Tuesday, December 30, 2008
Monday, December 15, 2008
A December Day at Disneyland
Friday, November 21, 2008
School Pictures
I know it's been a while since I posted an update, but rest assured, Aiden is doing GREAT! I've just been very busy working on redesigning the website for the Hemispherectomy Foundation.
Here's the link in case you are interested: http://www.hemifoundation.org/
I am so proud to be a part of this Foundation and I'm enjoying working with them to support and inform those who face this life-changing surgery.
I promise I will post a more detailed update on Aiden and his progress as soon as I can.
Wishing you all a very Happy Thanksgiving!
Monday, October 27, 2008
Disneyland
October 26, 2008
We took Aiden to Disneyland for the first time last Sunday and he LOVED it!!! We were able to get him on 7 or 8 rides and he loved them all. He was laughing and squealing and just having a blast. He was mesmerized by it all. I think if we would have gone pre-surgery, he wouldn't have enjoyed it as much.
Thursday, October 23, 2008
Halloween Treats
Yesterday, we received a goodie bag from the Hemispherectomy Foundation. It had cool Halloween stickers and candy. Most of the candy melted because it was 103 degrees here yesterday. There was also a pair of Oogly-googly glasses and here Aiden is wearing them.
Thank you Hemispherectomy Foundation!!!
Tuesday, October 21, 2008
Big boys carry their own backpacks.
October 21, 2008
Today, I thought we'd see if Aiden wouldn't mind carrying his own backpack to help mom out a bit. Since he's such a big boy now and walking everywhere, it sounded like a good idea. The backpack is very light. There are no books inside, just his lunch. For some reason it threw his balance off, big-time!!! He kept swaying back and forth like he was going to tip over; and then he did. Boom, down on his bum. He got up with a little help and made it to the car with the backpack on! It was so cute and he was so proud of himself. Mom was too!
Today, I thought we'd see if Aiden wouldn't mind carrying his own backpack to help mom out a bit. Since he's such a big boy now and walking everywhere, it sounded like a good idea. The backpack is very light. There are no books inside, just his lunch. For some reason it threw his balance off, big-time!!! He kept swaying back and forth like he was going to tip over; and then he did. Boom, down on his bum. He got up with a little help and made it to the car with the backpack on! It was so cute and he was so proud of himself. Mom was too!
Monday, October 20, 2008
Mr. Pumpkin
October 20, 2008
It's finally starting to cool down in California after a very long, hot summer. The holidays are also just around the corner and it's very exciting. Yesterday, we took Aiden to the pumpkin patch and got some great shots of him.
Progress report: Aiden's mood is 90% better than it was a month ago. He is so much happier and it seems as if there is no more pain at all. He tolerates going out and being around people and isn't so afraid anymore. The last article published in the newspaper talked about how Aiden didn't like to be tickled anymore. Well, now he laughs that great Aiden laugh when we tickle him. The doctors were right; he just needed time to heal.
Aiden is walking everywhere! He'd rather walk than crawl and he's getting so much better at it. And he just loves to be outside. So much so that we decided to buy annual passes to Disneyland so Aiden can practice even more walking and enjoy all the sights and fun stuff at Disneyland whenever we want! We are going to take Aiden this coming Sunday and it will be his first time! We are so excited to take him!
Before his surgery, Aiden only ate baby food because he has texture, flavor and chewing issues. He didn't like anything homemade because it has too much flavor. Well, a few weeks ago, we were having lunch together. Aiden was feeding himself his pureed food and I was having soup. He took my spoon and fed himself a bite of my soup and went back for more. He ended up eating 1/4 of soup and took some bites of cracker. Later we went to Costco and he tried yogurt and a berry smoothie. He loved it. Now each meal consists of at least some "real" food and with practice and therapy I know he will chew one day!
Although Aiden still can't say any words, he tries to imitate the sounds he hears. So, if you say banana, he says "hu-hu-hu", or momma is "nan-nan" and uh oh is "uh ah". This is pretty cool because before the surgery all he said was "da-da-da-da-da" to everything. I'm looking forward to when we can take him off Topamax because that drug is a language inhibitor.
