I took this video last night while I was feeding Aidan so that everyone could see how he is doing. You also get a chance to kind of see what his seizures are like, even though you can't see the effect on his whole body because I'm so close, but it gives you an idea. He will open his mouth when I ask him, and a lot of times when I ask him a question, it sounds like he is say "uh-huh." I'm not sure how much of that his him trying to answer me or it's just him vocalizing/whining.
It's kind of a long video (a little less than 8 minutes), and it's not the greatest, but I wanted everyone to see how he's doing and to show you just how much he actually eats right now.
Thanks!
Friday, January 30, 2009
Thursday, January 29, 2009
I feel the need to clarify some things
After receiving a message this morning from a person asking if Aidan was walking yet (no offense to the person who asked), and just from other questions I'm asked about Aidan's condition, I feel the need to clarify the severity of Aidan's accident.
I think a lot of times we let things that we've seen on TV cloud our perception of what happens in certain cases. I know that I had this picture in my head of Aidan being in a coma and that he would just wake up eventually, maybe requiring some physical therapy to help strengthen muscles, etc, but he would be perfectly normal. That isn't the case for Aidan. He isn't one of the kids that you see on TV that fell through ice and was brought back from the "dead", only to be in a coma for a few days with hypothermia and then wake up a few days or weeks later perfectly normal.
Aidan sustained significant brain damage due to the lack of oxygen. The parts of his brain that control visual perception were damaged. His eyesight is fine, but the connection that allows him to understand what he is seeing is damaged. Overall, his brain shrunk. The ventricles, the areas in the brain that have fluid enlarged some. When brain cells become damaged or in Aidan's case, die, the brain matter become soft and the fluid in those ventricles displaces the brain cells. It's hard to explain.
The neuro-storming that Aidan had/has is due to damage in another part of the brain. He has a hard time dealing with stressful situations, he can't regulate his temperature well, etc.
We are trying to help his brain heal those areas or help build new pathways around the damaged areas. For a long time, it was believed that brain cells don't heal or you don't regrow neurons, but you can. It just takes a very long time. Hyperbaric Oxygen therapy is one way that we are trying to help Aidan. The increased oxygen and a higher atmospheric pressure can help him produce more of his own stem cells that he would produce without any therapy. Our bodies make stem cells all the time, in our bone marrow. Our stem cells are different than embryonic stem cells though. I can't even begin to explain that here.
We are hoping to take Aidan for stem cell therapy. We keep praying for a miracle, because frankly, I can't tell you what is going to happen to Aidan. I don't know if he'll always be like he is now; minimally responsive and completely dependant on someone for care or if he'll dramatically improve and be a normal little boy again. There is a whole gamut of possiblities in between the two extremes.
Aidan has come a long way in a year though. He isn't having storms any more, though they are controlled by medicine. He's breathing completely without assistance (his trach was removed 5 months after it was put in). He is now beginning to eat by mouth because he's improved his swallowing reflex. He responds to our voices, music, etc and will squeeze our fingers when we ask him to. He smiles and laughs.
This is all very hard. I want him to be like he was last year this time. I want my normal, happy, mischevious little boy back, but I can't turn back time. All I can do is pray and do everything in my power to get him the therapies that we feel are going to help him heal as much as possible. The brain is a very delicate organ. Even the neurologists can't tell us what is going to happen. We take it a day at a time and try to set reasonable accomplishable goals for him.
Our biggest goal for him physically now is for him to regain some head control. I'd love to eventually have him crawling or even rolling around. Maybe we will be able to see that soon (not in weeks or months soon, but maybe another year or so.)
I hope I haven't rambled on too much, and have given you all a more accurate view of Aidan's condition. He isn't just going to get better one day. Every day he does just a little bit more than he did the day before and most of the time it's so slight that we don't notice it until he's done something consistently and it hits us that he's doing something "new".
We greatly appreciate the continued prayers and we ask that you keep up with them. We are praying to be able to raise the money to take him for stem cell therapy. I just have a feeling that it is going to be one of the things that's going to help him the most. We do have his age on our side. Children are resilient, amazing little people. Aidan is a miracle, there's no doubt about that.
