Today we took Oksana to the neighborhood pool and she had a great time. It was much more low key than Wild River Country and she had a blast for 2 full hours and did not want to get out at all! I had a very interesting conversation with her in the pool. It went something like this:
Me: Oksana do you like the pool?
Oksana: Yes!
Me: Did you ever go swimming at the orphanage?
Oksana: No, just play. Swimming at home.
Me: What else do you do at home?
Oksana: Eat lots of food and drink. (isn't that an interesting response?)
Me: What else?
Oksana: Read lots of books.
I don't know about you but I found that fascinating. They correlate to survival (food 1st priority) and love. Reading books is a big deal for her because we cuddle up on her rocking chair and she LOVES it. She realizes that she no longer has to want for food or love. Amazing.
Tuesday, May 31, 2011
Monday, May 23, 2011
Swimming!
We recently learned of a local church who was hosting a free day at Wild River Country, a local water park, for families with children with special needs. WRC is very expensive and we have only taken our kids once because we got in as guests of a friend who had a membership so this was a big blessing for us! Oksana had seen pictures in ads with people floating on tubes and was VERY excited to float on a tube so despite the overcast skies, slightly chilly weather, and threat of rain we headed out for some fun! It was wonderful. Yes, the water was freezing and the lack of sun didn't help but it was not crowded at all and the kids had a blast!
First we started on the lazy river (every child under 18 had to wear a life vest which I thought was a great idea but my boys didn't think it was so great ;)....within 2 minutes they forgot they were wearing them and had a ton of fun):
Then we moved to the wave pool. I love these pictures of Oksana. This was one of "those moments" for Larry and me. You know the ones where you see this child filled with joy and laughter and it hits you that she could be sitting in an institution. She giggled and laughed through all of the waves and the boys had just as much fun as she did!
After about an hour of fun and some lunch (which was also free), Oksana started to get overstimulated. She began to get upset when kids would cry and was very upset at one point because she didn't know where her brothers were. We decided it was time for her to relax a bit and just hang out. Once she knew where her boys were and could see them playing she got settled on a chair she was fine.
After all of the fun we came home for more packing. Just under 3 weeks to go until moving day!
First we started on the lazy river (every child under 18 had to wear a life vest which I thought was a great idea but my boys didn't think it was so great ;)....within 2 minutes they forgot they were wearing them and had a ton of fun):
Then we moved to the wave pool. I love these pictures of Oksana. This was one of "those moments" for Larry and me. You know the ones where you see this child filled with joy and laughter and it hits you that she could be sitting in an institution. She giggled and laughed through all of the waves and the boys had just as much fun as she did!
After about an hour of fun and some lunch (which was also free), Oksana started to get overstimulated. She began to get upset when kids would cry and was very upset at one point because she didn't know where her brothers were. We decided it was time for her to relax a bit and just hang out. Once she knew where her boys were and could see them playing she got settled on a chair she was fine.
After all of the fun we came home for more packing. Just under 3 weeks to go until moving day!
Friday, May 13, 2011
SOLD!
Our house is sold! We will be moving the second week of June! That's exciting and all but I have to share this incredible God story with you:
The day before we got a contract on our house I said "Larry, we are running out of paper towels so we will need to get more when you go to Sams" and he got real bummed and said "Oh". I said "What is that all about?" Turns out awhile back he went to Sams to get us some paper towels. When he bought them he said "God please sell our house before I have to buy new papertowels." So I said "Well we aren't out yet." The next day I tore the last paper towel off but I knew that Larry wouldn't have time to go to Sams that day because of some other commitments. He planned to go the next day. At about 8:45 that night I said "Shucks, we were supposed to get our contract today because we ran out of paper towels!" At 9:00 our realtor called with the offer! Ok people, I think God wanted us to be SURE we knew that HE did this!
The day before we got a contract on our house I said "Larry, we are running out of paper towels so we will need to get more when you go to Sams" and he got real bummed and said "Oh". I said "What is that all about?" Turns out awhile back he went to Sams to get us some paper towels. When he bought them he said "God please sell our house before I have to buy new papertowels." So I said "Well we aren't out yet." The next day I tore the last paper towel off but I knew that Larry wouldn't have time to go to Sams that day because of some other commitments. He planned to go the next day. At about 8:45 that night I said "Shucks, we were supposed to get our contract today because we ran out of paper towels!" At 9:00 our realtor called with the offer! Ok people, I think God wanted us to be SURE we knew that HE did this!
Tuesday, May 10, 2011
Who, What, Where, When, Why?
Oksana is going through a stage of asking constant questions. This is what I listen to all day long:
"What you doin'?"
"What Bella doin'?"
"What Clayton doin'?"
"What Evan doin'?"
"Where Daddy?"
"What Daddy doin'?"
"Who you talkin' to?"
"What you makin'?"
"What we havin'?"
"Why you say that?"
"Who that?"
