If you are bored and have 20ish minutes to kill here is a video of the talk I did for our women's Christmas event at church. It shares a bit of what we have been through and how it is changing me:
https://vimeo.com/148680406
Monday, December 28, 2015
Wednesday, December 23, 2015
Hello from the hospital
Well, we went to see Oksana's GI Doctor this morning and she said we were going to have to hospitalize her to have her disimpacted. Ugh. I could have waited but with 2 days to Christmas I decided to just get it over with. Now she will be comfortable on Christmas. We are sitting here watching movies and listening to the little machine pump the stuff in her NG tube that will clean her out. It's going to be a fun night. :/
Thursday, December 17, 2015
Another diagnosis?
Yesterday I took Oksana to the genetics clinic at our local Children's Hospital. They are doing whole exome sequencing. If you don't know much about that....well neither do I! Basically it is a really, really detailed form of genetic testing. In fact, the test is going to take about 6 months to complete. We gave a detailed history of Oksana and the things we have seen in the last few years. After examining her the geneticist turned to me and said "I feel confident we are going to find something." I thought that was a bit unusual since they had just given me a big talk about how there was a possibility they wouldn't find anything or that they would find something but have no idea what it is. I told her she seemed pretty confident so I asked what she is thinking. She said she believes that Oksana has a neurodegenerative disease. I asked her if she was thinking of any specific disease. She told me that there are MANY of them and that they often present with psychiatric issues. The loss of some skills is what is concerning her. Oksana can barely sit up, barely walk, and barely feed herself. We thought this was all behavioral but I couldn't figure out why nothing we did made any improvement. She believes Oksana could have something like Nieman-pick type c or Tay Sachs late onset type.
I have done a whole lot of two things since she told me that:
1) Cry
2) Research
Honestly, I completely see why she thinks this. If this is true it explains so many things. It all makes sense and I hate that it makes sense. If this is true, the skills she has lost will never be regained, she will continue to lose skills, and depending on the disease it is fatal.
So we are in this weird place where we have 6 months to wait for an answer, yet we need to make decisions in those 6 months that keep in mind that this is a very real possibility, while at the same time realizing it could be nothing. Want to know what my gut says? My gut says it isn't nothing. My gut says even if it isn't a neurodegenerative disease she is on the right track. My gut says Oksana is not going to get those skills back. So now as we prepare for her to come home we really need to take this into consideration. A personal care assistant will now help us not only behaviorally but medically. Quite frankly, I feel fairly confident that if we treat Oksana as someone who has lost skills and not as someone who is trying to get out of doing something it will reduce her behaviors quite a bit.
I also contacted her physical therapist. She hasn't seen Oksana for about 4 months now. I told her about this and she wants to have a big meeting in the new year and discuss what we will need to bring her home. We have to consider seating, feeding, etc. If she isn't going to regain these skills we need some serious adaptive equipment. If she does regain them...fantastic! We are preparing for the worst and hoping for the best.
Tomorrow we have a big meeting with her team at residential and this will obviously be a topic of conversation. I also think at this point Oksana needs to come home in February. If this really is a genetic condition there is nothing more that residential can do for her. February will give us the time we need to get things in place in our house to care for her.
I have done a whole lot of two things since she told me that:
1) Cry
2) Research
Honestly, I completely see why she thinks this. If this is true it explains so many things. It all makes sense and I hate that it makes sense. If this is true, the skills she has lost will never be regained, she will continue to lose skills, and depending on the disease it is fatal.
So we are in this weird place where we have 6 months to wait for an answer, yet we need to make decisions in those 6 months that keep in mind that this is a very real possibility, while at the same time realizing it could be nothing. Want to know what my gut says? My gut says it isn't nothing. My gut says even if it isn't a neurodegenerative disease she is on the right track. My gut says Oksana is not going to get those skills back. So now as we prepare for her to come home we really need to take this into consideration. A personal care assistant will now help us not only behaviorally but medically. Quite frankly, I feel fairly confident that if we treat Oksana as someone who has lost skills and not as someone who is trying to get out of doing something it will reduce her behaviors quite a bit.