I have always felt with Aiden that every little accomplishment is worth celebrating. So even though these things come naturally to most kids, it takes hard work and much practice for Aiden to reach these milestones. I am so proud of him!
Monday, October 13, 2008
"Buddy Booby's Birthmark"
October 13, 2008
Today, Aiden and I received a gift from Donna and Evan Ducker, authors of the book "Buddy Booby's Birthmark". They came across Aiden's website and were so touched by his story that they wanted to send us a copy. Evan has a port wine stain birthmark, similar to Aiden's. He and his mom Donna wanted to write this book so that other kids with birthmarks would have a character to relate to. The book also sends a message about how a person's personality should define them, not their appearance.
There is a special section in the book called "The Birth of Buddy". It talks about the author's personal experience with her son having a port wine stain. I cried my eyes out when I read it because I could relate to the insensitive remarks Donna and Even endured about his birthmark. It just breaks my heart when people are so hurtful to those who are different. Thankfully, it's been a while since someone has been down-right mean about Aiden's birthmark. Occasionally, people will look at him curiously and I'll offer to explain and usually, I'll get a hug or a kind remark about how cute he is. I'm finding out more that there are really good and caring people in this world.
Kids and adults could learn a very valuable lesson from this book. It would also be great for schools and doctors offices. Maybe the more people that know about birthmarks and their associated conditions, the less likely they'll be to judge. We can only hope. To order a copy of this book go to http://www.buddyboobysbirthmark.com/.
Today, Aiden and I received a gift from Donna and Evan Ducker, authors of the book "Buddy Booby's Birthmark". They came across Aiden's website and were so touched by his story that they wanted to send us a copy. Evan has a port wine stain birthmark, similar to Aiden's. He and his mom Donna wanted to write this book so that other kids with birthmarks would have a character to relate to. The book also sends a message about how a person's personality should define them, not their appearance.
There is a special section in the book called "The Birth of Buddy". It talks about the author's personal experience with her son having a port wine stain. I cried my eyes out when I read it because I could relate to the insensitive remarks Donna and Even endured about his birthmark. It just breaks my heart when people are so hurtful to those who are different. Thankfully, it's been a while since someone has been down-right mean about Aiden's birthmark. Occasionally, people will look at him curiously and I'll offer to explain and usually, I'll get a hug or a kind remark about how cute he is. I'm finding out more that there are really good and caring people in this world.
Kids and adults could learn a very valuable lesson from this book. It would also be great for schools and doctors offices. Maybe the more people that know about birthmarks and their associated conditions, the less likely they'll be to judge. We can only hope. To order a copy of this book go to http://www.buddyboobysbirthmark.com/.
Tuesday, September 30, 2008
Aiden on UCLA's Home Page
September 30, 2008
Each month, the UCLA website features a medical procedure performed by their surgeons. We were fortunate enough to have UCLA media document Aiden's surgery and recovery so we could share his story. Check it out at: http://www.uclahealth.org/
Each month, the UCLA website features a medical procedure performed by their surgeons. We were fortunate enough to have UCLA media document Aiden's surgery and recovery so we could share his story. Check it out at: http://www.uclahealth.org/
Monday, September 29, 2008
First Post-Op Appointment
September 29, 2008
We went to UCLA today to meet with Dr. Mathern so he could assess Aiden one month after his surgery. He is very pleased with Aiden's progress and was pretty tickled when Aiden cried because he was afraid of the doctor. He said that's a good sign that Aiden is more aware of his surroundings. We are to schedule an MRI in 5 months and at that time, Dr. Mathern will make his first major assessment of Aiden's recovery and brain function. He reiterated that Aiden is still very much in the healing process.
Over the weekend, Aiden had been practicing feeding himself. It is so cute to watch but messy. I couldn't care less about the mess; that's how he'll learn. I'm just so happy that he's making progress every day and so much faster than pre-surgery.