"What that?"
"Where you goin'?"
"Where my ball?" (or insert any other object that is usually right in front of her)
"Why you doin' that?"
"Why?"
"Why?"
"Why?"
"Why?"
"Why?"
I know she is learning a lot through these questions but sometimes there just isn't an answer. For example, at least once a day we have this conversation:
Oksana enters bathroom: "What you doin'?"
Me: "Going potty"
Oksana: "Why?"
See what I mean?!
"What you doin'?"
"What Bella doin'?"
"What Clayton doin'?"
"What Evan doin'?"
"Where Daddy?"
"What Daddy doin'?"
"Who you talkin' to?"
"What you makin'?"
"What we havin'?"
"Why you say that?"
"Who that?"
"What that?"
"Where you goin'?"
"Where my ball?" (or insert any other object that is usually right in front of her)
"Why you doin' that?"
"Why?"
"Why?"
"Why?"
"Why?"
"Why?"
I know she is learning a lot through these questions but sometimes there just isn't an answer. For example, at least once a day we have this conversation:
Oksana enters bathroom: "What you doin'?"
Me: "Going potty"
Oksana: "Why?"
See what I mean?!
Friday, May 6, 2011
My new favorite blog comment ever.....
"Fluffy brains are over-rated anyway!"
Thanks Catherine, that made me smile! I may just use that from now on when I explain Oksana's brain!
Thanks Catherine, that made me smile! I may just use that from now on when I explain Oksana's brain!
Thursday, May 5, 2011
MRI Results
This is the email I sent out to some friends and family this morning:
Well, we got some sad news about Oksana today but news that confirmed our suspicions so it is good news for us to know. I am going to do a horrible job of explaining it because I had to ask "What does that mean?" after every other word! Besides that, it was a lengthy conversation so I can't possibly remember everything, but here is my extremely dumbed down version of what I heard. We learned that the damage in her brain in the area that explains the CP is significant. Far more invovled than a typical premie birth resulting in CP. They believe that there was another factor as well, for example, it is possible that mom had blood pressure issues or was ill. There are a variety of possibilities and we will obviously never know what it was that led to the damage. Because of the extent of the damage it also appears that her brain has not developed normally and is "shrunken". She explained that a normal brain looks nice and "fluffy" (which I thought was kind of a funny brain description) but hers does not look like that. She also has damage in other areas of her brain. Some of these areas involve higher level thinking, mood, behavior, stability, etc. This does explain why we are trying so many different things to get her to walk with more stability and none of them are working. It isn't all CP related, some of it is brain related. I was told that based on the MRI Oksana will never develop to her chronological age but never to stop pushing because she could defy the odds. While, of course, I will continue to push her there is also a sense of relief here. Since she came home I've tried so hard to work with her to make her a 5 year old and it just wasn't happening. I can now relax a bit and let Oksana develop to her God given potential without the pressure of reaching a certain age developmentally. To top it all off I was told that once a week all of the neurologists gather together and present their most challenging cases for reveiw by the entire team. Oksana's MRI is being presented today. I didn't know if that should make me feel better or worse!!! So all that to say we should actually have even more information today. After I took time to process all of that all I could do was thank God that she is ours. She is such a blessing to us no matter what.
Well, we got some sad news about Oksana today but news that confirmed our suspicions so it is good news for us to know. I am going to do a horrible job of explaining it because I had to ask "What does that mean?" after every other word! Besides that, it was a lengthy conversation so I can't possibly remember everything, but here is my extremely dumbed down version of what I heard. We learned that the damage in her brain in the area that explains the CP is significant. Far more invovled than a typical premie birth resulting in CP. They believe that there was another factor as well, for example, it is possible that mom had blood pressure issues or was ill. There are a variety of possibilities and we will obviously never know what it was that led to the damage. Because of the extent of the damage it also appears that her brain has not developed normally and is "shrunken". She explained that a normal brain looks nice and "fluffy" (which I thought was kind of a funny brain description) but hers does not look like that. She also has damage in other areas of her brain. Some of these areas involve higher level thinking, mood, behavior, stability, etc. This does explain why we are trying so many different things to get her to walk with more stability and none of them are working. It isn't all CP related, some of it is brain related. I was told that based on the MRI Oksana will never develop to her chronological age but never to stop pushing because she could defy the odds. While, of course, I will continue to push her there is also a sense of relief here. Since she came home I've tried so hard to work with her to make her a 5 year old and it just wasn't happening. I can now relax a bit and let Oksana develop to her God given potential without the pressure of reaching a certain age developmentally. To top it all off I was told that once a week all of the neurologists gather together and present their most challenging cases for reveiw by the entire team. Oksana's MRI is being presented today. I didn't know if that should make me feel better or worse!!! So all that to say we should actually have even more information today. After I took time to process all of that all I could do was thank God that she is ours. She is such a blessing to us no matter what.
