Sunday, August 3, 2014

July...

 4th of July




 Levi's first 4th of July!  He loved the fireworks.

Micaiah was not with us for our celebration as he was back in the hospital with another infection.








 Look at Levi's big smile in the background.  No fear here!






 My flexible boy.



 Eden's last surgery was in March of 2013.  If you remember, it was a very rough one, but it was the one that finally closed her palate completely.  She was swollen for a very long time afterward.  The surgeon used tissue and bone from her scalp to reconstruct a hard palate for her.

So she went in this July for the next step:  closing her gum line with bone and tissue.  This is a major surgery as well.  This time the surgeon used cadaver bone with bone marrow from her hip to close the gum line.  He also lengthened her palate some more, and did some work on her cheek, loosening up and reducing tissue.  Eden did great as always.  It is so hard to see her going through so much, but she is a brave girl and has a joyful spirit.  She spreads sunshine everywhere she goes.



 Home with all her favorite things, Esther the owl and her cozy baby quilt. 



 Ruby keeping watch over her.





 Maggie helping her from the bathroom.




 So miserable.  It breaks my heart.   But I am pleased to say that this was the worst of it this time.  She is back to her old sparkly self and her cheek looks wonderful this time.  Everything is healing up nicely and she is doing great!



 What a difference a week can make!!



 So the Tooth Fairy has been busy around our house the past few months.  We've had more than one day where two kids had teeth out on the same day.  Kiki finally lost her other front tooth, and a couple weeks later, Laz joined her.





 I never really know what Levi is taking in or not.  But yesterday he came to Hannah and handed over a tooth to her!  It was a molar, and sure enough, he was bleeding and had a tooth out!  We were so surprised.  And then he asked to put it under his pillow to get a surprise!  We were shocked and amused and delighted.  He is such a funny little guy.  So apparently he had been noticing this tradition in the house, and when his own tooth came out, he knew what to do.  He was excited about it the rest of the day, and carefully put it under his pillow that afternoon.  He kept saying, "Levi no look.  Surprise!"  




 


In our house, the Tooth Fairy leaves little presents like a toy or candy under their pillows.   It's always hard to know what Levi will like, but Art picked him up an airplane toy where you pull a rip cord, and it flies through the air.  He also got a bag of M&M's and couldn't be happier.  He played with the airplane in the house all morning, and then I told him to go out in the back yard to try it to see how far it would go.  Next thing I know, he's inside telling me that it flew up on the roof.  We are in a two story house, and I didn't think we would see it again, but Levi told me very confidently that "Daddy fix it."  That made me smile too because he has learned that his Daddy can fix anything.  (well, just about) 
So Art got out the big, big ladder, and held it while Isaac climbed up and got the toy from the gutter.  As he was climbing back down, Art handed it to Levi and told him, "Show me how it works."  To which Levi pulls the rip cord, it goes up in the air, and ... you guessed it ... back on the roof again.  It was hilarious.



 Maggie went up the second time to get it. 









 I used to do lots of projects and crafts and activities with the kids.  You can just look over the blog posts from a few years ago.  Well, that's pretty much out the window now.  With the amount of time I have to put each day into Micaiah's care, his calls, orders, medications, documents, dialysis, and all his other special care, well, it's just a whole new life for us.  Everything is changed.  So, it felt good to take some time to do an activity.

I saw on Pinterest how people used Ikea spice racks for various purposes.  They are little wooden racks.  We were in Charlotte for one of Eden's appointments and were done early, so I stopped at Ikea and we saw the racks.  They are only $4 each, so I picked one up for each kid.



 They were simple enough that every kid could assemble one with a minimal amount of help.  And they really enjoyed it.  I was even a bit surprised that it kept the attention of every single one of them. 











 The next fun part was letting them choose a color to paint their rack.  It took a while to paint them all, but they each did their own, and they did a great job!  It really kept their attention




 Then we attached each one's rack by their bed so that they have a little shelf to put things they want on it.  



 This is Levi's.  He wanted it yellow and he's very proud of it.  He filled it with some of his books.



 Kiki put books on hers as well.



 Micaiah lined his water bottles up on his.