We went to UCLA today to meet with Dr. Mathern so he could assess Aiden one month after his surgery. He is very pleased with Aiden's progress and was pretty tickled when Aiden cried because he was afraid of the doctor. He said that's a good sign that Aiden is more aware of his surroundings. We are to schedule an MRI in 5 months and at that time, Dr. Mathern will make his first major assessment of Aiden's recovery and brain function. He reiterated that Aiden is still very much in the healing process.
Over the weekend, Aiden had been practicing feeding himself. It is so cute to watch but messy. I couldn't care less about the mess; that's how he'll learn. I'm just so happy that he's making progress every day and so much faster than pre-surgery.
Another cool thing he's doing is walking, by himself, to the treadmill as soon as we get to therapy. It's like he's saying "let's do this!". Check out our YouTube channel (http://www.youtube.com/user/wtrshouse) to see him feeding himself and walking on the treadmill.
Thursday, September 25, 2008
News Article Link
September 25, 2008
Here's the link to the follow-up article in the SGV Tribune.
http://www.sgvtribune.com/highlanders/azusa/ci_10557446
Here's the link to the follow-up article in the SGV Tribune.
http://www.sgvtribune.com/highlanders/azusa/ci_10557446
Wednesday, September 24, 2008
Follow-Up Article
September 24, 2008
The article is coming out tomorrow (Thursday, Sept. 25) on the cover of the Azusa Herald Highlander (distributed in the San Gabriel Valley Tribune as a special section) and in a number of the other Highlander publications.
Don't get the San Gabriel Valley Tribune? Not to worry. It will also be on the SGV Tribune web site. I will post the link on the media page on Aiden's website (http://www.aidenslife.com/Media.html) as soon as it becomes available.
The article is coming out tomorrow (Thursday, Sept. 25) on the cover of the Azusa Herald Highlander (distributed in the San Gabriel Valley Tribune as a special section) and in a number of the other Highlander publications.
Don't get the San Gabriel Valley Tribune? Not to worry. It will also be on the SGV Tribune web site. I will post the link on the media page on Aiden's website (http://www.aidenslife.com/Media.html) as soon as it becomes available.
Monday, September 22, 2008
Aiden's Walk
September 22, 2008
I made a little movie out of a few different videos I took of Aiden walking after surgery. It shows how much he has progressed over the last few weeks. Enjoy!
Thursday, September 18, 2008
Too excited to wait
September 18, 2008I usually wait until the end of the day to post updates, but I just couldn't wait. I brought Aiden outside to put him in the van so grandma could take him to school. I stood him up just outside the front door to get a picture when he just started walking on his own. He walked all the way from the house to the van by himself. I could kick myself for not having the video camera with me. Hopefully, when he comes home from school he'll walk some more and I'll get it on video.
Wednesday, September 17, 2008
What a difference a nap makes!
September 17, 2008
Lately, Aiden hasn't been napping. I would try to rock him to sleep but he'd just keep getting down and trying to play, so I'd just let him. Or, I'd put him in his bed and he'd just scream and cry until I took him out. Then he'd be extremely cranky in the evening. He was wearing me and his grandma out. So, I spoke with Aiden's teacher about it this morning. She suggested that I put him in bed and leave the room and just let him cry himself to sleep. I knew that would be hard for me because I don't want him to cry and I feel the need to rescue him when he does. But, I decided to give it a try. So, when we got home from school today, we watched a 30 minute episode of "Play With Me Sesame", and then I said, "Ok, dude. Time for a nap". I put him in his bed and went into the other room. He cried for about 5 minutes while I folded some laundry. I took a peek a few minutes later and he was lying down, stroking his hair. A few minutes later, I took another peek and he was asleep. He slept for two and a half hours. When he woke up, he was in a great mood. We played, ate dinner, played some more, took a bath and now he's getting ready for bed. He's like a different kid tonight. He really needed that nap!