~Erin
I think a lot of times we let things that we've seen on TV cloud our perception of what happens in certain cases. I know that I had this picture in my head of Aidan being in a coma and that he would just wake up eventually, maybe requiring some physical therapy to help strengthen muscles, etc, but he would be perfectly normal. That isn't the case for Aidan. He isn't one of the kids that you see on TV that fell through ice and was brought back from the "dead", only to be in a coma for a few days with hypothermia and then wake up a few days or weeks later perfectly normal.
Aidan sustained significant brain damage due to the lack of oxygen. The parts of his brain that control visual perception were damaged. His eyesight is fine, but the connection that allows him to understand what he is seeing is damaged. Overall, his brain shrunk. The ventricles, the areas in the brain that have fluid enlarged some. When brain cells become damaged or in Aidan's case, die, the brain matter become soft and the fluid in those ventricles displaces the brain cells. It's hard to explain.
The neuro-storming that Aidan had/has is due to damage in another part of the brain. He has a hard time dealing with stressful situations, he can't regulate his temperature well, etc.
We are trying to help his brain heal those areas or help build new pathways around the damaged areas. For a long time, it was believed that brain cells don't heal or you don't regrow neurons, but you can. It just takes a very long time. Hyperbaric Oxygen therapy is one way that we are trying to help Aidan. The increased oxygen and a higher atmospheric pressure can help him produce more of his own stem cells that he would produce without any therapy. Our bodies make stem cells all the time, in our bone marrow. Our stem cells are different than embryonic stem cells though. I can't even begin to explain that here.
We are hoping to take Aidan for stem cell therapy. We keep praying for a miracle, because frankly, I can't tell you what is going to happen to Aidan. I don't know if he'll always be like he is now; minimally responsive and completely dependant on someone for care or if he'll dramatically improve and be a normal little boy again. There is a whole gamut of possiblities in between the two extremes.
Aidan has come a long way in a year though. He isn't having storms any more, though they are controlled by medicine. He's breathing completely without assistance (his trach was removed 5 months after it was put in). He is now beginning to eat by mouth because he's improved his swallowing reflex. He responds to our voices, music, etc and will squeeze our fingers when we ask him to. He smiles and laughs.
This is all very hard. I want him to be like he was last year this time. I want my normal, happy, mischevious little boy back, but I can't turn back time. All I can do is pray and do everything in my power to get him the therapies that we feel are going to help him heal as much as possible. The brain is a very delicate organ. Even the neurologists can't tell us what is going to happen. We take it a day at a time and try to set reasonable accomplishable goals for him.
Our biggest goal for him physically now is for him to regain some head control. I'd love to eventually have him crawling or even rolling around. Maybe we will be able to see that soon (not in weeks or months soon, but maybe another year or so.)
I hope I haven't rambled on too much, and have given you all a more accurate view of Aidan's condition. He isn't just going to get better one day. Every day he does just a little bit more than he did the day before and most of the time it's so slight that we don't notice it until he's done something consistently and it hits us that he's doing something "new".
We greatly appreciate the continued prayers and we ask that you keep up with them. We are praying to be able to raise the money to take him for stem cell therapy. I just have a feeling that it is going to be one of the things that's going to help him the most. We do have his age on our side. Children are resilient, amazing little people. Aidan is a miracle, there's no doubt about that.
~Erin
Tuesday, January 27, 2009
I figured I'd post an update on how Aidan is doing.
We are continuing to feed him by mouth. Right now he isn't able to take in a lot only about 1/8th of a cup right now, but we're working on it. He has been vocalizing a lot more than he had before. He's making a lot of cooing, grunting and other similar noises.
This afternoon when his nurse, Rachael, was waiting on me to unlock the van door, he was smiling and actually made a squealing sound. He only did it once, but it was very exciting. He hasn't made any noises like that to indicate he's enjoying something or that he is excited. Aidan has always loved being outside though, so maybe that's why he did it.
