Saturday, October 17, 2015

the guessing game

Things have been a bit hard for us lately.  Simon has been really upset....and that is super duper hard on us.  It is crazy to say that when he gets upset, he draws out anger and frustration from us.  There is nothing more frustrating than trying to calm a child, only to have him deck you in the face, or kick you in the neck or pound his head into the floor....

Today I explained all the different ways I had thought we had problem solved his situation and helped to make him happier again, to one of our case workers.  It is a bit daunting to have worked through so much and still have no answer.  In reality until Simon can communicate with us, we won't really have any answers will we?

We took Simon to see a "behavior" doctor because we wanted help with his hitting himself.  when Simon is upset he will take both fists and punch himself in the face as hard as he can. when you grab his hands to stop him, he picks up his head and throws it into the floor.  So we thought, hey, it has been 2 years, maybe we should see if some of this could be corrected with drugs, heck, lots of people have their kiddos on drugs and they seem to help.

Well, we started noticing some changes....Simon gave Jon a high 5!!  It was amazing.  Simon would also stop at the front door and reach for the door knob to say he wanted to go outside, which was awesome.  But along with those 2 things came shaking. His arm would just shake sometimes....then it was both arms, then both arms and legs.  Then he had a seizure at school.  So, we got a EEG and we were told it showed, "epileptic activity", so we waited 3 weeks until we could get into see the neurologist.  I was sort of a wreck leading up to that appointment, so much so, that when the doctor said, "that test didn't show a seizure, it just showed Simon is more prone to those than other people" I was kind of upset.  I know I should have been happy at that point, but I was like, "what?? Why wasn't THAT explained before?" 

We have Simon set to have a 24 hour eeg in December to see if we can catch him NOT having seizures, at least that is my hope.  When the doctor told us to schedule that, my hubby said, "dibs" and I said, "whatever, we are getting sitters and we are both going."  For the special needs parent, sometimes appointments an hour away are like little mini vacations or the ever elusive, date.  I thought my friends, the Schmeeckles, were crazy when they told us that 2 years ago, but we have found it to be very true for us as well.  We take time off work, get away from our community, and those we do ministry for/with, and take a small road trip.  We have time to talk and hang out least with only 1, non-verbal, kid, and it is nice.  this time we will be checking into the Rainbow House the night before, that place is so is another blessing that nearly makes me cry.

Anyway,  we have weaned Simon off that drug and I have a week to pray and think about what we want to do, before his next behavioral appointment. To be honest, I am thinking of canceling and just trying some supplements, at least those I would know what the side effects would be, NOTHING.

All that to say, we had thought maybe he was upset because he was having seizures, but that wasn't it.  So we took him to the dentist.  Because Simon has been gaging and vomiting when we brush his we haven't been doing it as much as we should.  So we thought, well it could be his teeth.  They pulled 2 teeth in the office.  They said that he had a cap that was sitting right on his gum :(  He also has lots of adult teeth trying to come in but he isn't wiggling the baby teeth out of the way.  That night Simon was wonderful, and we thought YEAH!!!  FINALLY he is better.  But the next day he wasn't better....

The school had been saying that they wanted Simon to wear his hearing aides on the bus because he seemed agitated when they took them out.  (full confession, we have NOT been using the hearing aides at home...because we kept losing them) So I thought, well maybe he is upset because we don't' put them in at home.  So I put the aides in and he was HAPPY ALL NIGHT.  And I thought, YES, this was it, he is fixed.  And for about 2 days he was better....then he wasn't.  So, I don't he in pain?  IS it the teeth? is it his eye?  Or is he having emotional problems?  Pray that something gets figured out...when he is happy, he is happy, when he is sad, it is the worst thing you have EVER seen.

Simon had a heart check up this week and it was wonderful.  I was reminded how much I LOVE his heart doctor.  She is amazing, she cares so much about Simon's story.  She was one of the first doctors that saw him when he came home, so she can see the before and after and she really really appreciates it.  If you ever have a heart problem in Lincoln, she is your lady.  Simon's heart rate was down and he still doesn't need his heart cath yet!!