And there's more progress Aiden has made. Before the surgery, I would have to hold him down to brush his teeth. Now, he lets me do it without a fight. In fact, he seems to enjoy it now. It's probably because he has an electric toothbrush and he really likes the vibration in his mouth. He holds his mouth open and lets me do a thorough cleaning. Before surgery, if we'd tell him "no" he'd hit himself on the head. Now, he just stops doing what he's not supposed to be doing. Wow! Something new that he's doing is drinking from a cup. I hold the cup and he takes a drink. We mostly practice in the bath tub so as not to get everything wet. Tonight, I set his cup on the edge of the tub and he picked it up and took a drink on his own. Not perfectly, but he tried it twice! I was so proud, I almost cried.
Lately, Aiden hasn't been napping. I would try to rock him to sleep but he'd just keep getting down and trying to play, so I'd just let him. Or, I'd put him in his bed and he'd just scream and cry until I took him out. Then he'd be extremely cranky in the evening. He was wearing me and his grandma out. So, I spoke with Aiden's teacher about it this morning. She suggested that I put him in bed and leave the room and just let him cry himself to sleep. I knew that would be hard for me because I don't want him to cry and I feel the need to rescue him when he does. But, I decided to give it a try. So, when we got home from school today, we watched a 30 minute episode of "Play With Me Sesame", and then I said, "Ok, dude. Time for a nap". I put him in his bed and went into the other room. He cried for about 5 minutes while I folded some laundry. I took a peek a few minutes later and he was lying down, stroking his hair. A few minutes later, I took another peek and he was asleep. He slept for two and a half hours. When he woke up, he was in a great mood. We played, ate dinner, played some more, took a bath and now he's getting ready for bed. He's like a different kid tonight. He really needed that nap!
And there's more progress Aiden has made. Before the surgery, I would have to hold him down to brush his teeth. Now, he lets me do it without a fight. In fact, he seems to enjoy it now. It's probably because he has an electric toothbrush and he really likes the vibration in his mouth. He holds his mouth open and lets me do a thorough cleaning. Before surgery, if we'd tell him "no" he'd hit himself on the head. Now, he just stops doing what he's not supposed to be doing. Wow! Something new that he's doing is drinking from a cup. I hold the cup and he takes a drink. We mostly practice in the bath tub so as not to get everything wet. Tonight, I set his cup on the edge of the tub and he picked it up and took a drink on his own. Not perfectly, but he tried it twice! I was so proud, I almost cried.
Tuesday, September 16, 2008
More Media Coverage
September 16, 2008
San Gabriel Valley Tribune reporter, Evelyn Barge, and photographer, Watchara Phomicinda, came to Aiden's school today to get footage for a follow-up article. I will post the date when the article is expected to run. Watchara has been following Aiden's story and documenting everything with his camera. He is a very talented photographer and has formed a bond with Aiden and our family. He was even there with us on Aiden's surgery day. He's been putting together a slideshow to be featured on the sgvn.com website.
Nancy Williams with UCLA media also came to Aiden's school. She's doing a webcast on Aiden, Sturge-Weber Syndrome and his hemispherectomy. Each month the UCLA website features a medical procedure performed at UCLA. Right now, the feature story is about a girl who was struggl with a debilitating neurological diease, Dystonia, until surgeons at UCLA operated and gave her a new lease on life. Check out the story at http://www.uclahealth.org. Aiden's webcast will be available on the same link in a week or two. Check back soon to see his story.
San Gabriel Valley Tribune reporter, Evelyn Barge, and photographer, Watchara Phomicinda, came to Aiden's school today to get footage for a follow-up article. I will post the date when the article is expected to run. Watchara has been following Aiden's story and documenting everything with his camera. He is a very talented photographer and has formed a bond with Aiden and our family. He was even there with us on Aiden's surgery day. He's been putting together a slideshow to be featured on the sgvn.com website.
Nancy Williams with UCLA media also came to Aiden's school. She's doing a webcast on Aiden, Sturge-Weber Syndrome and his hemispherectomy. Each month the UCLA website features a medical procedure performed at UCLA. Right now, the feature story is about a girl who was struggl with a debilitating neurological diease, Dystonia, until surgeons at UCLA operated and gave her a new lease on life. Check out the story at http://www.uclahealth.org. Aiden's webcast will be available on the same link in a week or two. Check back soon to see his story.