I met with the therapists and teachers at the preschool today to go over Aidan's IEP (individual education plan) and their assessments and goals. I think we're all on the same page as far as goals for Aidan's physical abilities and communication. I just hope that by getting him into school with other children and in an environment where people are working with him every day that it will help him surpass those goals.
We're down to the last 2 puppies out of Gracie's litter of 8. I have someone coming this evening to look at them that is interested in both of them. I will absolutely jump for joy if she takes them both. I love puppies and dogs, but I don't want to be the one dealing with a whole litter of the little buggers.
Russell's job is going well, I guess. It's all still new, though.
Well, for now, that's what is going on. I'm still working on the Valentine's afghan. This is what it will look like or very similar. I'm hoping to have it finished soon. I haven't been working on it as much as I should be, but it is coming along. I haven't decided if I'm going to raffle it off or just sell it. I don't even know if anyone is interested in it. Anyway...
I'll try to update again soon.
~Erin
We are continuing to feed him by mouth. Right now he isn't able to take in a lot only about 1/8th of a cup right now, but we're working on it. He has been vocalizing a lot more than he had before. He's making a lot of cooing, grunting and other similar noises.
This afternoon when his nurse, Rachael, was waiting on me to unlock the van door, he was smiling and actually made a squealing sound. He only did it once, but it was very exciting. He hasn't made any noises like that to indicate he's enjoying something or that he is excited. Aidan has always loved being outside though, so maybe that's why he did it.
I met with the therapists and teachers at the preschool today to go over Aidan's IEP (individual education plan) and their assessments and goals. I think we're all on the same page as far as goals for Aidan's physical abilities and communication. I just hope that by getting him into school with other children and in an environment where people are working with him every day that it will help him surpass those goals.
We're down to the last 2 puppies out of Gracie's litter of 8. I have someone coming this evening to look at them that is interested in both of them. I will absolutely jump for joy if she takes them both. I love puppies and dogs, but I don't want to be the one dealing with a whole litter of the little buggers.
Russell's job is going well, I guess. It's all still new, though.
Well, for now, that's what is going on. I'm still working on the Valentine's afghan. This is what it will look like or very similar. I'm hoping to have it finished soon. I haven't been working on it as much as I should be, but it is coming along. I haven't decided if I'm going to raffle it off or just sell it. I don't even know if anyone is interested in it. Anyway...
I'll try to update again soon.
~Erin
Friday, January 16, 2009
If it is always darkest just before the dawn ...
then we must have been in a black hole the last two weeks!
When my last job ended on 12/31, I really thought we were going to be in for the long haul in terms of keeping things together. That was the case until today.
10:30 AM -- I get a phone call on my cell. It's the guy who interviewed me last Friday ... offering me a job! If you were to ask if I thought about it, I'd paraphrase Data from Star Trek: First Contact: "0.68 seconds [...]. For an [unemployed worker], that is nearly an eternity." I start my new job on Monday and I am ecstatic about it! Thaks to everyone for the prayers and well-wishes of good luck. God is Good!
1:00 PM -- Aidan had his swallow study today. I missed the last swallow study, so it was quite fascinating to me to watch the fluoroscope while Aidan attempted to swallow foods of varying thicknesses. In the end, though, we got some wonderful news. Aidan is now able to take 1st and 2nd level baby foods by mouth, as well liquids that are thickened to at least the consistency of honey. To get the honey consistency, you take the same juice you by at the store and thicken it with a product called ThickenIt, which is available at most drug stores. They gave us a container of it on our way out. The lady performing the test was very impressed with Aidan's progress and hopes to see further improvement after 20 more Vital-Stem treatments.
6:00 PM -- We all went to PawPaw's house for dinner and to pick up some baby food Sonia brought over with her. For the first time in 11 months, Aidan actually ate some of his dinner. Sonia recorded it for posterity, though PawPaw and I were discussing politics and the media's corruption of the American Justice System in the background and it got in the way of the moment. Erin is going to get the video and then edit it before posting it to the site. We have been ordered to feed him 6 times a day this way and supplement this with the feeding we normally give him.
