Friday, January 31, 2014

And the Plot Sickens...


Wasn’t I just saying something about, “If I had a nickel…”?   Well give me another nickel. 
 
Eight days ago we had a three hour meeting with both surgeons, two social workers, the physical therapist, and the nutritionist.  It was then that we learned that the plan to have Canaan trained for the dialysis (as was already approved) would not work because he would not be the person doing the dialysis, a major detail they had neglected to tell us.  Bottom line was that the only people who could really take the training, based on their criteria, was Art and me.   Those I had spoken with in trying to set up the training had been pushing for the training to start this week, Jan 27-31.  We said that the earliest we would be able to arrange Art’s work, school schedules and childcare would be this coming week, Feb 3. 

 

This week I have been calling trying to confirm what time we are supposed to come in.  We have worked out all the arrangements for us to manage to somehow do this.  I did not receive a call back to confirm the time.   Then Art gets a call today from the dialysis training people saying that they need to set up a home inspection visit before they can arrange the training.  < five cents please >

 

If they knew a home inspection was necessary, why didn’t they arrange it weeks ago when they first knew that Micaiah would be having peritoneal dialysis and we would have to have training for it?   I called the dialysis folks and learned that the surgeon did not request the home visit until the day before yesterday.

 

I called the surgeon.

 

She was very business like and told us that they were waiting to hear who would be doing the training.  < huh ?!? >  First of all, they left us no choice as to who would be doing the training, because they told us Art and I were basically the only people who could do the training.  And when we had left the meeting, we had told them to set it up for next week and we would make the appropriate arrangements.  If they were truly “waiting to hear” from us, why did no one return my calls when I did try to contact them about this?

 

So where does it stand now?  Home inspection visit is first thing Monday morning.  After that, paperwork will have to be processed to set up the training and I was told that they “have no idea how long that will take.”

 

This is insane.  This kid, who has already spent all his life waiting, is sitting in a hospital room waiting to come home, and being delayed for weeks because of paperwork?  And to the tune of how much money per day?  I cannot even fathom it.  Where is the sense of urgency?  Where is the communication?  Where is the compassion?  I am beyond frustrated with all of this. 

 

I appealed to her to do everything she could to expedite this process.  I asked her, personally, as a mother, how she would feel if it were her child waiting weeks in a hospital because of paperwork, and how much comfort she would feel about it if she were told the things I was being told right then.  I told her this kid has already waited all his life, and lost all that time, and God only knows how much time he has left.  Each day he is kept from coming home to his family is just inexcusable. 

 

Every time we think we are on the home stretch, something else happens. 

 
 
,,

Sunday, January 26, 2014

Let the Birthdays Begin

We have a rash of birthdays this time of year.  Every large family seems to have at least a couple times of year where the birthdays are back to back.  It's debatable whether our family is "large" or not; depends who you're talking to.   But our first birthday of 2014 is Maggie's.  Maggie turned eleven years old this week which is utterly  INCONCEIVABLE  to those of us who were there when it happened  (Were you there when it happened?  How does that make you feel?).  If I started in on all the thoughts and memories, well, this post would run into next week or so.  And my heart can't take it anyway.   
I began talking with the kids on Maggie's birthday and they asked to see Maggie's slideshow from when we first met her.  So we watched that one, and then of course each of the kids (well at least each of the kids who have a slideshow) wanted to see theirs.  And then I was such a weepy mess my head hurt so we had to stop.  And no, I don't have slideshows for all of my kids yet.  And I don't have baby albums, nor have I finished Maggie's 100 Wishes quilt yet.  But most of their laundry is clean and somewhere in the house, and as far as I remember they did all eat dinner tonight so lighten up people.  I am still waiting for my Amazon order of four more hands, two extra lives, and a clone.  

Let's start with our beautiful Magdalene Ruth Limaio:

For the few who may not know, we met Maggie in November of 2003 when she was ten months old.  We were in Hunan province of China.  God only knew what it was all starting.  



Our first view of Maggie:


And my first hour with her:




Okay, that's all I can take.  Moving right along...


Maggie requested to go ice skating for her birthday.  So we sent her skating with all the people who are able to skate (and I use that term loosely) so she went with Eden, Canaan, Candice and Hannah.   A few shots:

















With great appreciation to Hannah and Canaan and Candice for taking them because I sucked at skating even when I grew up in Canada and my dad made skating rinks in the back yard every year.  Go figure.  

