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.
Thursday, January 28, 2016
Tuesday, January 26, 2016
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!
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!
Saturday, January 9, 2016
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!
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!
Wednesday, January 6, 2016
Shocked
Today we went to see Oksana's OT, PT, Physiatrist, and a seating and mobility company all in one 2 hour appointment. They were shocked. They haven't seen Oksana since summer, right before she went to residential. She was regressing then. The reason that I took her to them was that I was very concerned about regression. At the time she was still walking but not as well and many skills were becoming a major ordeal. They evaluated her and like everyone else they thought it might have been behavioral. When they saw her this time there was no doubt this wasn't behavior. I've seen this happen little by little over time. I knew it was bad but seeing it through their eyes was like being hit over the head with a brick. Today I ordered a wheelchair and stander for my daughter who was almost completely independent a year ago. Today we talked about modifying our van. Tomorrow we are meeting with Regional Center and Crider to talk about funding her adaptive equipment and her personal care assistant so we can bring her home. Tuesday the seating and mobility company is coming out to evaluate our bathroom so we can adapt it. Let's remember that maybe a bit more than a year ago she was walking 10 minutes on a treadmill, going up and down stairs, and lifting 35 lbs with her legs in therapy.
Here is a picture I took today when she was trying out the stander. It's kind of cool because it can go from sitting to standing and anywhere in between. In this picture she is at about a 45 degree angle and they are thinking this is where they want her eating now. She can't hold up her upper body and this was an instance where she lifted her head to see the OT but mostly she can't hold it up anymore for any period of time. Mostly I am just shocked by this picture. When I took it I cried. It doesn't even look like her.
Everything in me wanted to bring her home. She needs to be with her family, but I know we can't yet. We need to be ready for her. A personal care assistant will be absolutely necessary. In our meeting tomorrow we will be discussing all of this. I have no idea how I am going to wait for those genetics results. It's torture.
Here is a picture I took today when she was trying out the stander. It's kind of cool because it can go from sitting to standing and anywhere in between. In this picture she is at about a 45 degree angle and they are thinking this is where they want her eating now. She can't hold up her upper body and this was an instance where she lifted her head to see the OT but mostly she can't hold it up anymore for any period of time. Mostly I am just shocked by this picture. When I took it I cried. It doesn't even look like her.
Everything in me wanted to bring her home. She needs to be with her family, but I know we can't yet. We need to be ready for her. A personal care assistant will be absolutely necessary. In our meeting tomorrow we will be discussing all of this. I have no idea how I am going to wait for those genetics results. It's torture.
Sunday, January 3, 2016
New Year
My friend Emily and then today's sermon at church inspired me to write this. 2015 was a rough year. I've struggled with facing 2016 because I don't think there is a ton of hope for it to get better. Today at service our pastor pointed out how hard it is to remember the good things. Isn't that the truth?! I can name so many hard, hard things in 2015 but sometimes it's a lot harder for me to remember that a lot of blessings came this year too. As I look forward to 2016 I want to take time to remember those blessings. Here they are in no particular order:
- The professionals that God has brought into our lives to support and fight for us. Regional Center, Crider, FACT, NAMI, Oksana's therapist, Anya's behavior therapist, Anya and Oksana's IEP teams, etc. I don't know how but over and over again we are blessed by some of the best people from these organizations.
- Our doctors. We have a team of doctors for all of our kids that we love! These doctors support our family and encourage us. They listen and they do everything they can to help us.
- Respite. It took me so long to get respite because I didn't trust that anyone could really handle my girls. We found 2 amazing women who love our girls and have been such a blessing to us. We also have an out of home respite center for Oksana that she LOVES. When things were at their worst they did everything they could to take her as many weekends as possible so we could get a break. They handle her so well and we love them!
- Our church has to be on this list. They have prayed for our family and loved us through this whole year. At one point they organized 2 months worth of meals because I had such a hard time getting food on our table when Oksana was constantly in crisis mode. They are amazing.
- Our small group....ok it's sort of like church but different. This is a group of 4 other couples who Larry and I meet with weekly for a Bible study. It is so much more than that though. These people have become dear, dear friends. Back in March Larry pushed me to start a small group. I had no desire to do it but he was terribly lacking in support that I was getting from other friends so I agreed. I'm so thankful I listened to Larry and to the Holy Spirit. I love them.
- Oksana's new teacher. She's fantastic. A huge blessing during a very bad experience with her other teacher. I'm so thankful that now we can rest knowing that she is safe and well cared for at school.
- Residential. Quite frankly I have a hard time calling this a blessing but the truth is that they gave us a much needed and very long break. We were sinking and our next option was to give her over to the state. This has allowed us to give our family the rest and care it needed. I desperately needed her to beat someone else up and to be the one that came in, had fun, and left. They have given me that.
