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.