I also contacted her physical therapist. She hasn't seen Oksana for about 4 months now. I told her about this and she wants to have a big meeting in the new year and discuss what we will need to bring her home. We have to consider seating, feeding, etc. If she isn't going to regain these skills we need some serious adaptive equipment. If she does regain them...fantastic! We are preparing for the worst and hoping for the best.
Tomorrow we have a big meeting with her team at residential and this will obviously be a topic of conversation. I also think at this point Oksana needs to come home in February. If this really is a genetic condition there is nothing more that residential can do for her. February will give us the time we need to get things in place in our house to care for her.
Tuesday, December 1, 2015
Triggered
So much to share and I just don't have the time to do it. I have to say that I love my job, but the front desk work combined with the teaching has been hard on me. My class is only one semester and it will be over January 22. After that I don't think I will teach my own class again. I'll stay at the front desk and happily sub so I can say no when I need to. I adore these kids more than I ever thought I would so subbing will be a great chance for me to stay connected with them in the classroom. Just too much going on in my family and my head for all of it.
Oksana's first 90 days in residential is over and we are starting the second 90 days. Next Thursday we are having a meeting with Crider and Regional. This will be the first of many to come to discuss what we need in our home when she comes back. This has me triggered big time. I'm feeling very anxious and scared a lot. I'm constantly thinking about it and worrying. I know I need to stop, but with the meetings happening regularly I think it is going to be very hard for me to get past this.
They are talking very seriously about putting a PCA in our house. She would do all of Oksana's care. We would not have to bathe, dress, or anything that is an area that usually causes her to scream at us and harm us or herself. Thankfully our team understands the trauma we have been through and they absolutely do not want things going back the way they were. I'm thankful for that, but I don't think they realize how hard it will be to not only be living with a stranger in our house, but also listening to Oksana scream.
I'll have more info after the meeting.
In the meantime we did go on vacation with the 3 kids and had a blast. I will post about that in a separate post soon.
Oksana's first 90 days in residential is over and we are starting the second 90 days. Next Thursday we are having a meeting with Crider and Regional. This will be the first of many to come to discuss what we need in our home when she comes back. This has me triggered big time. I'm feeling very anxious and scared a lot. I'm constantly thinking about it and worrying. I know I need to stop, but with the meetings happening regularly I think it is going to be very hard for me to get past this.
They are talking very seriously about putting a PCA in our house. She would do all of Oksana's care. We would not have to bathe, dress, or anything that is an area that usually causes her to scream at us and harm us or herself. Thankfully our team understands the trauma we have been through and they absolutely do not want things going back the way they were. I'm thankful for that, but I don't think they realize how hard it will be to not only be living with a stranger in our house, but also listening to Oksana scream.
I'll have more info after the meeting.
In the meantime we did go on vacation with the 3 kids and had a blast. I will post about that in a separate post soon.
Sunday, November 15, 2015
Oksana
So much has happened that I really don't even know where to start. I'm learning that advocacy is a full time job. I'm constantly fielding emails and phone calls, questioning policies, asking questions, and making visits. Sometimes I am handling big issues and sometimes I am handling little ones. Let me tell you....the little ones can be just as annoying as the big. Sometimes I just shake my head. Here are a few of the things we have dealt with in the last couple of weeks:
- Oksana has been moved to a new teacher and we really like her. She enjoys going to school again and is toileting more consistently during school. I'll share more about why we made that change another time. It wasn't pretty.
- I learned that they were having men bathe Oksana. After questioning that policy it has been changed.
- Oksana went so far downhill that I called the psychiatrist convinced that she was catatonic. She basically got to the point that she would lay on the floor and not move for a very long time. She wasn't speaking, wasn't eating, was constantly slumped over, etc. It was bad. After some bloodwork we learned that her depakote levels are high and she shows sign of a chronic infection. They suspect she may have had mono which would explain things. They tested her for it and we will have results next week.