Monday, September 15, 2008
A Great Monday!
September 15, 2008
Aiden did so well today. He didn't even cry or fuss when I took him to therapy. He was actually excited to be walking outside with Becky, his therapist. Becky said they were going to try the treadmill after I left. I'll have to get that on video on Wednesday.
Aiden's teacher, Pam, said he did really well in school today. He stayed three and a half hours; that's a full day for his 'grade'! Only three and a half weeks after surgery and he's tolerating a full day at school! I'm so proud of him.
We were starting to worry about his behavior but he is getting better. I think as time goes by, he'll just continue to get better. He's starting to make more of his normal verbalizations that he made before surgery, but lost afterwards. I hope one day Aiden can say what's on his mind. It's got to be so frustrating for him to know what he wants but not be able to tell us.
His energy level seems to be increasing each day. He just goes, goes, goes. If only I had as much energy as he does. Whew! Mom's exhausted!!!!
Aiden did so well today. He didn't even cry or fuss when I took him to therapy. He was actually excited to be walking outside with Becky, his therapist. Becky said they were going to try the treadmill after I left. I'll have to get that on video on Wednesday.
Aiden's teacher, Pam, said he did really well in school today. He stayed three and a half hours; that's a full day for his 'grade'! Only three and a half weeks after surgery and he's tolerating a full day at school! I'm so proud of him.
We were starting to worry about his behavior but he is getting better. I think as time goes by, he'll just continue to get better. He's starting to make more of his normal verbalizations that he made before surgery, but lost afterwards. I hope one day Aiden can say what's on his mind. It's got to be so frustrating for him to know what he wants but not be able to tell us.
His energy level seems to be increasing each day. He just goes, goes, goes. If only I had as much energy as he does. Whew! Mom's exhausted!!!!
Friday, September 12, 2008
Adjusting
Last week Aiden had been exhibiting some behavioral changes. He seemed very cranky and upset when we'd venture outside the house. We think it may be because he is more aware of what's going on around him since the surgery. And it may be because he was getting poked and hurt quite often in the hospital so he is just very cautious about where we take him and who we let near him. We used to be able to take him anywhere, introduce him to anyone and he was always happy-go-lucky. Last week, he cried and got upset when we took him to school, therapy, when strangers approached him and when he'd be in an unfamiliar environment. On one hand, it's great that he's more aware. On the other hand, he got upset, A LOT!
This week, Aiden seemed to get better and better each day. He's getting more familiar with the people at school and he hardly cries when I drop him off now. He seems to trust that the teachers and therapists aren't going to hurt him. He has so much energy these days. I'm lucky if I can get him to take a nap. He wants to play and walk a lot. He takes us by the hand and leads us where ever he wants to go. He loves to be outside and go for walks around the neighborhood. We definately stay very busy!
This week, Aiden seemed to get better and better each day. He's getting more familiar with the people at school and he hardly cries when I drop him off now. He seems to trust that the teachers and therapists aren't going to hurt him. He has so much energy these days. I'm lucky if I can get him to take a nap. He wants to play and walk a lot. He takes us by the hand and leads us where ever he wants to go. He loves to be outside and go for walks around the neighborhood. We definately stay very busy!
Friday, September 5, 2008
Helping the Cause
September 5, 2008
My friend Elsie had an idea to help raise funds for the Sturge-Weber Foundation. So she, and the girls at Villagio Salon, sold raffle tickets for prize gift baskets. There were 6 different baskets. The contents of the gift baskets were donated by local companies like Trader Joe's, Villagio Salon, Village Kitchen etc. They drew 6 raffle winners tonight. Elsie told me that they raised over $1,000. Her son even went door-to-door and asked for donations. She's going to donate the money on Aiden's FirstGiving website which will go directly to the Sturge-Weber Foundation. I just want to say "Thank you" to all who contributed to Elsie's fundraising efforts. And thank you Elsie for spreading the word about Sturge-Weber to everyone who comes in the salon.
