Visited the Preschool

I did in fact go to visit the preschool that our psychologist.  It is pretty special.  The ratio of teachers to students is 4:1 or better with a maximum of 7 children.  Each family has a consultant who is a psychotherapist, M.D., psychologist or similar.  The teachers and consultants meet weekly to design the program for the children with therapies and interventions for each child.  Wow!

They are full right now, of course.  If we still feel the need, we will talk to them in the summer or fall.


http://walnutlakepreschool.org/index.html

EEG Results

Little Bear's EEG results came back normal.  We have also had speech and OT/ Sensory testing done through the school and will have it done privately as well.  Thus far all is well.

Exceeding all Exceptations

For all that Little Bear challenges us (and he does) he also never fails to exceed our expectations.  When we signed the papers to adopt him, I had never even seen the extent of Little Bear's special needs.  He was ours, and that was that.  I expected for him to have both legs amputated at the knee and to be dealing with prosthetic limbs so that he could be fully mobile.  I believed that there might be things he could never do.  Boy, was I wrong! 

Little Bear's birthday present last year was a bike.  A few months he went rollerskating for the first time, and just last week he began to walk on the balance beam by himself.  (We go to a great gymnastics school.  The owner/ head coach once asked when Bear was going to join.  I said that I didn't know that gymnastics was going to be his thing since most gymnasts needed fibulas.  He just shrugged and said that they'd get him on pommel horse.)  All this from a child who, when he goes to the doctor gets the very real question, "Can he walk?"

You rock, Little Bear!

Testing

Little Bear had an EEG today.  The neurologist is trying to rule out seizures as a reason for some of Bear's behavior problems.  We should have the results in a week.

"Look Mommy, we're playing so nicely!"  the little guys just told me (with a little bit of wonder and amazement  in their voice.)

Little Bear's hip is doing well.  I guess when you have this much going  on in your legs things just look a little catty-wompus.

Sacred

I am scared that Little Bear's hip is once again dislocated.  If you have  a minute, please say a prayer for us.  I don't know what treatment there is if these surgeries have failed.  It make me sooooooo angry that he was never treated in Russia.  Most children who have hip dysplasia, get treatment as an infant and never have problems again.  Instead they put off a not so invasive, if annoying therapy, forcing his into what will almost certain;y be serious arthritis and a hip replacement. later in life.

Little Bear got tubes in his ears this morning.  He had fluid in his ears and had for many months.  It wasn't infected, but it never went away.  We are hoping that it will improve is speech and vocabulary.  I know he can already hear better.  I'm also hoping that he will realize how loud he is and bring the volume down a little.  In the back of my mind I am hoping it will also effect his behavior if he is hearing better and not so tired.

Impared Relations

God meant for us to live in families.  He made man and then woman and then they made babies.  That is just the way He designed it, and my experience is that when you don't follow God's plan you always pay for it in some way.

This is demonstrated so clearly by Little Bear's difficulties in adjusting to family life.  He is relentless in getting what he sees as his needs met.  Of course, frequently his "needs" are things like food whenever he feel like it.  (Note: many children living in orphanages come to their new families are severely undernourished.  This is not Little Bear's case.  He is at the 50 percentile for weight even though he is not on the chats in height due to his fibular hemimelia.  He have been told to watch his weight closely so that he does not get overweight and strain his joints.)  Other needs are decimating the competition and being the only child in Mom and Dad's affections- the competition being his little sister.

The severity of his maladjustment is really only beginning to become clear as he begins to really master the language and become more expressive.  He is also beginning to trust us more and act less like a threatened animal.  Little Bear has mild food hording impulses.  He does not want to throw away food or give food he does not want to anyone else.  He lashes out, usually verbally, at the other children when he does not like what i am telling him, and he has a very hard time admitting when he did something wrong. 

I worry that he does not understand the limits that we have to put on his actions.  Pookie has many more privileges than he does but she has earned them.  For example, Pookie sat with her brothers at a tae kwan doe demonstration the other night, but Little Bear had to sit with one us.  But Pookie is going to stay where she is.  Little Bear would start with the older boys, but then begin to roll around kicking other and eventually try to walk into a black belt demonstration.  I worry that he will think it is because he is adopted, not because she is more mature than him. 

On the other hand the biting and spitting have all but disappeared and these challenges are working themselves out.  Bear clearly favors us above others come to us for comfort and support and that show a good attachment.  I feel like I am climbing Everest:  it's hard, slow and sometimes it's hard to breathe, but I can see we are moving in the right direction.

