SHE'S HOME!!!

Weekend at home

I am so happy to report that we had a wonderful weekend at home with Oksana!  We picked her up Friday from school and took her to order new glasses.  The ones she is wearing are not in good shape, but we refused to buy new ones while she lived in residential since they don't take good care of things.  They are pink and she can't wait to get them!  Friday evening we went to a spaghetti dinner that was a fundraiser for a family adopting a child from China.  The girls loved it!  The boys had other plans so they didn't go.  By the time we got home the girls were exhausted and ready to go to bed.

Saturday we spent the morning just relaxing and hanging out.  I mentioned last time that seating was an issue and that she was trying to do things she could do before but can't  now.  We borrowed a chair that worked great for Oksana.  I think I only had to pick her up once or twice the whole weekend!  We also had a heart to heart with her about her body and what is happening.  We encouraged her to listen to her body and trust it when it is telling her it needs rest.  It made a great impact on her and she did so much better this weekend!  Her aunt came over for a little while and she got to meet her new cousin for the first time.  She loved that.

In the afternoon we went to see Anya cheer at a local college.  Two of the buddies on the team are cheerleaders at this college and they arranged for our squad to cheer at the half time of the basketball game.  It was SO MUCH FUN!  My favorite show yet.  Oksana did great.  She got ticked off once but it was easily resolved. Anya absolutely loved that Oksana got to see her cheer.  When she was doing her cheer she saw Oksana and started yelling her name!  Anya was one of my biggest fears when it came to bringing Oksana home and she has blown me away.  She has really taken on the roll of helper and has accepted her back without a second thought.  I think she sees the difference.

Saturday evening we watched a movie together and the girls were off to bed to get ready for Sunday.  Sunday morning Oksana was back to church for the first time in probably 8 months.  We kept her with us and just hung out and visited people during the service.  I have to admit it was awkward for me.  Oksana has changed a whole lot since she was at church last.  The difference is shocking.  I felt like all eyes were on us, but I'm not sure anyone knew what to say.  It's a large church so the ones who know us know the situation but it's still very different to hear about it than to see it.  Oksana loved being back though and when she comes home for good one of her respite workers will be her one on one so she can go to children's ministry with kids her age.

Sunday afternoon we had lunch and prepared to take Oksana back to residential.  She didn't want to go and we didn't want her to, but we kept saying "This is your last visit at home" and then she would say "Because next time it's for good!"

She did have a couple of times this weekend when she got ticked at us.  It was actually good to see since I didn't want this all to be honeymoon.  She worked through her frustrations fairly easily (compared to normal) and we moved on.  I was very pleased.

So here's where we are going from here.  Tuesday we had an IEP meeting to decide where she will go to school but she is pretty complicated so we didn't make a decision yet.  For now she will transport from home to the school she is currently attending.  More on that as it develops.  Luckily we have a great team working on this and I adore her teacher at her current school so it is all good.  Today we meet with Crider and Regional to work through any last minute details before she comes home.  Friday we have a family therapy session with her.  As of right now I'm thinking we will keep her at residential over the weekend.  Then on Monday she will go to school, I will head up there in the afternoon to fill out all of the discharge papers, and then I will bring her home for good!!

It's been a crazy journey, but we are so at peace with where we are right now.  I know struggles will come but this 6 months has brought much healing to our hearts.  Here are some pictures from cheer:

She wasn't too sure about them at first but once she figured out they weren't so bad it was kisses all around!

Ashley is Anya's buddy for cheer and she is also a cheerleader at this college.

Anya insisted that they all get on their knees!

The mascot that she is touching was so sweet!  She (I found out it is a female in the costume) sought Oksana out during the game to interact with her.  She loved it!

Anya's teacher and two paras came to see her!

Anya's respite worker and her sister.  They are awesome!

Our new normal

Oksana is coming home at the end of the month.  Because of that we have been increasing the length of our visits with her.  This weekend she spent the night here.  Overall it went incredibly well.  She was well behaved and seemed to really enjoy her time back home.  We had a theory that if we let her be in control of whether she walked or not she would choose to walk.  We were right.  She uses her walker for everything, but we did get to see her take a few independent steps.  It looks totally different than it did even 6 months ago.

We got our adapted van this weekend and it is absolutely wonderful.  Because of it we got to run 3 errands with Oksana that we would have not done or left her home for without it.  I love that it is allowing us to include her in so much more.  The van is so much safer.  She just didn't have the upper body strength to maintain and upright position in her booster and she kept falling over.  She also loves the ease of getting in and out of the van.  It was a major ordeal for her before this which is much of the reason we didn't take her with us anywhere if we could avoid it.  She still can't keep her head up long, but when she gets her wheelchair (she is currently in a loaner) it will have head support as well.

