circular room with a painting going all the way around it.  In front of the painting was a 3rd battle "forefront" if you will.  There were trenches with fake dead bodies and guns and cannons.  The whole thing is a big war scene from September 1877 when the Romanians, Russians and the Bulgarians finally fought off the Ottomans in Pleven which allowed Bulgaria to declare there Independence.  On December 1877 was the formal end to the siege, I believe or the point where the rest of Bulgaria was freed.   

Outside I ran into a very nice man selling his wares. (the basic touristy things, he had decks of cards, coins, magnets, table cloths, ash trays and more)  I have seen many tables like his.  In fact there are even more in the city center right now because Baba Marta day is coming and everyone is selling red and white bracelets to commemorate the day.  (I will get pictures of it tomorrow perhaps)  Anyway the difference was, he spoke wonderfully clear English (and Spanish, french and German, I can really only attest to the English and Spanish)  We had a great time talking and he told me many times, I could just look and I didn't need to buy anything, which was so different from the normal pushy sales person.  I wish now I would have asked to take his photo!

At this point I had finished my Pleven Panorama experience and it had taken all of 25 minutes.  Good thing the guide told me I did not need 2 hours there.  She had asked the taxi that drove me to the monument to pick me up in one hour.  However, everything was wet and rainy and you can only look at cannons so many times and I didn't have my book, so I started to walk.  The good Lord has blessed me with the ability to find my way out, if someone drives me in, I can reverse my steps and get myself out.  so I began to walk to meet my taxi!  And I took some photos along the way.

(disclaimer.  I have been having trouble getting this computer to work well for me, it is really not the computer's fault but most likely user error.  So I threw in some photos that should have been on yesterday's adventure. I also refuse to struggle to get these into order….so there you have it.  ENJOY…and if you are even in Pleven and have to chose between the Panorama and the Regional History Musuem…go to the Reigional History Museum!!! 


this sign said wine museum….I might have to find that place!

after my short adventure I waited for Grace to get back to the hotel and we went for lunch.  Her and I have a problem on these trips, we never take photos of each other together or separate, so here I am "enjoying" the restaurant called Speedy.  This was before my food came….I was really not that happy after it came.  I should have stuck with the skewers….skewers are always a good bet.  I also need to stop ordering mashed potatoes, in the last 2 days at 2 different restaurants I have been eating instant luke warm mashed postatoes…they are not good.

I thought this bus sign was nice.  The colors were nice to see on another dreary day of sunlessness.

as I take pictures like this one I often wonder, is there someone inside wondering why I am taking pictures of the entrance to their house.  And how would I feel if there was a foreigner outside my house with a large camera taking photos.  My answer is that I would probably try to go and make small talk with them…..but I am beginning to think I might be a rarity.

I found this very comical.  Apparently this slipnot fan could not contain his excitement about this band and just had to but it up on a building….very quickly and plainly.  Odd.

Again the colors got me, this graffiti artist, had a much bolder message than the slipnot fan….I don' really know what it says, but I thought it looked nice :)  The sign for the Panorama is also in this picture.  By the way, I really don't know that I would have found this place if I had tried to walk myself there.  It only cost me 3 leva each way from the hotel and I think it was worth it.  Although if I hadn't planned on the taxi coming back, I couldn't have just walked.  It was about 10 minutes away from my favorite museum.  you know the one, the Regional history Museum! :)

this was a look down the hill from the Panorama.

And here is where I finally ran into my taxi driver.  I think he was very surprised to find me walking up to his taxi.  He had stopped to buy some cigarettes and when he came back to the car, there I was!

Yesterday I discovered my favorite grafity…a true artsy book nerd must have commissioned this one :)  It seemed very planned where it was and I thought it was lovely.  There was a book store on the other side of this building.

this was on the entrance to what I assumed, using my best deductive reasoning, was a bar :)

the only thing I would change about these statues would be to have some info in English near them.  You know where else there needs to be some info?  At breakfast at this hotel they have some cereal, near some bowls.  Next to the bowls and the cereal is a pitcher of what looks like milk….only it isn't milk.  It is WATERED DOWN YOGURT!!  Now, I say, if you are going to put a pitcher of watered down yogurt, which apparently people enjoy drinking here, for the love, either move it from the cereal or put a sign on it.

Again the colors brighten my day a bit and brought light to what I find a communism dreariness, which isn't so bad when the sun shines….I am hoping for sun tomorrow!!

This is a door to a church….

I thought this tree in the middle of the sidewalk was lovely, I like that although the tree was in their way they just made the sidewalk around it, and even when they chopped off all of its branches they still thought, hey birds might like this tree, we will hang some bird houses on it.  So nice of them.

this is a painting from the regional history muesum…I am into colors today!

wish I knew who this guy was and why they are celebrating him currently!

and last but not least is a Darth Vader bug man…who I do not think was commissioned to be here but it made me laugh and take a picture.