School is going really well.  I love that so many professionals care about my son's well being.  Simon seems to really like it and it has also been really good for us.  I am amazed at what he is doing at school.  We had a wonderful parent teacher conference where the speech teacher told me that Simon is mimicking her "MMMM" 80% of the time. WHAT??? WOW!!!  She also has been holding up 2 objects and asking Simon to point to the "spinner' and apparently he has been doing that too.  Reports like this make me think we need to start asking him to do more at home.  But it is also hard because for some reason, kids like to give the ones closest to them the most grief.  I can't count the times I have heard, "he was fine until you walked in"....yes he saves his self abuse for me :)  The homeroom teacher told me that kids in Simon's class take turns reading to him, and that he seems to calm down and listen to them.  I love when we are walking around and kids yell Simon's name and say hello, in the hallway of school or in the neighborhood.  It warms my heart.

We have lots of appointments coming up in December so I hope it doesn't snow too badly here... I will do my best to keep you all up to date!

Please pray for us as we deal with Simon's emotions.  If it is pain, pray we find it quickly.  Pray that God keeps providing for our family as we are going through some tougher times.  Thanks for your

I will leave you with some pictures from one of Simon's birthday parties.  Simon turned 11 on the 25 of September.  He is pictured with his Aunt Rachel who helped him open his gifts....he got a LOT of jeans and pants.  We go through a lot of those around here and I can't really do laundry too often.  Thank the Lord for used clothes!!!

Simon will forever share his birthday parties with his father whose birthday is on the 24th and his little sister June, she turned 1 on the 27th!!  What a week for our family!! (Ishmael loves birthday parties!)

Thursday, October 15, 2015

Husker Heroes

There are opportunities that special needs parents have in my community that bring me to tears.  I get very emotionally whenever I am faced with a large group of people taking time out to bless kids like my Simon.  It is also super moving looking into the eyes of so many special needs parents who "know" what my life is like day to day.  I gave many a heads up to the other parents trying their best navigate a wheelchair on the AstroTurf, we are a strong breed.

This year we finally made it to an event called husker heroes.  I live in Lincoln Nebraska, home of the cornhuskers....and this event was held at the stadium!!  There were athletes from several different programs lined up all over to allow the kids "compete" in different activities.  Even a non football fan like me felt a bit honored to walk through the players entrance and take my place on the field.  Now, I will say, the event seemed to be a little more fun for the more physically capable children, and Simon kind of hates at points I felt like we were there to give Ishmael a good time.  Which as the brother of Simon, he needs to be blessed by these types of events too.  Also, Ishmael is a heck of a lot easier to get a good photo from than Simon is, but I did manage to get a couple.  In typical Simon fashion they aren't your run of the mill, looking at the camera, smiling type pictures but I think they are pretty nice, especially if you try to imagine what he is thinking...

It was super cool, they had all the kids names up in lights....however, they screwed up our registration so Simon's wasn't up there...but the other family in our community was there so there are 3 of their kids' lights!!

if you look close you can see Simon on the MEGATRON!!!  WOO HOOO.  Also pictured with the racket is Asher, who lives in our community.

We ran into a friend of ours who runs track for UNL!

here is Simon wondering what in the world he was sitting under. "simon that is a HUGE Herbie the husker guy".


LIke I said I don't really follow the huskers, but this guy was giving autographs, so I thought maybe we should get a picture with him...Simon got a little grabby...I think he was thinking, "hey dude, either give me that bracelet or do something useful with that hand and tap my cheek"

Here is Ishmael with Herbie the husker, Ishmael really couldn't figure out why this guy wanted him to do that with his hands, but like I said, he is good with photos and went ahead and did what he was told.

Ishmael and Jordyn (number 22) are best friends, well somedays they aren't, but most days they are.  Jordyn lives upstairs in our community, he and Ishmael were very happy to be running around together.

Simon was thinking, "what did you let them do to your face?"
I must have taken about 20 photos right here and this was the best one.  Here are my boys with lil red and 3 kids from our community.

There are times when it really pays off for Ishmael to have a mom who will talk to anyone.  I saw some football players standing around so I said, "he why don't you play football with my kid".  So they played catch for a while, it was pretty fun. 

Ishmael caught it!!

