365 Day Photo Challenge

Days 102-111

She loves to swing!

We had a black and white challenge and a hands challenge.  I combined the two.

What Oksana looked like most of the time after she came home.  The balloons are for her birthday which was a few weeks ago but we celebrated again after she came home.

New restaurant near us called Tom and Chee.  They have every kind of grilled cheese sandwich you can imagine.  This is their grilled cheese salad.  A salad with a grilled cheese sandwich cut up and stuck on top!

I got these at Costco and they were so beautiful!

These are Evan's ribbons from his horseback riding competitions.

A girl and her balloon.  I kid you not, she has carried that thing EVERYWHERE.  We don't let her bring it in the car because it is huge.  Every other time it is in her hands.

Sunshine, flip flops, and a maxi skirt make me a very happy mom!

This might not look like much to you but this child was so apprehensive about driving so it is quite a great picture to me!  When he started driving he refused to go over 20 or leave the neighborhood!  We hired a driving instructor and he is light years from where he was!

My favorite matroyshka.  We got it in Ukraine.  I won't let anyone touch it because that last piece is SOOO tiny.

Youth group.  This is a game called 9 square that the kids love.  The woman in the middle hitting the ball is the wife of one of our pastors.  I'm so thankful for youth leaders because that is NOT something that appeals to me at all!

Adjusting

Oksana has been home for a week now.  Having her home has given me some insight on our experience with residential.  Here is some of the good and bad.

Good:
- The staff there was very kind and friendly.  I never had any doubt that she was well cared for.  You could tell they loved her.
- It was a much needed break for our family.  We felt like we could breathe for the first time in a long time.

Bad:
-She came home a total sedated zombie.  That is more than a bit frustrating to me.  Telling me her behaviors are much better leads me to believe she is actually awake and functioning.  It's hard to be aggressive when you are sleeping.  We are already seeing this get better but the day she came home she literally slept on and off all day.  She would be walking through the living room and then she would face plant on our couch and fall asleep. 
-They did absolutely everything for her.  This child never lifted a finger there.  All of the work we did to make her as independent as possible was thrown out the window.  She started wetting her pants again so the staff would clean her up and she would get more attention.  Since coming home she has not wet her pants once.  For the first few days she has sobbed hysterically because we dared to make her dress herself, which she has done independently for years.  Now she has reduced her crying by about 95% and generally does everything she did before with no problem.  I think she is starting to figure out what life is like in the real world again!

We are definitely glad we brought her home.  As nice as they were and as nice as the break was it was getting to the point where it was doing her no good at all to stay there.  She went back to her psychiatrist and her therapist yesterday.  I am so thrilled to have her back under the team that knows her best.  The psychiatrist at the residential center spent 10 minutes with her the first day he met her, declared that all of our diagnoses were wrong...you know, the ones given by professionals that are the best in their field and have known her for years...., and proceeded to drug her into oblivion and send her home.  Not helpful.

Both the psychiatrist and therapist were a bit shocked by what she looked like.  Here's the struggle.  When she is up and moving she has no problems at all.  She is alert, moving well, etc.  The second she sits down she looks like a zombie.  She can't sit up, she drools, hangs her head down, and can barely keep her eyes open.  She is also rocking and stimming a ton more than she did before.  This morning we did a blood draw to check her Depakote levels.  If they are high then the answer is clearly to reduce the Depakote.  If they are at a therapeutic level we find ourselves in a bind.   See, she is still getting agitated and self injuring.  She has bruises and marks on her hands from where she has been biting them.  I guess it is better than ripping her hair out until she is bald (which is going to take forever to grow back).  Still, the big fear, of course, is that her aggression will come back full force if we start reducing meds.  We may find ourselves in the unfortunate situation of having to decide what level of side effects we are willing to allow to keep her safe.  That's a nice way of saying how sedated are we willing to keep her so she doesn't beat us up.

We are also still waiting on the psychiatric hospital and hoping they might be able to take her and help us sort this out.  I called them the day she was discharged from residential and they said it would be another month.  They told us that a month ago, so you can see why I have learned to stop counting on that.

