Since 2013 we have struggled through pain, trauma, loss, mourning, and sadness as we have parented Oksana through some very hard times and done everything in our power to help her and find answers for her only to have nothing help.
If you have followed this blog you know that back in November we became very concerned with some significant regression in Oksana that we had seen happening since very early in the year. It was recommended that we go see a geneticist. The geneticist did whole exome sequencing, an extensive type of genetic testing that can take up to 6 months for results. She told us then that she felt confident that Oksana has a neurodegenerative disease. She thought Tay Sachs or Niemann Pick Type C. Over the next month or so we saw almost all of Oksana's primary doctors....pediatrician, physiatry (this is the doctor who manages her CP), psychiatry, and GI....every single one of them said it was clearly neurodegenerative.
I have waited and waited and agonized over the results of the genetic testing. Some days I thought I couldn't possibly take the wait any longer. I was sure we would finally have an answer to years of questions. Over the time waiting I did a lot of research and I could totally see why the geneticist suspected the diseases she mentioned. She fit Niemann Pick Type C really well. At one point I remember thinking to myself "There is no way this ISN'T Niemann Pick!"
All of my waiting came to an end yesterday. I finally got the call I was waiting for. The first thing she said was "I'm sorry but they found nothing that explains what is happening to Oksana". I just sat there in total silence. I had no idea what to say. I could hardly believe it. She told me that they did find an abnormality on a gene that points to a syndrome, but it is clearly not the syndrome she has. Basically she told us we just keep watching her symptoms and they will re-test her DNA in 18 months to see if anything has been discovered in that time that might explain what she has.
We are literally back to square one. After severe mental illness including psychosis, and regression that includes almost complete loss of the ability to walk independently, loss of ability to do any self help skills including dressing and eating, slurred speech that is very hard to understand, and a number of other smaller concerns we still know nothing. No one knows what will happen from here. They still think it is degenerative. They still pushed her wish through for Make a Wish on a rush so she can go as soon as possible (We are leaving for Disney on May 25). But outside of that all we can do is wait and watch.
Oh the emotions that ran through me when I got that news. Shock, sadness, ANGER, lots of ANGER. You would think that learning that your child has a fatal disease would be the worst news possible, but for me it the worst news possible was no news. Unless you've been in these shoes that might be hard to understand. I didn't just want an answer for her, I NEEDED an answer. I needed to know what caused my child to assault me daily for years. I needed to know why she suddenly can't do all of the things she could do before. I needed to know what her future would be like and what I could do to help her. And as a side note I'm not responding well to "Christian-eze" right now so phrases like "God has a plan. Trust him." make me want to pull my hair out. I'm just being honest.
In other news, Anya was diagnosed with ADHD yesterday and is now on medication. If you know Anya at all you will be saying "Hallelujah and praise the Lord!" We are hoping that she can finally function in the world because her impulsivity and hyperactivity had gotten out of control. All the behavior therapy in the world wasn't helping and it was finally to the point that it was affecting her education and her life so we took the next step. She's only been on meds for 24 hours and we are still messing with doses to find what works best for her but we are already seeing a change.
More updates coming. Off to give Oksana a bath.
Wednesday, March 30, 2016
Friday, March 11, 2016
A Good Report!
This is going to be all good news. It feels so good to be giving good news!
Oksana has been home now for almost 2 weeks! It has been going SO well! I'm in shock at how smooth things have been. She has had 2 rough moments since she has been home. Not 2 a day, or 2 an hour, or 2 that lasted 2 hours, but 2 moments in 11 days! She is so happy to be home. She is so happy to have accommodations to meet her physical needs. She is so happy to be experiencing some of her favorite things again. Most of all, she has no desire to ever be at residential again. I think this time might have been a good dose of reality for her.
It's not just Oksana who has adjusted well to her return. We all have. Everyone is enjoying having her back. She involves a TON more physical care now, and a TON less emotional care. That is a trade that everyone in this family is happy to make. I worried most about Anya and I think the girls have a better relationship now than we have seen in a LONG time. I really think Anya sees the difference. She loves helping to care for Oksana, and she loves taking rides on her wheelchair :). We call it "The Loraine Train".