Then back home for one of Maggie's favorite meals and cake:




 Maggie holding up the traditional eleven digits.



Maggie requested snickerdoodle cookies for her birthday this year.  So I made the cookies and I also found a recipe on Pinterest for a snickerdoodle cake.  So I made the cake and we decorated with the cookies.  She did want to try piping it herself.  



I was not real impressed with the recipe for the cake, but the frosting was incredible.  







Maggie and Si have a bond unlike any others.  They've been buds from the start.  




Besides the ice skating, she also got a horses book from us.  She loves horses.  She also got some of her favorite treats from her brothers and sisters, and a couple of great outfits from Candice and Canaan, plus a promised trip to the mall with Hannah.  




So two days later, we have Micaiah's birthday.   For those of you who have been following, you know the significance of this day.  He turned 16 today.  Had he still been in the Ukraine, he would have been stuck there for the rest of his life with no ability or chance to escape.  He would have stayed in the rural mental institute he was living in until he reached the age of 35, where he would have been transferred to another institute to live out his days.  

However, he never would have made it to that 35.  It gives us chills to realize that he very literally would likely have not made it to this 16th birthday.  He was in renal failure, even though we did not know it.  It is the blessing and mercy of God to him that he even made it home on the plane.  And a little over a week after he came home, in the beginning of last December, he was sent to the ER of the local children's hospital and has been there ever since. 

We would never have believed he would still be there on his birthday.  We did not even think he would be there for Christmas.  But be that as it may, we went out to see him today for his birthday.

Since our finances are very tight from all the additional expenses of bringing he and his brother home, and all the medical expenses, and all the many needs of raising all of these children, we were scratching our heads as to what on earth we could give him for his birthday.  He received loads of donated presents at the hospital at Christmas.  I was even embarrassed to give him the few things we had for him since he had so much more piled up everywhere in his room.  So what could we possibly give him for his birthday?

Once again, my husband comes to the rescue with a great idea.  As we've shared, Micaiah loves to listen to music on his tablet.  But he does not really dig the ear buds he has to wear to listen to it.  So we got him a nice pair of padded earphones.  We also brought him a couple dozen cupcakes from Sam's.







I hoped he would like them, but I was really quite gratified to see the delight on his face when he opened them.




Happy boy!

Now, backing up a little to an unhappy part.  

When we arrived at the hospital today, they told us he was upset.  He was being moved to a new room two doors down, so we initially assumed he might be upset about that.  I came into the room and came up behind him and he was crying.  He hadn't seen us come in, and I put my arms around him.  Then the nurse started to explain that when he was being moved, they heard a little crack when transporting him, and he was very upset about his leg.

The facts:  Micaiah cannot feel from the waist down.  
He has had several breaks and fractures in his legs and feet over the years.  His legs are quite misshapen because of this.
Can paraplegics feel pain when their legs break?  We don't know.  But he was quite upset.
I looked at his leg.  This leg was already bent due to a previous fracture, however, it seemed to be much more out of shape, at a different angle, and I could pick up his leg and move places that didn't move earlier.  So basically, I think we arrived just as his leg had broken.

He said he felt pain, but he should not have felt pain even if it had broken, but he may have felt a great degree of fear realizing what had happened.  No, I am not sure of any of this. Why would this cause him fear?  There is just so much speculation.  Maybe because if he had a fracture at the institute that he would have been bedridden for several weeks afterwards.  We do not know for sure and still do not.  We requested an x-ray, and at the time we left he still had not had one done.  I will reserve my opinion about that until I see what happens. 

I will say that after I mothered him accordingly, he moved on to other things.  I requested a pain reliever for him.  Whether he was actually in pain or not, a pain reliever certainly could not do any harm.  We are still waiting to hear the results of the x-ray.  In the mean time, you can see his leg in this photo:


I am positive it was not at this great of an angle before.  If it's not one thing...



Yes, he is 16, but let's all just forget about that for a moment.  Let's look at the delight on the face of this little boy, and just leave it at that.  




We stayed for quite a while.  The play rooms on each floor are maintained by volunteers who lock them up on weekends.  Like weekends are not times that sick kids need to play.  Well, I will try to not be critical. We walked him to various floors in the hospital.  The have a really cool play area on the top floor, but it is outdoors and he was just too cold.  So we walked around other areas.  