- While we were concerned about catatonia we also made the decision to do some extensive genetic testing. She will go to the genetics clinic at children's hospital in December. Every one is convinced that with her level of complexity there has to be more going on than we can see. We also discussed possible further neruological testing.
- A few weeks before Halloween we went out and got Oksana a costume. It was an angel costume. We went to see her last week and I was so excited to hear about Halloween. I found out that they lost the dress and made her a pirate. It's not a huge deal but I paid money for that, I picked it out because I thought it would make her feel special, and how on earth do you lose a big gold glittery dress?!
-We had another big meeting about Oksana with the team who has been helping us since this summer. We talked about all of the pros and cons of where we are right now. It was decided that they will extend Oksana's stay another 3 months. After that I have no idea what will happen.
- We are planning another meeting next week with the residential center and the school to address some concerns (like the fact that we suspect they are feeding her) and make sure we are all on the same page again.
And that's really just the tip of the iceberg. The good news is that physically she is doing better. They suspect that if it was mono that she had, she is getting over it because she is perking up again. We do have a good team of people willing to help us so that is the first step. Unfortunately communication stinks there but I hope that we can work through that. I'll try to get some pictures when we see her on Friday.
- Oksana has been moved to a new teacher and we really like her. She enjoys going to school again and is toileting more consistently during school. I'll share more about why we made that change another time. It wasn't pretty.
- I learned that they were having men bathe Oksana. After questioning that policy it has been changed.
- Oksana went so far downhill that I called the psychiatrist convinced that she was catatonic. She basically got to the point that she would lay on the floor and not move for a very long time. She wasn't speaking, wasn't eating, was constantly slumped over, etc. It was bad. After some bloodwork we learned that her depakote levels are high and she shows sign of a chronic infection. They suspect she may have had mono which would explain things. They tested her for it and we will have results next week.
- While we were concerned about catatonia we also made the decision to do some extensive genetic testing. She will go to the genetics clinic at children's hospital in December. Every one is convinced that with her level of complexity there has to be more going on than we can see. We also discussed possible further neruological testing.
- A few weeks before Halloween we went out and got Oksana a costume. It was an angel costume. We went to see her last week and I was so excited to hear about Halloween. I found out that they lost the dress and made her a pirate. It's not a huge deal but I paid money for that, I picked it out because I thought it would make her feel special, and how on earth do you lose a big gold glittery dress?!
-We had another big meeting about Oksana with the team who has been helping us since this summer. We talked about all of the pros and cons of where we are right now. It was decided that they will extend Oksana's stay another 3 months. After that I have no idea what will happen.
- We are planning another meeting next week with the residential center and the school to address some concerns (like the fact that we suspect they are feeding her) and make sure we are all on the same page again.
And that's really just the tip of the iceberg. The good news is that physically she is doing better. They suspect that if it was mono that she had, she is getting over it because she is perking up again. We do have a good team of people willing to help us so that is the first step. Unfortunately communication stinks there but I hope that we can work through that. I'll try to get some pictures when we see her on Friday.
Friday, November 13, 2015
God is funny like that
Earlier this year I told someone in our women's ministry that I would be willing to share some of our story during a bible study. God used that in a big way and it was a huge blessing. It was very healing for me. When I get to share my story it gives purpose to my suffering. Some relate even if they aren't living the exact same situation and they see that someone understands. Some can't relate but maybe they better understand the suffering of someone else in their life.
After that was over we went through some very hard times with Oksana and so there was no time to focus on anything but surviving. Now that she has been out of our home for a couple of months and we have had time to regroup, God has decided it's time for me to get working again.
A month or so ago I was given the opportunity to give some input into a written piece about parenting children with mental illness. http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/
From that I was asked to write a piece on my own and I recently wrote this: http://themighty.com/2015/11/5-ways-having-a-child-with-mental-illness-has-changed-me-for-the-better/
I was also asked to write something for Lutheran Children and Family Services and NAMI but I haven't done that yet.