Soon we had a crew of players hanging out with us.  It reminded me of the first ever therapy we took Simon to at Madonna, it was the day before thanksgiving, and I guess on that day every year all the football players come to visit the kids.  Ishmael was able to play full on tackle football on the matts with the kicker.  There are some advantages to having a special needs brother.  As a side note, I think that Ishmael has realized one of the best advantages to Simon as a brother is that he doesn't steal his toys.....June is starting to threaten Ishmael's toy playing and I think we are all starting to realize it wasn't that Ishmael was good at sharing it was that Simon didn't force him to...

Ishmael loved the mat, Simon had a good time too, but I couldn't take his photo and had Simon on the mat and our friends had left at this point. 

We found some dancer girls so I asked for a photo, as they snuck up behind Simon he seemed to be thinking, "whoa, what is going on?  that is a lot of sparkle ladies"

"okay ladies I know you just want to be close to's okay...I understand, I am a pretty cool cat"
What a ladies man.

Thursday, August 6, 2015

Making Simon's Wish come true.

Last year we applied for a Make a Wish for Simon.  It is an odd process explaining to someone why your children qualifies for a make a wish....basically you are showing that your child could die at anytime (has a condition that could be fatal).  It is not really something you want to think about.  However, we felt Simon had been through so much in his short life that perhaps we could get some generous people to spoil him.  And man, did they come through!!!

That first meeting we had with our wish granters we weren't really sure what we wanted for Simon.  We knew for sure we didn't want to go anywhere, as we have already been around the world with Simon.  We told them all kinds of things that Simon likes, or items we thought would help us take care of him better.  We told them that Simon's favortite thing to do was to the end of the visit we took them into the backyard for Simon to show off his swinging skills.  Once they saw Simon swing....they decided that was a the way to go....and man did they GO.

It was wonderful getting to hear from our wish granters along the way the different ways that Simon's story was touching people.  Our wish granters had a budget to stay within and time and time again different businesses blessed them with extra to make Simon's wish happen.  It reminded me so much of our adoption process and how time and time again strangers came through for us when we told them simon's tale.  It is amazing that on this side of the world people are so generous and can show so much LOVE.

At the same time, Adam, who lives in our community had something else up his sleeve.  He creates paver patios and has very generous parents and friends.  He fund raised his own project to create a nice sitting area for the adults in our community.    Pretty soon there were plans in motion for an entire yard make over.  Adam and volunteers ripped out the hedge that went around our yard, which expanded it greatly, removed the garden, and leveled 2 areas, 1 for the paver patio and another for simon's swing set.  Then his parents came out to Nebraska for a visits where they worked day and night along side their son and laid out the patio.  Somewhere along the way Todd and other volunteers put up a new fence.  (privacy around the playgrounds and picket by the seating area).  

We are so Blessed.  Thank you to everyone who was apart of this project.

In true Bolivar Community fashion, we didn't do a great job taking before pictures....or during pictures really...but here are some photos i found to (hopefully) show the transformation and then some pictures of Simon LOVING his new playground!!!!

Here is a BEFORE picture.  Here we are doing VBS in our backyard.  You can see the old playgrounds and the green hedge on the right.

Here is another picture from the VBS that show the view from the other direction, so looking towards where the new patio will be.
Bye Bye Hedge...we will never have to trim you again.  We do miss your greenness but are very happy about the extra space to play.  (you can see Mikey's make a wish playground is already there.  I actually tried to get a video/picture of when 12 people picked it up and moved it over 5 feet to make room for this project, but I couldn't get my window open fast enough :)  It was pretty amazing.  That playground is HUGE!!
This is the MAN, Adam.
I will be straight up here, I don't know this dude's name and I don't know the name of the machine he is on.  HOwever, I thought this was a cool picture....with a sad caption :)  Anyway, he is leveling out part of yard so that water will run off, not into our house, like it did earlier this summer.
Here is Anoroy with the wheel barrow, look at him go!!  Anoroy lives in our community...he is a pretty cool dude.
Work, work, work, these guys were HARD workers.  Again, THANK YOU!!
Here are some friends pulling out the garden.  RIP garden.  I am so sorry Daniel....I wanted to add this picture in particular to highlight my friend Sara who worked for hours while wearing her that is hardcore!!!
Here are some community members hard at work.  As per usual Todd is telling people what to do!!  HAHA!!  (Todd is the man who holds are building together...he is one handy man....what would we do without a Todd??)  On the left hiding behind Todd is Rachel and to the right is my hubby Jon.
Here are Adam and Ma and Pa Peters.  They are showing off their finished work.  That grey area in the back the area prepared for Simon's playground matting and they are standing on our new paver patio.  THANK YOU THANK YOU THANK YOU!!!
In this picture are our wish granters Mike and LInda, my hubby, Simon and a new friend.  These 4 plus others installed the green matting that was part of Simon's wish to make the backyard a more accessible place for his wheelchair and gait trainer.  Getting this matting paid for was one of those miracles I referred to eariler.  We have been blessed and it is wonderful being able to push Simon in his wheelchair or watch him walk in this area.
Here is a view from afar of the playground in its spot.  You can now see the new fence, the sitting wall and the built in fire pit.  Also, if you look really hard you will see the gravel that was put all around the playground.  Which has become a wonderful toy for Abbi (another make a wish child in our community) she loves moving those rocks around, sensory fun!!