Then we played with one of the remote control cars that he got from the hospital for Christmas.  I took some video at this point.  There is so much you can get from video that you can't get from photos.  I am trying to upload it to youtube but it is taking a really long time.  There is video of Levi there as well.  Levi and Micaiah continue to not communicate with each other.  I think there is some irony in all of that, but I won't elaborate.  Who knows/  And there's nothing we can do about it anyway.  I try not to make sense of too many things.  If I were suddenly plucked out of all I knew and set down in a foreign country where everything was different and nobody spoke my language and then I came across someone who did speak my language, I can assure you; I would speak to them!  But not these two.  I don't get it, but it's what it is right now.  




So he is doing very well.  He has been transferred to a new room because right now, he is stable and his needs are not extreme.  We will begin our training next Monday.  He probably needs this extra week as they continue to tweak his levels on his dialysis.  He was quite happy with us today, and his attitude and demeanor was honestly better than anything we had witnessed up until now.  



And it is morning now and my youtube video has finally uploaded.  I think some may find it interesting to see several of my kids interacting with him.  And for the Levi fans, he's in there to.  
Click Here for video

We also did not have any update on Micaiah as of about midnight last night.  We called and they still haven't xrayed.  (seriously?)  Will update more later.




So a few more photos that I found as I was updating.  Here is a great picture of Maggie and Silas:





Yes, Levi continues to do great. He takes care of his chickens every day and we are getting plenty of eggs!  We did not expect that!  


Each day he learns more and more about what it means to be part of a family.  He is eating great and growing.  He is still a very happy and cooperative kid.  Everyone loves Levi.



Well, some of it you have to take with a grain of salt.  Right now he still really enjoys pretending to have hair, no matter what he finds to make it, and he loves to wear Kiki's play shoes.  Maybe he thinks he is being a chicken, we don't know.  He likes a lot of strange things right now, but so what?  He will outgrow what he needs to, and we always have to keep in mind all that he has missed over the years.  I am delighted to give him the opportunity to work it all out.  







Meanwhile, according to the uploading of all my photos, I could show you scores of pictures of Ruby sleeping.  But I will share this one of her curled up sleeping with the Paterfamilia.  He is not a big cat guy, but he is a big animal guy.  She found a cozy spot, and I don't blame her!




This is why I don't get any work done.  I left the room for a moment and come back to find this.  




Ruby is bigger than this now, but I found this photo from when she first came home and can't resist sharing it.  Hey, at least she isn't sleeping.  She is a sweet little kitty and one of the few joys in our lives right now.  We are thankful for her.   


So, we have two more birthdays coming this week:  Hannah and Laz.  Will try to update more pictures next week.    In the meantime, we appreciate your prayers more than you could know.  This is a path I never expected or wanted to walk, and yet, here I am!  I want to finish well with what I have.  



..




Friday, January 24, 2014

Micaiah Meeting

So Art and I had a three hour meeting yesterday with various specialists to discuss virtually everything about Micaiah.  There were the two nephrologists/surgeons, plus two social workers, the physical therapist, and a nutritionist.  Can't remember who else.  Sooo much to decide about this boy.  Sooo much to do about him.  It just continues to get more overwhelming.  And I told them, like I've told you here before, "If I had a nickel for every time someone told us something and said they thought we already knew... "

So we had been told Micaiah COULD NOT be discharged until someone was trained to do his dialysis at home.  (Oh, didn't we tell you?  We thought you already knew.)  Which, we were led to believe was an afternoon's instruction on how to use the machine.  So we wait for them to set up the meeting.

Then we're told it's a five day, 40 hour training, (Oh, didn't we tell you?  We thought you already knew)  which of course, we simply can't do with all our other kids' special needs.  Next week alone I am going to appointments from Raleigh to Charlotte for three different kids; important appointments that I've waited months to get, rescheduled one once, and cannot reschedule again.  So we asked if Canaan could go take the training, as he is an adult, living at home, and does have medical training making it a reasonable choice.  He could learn and then come home and teach all of us.  They said that would be fine. So we put that on the calendar and start moving things around accordingly.