Then came the speaking.
First NAMI called and asked if we would come speak to a politician that they were meeting with and share our story.
Next, I was approached about being the speaker at the Christmas Gala event that the women's ministry of our church has every year. I agreed to it but I still have no idea why they chose me. Apparently God has something for me to say so I've been writing and asking Him to make it clear to me.
Then the Department of Mental Health approached me and asked if Larry and I would come speak at their big regional staff meeting about a parent's perspective on mental illness and our struggles in the system. Ummmm.....yes.
Finally, Lutheran Children and Family Services contacted me and asked me to come to their staff meeting to talk to them about our story and then do a Q&A with their staff.
On the more relaxed and fun side of it all I got to do a presentation on Down Syndrome to Anya's class and was asked to come next week and do the same thing in another class that has a boy with Down Syndrome.
I have no idea what God is up to but he gave me this for a reason so I'm just going to follow along and see what happens.
I promise I will do an Oksana update soon.
After that was over we went through some very hard times with Oksana and so there was no time to focus on anything but surviving. Now that she has been out of our home for a couple of months and we have had time to regroup, God has decided it's time for me to get working again.
A month or so ago I was given the opportunity to give some input into a written piece about parenting children with mental illness. http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/
From that I was asked to write a piece on my own and I recently wrote this: http://themighty.com/2015/11/5-ways-having-a-child-with-mental-illness-has-changed-me-for-the-better/
I was also asked to write something for Lutheran Children and Family Services and NAMI but I haven't done that yet.
Then came the speaking.
First NAMI called and asked if we would come speak to a politician that they were meeting with and share our story.
Next, I was approached about being the speaker at the Christmas Gala event that the women's ministry of our church has every year. I agreed to it but I still have no idea why they chose me. Apparently God has something for me to say so I've been writing and asking Him to make it clear to me.
Then the Department of Mental Health approached me and asked if Larry and I would come speak at their big regional staff meeting about a parent's perspective on mental illness and our struggles in the system. Ummmm.....yes.
Finally, Lutheran Children and Family Services contacted me and asked me to come to their staff meeting to talk to them about our story and then do a Q&A with their staff.
On the more relaxed and fun side of it all I got to do a presentation on Down Syndrome to Anya's class and was asked to come next week and do the same thing in another class that has a boy with Down Syndrome.
I have no idea what God is up to but he gave me this for a reason so I'm just going to follow along and see what happens.
I promise I will do an Oksana update soon.
Wednesday, November 11, 2015
Cheerleader
This post is mostly for Sharon! Sharon met Anya in Bulgaria when she was visiting her daughter so she likes it when I keep her updated on Anya's insanity ;).
This time last year we singed Anya up for cheerleading. It only lasted a few months and was just something for fun. It ended back in March and she has talked about it pretty much weekly ever since! I was just getting ready to sign her up again when I learned about a special needs cheer squad. They run year round and cheer at competitions all over the city. It was a pretty penny, but I thought we would at least give it a try. Oh my.....she absolutely loves it! This is definitely her "thing"! Her coach is a former Mizzou cheerleader and is now and OT. It's an awesome team! Here are some pictures:
This time last year we singed Anya up for cheerleading. It only lasted a few months and was just something for fun. It ended back in March and she has talked about it pretty much weekly ever since! I was just getting ready to sign her up again when I learned about a special needs cheer squad. They run year round and cheer at competitions all over the city. It was a pretty penny, but I thought we would at least give it a try. Oh my.....she absolutely loves it! This is definitely her "thing"! Her coach is a former Mizzou cheerleader and is now and OT. It's an awesome team! Here are some pictures:
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| She was terrified of stunts when she started, but now she loves it! She still doesn't want to stay up there long though! |
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| I adore this picture. |
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| The jacket and the bow the size of her head! |
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| Stunts! |
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| The team and their buddies! |
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| Her first competition. The special needs teams don't get judged, but at this one she got a participation medal! |
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