NAMI Walks

I am so excited because we have decided to form a team for this year's NAMI Walk!  Our team will be called Oksana's Angels.  If you are local and you would be interested in walking with us we would love to have you!  All walkers will get a team t-shirt.  There is no walker registration fee.  If you would like to you can donate to our team.  We are trying to raise $1000 for NAMI.  If you can't walk with us you can still donate if you would like to support us!  NAMI has meant so  much to us and we are thrilled to be walking for such a great cause. 

NAMI is the National Alliance on Mental Illness, the nations' largest grassroots mental health organization.  NAMI provides advocacy, education, support, and public awareness so that all individuals and families affected by mental illness can build better lives. 

They have many programs including classes for family members of people with mental illness, support groups, classes for law enforcement officers, and more.  All of these are free and paid for through NAMI's fundraising efforts.

Here is the info on the walk:

Date:  Saturday, May 30
Location:  Upper Muny Parking Lot - Forest Park
Check in: 8:00am
Start time: 9:00am
Distance:  5K or 1 mile

To donate and/or join our team go to our team website here:  https://securewalks.nami.org/registrant/TeamFundraisingPage.aspx?teamID=607971#&panel1-2

365 Day Photo Challenge

Don't miss the update I posted on Oksana right before this. 

Days 70-81

A picture Oksana drew me of balloons while she was in the hospital.

I love outside spring pictures!

The challenge for the week was blue :)

Our Apple Pi Pie for Pi Day!

Dinner in the car.  It happens a lot when Oksana is at the hospital and I'm heading out to visiting hours.

I don't even drink but I was at a chocolate bar (that's my kind of bar ;) and I thought this looked cool.

This was also at the chocolate bar.

SPRING!

Oksana at the residential center the day we admitted her.

Evan ready to watch the first Harry Potter movie for the first time.  He was so excited!

Oksana in the sensory room during one of our visits.  Someone called this "hauntingly beautiful".  There were a lot more happier looking pictures I could have used but I thought this one did a good job of capturing her inner turmoil.

He found a quiet place to read :).  He is on Year 6 of the Harry Potter series.

New Placement

It's been busy around here since I last posted.  Oksana came home last Tuesday despite the fact that I didn't think she was ready.  We had an IEP that afternoon to decide how to handle school until we could get her into a longer term placement.  We decided on half days.  She went to school Wednesday morning.  That morning I also got a call from our second choice of placement for her that they had an opening.  They wanted to know if I could bring her Thursday morning.

This is when my mix of emotions started in.  I learned that this place is not a guaranteed long term placement...it can just turn into one.  However, just like the hospital, if insurance decides to kick her out she is out.  Our first choice placement is a state hospital and she would be put on Medicaid so they do keep their kids longer.  We struggled so much on Wednesday night about whether or not to do this.  We were so worried about putting her in this placement with the chance of getting sent back home and then being sent to another placement.  It's just too much for any kid, much less one with her history.  We called the social worker at the hospital, her therapist, and her teacher to get their input, but everyone saw the same pros and cons that we did.  We finally decided we needed to just go see it on Thursday morning and voice our concerns.  When we got there we had a good talk with the man who was admitting her.  He took us on a tour, we got to meet some of the kids and staff, and we all felt really good about the program and thought she might be a good fit there.  We started doing more paperwork while he called insurance.  If they wouldn't approve her in the first place we had nothing to worry about.  In the time that we waited for an answer from insurance Oksana started asking "Did he hear from insurance yet?" over and over again.  I finally asked her what she was hoping they said.  She said she wanted to stay there.  Insurance approved us for 6 days to start and she was thrilled so we went ahead an admitted her.   We finally decided that if she did great then she could come home and maybe wouldn't need to go to the state hospital.  If she didn't do great then she needed to be there anyway.

She has definitely shown some behaviors.  It sounds crazy but everyone is glad.  If she continues to show behaviors they should be able to convince insurance to keep her longer and they can hopefully start to help her.  We still want to try to get her into the state hospital at some point but that could be a few weeks still.  This isn't exactly how I had hoped it would go but there have been some really cool blessings in it.  There is a school at this place so Oksana went to school for the first time there and it turns out that her teacher knows her!!  He works at the respite center she goes to!  She was so excited to see a familiar face.  I couldn't believe it.  We have been happy with the staff.  They are all very nice and helpful. 