Until last Saturday when we learned inadvertently through a phone call, that the truth is the training is actually done OUT-patient, and Micaiah HAS to be discharged BEFORE we can do the training. (Oh, didn't we tell you?  We thought you already knew.)   Total flip side of the other info, plus adding a lot of concerns.  For instance, a medically fragile boy being transferred to and from a facility in the next city for 8 - 10 hours a day right after being discharged from the hospital.  Doesn't seem wise for Micaiah.  And how about transporting him? It currently takes two people to transport him in most cases.  And I feel VERY uncomfortable about having him discharged, sent home, when none of us here have ANY training to care for any of his needs.  It just didn't make any sense, but we're told that's how they do it. 

Until we talk to them at the meeting yesterday where we learn that Canaan is not allowed to do the training after all!  It is required that the person who will be doing the dialysis get the training, and the person who is trained is "not allowed" to train anyone else.  I told them that Canaan would not be doing the dialysis; it would be me.  Then, they said it is required that I get the training. (Oh, didn't we tell you?  We thought you already knew.) 

But wait.  There's more!  :-)   Not only am I required to go, but it is REQUIRED that a SECOND person go as a back up.  He can't be discharged and released to go home until we have TWO people trained to do his dialysis. (Oh, didn't we tell you?  okay okay, you get the point....)   Who can do these things?  It is overwhelming.

They also said that they are now requesting the dialysis training company to come to the hospital for the training so that the training can be done while he is still in patient, which would be almost essential if this is able to happen at all.  In, out, in, ???  And this is where we are now.

No, we are not sure how on earth we will accomplish this, but it looks as though Art and I are somehow going to have to figure out a way to do this, and work with our older kids' schedules to see that everyone is taken care of. 

Besides all of this, we had long discussions about Micaiah's future care, the dozens of medications he will be on, the many, many appointments he will have in order to monitor everything about him as his whole system is completely fragile.  He will have a special diet and special equipment at home to accomplish all of the things that have to be monitored and done to and for him each day.  It is huge.  And for this reason, we ask for continued prayers for us to be able to do these things that for all intents and purposes appear to be completely impossible for us.  We need answers and we need ideas and we need wisdom and vision.  We need to think creatively and positively and figure these things out.  And we need strength. 

Micaiah has several months of healing and leveling off of levels and other physical problems before they can even begin to consider the idea of a transplant, assuming he would qualify anyway.  And then we have mental and behavioral assessments to be done to see how and where he can be placed for school.  He will have to have additional physical therapy and occupational therapy to be able to accomplish even the simplest of self care tasks.  The neurosurgeon has to do some tests at some point to take into consideration his spina bifida, which ironically we had thought was his main health issue.  It's importance has fallen to the bottom of the priority list now.  Shall we throw in dentist and eye doctor and audiology appointments?  And don't forget that he has bonded more with the nurses at the hospital than he has with any family and we are still dealing with huge adjustments for a boy who has been institutionalized and uneducated all his life, as well as neglected and possibly abused.  In the midst of all of that, we'll begin the often precarious process of establishing bonds of a family and proper relationship goals. 

So this is your update on what is happening this week with Micaiah.  We did visit him while we were there for the meeting and he is doing very well, is always very happy and loves to play with the nurses.  He was very happy to see us.   For those of you who know him well and have advocated for him, you are probably aware that his birthday is Sunday.  That is the day that he would have been deemed ineligible to be adopted by a family.  And according to the doctors and specialists we have seen, it is completely possible that he may never have made it to that birthday at all in the condition he was in.  We do not think he knows it is his birthday (or what a birthday is), or how old he is, but I am sure the nurses will be trying to communicate that to him.  We plan to all go and visit him on Sunday afternoon and bring a cake for him.  We will take pictures and let you all share in his birthday celebration.    Stay tuned!!





 
Scene from My Cousin Vinny  (got to keep your sense of humor).

Monday, January 20, 2014

A Little News and a Little Cuteness



So last night Maggie and I went with Art to visit Micaiah.  There have been several days I could not go due to sickness and he had been asking for me to come.   
I was pleased to see how well he was doing.  He was very happy to see Dad walk in with us with him.  He was in a wheelchair.  We are told that he loves to be up and about in the wheelchair.  The wheelchair he has to use is huge for him, but we asked and were told that they would order him a wheelchair fit for him.  She said we'd have it before we leave, but I don't see how that's possible so maybe she just meant it would be ordered before we leave.  