Little Bear Update

Little Bear has been out of his second spica cast for almost four weeks.  This time he started to walk after only a week.  He is still not very strong and his gait is very awkward.  I think that his body works differently and he is struggling to figure it out.  He also seems to be having more trouble with his feet.  He doesn't seem to have enough "foot" to balance on.  I don't remember his having such trouble before.  All in all, I am very pleased with his progress

The cast is off

Snuggling with Daddy

Little Bear's cast came off about a month ago.  He has three amazing scars on his right leg.  One runs the length of his thigh.  One is on his hip and there is one in his inner groin.  I was so thrilled to get that thing off because he had had several diaper leaks and the cast was beginning to  . . ahhem  . . . have a bit of an odor. 

Before the cast came off I was shocked by how well Bear got around.  He spend most of his waking hours on his belly because it gave him the most independence.  He could also roll from front to back, so he could choose what position he wanted to be in. 

The first day he spent a very long time in the bath tub not only relaxing and getting clean, but also allowing all that the skin that he had not shed slough off.  It took a little while to get him to try but he started crawling pretty well in about a week.

Medical Miracle

We spoke to Little Bear's surgeon yesterday.  She reported that she had spoken to several colleagues and nobody had any "hot ideas about what to do about his feet because there is no reason they should be working so well."  Huh.

More Good News

We met with surgeron that be woking on Bear's hip.  She is hoping to schedule the surgery for some time this month.  Little Bear will be in a spica cast for six weeks.  A spica cast goes from waist to either knees or feet.  Six weeks is more than I'd like, but less than I feared.

She also said that Bear doesn't really have club feet.  He has something called rocker-bottom feet, and Dr. Farley said that it is related to the tibal hemimelia.  I got the feeling that she was surprised by the number of issues that Little Bear has. We're still not sure how treatment will proceed for his legs and feet. but we have time for all of that later. 

The last of my news is that we have been blessed with the offer of help from a friend's daughter.  She has not found work for the summer and is lloking to add child care experience to her resume.  Cheala may really keep our chestnut out of the fire in regards child care and keeping the house from exploding as we care for Bear.

Misdiagnosis

Yippee!  Little Bear was misdiagnosed while in Russia.

For all of you that may not know, Little Bear has pretty significant limb differences.  I didn't mention it in posts because I decided not to make a big deal about it.  He was diagnosed with "tibia anomalies, hip Dysplasia and club feet" while in Russia.  We weren't really certain what would hold up when he got home and what would prove to be a non-issue as Russian physicians diagnose very differently than American doctors.  (As a matter of fact I think our family doctor was terrified when he read the medical abstract.  "You were looking for a special needs child, weren't you?" he asked.)

In all the reports that we have, he is labeled as missing his tibias.  I was really worried because the tibias are the weight bearing bones and most of the children that I have heard about who are missing tibias have had to have their legs amputated.  Today was our first appointment with the orthopedist and we were told that this is not the case.  He is missing his fibulas, which is a much better bone to be missing. 

His right hip is out of its socket and that is much more serious and we will have to have surgery for that.  In fact it sounds as though the next year will be a series of surgeries.  At some point after the hip surgery Little Bear will also have to have his tibias straightened and possibly lengthened.  (I bet that is as much fun as it sounds.)  His feet will also have to be straightened out as they are clubbed. 

The doctor said that there is much more positive than negative going on and what Little Bear has is in good shape considering the complexity of the deformities in his lower limbs.  (I hate the word deformities, but we have to face facts.  His limbs were formed wrong.)  Overall, it was a very positive visit and I'm ready to start the process and get Little Bear's legs in the best shape possible.

Introducing Little Bear

It took me a little while to decide on a blog name, but from this point on we will be calling Little Bit "Little Bear."  It seems to fit his personality which can be grumpy or sweet and playful at a moments notice.  He is also not a skinny little thing and actually outweighs Pookie by several pounds.

We are all home and safe and transitioning well.  We had a bit of excitement  because we forgot a document and I decided to deliver it to Russia instead of sending it.  Charlie had such a tough trip and we just wanted to get everyone home.  In the end everything worked out well and I'm happy that I went. 

Our Little Bear is transitioning to his new life.  It has been bumpy.  I'm not going to lie.  He is a championship tantrum thrower and that wears on me.  Something as simple as you can't sit on the table (which I'm sure is not a shock to him.  I can't imagine that his caregivers let him pull things like that.) will send him to the floor screaming.  On the other hand he is funny and affectionate and sweet (but not indiscriminately so.)  All in all I am pleased with the attachment process and it is exciting to watch it grow everyday.