As of right now she is approved until Wednesday.  Our visits have been just OK.  She has been agitated and I don't know how to explain this exactly but I feel like she is slipping farther and farther into her illness.  She just isn't the kid we knew before.  I'm sure it is some combination of the illness and the massive amounts of medication that she is on.  It seems like nothing is working. 

Quick Update

I am not a happy camper.  We tried to get Oksana into a long term facility.  The first one was full and with the second one (the one we really wanted) we had to go through a big process to be accepted because they don't normally take kids with developmental disabilities.  They were willing to make an exception but we had to provide lots of evidence that she was really mentally ill.  We did that and found out that they would take her but couldn't take her now.  Long story but basically it could be a month.  We found this out Friday afternoon so of course at that point there was nothing we could do until Monday.  The doctor said to see how the weekend went and then we would talk again Monday.  Saturday she had a very rough day.  Sunday was good.  She was convinced she had ice powers and was likely psychotic but she wasn't beating anyone up.  While you would think that would be good news, I had a gut feeling that insurance was going to use that as an excuse to send her home and I know she is not at all ready to be home.  I was right.  The doctor called me this morning and because Sunday was good they wanted her discharged.  I was so mad!  Don't they know that mentally ill people are capable of having good days?!  It doesn't mean they are well!  The doctor basically told me this is the game we have to play with insurance so if we go home and she starts up again we will re-admit her.  Every time this happens we build up evidence that she needs more help.  This isn't fair to her or to us but it is the reality of our mental health system which is sickening.

I managed to convince them to give me one more day.  I needed to talk to school because I wasn't even sure they could take a child who was in need of long term psychiatric care just because the stupid insurance company sent her home.  I also needed to make phone calls to try to get 1 on 1 help in my home so that we can survive this. 

School is trying to pull together an IEP meeting as early as Wednesday.  I have no idea what we are going to do.  She may need to go to a behavior program that isn't ideal for her just because we are out of options.  Home bound was discussed too.  I will cry if we have to do home bound.  That means 24/7 with a schizophrenic 9 year old who I don't believe is well.  Home bound gives us ONE HOUR a day with a teacher and then I will need to arrange and pay to get help during the day.  I'm praying we don't have to do that.

Basically we need to survive until we can get her in long term care.  The doctor did increase her lithium today so hopefully that will give us a bit of time without her being too unstable.  This is just insane.

Third Times a Charm?

Oksana is back in the hospital.  To make a very long story short she has not been doing well at all for about the last 5 days.  She was self injuring to the point that she was leaving horrible looking marks on her face and chest.  I couldn't even take her out in public she looked so bad.  I had seriously considered hospitalizing her on Tuesday morning.  I decided to hold out because that afternoon she was going to her second appointment for the testing she was having done to try to help us find out what exactly we were dealing with regarding her mental health.  Let's just say that appointment did not go well at all.  I asked to speak to the doctors privately to explain what she had been doing.  During that time the psychiatrist did confirm that she believes Oksana is schizophrenic.  In the meantime Oksana spent an hour and a half of her beating Larry up.  It took both of us and 2 psychiatrists to get her to the car and we went immediately to the hospital.  We were put in a room in the ER because she was agitated and we feared she would become aggressive in the waiting room.

She is doing fine at the hospital.  Obviously we know everyone there well now and she is comfortable there.  She had a pretty significant episode around 5:00 tonight.  I came in for visiting hours about 45 minutes later and she had some nice fresh injuries on her face :(.  Once she saw me and heard that I had brought glitter markers to color she snapped out of it and we had a rather good visit.

The doctors and the social worker of the hospital have put in referrals to 2 long term facilities.  Both are good places but there is one we prefer for a number of reasons.  The problem is that they don't normally take kids who are developmentally delayed.  Oksana would be an exception.  Everyone is working hard to help them understand how severe her symptoms are and that she is med resistant so we really need their help.  If they do not accept her hopefully the other place will.

We are really at peace.  Oksana is so ill now that we can not help her any more at home.  If she had cancer we wouldn't keep her here to avoid the hospital.  She needs specialized care that can only be given through long term treatment.  We have no idea what to expect as far as length of stay but we know without a doubt that we are doing the best thing for everyone involved.  We have been very open and honest with Oksana about this and she does understand that this is necessary. 