Monday, February 24, 2014

Pleven Tourism

Well, we arrived in Bulgaria on Sunday!!!  The trip here was very uneventful, although I will tell you, that when I got onto that plane that was going to take us over the great big lake, I reached up to adjust my personal fan (you know the one that is over your head on a plane, for people who get motion sick like me, to use) it was MISSING!  I looked above Grace's seat, no she didn't have one either, WHAT????  NO FAN????  I recovered and we made into the air, but landing was one of the worst flight experiences of my life.  I had to use the puke bag……as a fan….but I still ended up SUPER sick.Anyway, we made it, it was fine, but I really hope that isn't a new trend for airplanes, especially international ones.  I am hoping the British airlines that brings us home…has a fan for me!

Through circumstances out of my control, I am not allowed to go to Grace's visits with her. :(  So I have been exploring the city and making friends.  In fact, just yesterday I met a very nice, possibly homeless man, with INCREDIBLE English skills.  Who said to me, "bob marley, yeah, reggie American, you like bob marley, I have a tattoo of him on my shoulder (he did not try to show me or anything as it was cold. I, as a smart traveler, was closing my bag while I was talking to him, although still showing interest)  He introduced himself, we chatted a bit and then he excused himself.  I found myself thinking, dang I should have asked him to show me around (but my American travel sensibilities stopped me, but it gave me a great start to the day!)

I walked and walked and took some photos and walked myself to the Regional history museum in Pleven.  That place is HUGE.  If you get a few hours, you should just try to walk through at least part of it.  The website had told me that it cost 2.00 leva to get in but that Mondays were free.  The website (and my experience in Sofia, 6 months ago) had me prepared to pay 5 leva to be allowed to take photos inside.  The odd thing was, when I walked through the gate, the little booth was empty, and the entrance to the museum was not clear.  I gave a group of men the "what's up" head nod, that I do to everyone here, most people think it is pretty weird, but who can really stop the midwesterner from coming out of me??  Anyway one of them said, "muesum?" and I said "YES".  He jumped in the little booth and grabbed some keys.  He then lead me to some HUGE doors, and unlocked them….then walked ahead of me to turn on some lights.  throughout my visit a staff person followed me around from room to room turning lights on in front of me and shutting them off behind me.  In certain areas they would pass the torch to the next person.  I wasn't too werided out.  I asked the first man if I needed to pay him for the photos and he said normally yeah 15.00 leva…huh, he didn't press me for money so I didn't pay him, as I got the weirdest feeling that if I did, he would just put it in his skinny jeans and keep it.  At some point they found someone who spoke English who explained to me the layout of the museum and that his colleagues would be following me around :)

The first floor was all super old stuff. The things that remind me how young my country truly is and that Roman things didn't happen in just books.  There were actual people leaving behind buildings made of marble and statues, that at one point were probably not headless, and gold crowns, bracelets and belt buckles.  So first floor, roman antiquity and then moving to the late 1800s.  they had wonderful displays of rooms in homes through the ages and the main hall throughout had different outfits from the regions in Pleven.  Wedding out fits and socks and belts through the ages.

When I climbed the marble stairs to get to the second floor and began to see things turn more, what I pictured, "British European" I was instantly not as awed.  Which I thought was odd, until it occurred to me, this is when my country's history starts, so I suppose it makes sense that I am not as excited to see old chairs from Jane Austin movies :)  I also began to notice some of the items were being imported from the good old USA, then I laughed to myself a little, and said no wonder I didn't think this was as "foreign".

Here are some pictures from my experience.  Some of my best ones could not be opened on the computer which was rough. I would really recommend this place to anyone traveling to Pleven.  It gave me TONS of history on the people here and LOTS of things were marked with English tags…..which helped :)  Oh and in the end I did end of paying 10 leva to take pictures.  It was worth it. I wish these photos were in a better order.  But I am very tired of trying to work on this post….so in no particular order here are some pictures:

Here is the outside of the museum, it goes on down both sides of the block.  It is huge!
See photo below for a picture of the houses they are describing.

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I am sad that this is the only photo that I have taking about the ottoman rule.  It is amazing that 500 years of ottoman rule can be described in a few sentences.  There was a black and white painting there, that depicted the oppression of the Bulgarians under the Turks.  It was a very intense photo.  The Bulgarian, with the help of the Romanians and Russians were able to declare their Independence from the ottoman empire in 1877.

On the top floor there were lots of displays about the arts, music, dancing and theatre.  These are some puppets.

belts…I bought a belt today, but I went a little more present day :)

traditional socks, if I can find some of these on the streets, I will buy them!

Here is St George, he is kind of my Pleven orphanage theme icon.  So I pay attention when I see him!  By the way, St George is no longer in the entryway to the Pleven orphanage, he has been replaced by some flowers and butterflies...

This is a picture of toys from Roman times….pretty interesting

To the left is the "washing machine" you can see below that it was an import from the USA.
Some Bulgarian traditional Bulgarian garb.