We finally have a date up for "expected discharge".  Unfortunately it is NOT exactly accurate.  But at least we are seeing an end in sight.

I had told you about how we are expected to take a 40 hour course before he can come home with him so that we know how to do his dialysis at home.  The nurse who had called to try to schedule the training had specifically explained to me that he could NOT be discharged UNTIL we went through this training.

Well, this was not exactly accurate.  I got a call from his doctor on Saturday morning trying to work out the scheduling/discharge plans etc.  What we were NOT told  ( and if I could just have a nickel for every time I've used the phrase "what we were not told" the past two months, I'd be a rich woman, I just have to say)...   
Anyway, what everyone involved neglected to explain to us was that Micaiah actually has to be discharged BEFORE the training because he is PART OF the training!
I will admit I was very frustrated and told that surgeon so.  We have never done anything like this before.  They are the ones who know the procedure.  How do they neglect to tell us details like this?  This makes a huge difference in the already very sketchy plans.

This means that instead of him being cared for in the hospital while we get properly trained, they actually are expecting us (in our case, my oldest son) to drive out to the next city every day WITH Micaiah, transporting a medically fragile boy who just got out of the hospital in and out of the freezing winter weather (two things he very much hates: the cold and being moved or transported) and that this is supposed to happen back and forth five days in a row, with Micaiah being there outpatient for the whole week.  I do not feel this would be wise for him at all.  And if anything were to happen that week, if he were sick, or anyone couldn't get him there, we would not yet be trained or have the equipment at home to do his dialysis, and we would have an urgent situation on our hands.  But we were now told that the training is done out-patient only (the opposite of what I had been told all along) and now we were scrambling again to figure out how we could possibly arrange this.

I proposed that if we were the only family being trained -- and he believed we probably were -- and since we would be getting the equipment in our home anyway, wouldn't it be far more preferable and logical to have the trainer come out to our home and teach us how to do it in the place we would be doing it, even if we had to pay their travel costs, than to have all of us transported to a training center?    So, the doctor told me he was going to pitch that idea and really push it since our "situation is unique".  We're praying they will somehow work out a way to do this.

They will be doing Micaiah's dialysis with the peritoneal dialysis all this week to make sure it is working well.  They wanted us to do the training the next week, but only told us this on Saturday and we already have a packed week with long-awaited (and some already re-scheduled) appointments for our other kids from Raleigh to Charlotte.  It is impossible.  So they said that they would try to schedule it for the following week.  So that is where we are on that right now.  Frustrated, but progressing.



More importantly, how is Micaiah doing?  Well he was more animated and happier than I have ever seen him.  He played with Maggie and seemed to enjoy it.  The nurse chatted with us for a long time, which was very helpful.  She told us that he very rarely plays with any toy or book or anything other than his tablet, so she was pleased to see Maggie showing him how to use the Magna Doodle and him cooperating.  




They brought his dinner while we were there and he was very happy to eat everything but the broccoli.  Then we asked him to show us around.  He wheeled out with us to the nurses' station (which is right outside his door) and he remembered the names of all of the nurses.  I should also mention that the tablet he uses for his music he also loves to take pictures with.  He had taken hundreds of pictures of the nurses, dialysis, his room, his toys, himself.. LOL.   And he showed us all of these as well.  

The nurses all seem to love him.  They play with him a lot, and he is spoiled and teased and teases back and loves it.  I don't see how he could possibly be getting better care than here.  

He played with Maggie in his wheelchair.  Maggie ran in circles around him and he tried to catch her.  He laughed and laughed, which is progress, because in the past he had not been receptive to this sort of play at all.  For one thing, he would have gotten angry over not being able to catch her, and while I saw a couple twinges of that brewing, he never did get really upset.  Secondly, he was going very quickly and recklessly around in his wheelchair with no complaint.  This is the boy who would absolutely refuse to go up or down a wheelchair ramp both in the Ukraine and when we first got home.  He would plant his hands firmly on the wheels of his chair and say "No" and when I would force him to go v e r y   s l o w l y  up or down a ramp, he would protest and whimper and fuss the whole time.  Now he is tearing around the halls and chasing Maggie in circles.  Progress!  