When Oksana first came home it was absolutely exhausting caring for her with the other kids. We have worked hard to find what is working and what isn't and adapt whatever we need to in order to make life easier for all of us. That has paid off. It's still exhausting but not near as bad as it was.
We learned this week that insurance approved her new wheelchair and we are now only a week or 2 from getting it! She is SO excited. It is pink and will have her name embroidered on it. She also got new glasses last week that are pink and we just ordered wrist splints....I bet you will never guess what color she wanted ;). Pretty soon you will know she is coming when you see the big ball of pink coming at you!
We heard from Make a Wish that Oksana definitely qualifies for a wish! It took a bit longer than usual because she doesn't have an official diagnosis yet. They said that happens sometimes and they just need to talk to the medical team in more detail to be sure she still qualifies. She does! We are waiting now to hear from our 2 volunteer wish granters who will interview Oksana and find out what wish she wants. We are so excited for her and for our family!
I called genetics this week. Tuesday marks the 3 month point from when we started the genetic testing. They said that it would take a maximum of 6 months. I have had such a hard time waiting so I called just to ask if they knew of any progress. She told me that most tests are coming back in the 2-4 month range right now. She feels like we might hear something this month and definitely by May. She also said that all of the tests coming back at 2 months are negative. The fact that we haven't heard anything yet tells her that they may have found something.
I haven't been great about taking pictures lately but I will try to get some up here soon.
Oksana has been home now for almost 2 weeks! It has been going SO well! I'm in shock at how smooth things have been. She has had 2 rough moments since she has been home. Not 2 a day, or 2 an hour, or 2 that lasted 2 hours, but 2 moments in 11 days! She is so happy to be home. She is so happy to have accommodations to meet her physical needs. She is so happy to be experiencing some of her favorite things again. Most of all, she has no desire to ever be at residential again. I think this time might have been a good dose of reality for her.
It's not just Oksana who has adjusted well to her return. We all have. Everyone is enjoying having her back. She involves a TON more physical care now, and a TON less emotional care. That is a trade that everyone in this family is happy to make. I worried most about Anya and I think the girls have a better relationship now than we have seen in a LONG time. I really think Anya sees the difference. She loves helping to care for Oksana, and she loves taking rides on her wheelchair :). We call it "The Loraine Train".
When Oksana first came home it was absolutely exhausting caring for her with the other kids. We have worked hard to find what is working and what isn't and adapt whatever we need to in order to make life easier for all of us. That has paid off. It's still exhausting but not near as bad as it was.
We learned this week that insurance approved her new wheelchair and we are now only a week or 2 from getting it! She is SO excited. It is pink and will have her name embroidered on it. She also got new glasses last week that are pink and we just ordered wrist splints....I bet you will never guess what color she wanted ;). Pretty soon you will know she is coming when you see the big ball of pink coming at you!
We heard from Make a Wish that Oksana definitely qualifies for a wish! It took a bit longer than usual because she doesn't have an official diagnosis yet. They said that happens sometimes and they just need to talk to the medical team in more detail to be sure she still qualifies. She does! We are waiting now to hear from our 2 volunteer wish granters who will interview Oksana and find out what wish she wants. We are so excited for her and for our family!
I called genetics this week. Tuesday marks the 3 month point from when we started the genetic testing. They said that it would take a maximum of 6 months. I have had such a hard time waiting so I called just to ask if they knew of any progress. She told me that most tests are coming back in the 2-4 month range right now. She feels like we might hear something this month and definitely by May. She also said that all of the tests coming back at 2 months are negative. The fact that we haven't heard anything yet tells her that they may have found something.
I haven't been great about taking pictures lately but I will try to get some up here soon.
Monday, February 29, 2016
Thursday, February 25, 2016
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:
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! |
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| Ashley is Anya's buddy for cheer and she is also a cheerleader at this college. |
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| Anya insisted that they all get on their knees! |
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| 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! |
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| Anya's teacher and two paras came to see her! |
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| Anya's respite worker and her sister. They are awesome! |
Tuesday, February 16, 2016
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.
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!
On Friday we will pick her up from school and she will stay with us until Sunday. 2 weeks to go!
Monday, February 1, 2016
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.
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.
Thursday, January 28, 2016
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.
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.
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