Isaac's 10th Birthday!



 Isaac is now ten, so I now have two ten year olds and two eleven year olds.  Only two little ones left in the house with single digits.   Isaac wanted some wings for his birthday meal.  Unfortunately nobody noticed until I looked at the pictures that Isaac was wearing his chicken wings on his face the whole time! 



















 The Avengers at Isaac's birthday.







Our kids kind of pair up naturally.  Part of the reason we brought Levi home with Micaiah was that I was hoping they would be good friends, and have someone to talk to.  As I've mentioned before, I haven't really heard them talk Ukrainian to each other at all.  They mostly didn't talk to each other at all except when necessary, and when they did, it was in English.  Recently they have started talking to each other more, but again, all in English.  Anyway, the one that Levi has paired up with the most is Kiki!  They enjoy the same things, and they like to play together.  Here they are going into church together holding hands.  It's sweet.  They really love each other.  You do have to smile at this picture though when you consider that Kiki is six and Levi is 14!  :-)  




 This past week we had the tremendous blessing of having Micaiah, Levi and Laz invited to a special needs VBS at a church in town.  It was for three mornings, and it was run very well.  They had a tremendously good time.  On the third morning, they brought in some animals:  a very sweet white goat named Coconut, two ducks, some bunnies, some dogs, and this very sweet little chicken!  She was adorable.



 Here is sweet Ruby sitting on top of a box of catheters for Micaiah.  This box will last about a month and a half.  The cost of this box is $711.  Absolutely incredible.  The amount of cost for all of the things he needs are just astronomical and never cease to amaze me.  Every day I just shake my head at it all. 



Laz playing with Ruby.


Laz starts school this coming week.  The school he has been assigned to has an extended schedule so he starts a couple weeks before the other three.  He really enjoys school and I know he'll be happy to be back to it.  The summer break schedule makes absolutely no sense and has no positive attributes for regular kids but even more so for special needs kids!  It is nothing but detrimental to their development to make such progress and strides in school with teachers and therapists and then have it all grind to a halt as they sit at home for two months.  It is confusing for those with mental disabilities and just makes no sense.  I am so happy that he will be resuming his progress soon and will have something positive to do!  

Having said that, even in spite of me, they have all managed to show progress over the summer.   I was able to find Laz's physical therapist from last summer and I absolutely love her.  She has only seen Laz a handful of times so far this summer and he has just blossomed with her.  She expects a lot out of him, and somehow, he responds very positively to her.  He will do things for her that he won't do for anyone else.  He is making substantial strides in his ability to stand, walk in his walker, and get up on all fours.  She has ambitious goals for him and believes in him.  She takes into account his past and that he has missed years of normal life and any sort of therapy, and doesn't take any guff off of him either!  He is blossoming with her.  He also has been using the ipad to play various preschool games.  While he did very well at his special needs school last year, and I am so thankful for it, I am excited to see how he will do being mainstreamed into a regular school, in a SN class.  In the school he was in, even though his abilities are greatly limited, they were still more than anyone in his small class.  He had no "peers" so to speak, to try to emulate or look up to.  And he received much attention being one of the only partially verbal children in the school. But even this has been an issue.  He is able to communicate many things, but he refuses to do so in many situations.  It is so difficult to figure out and make sense of.  We are confident that this new school setting will be great for him.  And I have heard tremendously great things about his teacher.  We'll see what happens!

 Kiki will be at the same school as she was last year, and with the same teacher.  She loves her teacher, and we have a great rapport with her.  I am quite happy that she will be in the same class with the same teacher, and probably many familiar faces.  Kiki loves school.  And she responds so well to her teacher and the school environment.  I put her in school early in the year because it seemed that I was not getting anything out of her myself no matter what I tried.  She just was not responsive to our methods.  But once she was in school, she exploded with learning.  I was so glad I made the right decision with that.  Maybe that was just the impetus she needed, because even once school let out, she still continued to learn.  Now, we have some very wide spaces where she has made no progress at all, but there are other very significant areas where she has shocked me with her progress. She has a long way to go, and is still quite delayed, but I am excited to see what school will do for her this year.