He wanted to take lots of pictures of us, and wanted Art to take pictures with our camera of him with us.  Maggie was awesome, as usual.  She has a heart as wide as the sky and made him play lots of things with her. She makes up games and learning activities too.  She is like this with Levi too.  She doesn't really take no for an answer and just cheerfully says, "Come on, you can do it!"   They went into the play room and played with balls and a piano.  He played for a while trying to roll pool balls into the corners on the table.  This took a long while, but he enjoyed it.  You can see the difference in his face between now and his past photos.  



He is also learning a lot of English words and progressing with that as well.  He does not know near as many words as Levi yet, but the fact that he is willing to learn, and is using his English, is great.  As  you can see in the photo above, he is relaxed, happy, and looking well.  He has gained some weight while in the hospital as well.  We were told that after his last surgery a week ago, he had some very hard days where he would not talk to anyone or do anything, and would get pretty angry.  They thought it had to do with pain and discomfort, so when he was actually crying, they called in the translator to try to find out what was wrong.  Turns out he was upset because he did not want to be in his bed; he wanted to be in his wheelchair up and about.  


For those who are praying for us, please pray that they will somehow work out our training so that it will be as convenient as possible, hopefully in our home.   Also pray for us as we continue to adjust to all the appointments and routines (added to those we already had) and that our attitudes will be good.  It is easy to get discouraged in the midst of all of this and feel like there is no end to it all.  Well, that's speaking for myself.  Art is awesome and takes it all in stride.  He is a rock.  He burns the candle at both ends and in the middle just with working ten to twelve hours a day and then caring for things at home and then at the hospital.  I picked a good one there.  



And now for the Cuteness....  

I realize that there are many people who won't be interested in this at all.  I went to download the pictures from the hospital and realized that all the rest of the pictures on the camera were of our new pets.  In the midst of chaos and distress, there are these little buddies that make us smile each day.  





Rhubarb sleeping on Eden's lap.  Ruby is very social and loves to sleep on people, beside people, on top of people and with people.  Nobody's complaining.  She's sweet and adorable.







Couldn't resist the sherpa hood.



I was sitting on my office chair, and Ruby jumped up and crawled down my side into my sweater.  Then a minute later she was quiet.  I opened the side of my sweater and saw she had curled up on the edge of my sweater like a hammock, and had fallen asleep.  This kitten knows how to sleep anywhere and loves to sleep.




And this is Candice and Canaan's new puppy, which incidentally lives at our house because he is too big to live at her apartment, and because they work and nobody would be around to care for him.  So, basically, a new Baker household member.

Introducing:  Sir Douglas, Duke of Waffleton,
aka
Waffles!

He's a wall-eyed, goofy, energetic mix of who knows what.  



When he first came home a few weeks ago, the kitten would hiss at him, and even Biscuit was pretty suspicious.  But he waffled his way into their hearts and trust, and now even Ruby plays with him.  Pizza is still undecided.  






When I look at these pictures, I can't help but think about how much my Grandfather would have loved to see this guys.  He loved animals so much, and these ones are pretty cute!











The kitten loves to curl up in Hannah's hair.  And Hannah, as always, loves all animals.





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Friday, January 17, 2014

No news is... no news

Some have asked how Micaiah is doing and if there is anything new.  He is still in the hospital and continuing to progress.  He had the surgery to place the catheter so that he can have peritoneal dialysis instead of the dialysis where we would have to go in to a center three times a week for several hours.  The peritoneal dialysis is a type that can be done at home which is very good.  It does, however require training to do, which I assumed would be going in for an afternoon to be taught how to do it.  But no.  Apparently it is a five day, 40 hour course.  I was really surprised.  Again I thought we were in an impossible spot, but my son has agreed to take the course.  I asked the social worker who is scheduling the course how people are able to do this.  When people work and have children and jobs and school, who can do this?  She said that people take vacation time, but she also realizes that other people are prepared for this, and know far in advance that they will be needing to do it and plan accordingly.  She said obviously our situation is quite different.  Yes, we used up all our vacation time (and more) just getting him home! 

So Micaiah is continuing to heal and yesterday they tried the peritoneal dialysis for the first time.  It did not go as well as they hoped and they will continue to work towards getting him on that process.  He will not be allowed to be discharged until it is working well, and when we have completed the training to do it at home.  So, we are looking at at least a week more, if not two.  Meanwhile, he has been getting OT and PT and has been getting up each day to wander around the halls in his wheelchair which he enjoys.  He is comfortable and being very well cared for.   We continue to visit him every day, mostly my husband. 