The pups are growing like crazy, but we are ready to give them to a good home. If you are interested, simply send an email to russdwright at gmail dot com and I'll give you all the details.
Once again, thank you so much for all the prayers. Today was proof that God has had His hands on things and that He fully intends to make things better in his time.
--Russell
When my last job ended on 12/31, I really thought we were going to be in for the long haul in terms of keeping things together. That was the case until today.
10:30 AM -- I get a phone call on my cell. It's the guy who interviewed me last Friday ... offering me a job! If you were to ask if I thought about it, I'd paraphrase Data from Star Trek: First Contact: "0.68 seconds [...]. For an [unemployed worker], that is nearly an eternity." I start my new job on Monday and I am ecstatic about it! Thaks to everyone for the prayers and well-wishes of good luck. God is Good!
1:00 PM -- Aidan had his swallow study today. I missed the last swallow study, so it was quite fascinating to me to watch the fluoroscope while Aidan attempted to swallow foods of varying thicknesses. In the end, though, we got some wonderful news. Aidan is now able to take 1st and 2nd level baby foods by mouth, as well liquids that are thickened to at least the consistency of honey. To get the honey consistency, you take the same juice you by at the store and thicken it with a product called ThickenIt, which is available at most drug stores. They gave us a container of it on our way out. The lady performing the test was very impressed with Aidan's progress and hopes to see further improvement after 20 more Vital-Stem treatments.
6:00 PM -- We all went to PawPaw's house for dinner and to pick up some baby food Sonia brought over with her. For the first time in 11 months, Aidan actually ate some of his dinner. Sonia recorded it for posterity, though PawPaw and I were discussing politics and the media's corruption of the American Justice System in the background and it got in the way of the moment. Erin is going to get the video and then edit it before posting it to the site. We have been ordered to feed him 6 times a day this way and supplement this with the feeding we normally give him.
The pups are growing like crazy, but we are ready to give them to a good home. If you are interested, simply send an email to russdwright at gmail dot com and I'll give you all the details.
Once again, thank you so much for all the prayers. Today was proof that God has had His hands on things and that He fully intends to make things better in his time.
--Russell
Saturday, January 10, 2009
"Resolutions" for 2009
As it is for many of the rest of the world out there, the start of the New Year is a time to make resolutions so they can attempt to make their lives better. Even though I need to lose weight, I feel this year I would rather set "resolutions" in regards to Aidan.
So, without further ado, here are our resolutions/goals for Aidan's continued recovery in 2009:
- Start moving towards giving Aidan regular food. Even if we don't get to feed him by mouth regularly, it would be nice to start blending real food into his formula. We have a swallow study coming up next week, so we'll see where we stand.
- Get Aidan in preschool. This is already in progress, and I believe we will start him on March 1, but we may start the Monday after his birthday. We have a meeting with the preschool on the 27th to go over his Individual Education Plan (IRP).
- See Aidan sit unsupported. He is show some improvements in head and trunk control, but there is still a lot of work to do. We were told at the preschool that this is something they will work very hard on for him.
- Start a second set of 120 HBOT treatments. Our last set of 40 starts in April. We have seen quite a bit of progress with his last 40 soft and 80 hard treatments, so I'd love to get another round going. This would be especially helpful because we want to ...
- Take Aidan somewhere to receive Stem Cell Therapy (SCT). This is one of the big ones for us. There are two places to consider right now: Mexico or China. Mexico would be the shorter trip, but China offers many more options (more injections (4-7 over a max of 4), more cells per injection (10 million vs. 1.5 million), PT/OT during stay, and room covered in cost). No matter how you look at it, it will take about $25-30,000 to cover all the expenses for Erin and Aidan to go (someone's gotta pay the bills back home). There will soon be a new ChipIn widget or two if you would like to donate towards our expenses for either of these treatments.
Here are some links if you want to learn more about SCT:
http://www.beikebiotech.com/
http://medra.com/
http://www.stemcellschina.com/
- Go back to Oklahoma to visit friends and family. I can truly appreciate how Erin felt about being away from home now. I really miss getting to see my friends and family, even if it isn't all that often. Tentative date is the weekend of the Cowboy's first home game against Georgia.