The good news about Anya is that she seemed to easily adapt to having Oksana at home and acted no differently with her than she does without her.  The bad news about Anya is that with or without Oksana she has been a royal pain in the butt.  We are bringing her behavior therapist back in and we are having her evaluated for ADHD at the end of March.  I hope I survive that long.

Here's the down side.  Holy moly is it hard work caring for Oksana now.  She will sit on the couch and fall over and can't get back up.  

This happened over and over and over again.  We are looking into alternative seating for her because we spent a LARGE part of our day picking her up either off of the floor or the couch.  Then she will walk across the room (with her walker) and since she doesn't steer well she will run into something and need help getting unstuck.  Then she will need to go to the bathroom so she needs help in there.  Then she will get too close to Anya with her walker and we have to watch because Anya will just push the walker out of the way without considering that it will make Oksana lose balance.  Then Anya needs something but while I am with Anya Oksana falls over again so I have to go help Oksana up then got back to Anya.  Do you get my drift?!  All Larry and I did all weekend is manage the two of them.  We were exhausted by the time we brought Oksana back!  We had a good talk last night because this can not be our new normal.  Everyone will burn out if we keep going like that.  We will adapt everything we can to help some of the physical part.  Like Larry said, Oksana thinks she can still do everything she did before and she just can't.  We also said that it is fine for one person to be alone with both of them as long as that person has nothing else to do.  No dinner, no visitors, no anything that takes your attention off of them. 

Now I don't want you to read this as complaining.  We are very excited to have Oksana home.  I cried when I dropped her off yesterday.  This is our new reality and we have GOT to make some adjustments or we will be fried.  Another thing we have to do is get back on regular dates with each other and our boys.  The only people who got any attention at all this weekend were Oksana and Anya.  That has to change.  I'm thankful for the slow transition home so we can make adjustments as we go.

On Friday we will pick her up from school and she will stay with us until Sunday.  2 weeks to go!

Question

I got asked a question that I wanted to address.  The question was whether or not Oksana understands what is happening to her.  The answer is yes and no.  Obviously she notices that she can't do things that she could a year ago.  She kept hearing us saying the words neurodegenerative disease and asked what that means.  I explained to her that it means that her brain is telling her body that it can't do the things that it used to do.  She accepted that answer just fine.  Now if she is struggling with something she will say "My brain is telling me I can't do that."  I have mentioned that she probably will never walk the same as she did, but have not told her anything about the continued regression.

Last week we had a meeting with the residential staff.  They told us that one day they went to wake her up from school and became very concerned because they could not wake her up and she was really out of it.  They called the nurse in.  Everything was fine.  I'm not sure what that was all about.  It could be that she isn't sleeping well so she had a hard time waking up.  The other thing that comes to my mind is that she may have had a seizure.  She has never had one but they are part of many of the neurodegenerative diseases so I won't be shocked if they start at some point. 

We also decided that she is definitely coming home at the end of February.  This month we will be increasing the length of her visits with us.  Thursday I am going to get her at noon and I am taking her to to her old school to visit everyone.  Then she will stay with us through dinner before we take her back to the residential center.

Tomorrow Regional and Crider are coming out to talk to us a bit more about preparing for her arrival home.  

Still waiting for news from genetics.  I think we have about 4 more months to wait.  The wait is killing me.  I just want to know what we are dealing with so we can face it and move forward.

Such an emotional day

Here are just a few of the things that happened today:

Last night I was contacted by a woman whose daughter wanted to sell bracelets at our school's book fair to raise money for our adapted van.  The girl went to all of the 5th grade classes and asked them to participate.  The kids all went home and made bracelets and they started selling them tonight.  The book fair is 4 days long.  They made $125 on day one.  This girl never had classes with Oksana.  Her mom heard about our fundraiser when someone shared it on Facebook.  She told her daughter about it and she remembered Oksana.  That is all that it took for this sweet girl to jump into action.  We got to meet her and her mom tonight.  We were introduced to a bunch of kids who had been making bracelets.  I'm speechless. 

A couple of weeks ago I was doing some research and I found a woman from St. Louis whose daughter had Niemann Pick Disease and had passed away 5 years ago.  I contacted her through Facebook and we got to talk today.  I can not begin to express what a blessing it was to talk to someone who had been there, done that.  At one point she said "I saw your daughter's picture on Facebook and I immediately knew she had a neurodegenerative disease.  She looks just like my daughter did." I was able to ask her some simple questions that I had been curious about and had no one to ask.  I even found out that her daughter and Oksana had the same GI doctor!  She was such a blessing to me!  I'm working my way through her Caring Bridge page.  It's hard to read but it is preparing me well for what we might face. 