Tuesday, May 3, 2011
A day at the hospital
On Monday Oksana had a follow up visit in Nerology and a sedated MRI. I wish I could say I had pictures but I left my camera at home! We started our day at 11:00 to see what kind of progress had been made since the botox. I had noticed a difference in her flexibility but I do not feel it made a bit of difference in her walking. The nurse practitioner completely agreed. She said that this tells us that her primary problem is not with her hamstrings as we suspected. She talked a lot about her hips being very tight. So I asked her what this means for botox. She doesn't want to stop it yet, but she has added oral Baclofen which is a muscle relaxer. Apparently, in some people with CP they get Baclofen through a pump that is implanted under the skin of the abdomen which delivers the medication directly into the spinal fluid. If Baclofen is effective for Oksana I have no idea if this would be considered for her or not....we didn't get that far. Right now we are only looking 6 weeks ahead. We are going to see how the muscle relaxer helps and if her hamstrings have tightened significantly (this is when the botox will be wearing off) she is going to increase her dosage and see if the combo of the botox and Baclofen help her. I sure hope this is making sense.
Oksana's MRI was scheduled for 3:00. When I was talking to the nurse practitioner in Neruology I told her that I was very interested to see if we could identify any damage to the brain that might be affecting her cognitively. I told her I would honestly be shocked if we found nothing. She said "I didn't want to tell you this last time but I will be shocked too". I assured her that I do not need her to sugar coat anything for me. I'm not saying that whatever we learn might not be hard to hear or even make me cry, but we want to know everything so that we can make wise decisions for her. With that said she told me that she would call us by 6 with results.
So we were off to radiology. I could not believe how amazing she was. Those of you that have been following this blog might remember the child I brought home who was scared of EVERYTHING. The child I brought home was not there yesterday! Every doctor or nurse who saw her commented that she was their best patient all day. She sat so patiently waiting for her MRI (3 hours worth of waiting because they were running behind). She knew exactly what was going to happen. The only time I saw her even start to look nervous was when it was time for the procedure and all kinds of doctors and nurses crowded around her. Her eyes got as big as saucers but she didn't put up a fight and even commented that the gas smelled yummy! Next thing I knew she was out. I told them that because of her history it was very important to me that I was the first person she saw when she woke up. They were more than accomodating. They called me down early and even gave her extra gas to be really sure she didn't wake up too fast. The whole time we were waiting we kept hearing kids come out of anesthesia crying. I knew it was perfectly normal so I was prepared for it. When she woke up she sat up, looked around, and showed me her IV with a look on her face that said "What in the world is this?!". I told her she need to drink something before they could take it out. She took a sip of apple juice and again held her hand up with a face that said "There now OUT with this thing!". We gave her some cookies and more juice to make sure her belly was OK and then out came the IV and she was dressed and on her way home. Never even a wimper. I was shocked.
Since the MRI was so far behind I knew I wouldn't hear results last night but I really thought I would hear something today. No such luck so they are getting a call tomorrow. I'll post again when I hear something.
Oksana's MRI was scheduled for 3:00. When I was talking to the nurse practitioner in Neruology I told her that I was very interested to see if we could identify any damage to the brain that might be affecting her cognitively. I told her I would honestly be shocked if we found nothing. She said "I didn't want to tell you this last time but I will be shocked too". I assured her that I do not need her to sugar coat anything for me. I'm not saying that whatever we learn might not be hard to hear or even make me cry, but we want to know everything so that we can make wise decisions for her. With that said she told me that she would call us by 6 with results.
So we were off to radiology. I could not believe how amazing she was. Those of you that have been following this blog might remember the child I brought home who was scared of EVERYTHING. The child I brought home was not there yesterday! Every doctor or nurse who saw her commented that she was their best patient all day. She sat so patiently waiting for her MRI (3 hours worth of waiting because they were running behind). She knew exactly what was going to happen. The only time I saw her even start to look nervous was when it was time for the procedure and all kinds of doctors and nurses crowded around her. Her eyes got as big as saucers but she didn't put up a fight and even commented that the gas smelled yummy! Next thing I knew she was out. I told them that because of her history it was very important to me that I was the first person she saw when she woke up. They were more than accomodating. They called me down early and even gave her extra gas to be really sure she didn't wake up too fast. The whole time we were waiting we kept hearing kids come out of anesthesia crying. I knew it was perfectly normal so I was prepared for it. When she woke up she sat up, looked around, and showed me her IV with a look on her face that said "What in the world is this?!". I told her she need to drink something before they could take it out. She took a sip of apple juice and again held her hand up with a face that said "There now OUT with this thing!". We gave her some cookies and more juice to make sure her belly was OK and then out came the IV and she was dressed and on her way home. Never even a wimper. I was shocked.
Since the MRI was so far behind I knew I wouldn't hear results last night but I really thought I would hear something today. No such luck so they are getting a call tomorrow. I'll post again when I hear something.
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