Now, for some other updates:
As was posted previously, I lost my contract job at the end of the year. I have been on the hunt for a job and think I may have one. I interviewed for a job on Friday and had a very good feeling about it. How good? When I sat down in the conference room and for the interview and had a moment alone, I looked out and saw Downtown Charlotte. Something about that view felt very ... right. In fact, the whole thing made me feel like I was back at my last job in Tulsa, even though the office space was pretty much empty (the company is moving all IT operations to Charlotte, but the move isn't complete yet). The interview even felt like it did when I interviewed for my last job in Tulsa. The interviewer, who would be my manager, seemed happy to hear I was immediately available and appreciated the approach I take to my job. We'll know for sure the first part of next week.
Erin is in the process of creating a Valentine-themed afghan. She is deciding if she is going to raffle it off or simply sell it. Stay tuned for more details as they become available. We have also created a CafePress account and will have products available to buy there in the near future. We'll post the link as soon as we have products ready. Our other storefront is still available if you want to purchase bracelets, though.
Hope everyone had a great holiday, and enjoy your weekend!
-- Russell
So, without further ado, here are our resolutions/goals for Aidan's continued recovery in 2009:
- Start moving towards giving Aidan regular food. Even if we don't get to feed him by mouth regularly, it would be nice to start blending real food into his formula. We have a swallow study coming up next week, so we'll see where we stand.
- Get Aidan in preschool. This is already in progress, and I believe we will start him on March 1, but we may start the Monday after his birthday. We have a meeting with the preschool on the 27th to go over his Individual Education Plan (IRP).
- See Aidan sit unsupported. He is show some improvements in head and trunk control, but there is still a lot of work to do. We were told at the preschool that this is something they will work very hard on for him.
- Start a second set of 120 HBOT treatments. Our last set of 40 starts in April. We have seen quite a bit of progress with his last 40 soft and 80 hard treatments, so I'd love to get another round going. This would be especially helpful because we want to ...
- Take Aidan somewhere to receive Stem Cell Therapy (SCT). This is one of the big ones for us. There are two places to consider right now: Mexico or China. Mexico would be the shorter trip, but China offers many more options (more injections (4-7 over a max of 4), more cells per injection (10 million vs. 1.5 million), PT/OT during stay, and room covered in cost). No matter how you look at it, it will take about $25-30,000 to cover all the expenses for Erin and Aidan to go (someone's gotta pay the bills back home). There will soon be a new ChipIn widget or two if you would like to donate towards our expenses for either of these treatments.
Here are some links if you want to learn more about SCT:
http://www.beikebiotech.com/
http://medra.com/
http://www.stemcellschina.com/
- Go back to Oklahoma to visit friends and family. I can truly appreciate how Erin felt about being away from home now. I really miss getting to see my friends and family, even if it isn't all that often. Tentative date is the weekend of the Cowboy's first home game against Georgia.
Now, for some other updates:
As was posted previously, I lost my contract job at the end of the year. I have been on the hunt for a job and think I may have one. I interviewed for a job on Friday and had a very good feeling about it. How good? When I sat down in the conference room and for the interview and had a moment alone, I looked out and saw Downtown Charlotte. Something about that view felt very ... right. In fact, the whole thing made me feel like I was back at my last job in Tulsa, even though the office space was pretty much empty (the company is moving all IT operations to Charlotte, but the move isn't complete yet). The interview even felt like it did when I interviewed for my last job in Tulsa. The interviewer, who would be my manager, seemed happy to hear I was immediately available and appreciated the approach I take to my job. We'll know for sure the first part of next week.
Erin is in the process of creating a Valentine-themed afghan. She is deciding if she is going to raffle it off or simply sell it. Stay tuned for more details as they become available. We have also created a CafePress account and will have products available to buy there in the near future. We'll post the link as soon as we have products ready. Our other storefront is still available if you want to purchase bracelets, though.
Hope everyone had a great holiday, and enjoy your weekend!
-- Russell
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