The bottom line is that we are taking everything one day at a time.  She is safe and doing fine here right now.  She is back at school doing 1/2 days and that is going fine as well.  One day at a time.....

Voting Time!

I put a picture of me and Anya in a mother daughter look alike contest!  If you would like to vote for us you can vote once a day until April 26.  I would love to see adoption and special needs represented!

Go here to vote:  http://upickem.stltoday.com/engine/Details.aspx?p=V&c=170566&s=76279245&i=1&sort=ASCENDING#SD

Coming Home

Tomorrow will be 72 days since Oksana was first put into inpatient care.  Since then:

She has been in the psychiatric unit of the hospital for 19 days
She has been in a residential program for 26 days
She has been home for 23 days
The longest stretch of time she has been home is 14 days
And she has been through 7 different medications to try to find ones that will work

Tomorrow she will come home again.  Do I think she is well?  Hardly.  We went to see her on Saturday.  We brought her a picnic lunch and she could hardly stay awake through it.  She kept slumping over while she was eating, slurring her words, drooling like crazy, etc.  She started to perk up some by the end of our visit and then she became pretty easily agitated.  She is still being rude to staff and hitting them with her forearm crutches but that is mild compared to what she was doing when she started there.  The thing is the reason it is mild is because the rest of her day is spent sleeping or as a zombie.  So basically we got zombie or aggression.  This is not a child who is well. 

Regardless, we feel like we think she needs to come home.  Insurance has denied her any more days but we are ok with that.  This program has been great for keeping her safe and giving us time to breathe but I don't think she will benefit from staying there any longer.  She needs to be back under the care of her psychiatrist who knows her best.  She needs to be stretched regularly again and have her orthotics put on correctly.  She needs to be back in a setting where she is expected to dress herself and do things that she has been doing independently for years but that they do for her there.  She needs to be home where she knows that it is not acceptable to pee your pants to get attention.  We are fully aware that she may not be home long before she has to go back to the hospital, but we still think it is worthwhile to have her home.

You might be wondering what is happening with the psychiatric hospital that we were trying to get her in.  Yeah, we are wondering too.  We found out today that a female bed might not be available for another month.  We were told that a month ago.  So frustrating.

So here we go again.  Our new motto is one day at a time.  The other one is don't make any assumptions.  When Oksana left school last we thought for sure she would not be back before the year ended.  They sent everything home with her.  Of course now she starts again on Wednesday (1/2 days only).  I made assumptions that I shouldn't have based on things people told me.  I have to remember that no one knows what will happen and so I can only assume it will happen after it is already done!!

I'll update again when she is home and acclimating back into life here.

365 Day Photo Challenge

Days 93-101

Easter baskets ready to go!

Easter service at church.

Eggs!  The challenge this week was Easter.  Can you tell?!

Does this even need a caption?

Cuteness :)

Look at the size of this cloud!  It was HUGE!

This picture makes me happy.  Oh how I love this place.  And what is it about that little flat spoon?  It's so perfect!

My boy turned man.

These bird houses were made by the kids at my girls' school and placed in the outdoor classroom.

Oksana update

I can not believe I haven't updated since Oksana was put in the residential center.  Wow......I have plenty to share.  First of all she is still there.  We are still waiting on a bed to open up at the psychiatric hospital but that hasn't happened yet.  We've been close to having insurance kick her out of there twice.  The closest we came was this past Monday.  Her behaviors were definitely better (because she was a zombie on her new meds) and they told me that they didn't think insurance would let her stay if she wasn't having behaviors.  They contacted insurance on Monday, and after reviewing her case they were told that it would go to peer review.  I don't do insurance stuff so I had no idea what that meant.  Apparently it's basically that it wasn't a clear yes or no so they sent it to a higher up who called the residential center for more info to make a decision.  That was going to happen Tuesday morning but I was told to be prepared to pick her up Tuesday.  They told me that they have never had a case go to peer review and get more days.  So I told my contact person at the residential center that I wanted her to tell the insurance company that the psychiatrist planned to remove her lithium.  If that was still the plan they can go ahead and book her a room at the hospital the next week because she can not safely do med changes in our home.  I had so many people praying and on Tuesday morning I learned that we got 7 more days!  I couldn't believe it!

