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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3 comments:

  1. Wow, there is such a difference in Micaiah in all the pictures of him in this post! I hope you continue to see more changes as he further adjusts to life in a family and continues to spend more time with you instead of in the hospital. It looks like you have had some amazing opportunities for your newest boys. Thank you for sharing!

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  2. Both of the newest boys have gone through a remarkable transformation. I'm surprised that a social worker would recommend sleepaway camp for Micaiah, a boy who grew up in institutional settings and is new to belonging to a family. No wonder he was confused. He is absolutely blossoming in the family so don't feel any pressure to send him on adventures outside of it.

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  3. Micaiah had a blast at camp and wants to go again! He cannot understand the concept of "next year" so it is hard to explain to him. This Victory Junction Camp is far from an "institutional setting". It's like a Disney resort. I am normally not a fan of sleep away camps. In this case, however, it was not so much about what he would enjoy -- though I am glad he did enjoy it -- but more about us finally getting a much needed, and very short respite. Micaiah needs a massive amount of care. I do not think anyone outside of our family can fully appreciate it. I have never met or heard of an adoptive family that has brought home a child that needs as much ongoing and intensive care as he requires on a daily basis. It is utterly and completely exhausting, and I am thankful for those who step forward to give much needed respite to families like ours so that we can somehow try to continue to do what we are doing. Our SW is awesome, and she knew that the best thing for Micaiah was for his family to get a little break so that they could keep caring for him the best we can.

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