I just thought that I would update about how well Adysen is doing. More than likely I will update again come Thursday or so because she has a Doctors appointment.
Adysen is now 7 months post surgery and she is now braving the adventure of walking. She is standing herself up in the middle of the room and then will take a few steps with out holding anything. To watch her do this is absolutely amazing since before surgery she wasn't even attempting this.
I hope that no one feels bad for our family. I just like to try to keep people updated. We wouldn't change our lives for anything because our daughter is a miracle.
Monday, November 9, 2009
Monday, September 7, 2009
Getting Started
Well I am just starting out with this blogging. I thought that it would be nice to make a website that shares the story of my daughter. For what she has been through, she is amazing.
Adysen is a very special little girl in many ways. When she was 4 months old she started to have seizures. When she was 5 months old the doctors diagnosed her seizures as infantile spasms. They started trying different medications at this time. She was sent home on 2 different medications one of which was a shot, called ACTH, that I had to give her 2 times a day. The other medication was Topomax. The medications lessened the seizures but never stopped them. So they took her off the shots and put her on 2 more medications taking the total to 3 medications. At this point a couple months went by on Topomax, Keppra, and Lamictal. However, when those did really help they took her off of the Keppra and then we went on the Vigabitrin, which you can not get at a local drug store. Thankfully we had someone who get it for us. This did make the seizures much less but still she was having them. So, just before she turned 1 they decided to do another MRI. This MRI showed something.
The MRI showed that the folds in her brain were a lot thicker than they should be. When told by a neurologist that she had Cortical Dysplasia you kind of just wonder.
Cortical Dysplasia is when the neuron is the brain did not travel where they were suppose to while she was in the womb. Not only is it something that caused her seizures but we find out that medications aren't going to help and this will never go away. So, pretty much the only option that we had was to find out if she was able to have brain surgery. The only other option was to not do anything and take the chance of her getting so disabled she would never have any part of a normal life. So in September of 2008 she went through a week worth of testing. A month later they called and told us that she was able to have the surgery. So in December they scheduled her for surgery in Fedruary-March of 2009 which was postponed because she ended up being sick. So it was postponed for about a month. So on March 31 she had the first part of the surgery. This surgery placed grids directly onto her brain. They left them in place for 3 days at which time they had enough information to do the second surgery.
However, we had a decision to make. We had to decide if she was going to have what they call a resection or a right functional hemispherotomy. The choice isn't easy no matter which you choose. However, with her the cortical dysplasia was so bad that it effected most of her right hemisphere. So, we made the decision to do the right functional hemisphereotomy. This is where they disconnect the right side of the brain from the left side. So, when we saw her after surgery she was not able to move her left arm or leg.
It has now been 5 months since surgery with 3 days a week of physical and occupational therapy and 1 day a week for speech therapy. Before surgery she was doing a lot more than they ever thought she would but she was still very delayed. Now, being 5 months out of surgery she is almost walking. Something that we don't think they expected this close to surgery. She is a very strong and determinded little girl. At the age of 2 she has been through more than most people have in there whole life.
Adysen is a very special little girl in many ways. When she was 4 months old she started to have seizures. When she was 5 months old the doctors diagnosed her seizures as infantile spasms. They started trying different medications at this time. She was sent home on 2 different medications one of which was a shot, called ACTH, that I had to give her 2 times a day. The other medication was Topomax. The medications lessened the seizures but never stopped them. So they took her off the shots and put her on 2 more medications taking the total to 3 medications. At this point a couple months went by on Topomax, Keppra, and Lamictal. However, when those did really help they took her off of the Keppra and then we went on the Vigabitrin, which you can not get at a local drug store. Thankfully we had someone who get it for us. This did make the seizures much less but still she was having them. So, just before she turned 1 they decided to do another MRI. This MRI showed something.
The MRI showed that the folds in her brain were a lot thicker than they should be. When told by a neurologist that she had Cortical Dysplasia you kind of just wonder.
Cortical Dysplasia is when the neuron is the brain did not travel where they were suppose to while she was in the womb. Not only is it something that caused her seizures but we find out that medications aren't going to help and this will never go away. So, pretty much the only option that we had was to find out if she was able to have brain surgery. The only other option was to not do anything and take the chance of her getting so disabled she would never have any part of a normal life. So in September of 2008 she went through a week worth of testing. A month later they called and told us that she was able to have the surgery. So in December they scheduled her for surgery in Fedruary-March of 2009 which was postponed because she ended up being sick. So it was postponed for about a month. So on March 31 she had the first part of the surgery. This surgery placed grids directly onto her brain. They left them in place for 3 days at which time they had enough information to do the second surgery.
However, we had a decision to make. We had to decide if she was going to have what they call a resection or a right functional hemispherotomy. The choice isn't easy no matter which you choose. However, with her the cortical dysplasia was so bad that it effected most of her right hemisphere. So, we made the decision to do the right functional hemisphereotomy. This is where they disconnect the right side of the brain from the left side. So, when we saw her after surgery she was not able to move her left arm or leg.
It has now been 5 months since surgery with 3 days a week of physical and occupational therapy and 1 day a week for speech therapy. Before surgery she was doing a lot more than they ever thought she would but she was still very delayed. Now, being 5 months out of surgery she is almost walking. Something that we don't think they expected this close to surgery. She is a very strong and determinded little girl. At the age of 2 she has been through more than most people have in there whole life.
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