Levi will be going to a new school this fall also  He is actually entitled to go to the Newcomers' school for two semesters, but he had several tests done while he was there, and an IEP was developed.  His needs will be much more appropriately addressed in a class that addresses his needs.  His new school is much closer to home, and I am eager to see how he responds to it all.  While he continues to be a quirky little guy, he has such a delightful personality and always makes us laugh.  I think his biggest strength over the past couple of months has been just continuing to adjust to being in a family.  Which, given his past, is still huge!  His confidence is continuing to grow. His attachments to each of us are growing.   The progress is baby steps, but they are important baby steps.  Just when I think he is in another world and unreachable, he shocks us with some new thing.  His English is amazing.  He will say words that I didn't even know he had ever heard, let alone knew how to use in context.  In that, he has surpassed Micaiah.  That's a phenomenon that continues to astound me.  It has been eight months.  And yet, after almost 14 years of speaking one language, he is now communicating exclusively in another.  That's pretty awesome.  While he left school only counting to about 4, at his VBS this week, they told me he went outside and counted the garbage cans with no help.  Nine garbage cans!

And Micaiah.  He loves the ipad, Starfall, Kenan and Kel, listening to music, laughing, mashed potatoes, chicken, and laughing.  All of my last four adopted kids (Kiki, Laz, Levi, and Micaiah) are at approximately the same level mentally.  They all have their challenges and struggles.  Micaiah, as you all know, has additional physical struggles of a great degree.  This has changed our lives. And that's an understatement.   We continue to try to provide for his needs in the best way that we can.  Physically, I am finding it increasingly difficult to do everything that he needs.  He has gained about ten pounds since he came home last December.  His room is on the second floor of our house, and lifting him has become increasingly difficult.  My days revolve around meeting his basic needs.  He loves school and is looking forward to school beginning in the next couple of weeks.As am I.  He has a great sense of humor.  This is important in our house!  

I struggle to know how much to say, but I am transparent by nature.  It's a curse.  I can't help it.  I think it is important to be transparent.  But it does not make anything easier.  But honesty is huge with me.  And I know so many others struggle with the same things I do, whether they admit it or not.  Life is very hard right now.  Many questions I am trying to figure out.  As always, we very much appreciate your prayers for all of us. 


Saturday, June 28, 2014

Sum-Sum-Summertime


On our way to camp!
   The   Victory Junction Gang Camp  is a local camp started by Richard Petty to allow children with complicated medical needs to have the experience of going to camp.  Click on the link and you will see what a top rate camp it is.  It is like a Disney resort.  And they have so many sponsors and so many activities.  And it is all designed for disabled children.  There is a water park, horses, bowling alley, miniature golf, zip lining, hot air balloon, arts and crafts, a building full of automatic cars and games, fishing, and several other games and activities.  All kids are encouraged to participate in everything to the extent that they are comfortable.  

When Miciaiah's  social worker first recommended the camp, we were interested.  We had heard of the camp before because some of Canaan's friends had volunteered there.  They offer camp weeks for various special needs, with a different group of special needs at each camp.  As I started reading it over, I saw that there was a week for those on kidney dialysis, and a week for those with spina bifida, but they were different weeks.  Micaiah has so many diagnoses that I assumed they would not be able to take a case as complicated as his.  They also do not take any children with cognitive levels under the age of six, and that would also be a problem.  So I did not pursue it further, even though we all really wanted to have him go.

Then when we went for his monthly dialysis clinic, his nephrologist asked if he was going and I explained to her why not.  She told us that she was going to be there the whole time and would personally see that he was taken care of.  She encouraged us so much, that we did sign him up to go.  

I explained it to Micaiah the best I could.  But how to explain such a concept to him?  He had no context for understanding it.  We just had to trust that once he was there he would enjoy himself.  I showed him some videos of the camp online, and it was enough that he was very excited about going.  The picture above is us on the way to camp.
 