This coming Monday will be the next insurance review.  I am praying that a bed opens at Hawthorne soon because I don't know how long insurance is going to keep allowing this.

Let me share a bit more about the residential center.  I've been very pleased overall.  The staff has been very friendly.  I have no doubt that Oksana is being well cared for.  Their visiting hours are very relaxed so that has been nice compared to the hospital.  Oksana is very content there.  Possibly too content.  I don't think she really cares if she doesn't come home.  In fact sometimes when we visit her she ends our visits early to go back to the cottage with the kids.  She loves on the staff members and doesn't really care if we don't visit.  I had feared this would happen.  This is the closest she has ever been to being in an orphanage, this is the longest she has ever been away, and this is the least she has seen us.  This place is 45 minutes away from us so we can't go daily.  We see her every 2-3 days.  She is reverting back to some old RADish behaviors that we spent years trying to reduce.  She's peeing her pants to get them to focus on her and they aren't making her do anything for herself.  Unfortunately the price we are paying for her mental health is in her attachment to us and her physical health since her CP also isn't being cared for like it is when she is home.  Of course a psychotic aggressive kid isn't exactly one that is ready to attach or receptive to therapy so there isn't much we can do.

Another update to give is about her testing.  You may recall that awhile back her psychiatrist wanted to send her to another psychiatrist who would do extensive testing on her and give a second opinion on her diagnoses.  Yesterday I went in to get the results of that testing.  I loved the psychiatrist.  This is someone that Oksana's regular psychiatrist is one of the few people whose opinions she highly respects.  I can see why!  She came in with the DSM V (the "diagnostic bible" that gives all of the criteria needed for each mental health diagnosis), all of the forms we filled out, and her own testing.  She came with a good idea of what she felt Oksana had based on the testing results but she sat with me and looked for my input on all of them.  I've never had a doctor do this!  I find psychiatry fascinating and I had a great time answering her questions to clarify things and digging through the DSM with her to make sure we were finding the most accurate diagnoses.  In the end her report will suggest the following diagnoses:

Schizoaffective disorder, bipolar type
ADHD
ODD (oppositional defiant disorder)
autism
Disinhibited Social Engagement Disorder

Just a bit about Disinhibited Social Engagement Disorder.  In the DSM IV Reactive attachment disorder had 2 subtypes, the disinhibited and the inhibited forms.  An easy way to say it is the inhibited form of RAD is the kids who don't attach to anyone and the disinhibited form is the kids who inappropriately attach to anyone.  In the DSM V they changed it so they are 2 different diagnosis.  RAD is now only the inhibited type.  The disinhibited type is now called Disinhibited Social Engagement Disorder.  While Oksana definitely shows signs of RAD she more clearly falls under DSED.

 I'd be lying if I didn't say we are exhausted and worn down.  We are trying hard to make the most of the time that we have while she is under their care but it isn't as easy as it sounds.  I'll try to do better about updating from here on out!

365 Day Photo Challenge

Days 82-92

Race!

The challenge for the week was "reflection".  This is in the ball pit at the residential center.  Luckily you can't see the huge bald spot on the top of her head where she was ripping her hair out :(

This is a different challenge...."Obsession".  My constant obsession is Facebook.  My friends live there ;).  My current obsession is Harry Potter.  When I took this picture I was on book 5 and I just started book 7!

Chris Tomlin!  This was such a great concert.  Chris is the teeny tiny guy on the left with his arm up!

Another one from the concert.  This is Rend Collective when they shot bubbles into the audience.

This was also part of the obsession challenge.  Anya is obsessed with brushes like paint brushes and make up brushes.  She likes to have one in her hand at all times and spends her whole day brushing herself!

My new bracelet.  I love it!

The entrance to Oksana's residential center.

I love daffodils and this was right after a rain.

I have had the incredible privilege of speaking at the women's bible study at my church as well as the west campus of our church.  I shared my journey with Oksana and how God has taught me about love through her.  It's been so healing for me to share her story.  Both times I had women come to me sharing their own stories and I love that we can encourage each other!

Yesterday was Oksana's birthday!  We brought cupcakes to her class!