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.