I'm hoping to hear more soon on where she will go.  The hope is that she will transfer right from the hospital she is at to the new one.  If you are praying for us please pray that she would get into what ever program would be best for her.  God has already done some pretty incredible things to help us so I have no doubt that He is watching over this child!  I'll update when I know more.

365 Day Photo Challenge

Days 63-69

I love this shot of my horse lover!

Shadow :)

This is my drug of choice!

Another one of my horse lover.  I like how you can see the dirt he is brushing off of the horse in the sun.

He loves to jump off of swings and we are loving that it is warm enough to be swinging again!

Just a kind of cool statue at the barn.

I love this picture!!  I call it "Spring".  Dirty feet, a slide and sunshine!

Now you get a bonus picture.  I didn't take this picture so it isn't part of my photo project but it is so fantastic that I want to show you.  Anya's teacher took this picture at school during Dr. Seuss week.  It's my new favorite.  Check out the pose ;)!

Oksana

I'm having myself a little pity party today.  I noticed shortly after Oksana came home from the hospital, that in activities that she had been doing independently for years she suddenly was completely scared that she would fall.  She freezes, starts shaking, and freaks out, yelling "Help me!  I need help!  I'm going to fall!"  90% of the times these are situations where there is no way she will fall.  If she is absolutely confident that the surface she is on is perfectly safe and you don't ask her to make her feet leave the ground at all she is fine.  She walks around the house like nothing is wrong, but then put her in a chair where her feet don't hit the floor and she totally freaks out.  Put her on a sidewalk where she has never been and she freezes with fear.  It's insane!

So I contacted her psychiatrist on Tuesday and she suggested that we reduce the clonidine.  She said she thinks it is making her dizzy and that if it doesn't stop we might have to remove it all together.  We did that and did see some change but not near enough for her to function!  At this point we cancelled her PT because we would accomplish nothing.

Today we went to see the psychiatrist.  I came with a list of behaviors that we have seen since she was discharged.  After reading them she told me we could remove one dose of Clonidine but that if her behaviors came back we had to add it back in.  In the meantime she is checking her lithium levels to see if she can increase it. 

I expressed to her how hard we had worked to get her where she is physically.  She told me to just look at it as a step back and that her therapists are going to need to go back to some more basic skills.  After some discussion I told her that I thought the day would come when we would have to weigh her physical health with her mental health.  We are there and I hate every single thing about it.  Both of her physical therapists have been awesome.  They both agreed that her mental health is the highest priority right now and they will do everything possible to help her on their end.  Now I'm looking at possibly increasing her support again with a second crutch to see if that might help her.  I guess if worse comes to worse we will go back to a walker.  I'm really trying to avoid that.

Other than that things are just up and down right now.  She is still self harming to the point of leaving marks on her body.  She is still aggressive though it is not nearly as often or as intense.  The psychiatrist said she will still have behaviors like this.  The problem comes when she is going at it for hours.  We are in close touch with our Regional Center Caseworker and she is working hard to get us some more services.  Quite frankly, this last month has done us all in.  This is not going to get magically better.  In fact she is about to hit puberty so likely it will be the exact opposite.  We are working hard to get more services in place so that we are ready.  We have 3 other children to care for and we can't live like we have been where 110% of our focus is on Oksana.  We need some more support so that we can take care of the rest of our family. 

This coming week is spring break.  I don't think I need to say any more!  At this point I'm just hoping we all survive!

365 Day Photo Challenge

Days 55-62

Our crazy dog running like the wind with her kong!

Evan having fun in the snow

Part of our church at night.  I love this place :).

Our first date night from Larry's birthday present!  This was our instructor and another staff member during the climbing class that we took.  We had so much fun!

The Stinker...

Pumpkin and banana muffins.  My family was happy!

I adore this picture.  Upward sports had a big celebration night to mark the end of the season.  Larry is on electric guitar on the left and Anya is dancing her heart out down in front of the stage!

This sign actually brought a wide range of emotions out in me.  First, I felt sad that I had to park there.  Then I felt embarrassed to be parking there.  Finally, I just had to laugh because I think that is the first sign I ever read that said you will be booted!  This was from day one of Oksana's testing.  I'll post more on that tomorrow.