Levi is continuing to adjust to being in a family and is a delight.  Every day he makes us smile and laugh.  He is grasping English very quickly, and he is just a very happy and pleasant boy.  He will be starting school at the Newcomers' School on January 28th.  We toured the school today and registered him.  It seems like it will be a very good fit, but if we decide it is not a good choice for him, we will just bring him home again.  I am nervous about this, but am hopeful of all the good it may do for him. 

So this is not a lot of progress, but it is all that is happening right now.  We continue to wait for things to move forward. 

Friday, January 3, 2014

To Clarify About Micaiah:


Since I wrote our last update I have had a few people contact me privately with their concerns about Micaiah.  It has been a hard path for us, and it seems in my description I made it sound as though he is withdrawn or even depressed or “closed off”. You might picture a teenager who has been traumatized and is sitting unresponsive and staring at walls.  This was not an accurate description and I apologize.  I went back and read over what I wrote again and I can see how readers might misunderstand.  I would like to clarify:

 

Firstly, and most importantly, Micaiah is not unhappy.  I feel it is very important for people to understand this.  On the contrary, if you visited him, you would perceive him to be quite content.  Ironically, he may be the most comfortable he has been in many years, possibly his whole life.  All his needs are being amply met, everyone he meets is overly compliant and helpful and kind to him, and for once in his life, his physical sufferings have been alleviated.  He plays around with the nurses and laughs quite a lot.  Anything he wants or asks for, he pretty much gets.

 

As for communication, we do, also, have several friends who speak Ukrainian and have helped in translating with him.  We have even had a couple of doctors who have come by who know Russian or Ukrainian and have chatted with him.  They all tell us that he does not have a whole lot to say, and it is all at a very elementary level.  He has no questions or curiosity about his condition, and when given opportunity, always says that he is very happy and doesn’t need anything.

 

When I described how he only showed interest in his music, it seemed to paint a picture of a sullen or withdrawn teenage boy who is focusing only on music.  Picture, instead, a much younger boy who is quite content with his music toy, and simply intellectually has not much interest in anything else.  He does love to play around with the nurses, grabbing their badges, pulling their hair, trying to tickle them when they are working on him, and laughing hysterically when they ask him to cooperate and he doesn’t.  He laughs a lot.  He has learned some of the nurses’ names, and my husband has worked very hard with him to teach him the English numbers from a deck of cards, and how to use a Pez dispenser.  He likes to play with a Nerf gun he was given, pretending to shoot at things.  If he shoots at my husband and my husband pretends to die, he laughs hysterically.  He has no interest in creative toys like Lego sets or puzzles.  He will look at pictures on his tablet, but not much interest in the TV in his room.  His attention span is short.  He has no interest at all in drawing, coloring, or writing.  While we were surprised in the Ukraine to find out he could phonetically read Ukrainian, we have slowly come to realize he rarely understands the words that he reads out.  It’s almost as if we were reading a word phonetically in a different language; we might make the sounds, but not connect what the word means. So while I had hoped we could communicate some through his ability to read, that has been a dead end.  We have had limited success trying to communicate through gestures and other means; he mostly just smiles or laughs, or parrots back what we say to him.

 

What we are dealing with here is not unhappiness.  He is not “shut down” and not by any means anxious.  He did show anxiety in the Ukraine when traveling by car for the first time, and by plane.  But he does not show any signs of being anxious now.  He is simply a boy who has some significant mental challenges, perhaps coupled with some institutional autism, a great deal of immaturity, and obvious institutional behaviors and delays.  My husband makes visits to the hospital for at least three to four hours every day, and the rest of us visit when we can (although we have all had the flu here and have not been able to go at times).  My husband spends long hours working with him, and has established some good rapport and bonding.  When my husband came home at 1 am last night I asked him if he thought Micaiah was either depressed or anxious and he laughed out loud.  He told me if anything, he displays the mind and emotions of a “happy toddler”.   

 

I hope that this clarifies things some and sets some people’s mind at ease who may have misunderstood him to be uncomfortable or unhappy in any way.  Perhaps I can try to get some video at our next visit to better share his situation with you.