- Work - I'm so thankful that God gave me the opportunity to work. It was absolutely necessary for us financially but I have been blessed in far more ways than financially. I have built some wonderful relationships now that I am more involved in the boys' school. I got the privilege of teaching 6 amazing high school kids. I never thought I would enjoy high school but boy was I wrong. The whole thing has been a great experience. My class ends January 22. After that I have chosen not to teach my own class. I need to focus on Oksana's arrival home. I will still work front desk and still sub.
- The growth in the boys - Clayton is 16 now. He has joined musical theatre and is taking voice lessons. I never thought I would say that! In the spring he will be the constable in Fiddler on the Roof. He has built a good solid group of friends which is something he was lacking for a long time. He has a job and is an employee that his boss respects. Evan was diagnosed with anxiety this year and is working hard on that with his therapist. He is in the working student program at the barn and he works a minimum of 10 hours a month in exchange for ride time and discounts on competitions. He also joined their equestrian team and is working toward lettering in the sport in May. Both of the boys have grown in many ways this year.
- My marriage - In a situation that could have left us torn apart, Larry and I came out of this year stronger than ever. He is my favorite person on earth :).
- Speaking and writing opportunities - I have never ever desired to write or speak! This year, however, God has started to use our story to minister to others. It has been incredibly healing for me and has given me purpose in our suffering as well as allowing me to meet some incredible people. I'm excited to see what this year holds in this area.
See?! That was great for me. I needed to focus on the blessings of 2015 for awhile. It's important to remember and to thank God for what He has done!
- The professionals that God has brought into our lives to support and fight for us. Regional Center, Crider, FACT, NAMI, Oksana's therapist, Anya's behavior therapist, Anya and Oksana's IEP teams, etc. I don't know how but over and over again we are blessed by some of the best people from these organizations.
- Our doctors. We have a team of doctors for all of our kids that we love! These doctors support our family and encourage us. They listen and they do everything they can to help us.
- Respite. It took me so long to get respite because I didn't trust that anyone could really handle my girls. We found 2 amazing women who love our girls and have been such a blessing to us. We also have an out of home respite center for Oksana that she LOVES. When things were at their worst they did everything they could to take her as many weekends as possible so we could get a break. They handle her so well and we love them!
- Our church has to be on this list. They have prayed for our family and loved us through this whole year. At one point they organized 2 months worth of meals because I had such a hard time getting food on our table when Oksana was constantly in crisis mode. They are amazing.
- Our small group....ok it's sort of like church but different. This is a group of 4 other couples who Larry and I meet with weekly for a Bible study. It is so much more than that though. These people have become dear, dear friends. Back in March Larry pushed me to start a small group. I had no desire to do it but he was terribly lacking in support that I was getting from other friends so I agreed. I'm so thankful I listened to Larry and to the Holy Spirit. I love them.
- Oksana's new teacher. She's fantastic. A huge blessing during a very bad experience with her other teacher. I'm so thankful that now we can rest knowing that she is safe and well cared for at school.
- Residential. Quite frankly I have a hard time calling this a blessing but the truth is that they gave us a much needed and very long break. We were sinking and our next option was to give her over to the state. This has allowed us to give our family the rest and care it needed. I desperately needed her to beat someone else up and to be the one that came in, had fun, and left. They have given me that.
- Work - I'm so thankful that God gave me the opportunity to work. It was absolutely necessary for us financially but I have been blessed in far more ways than financially. I have built some wonderful relationships now that I am more involved in the boys' school. I got the privilege of teaching 6 amazing high school kids. I never thought I would enjoy high school but boy was I wrong. The whole thing has been a great experience. My class ends January 22. After that I have chosen not to teach my own class. I need to focus on Oksana's arrival home. I will still work front desk and still sub.
- The growth in the boys - Clayton is 16 now. He has joined musical theatre and is taking voice lessons. I never thought I would say that! In the spring he will be the constable in Fiddler on the Roof. He has built a good solid group of friends which is something he was lacking for a long time. He has a job and is an employee that his boss respects. Evan was diagnosed with anxiety this year and is working hard on that with his therapist. He is in the working student program at the barn and he works a minimum of 10 hours a month in exchange for ride time and discounts on competitions. He also joined their equestrian team and is working toward lettering in the sport in May. Both of the boys have grown in many ways this year.
- My marriage - In a situation that could have left us torn apart, Larry and I came out of this year stronger than ever. He is my favorite person on earth :).
- Speaking and writing opportunities - I have never ever desired to write or speak! This year, however, God has started to use our story to minister to others. It has been incredibly healing for me and has given me purpose in our suffering as well as allowing me to meet some incredible people. I'm excited to see what this year holds in this area.
See?! That was great for me. I needed to focus on the blessings of 2015 for awhile. It's important to remember and to thank God for what He has done!
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