 Because of all the medical issues, the check in process takes about three hours.  And as much as they talk about camp "week", it is not a week.  It is three days and four nights.  It is a lot of preparation for such a short time.  Micaiah was very happy to be there, and enjoyed touring the various buildings and the whole afternoon.  He even enjoyed going to the dorm room, which was an awesome set up with a great group of counselors.   And then with a big smile he asked me, "We go home now?"  So, sigh... he didn't understand after all.  I told him we would be back Thursday morning to get him, and he looked a little horrified and his eyes filled with tears.  But we had to trust our instincts, and our doctors and friends who had experience with the camp.  Sure enough, when I called on Tuesday they told us he was having a blast and was one of the most popular kids at the camp.  And when we picked him up he was very happy, said he had a great time, and wants to go back again.



Here Micaiah is meeting the horses.  He did not feel comfortable in doing many of the activities like horse riding, but he enjoyed watching others do things, and he enjoyed meeting the horses.  He did go swimming, and he made several crafts, and caught three fish.



 Here he met Richard Petty and tried on his hat.  To the right behind him, the guy who looks like Godwin from Duck Dynasty... actually IS Godwin from Duck Dynasty.  He was visiting the camp that week, which many of the campers were delighted about, and my other kids were impressed about, and of course, Micaiah had no context whatsoever of knowing him from Adam.  But it was kind of cool nonetheless. 







 Kiki's 6th Birthday!



 Well Kiki really knew a lot about birthdays this year, and was really looking forward to her it!  She was very excited and seemed to understand that she is six now.



 Kiki's favorite animal is a lion, so Hannah threw this together for her.

















 For some reason, Levi has a real rapport with Kiki.  The both love to play with each other.  I guess they are both kind of on the same level and like to do the same things.  Maybe he doesn't feel intimidated by her.  Who knows why but they really like each other and it is sweet. 



 School's Out!



 Levi attended the Newcomers' School here in Greensboro from about February until school ended mid June.  There was a little ceremony for the kids.  Look at that proud smile as Levi accepts his certificate!  

All the children at the Newcomers' School are children who have been in the country for less than a year, and they are allowed to attend the school for one year in an effort to prepare them for transition to regular school.  The concentration is on learning English and American customs and school routines.  I was thoroughly impressed with the school and with the teachers, especially Levi's wonderful, insightful, compassionate, and caring teacher, Ms. Terrell.  She seemed to really understand the nuances of Levi and was able to give him the most ideal introduction to school that I could have hoped for.  Levi just loved her.  

Levi would qualify to go for the fall semester, except due to his special needs it was decided that he would be transitioned into a regular school with a class that will more directly address his special needs.  For those who are not aware, Levi had never attended school up until now.  He was given the best possible beginning to school, setting a foundation for building on in August when he starts school again.  We are very thankful. 







 Levi's teacher would keep him near her.  I know he took a lot of extra work, but she always took care of his extra needs like he was her own.  I know she did a lot of things for him that she did not have to do and went above and beyond the call of duty for him.  This is what real teachers are made of. 




 More Levi.  Hannah is showing Levi a little snake that the kids found in the back yard.  He had no fear and thought is was pretty cool.  It probably helped that none of my kids show any fear of any animals, snakes, lizards, frogs, and not even most bugs.  I'll give you three guesses where they got that from, and I'm not one of the guesses. 







 Levi LOVES all things water.  We discovered that the first time he saw a bathtub in the Ukraine.  I never saw such a delighted child over a bathtub full of water.  I could hardly get him to come out again!  I knew that once it got warm enough, he would love the pool we put up each year.  Well we finally got the pool up, but while we were putting it up, Kiki and Laz and Levi all played in some storage containers with a hose, and you would have thought they were at Wet N Wild.  They were having so much fun! 



 Not sure if you can see it, but Levi is just laughing and laughing while he splashed away.




 We always let the kids get in the pool as we start to fill it up, and they slide around, and smooth out the wrinkles on the bottom.  I love this photo; look at Isaac's shadow!



And my anticipation for seeing Levi get in the pool was well rewarded!  He was elated!  The first time he got in, he stayed in for probably four hours, and that's without any pool toys because I hadn't gotten them out yet.  He was all pruney and exhausted but he loved every minute of it.




 My happy little quirky guy. 




 And oh how we all miss Canaan!  But he still comes over regularly, and he was happy to jump into the pool and throw the kids in the air.