This is Ishmael at Simon's make a wish party, they brought him a present as well. He was VERY excited about his new helmet and angry birds skate board.
everyone enjoyed ice cream at this party...especially ishmael.  It was a VERY VERY HOT day so we were all happy to have something cold to eat!!

This swing set was chosen for Simon because of the high deck.  Linda and Mike found sensory items to go under this deck so that Simon can play under there.  (note the PVC glockenspiel to the right...THANK YOU MIKE!!)  They found this amazing swing to go in place of the tire swing.  It is a huge blessing for us as Simon needs to lay down sometimes and now he can lay down outside and be swinging at the same time.  It has also become a great place for him to swing while he is getting  a tube feed!!!

Here is another photo of him swinging.
Here Simon goes in his gait trainer.
Here are some friends playing at the can see Mikey's playground in the background.  Todd was spraying the boys with water and rightfully was SO HOT.

Here is Simon hanging out with one of his FAVORITE people, our friend Kylie.

Okay full disclosure...Simon was having a TERRIBLE day, the day of his party. So I had trouble getting good pictures of him playing with his new toys.  It was pretty sad because just days before he was having the time of his life out there.  I really wanted all of our friends and family to get to see him enjoying it...but can't really plan on your special needs child behaving exactly how you want him to EVER. :)  So I went ahead and did another photo shoot of him playing on another day.  

that is Simon's normal look when he is swinging.

Here are Simon and Ishmael playing at the sand and water table.  The red box is full of Kinetic sand...which is amazing stuff.

Here they are playing in the water.

Here they are playing again.  Note on the top left of the can see his swing hanging up...again THANK YOU Mike for making this playground so usable for Simon.

Simon was really concentrating here.

Here is Simon reaching out for his Glockenspiel paddle.  He hasn't mastered this whole thing yet...but it is something for us to work toward.

Here is Simon sitting in front of his Glockenspiel so you can see his name on it and his make a wish stickers!!

He thought the steering wheel was funny, this was another item that was thrown in by the playground company. You can see some of the kids of the community enjoying the water table.  Also you can see our battle with the rocks coming onto the green area....we didn't see that coming somehow...we have joked that when a child needs a time out we will make them pick up gravel!!

Here is Simon smiling on his gait trainer.

Here he is laughing...he only wanted to go backwards this day.

Simon watches Ishmael play now...something he NEVER did before.

Now the grand finally....Simon's new swing.  They gave us 2 like to go INSIDE!!!! And one for outside.  We have actually had both outside lately so that when Simon's friends Sam and Tony (both adopted from Simon's orphanage) come over they can swing too.

Here he is laughing and looking around while he swings.


I LOVE to swing.

Here is a picture of baby June, she is 10 months already...she is pictured with Deb who lives in our community!!

This is a picture of what it looks like when we are outside...often people think we are having a party when we are just grilling in our backyard.  People also think we are a daycare....they thought that before and now, look at this yard...we for SURE look like a daycare now.

 Well, that is our photo look at Simon's make a wish. Thank you again to EVERYONE who helped and donated to this project.  You have blessed us more than you know!!!! I am humbled by what God has done for our community.

 Someday soon I should actually update you on how Simon is doing!!! :)  But that will be another day.  Keep reading and I will try to keep writing!!