I also got an email today from Oksana's teacher.  She told me that she had seemed very tired the last 2 weeks and that her fine motor skills were getting to the point that she almost always needs hand over hand assistance to write anything.  It also seems that her psychosis is getting bad again.  So far I'm not overly concerned about it but we do need to keep a close eye on it.  I'm not sure what another psychotic break would do to her.  She was never the same after the first one.

I'm thinking that pretty soon I am going to need to start a Facebook page or a Caring Bridge page to start to document only about Oksana and let this blog be more family updates and general updates about Oksana.  I'm still pondering the best way to do that. 

We will go see Oksana tomorrow and then we have a meeting with her residential staff to make sure everyone is on the same page and have everyone touch base again.  No news yet on when Oksana will come home.  Medicaid is being a butt (that's the nicest thing I can come up with to call them ;)).  One step at a time.

Oksana updates

We heard from Make a Wish and all of the initial paperwork is in.  We are now waiting for the doctor to confirm eligibility before we can move forward.  I'm nervous and excited!

Oksana saw her psychiatrist a couple of weeks ago.  She said we are definitely dealing with something neurodegenerative.  Not that I didn't believe the geneticist, but it's helpful to hear it from doctors who have known her for years.  We didn't make any changes to her meds at this point and we are going to see her again after Oksana comes home.

She also saw her GI doctor for a follow up after her hospitalization to be disimpacted.  Her belly is looking good and the medication is doing it's job to avoid this happening again!

Last I heard 95% of the paperwork was completed to submit her equipment to insurance.  By now it should all be done.  I hope we hear their decision soon!

Medicaid infuriates me.  They might be the sticking point to getting her home as soon as we had hoped.  That's all there is to say about that!

Our seating and mobility guy came over a couple of weeks ago to look at our bathrooms and help us with adapting them and he brought us an amazing bath seat for free!  Another family got it and only used it once.  They told him to donate it to another family and he immediately thought of us.  It's so cool! Here are some pictures:

We found an adapted van too.  We have searched high and low for the best van for our family at the best price.  We found it in Maryland!  As of right now we have put some money down to hold it.  We know someone in the automotive industry in Maryland who is going to go take a look at it for us.  If he feels good about it we plan to purchase it.  My dad lives in Maryland and he is going to drive it here for us!  We are trusting God to help us get this van.  We have started a fundraiser here:

https://www.youcaring.com/oksana-loraine-503973

We also plan to have a trivia night in April to raise some money.  Needless to say we are staying very busy trying to get this kiddo home!

Make a Wish

On Thursday I ran Evan to the doctor because he clearly had a sinus infection that wasn't going away.  While I was there I asked to speak to Oksana's doctor.  Her doctor has been with our family since Clayton was born, but now they boys go to a male doctor and the girls go to her.  We are very close to her and she has been an incredible support to us.  When I saw her she told me that she had gotten the genetics report but she was confused why they thought neurodegenerative.  I showed her the picture from Wednesday and she was shocked.  We talked for awhile.  She has a number of kids with in home health care so she said she could help us navigate that when it was time.  She also has a family who lost a child to a neurodegenerative disease.  That family never did get a name for the disease :(.  She said when I am ready she will try to connect me with the mom so I can talk to someone who understands.  I  mentioned to her that if I could find one teeny tiny blessing out of this horrible situation it is that she has always dreamed of going to Disney.  I told the doctor that when we get a diagnosis we are going to contact Make a Wish.  She told me I should not wait for a diagnosis.  She said that she clearly has a degenerative disease of some sort and if we wait too long she may not be able to enjoy the trip.  I sent an inquiry the same day.  I'll let you know when I hear back.

I will see Oksana on Thursday.  She will be seeing her psychiatrist and then I think we will meet up with the rest of our family for some ice cream or something.  I went from fearing her coming home to wanting her home ASAP.  Regional is doing everything they can to get care in our house as soon as possible so we can bring her home.  We also asked the seating and mobility company for a loaner wheelchair.  In the one she has now this is how she sits:

You can remind her to sit up but she can only maintain that position for a short period of time.  We want her to be able to enjoy what she experiences and  you can't do that if you can't even see what you are experiencing!  The loaner wheelchair will help until she has her own because it will have a harness to hold her up.  We are also looking into adapted vans and considering a fundraiser of some sort to help pay for it.  I'm not sure what that will look like, but it is being tossed around.  The van will be necessary though.  The wheelchair weighs 40 lbs and Oksana weighs 70.  I weigh 105.  I can't lift her into the van much longer and she really needs much better support than even her car seat can give her because she has no upper body strength.  One step at a time but there's a whole lot swirling around in my brain!