 

 




Micaiah has been improving quite a bit.  He is showing more interest (sometimes toleration) of the other kids.  He has become much more pleasant and is learning to be kind and polite.  I think he is feeling a lot better, and understanding more about being in a family.  He has started to show more motivation and cooperation and interest in learning to do things on his own.  These sound like small things, but they are really huge strides.  His previous behaviors were causing such frustration as I struggled to  know how to deal with them.  While there is still a long way to go with him, and his care continues, and will always continue, to be a lot of work, we are definitely seeing significant improvements in several areas.  I admit that part of it is in adjusting my own attitudes and expectations as well.  This is no small thing either.  When everything is so vastly different from what you expected and were prepared for, there is a great amount of adjustment in many ways  We appreciate your continued prayers for him and us.



 Before, Micaiah had no interest in being on the floor, or being with the younger kids.  He willingly sits with them now, and enjoys being in other places besides just his wheelchair.  I think he is learning that it is not so scary to get out of his chair.  His confidence is improving, and as a result, he is finding he can enjoy more things.



 While we had told the guys at his orphanage that he would Skype them once home, with all of his hospital stays and other situations, it is only this past week that we were able to set it up.  The boys there were delighted to talk with him and he talked to them for a long time.  I remembered all the boys and it made me smile to see them again.  Micaiah talked to them about many things, and from time to time would break into English without realizing it, and it was really funny. 






So with Canaan moving out, we had to make some room changes.  Canaan was in the room with Micaiah and Levi, but without Canaan there to supervise, we quickly found out that this was not an ideal situation.  So after much thought, we ended up moving Silas and Isaac and Laz from the forest room and down into the big bonus room with Levi.  Then we moved Micaiah into the forest room to have as his own.  This has worked out great.  For one thing, the presence of Isaac and Silas in Levi's room has caused him to calm down quite a bit at night and there have been no more night time antics.  He realizes there is accountability now, and he also can cue off of the Silas and Isaac for appropriate behavior.  Laz is happy to be in a big boy bed with the boys now.  And Micaiah was  thrilled to have a room to himself.  Now we can spread out and store his many medical supplies without worrying about anyone messing with them, and he can go up and go to bed early (as he likes) and start his dialysis and close the door and not be bothered.  It has worked out very well.  But now we see that there is a blank spot on the wall where the bunk beds were, so I may need to add a few animals over the summer!




 The built in shelves are great for storing his many supplies, and the drawers of the dresser are all filled with medical supplies as well.



 This is less than a month's worth of dialysis supplies.  As you can see, he can use the extra room!



And my Ruby loves to keep me company as I clean up everything each morning and set up dialysis for the next night.  She loves to curl up on the dialysis machine because it is warm.





I had to laugh as I looked at the answering machine and had to admit, 51 messages is not unusual for us anymore.  Between all the doctors and pharmacies leaving messages and schools leaving messages, I spend time almost every day returning calls, fighting with Blue Cross and the pharmacies, and arranging and rearranging our many appointments.  Just another day on the river in our house.


And speaking of upcoming appointments, Eden is scheduled for her next surgery July 9th, if I have not already mentioned it.  She has a very important surgery on her mouth.  I am apprehensive about it because it is so important and she has already been through so much.



So this is the summer so far at our house.  We have one more family birthday before we are done for birthdays for this year.  The IEP kids have been out of school for two weeks now and it is really a daily challenge to find enough things for them to do.  The first four are not a problem as I continue to homeschool them and can assign them things to do or give them activities, but the other four take a lot of one on one supervision and guidance.  I wish there were four of me to do all that I would like to do with them.  I still contend that summer vacation is one of the most ridiculous, counter-productive concepts in society today.  It is not good for education or for the child or for really much of anything at all.  We do it because that's how it's always been done, and that's never a good reason to do anything.  But this is how it is, and I have three school kids who would go back to school tomorrow if they could; they love school.  You can guess which of the four would just as soon stay home.  :-)    

Canaan and Candice have been married a month so far, and are loving being newlyweds.  I, as expected, am not nearly as thrilled to adjust to them being gone, but I am thankful they are so close by and so happy.  These things take time, and I will get used to it.  Maybe...  


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