A few months ago, in an effort to raise awareness for Sturge-Weber, I emailed Ragdoll, the creator of shows Teletubbies and Boohbah (Aiden's favorites). I attached a link to Aiden's website and explained the need for awareness of this rare syndrome. I was lucky enough to get a reply from a lady named Tina who was very touched by Aiden's story. She decided to donate some merchandise to help raise awareness for Sturge-Weber and she shipped me two huge boxes of Teletubby and Boohbah items. I told the Sturge-Weber Foundation about the generous donation and we are still trying to decide the best way to use these items which include: Stickers, Ornaments, Purses, Notepads, Buckets, Postcards, Gift Wrap, Keepsake Boxs, Figurines, Headbands, Dolls, Tee Shirts, Posters, Balloons and Beach Balls. Thank you, Tina!!!
My friend Elsie had an idea to help raise funds for the Sturge-Weber Foundation. So she, and the girls at Villagio Salon, sold raffle tickets for prize gift baskets. There were 6 different baskets. The contents of the gift baskets were donated by local companies like Trader Joe's, Villagio Salon, Village Kitchen etc. They drew 6 raffle winners tonight. Elsie told me that they raised over $1,000. Her son even went door-to-door and asked for donations. She's going to donate the money on Aiden's FirstGiving website which will go directly to the Sturge-Weber Foundation. I just want to say "Thank you" to all who contributed to Elsie's fundraising efforts. And thank you Elsie for spreading the word about Sturge-Weber to everyone who comes in the salon.
A few months ago, in an effort to raise awareness for Sturge-Weber, I emailed Ragdoll, the creator of shows Teletubbies and Boohbah (Aiden's favorites). I attached a link to Aiden's website and explained the need for awareness of this rare syndrome. I was lucky enough to get a reply from a lady named Tina who was very touched by Aiden's story. She decided to donate some merchandise to help raise awareness for Sturge-Weber and she shipped me two huge boxes of Teletubby and Boohbah items. I told the Sturge-Weber Foundation about the generous donation and we are still trying to decide the best way to use these items which include: Stickers, Ornaments, Purses, Notepads, Buckets, Postcards, Gift Wrap, Keepsake Boxs, Figurines, Headbands, Dolls, Tee Shirts, Posters, Balloons and Beach Balls. Thank you, Tina!!!
Back To School
September 5, 2008Aiden went to school three days this week but for only an hour at a time. The first two days, I stayed in class with him so I could see when he was ready to go home. He got very upset when I brought him into the classroom. He cried so much and that just isn't like him. I asked Pam, his teacher, why she thought he was so upset and she said because I was there. So, today, I dropped him off and after an hour, I called Pam to see how he was doing and she said he did better. I took him home shortly after that and he went right to sleep. Sleep is very important right now because he is still healing.
Physical and occupational therapy will start next week. He will now be getting both of these therapies three times per week. He will also have one-on-one speech therapy in addition to group. We are going to put off feeding therapy for another week or so just because we don't want to overwhelm him. Aiden will also get fitted for a new pair of DAFO's. Those are the braces Aiden wears to help him walk.
Aiden wants to walk more and he's getting better at it. He has more balance and strength because we practice every chance we get. He takes us by the hand and leads us where he wants to go.
Tuesday, September 2, 2008
Staples Out
September 2, 2008
Aiden had his staples removed this afternoon by his pediatrician. It was yet another painful experience he had to endure. My heart breaks for him because he has had to deal with so much in his short life. I sometimes wonder how he can go through all the surgeries, laser treatments, pokes and pulls and still be the sweet, happy boy that he is.
Tomorrow, Aiden will go to back to school. His doctor said it's okay and he seems to be ready. I can tell he's getting bored here at the house all day. I'll sit in class with him and make sure he's okay and not overwhelmed. His teacher said it would be okay to take him home early if a full day is more than he can tolerate.
While I'm at Aiden's school, I will check with the therapists to see about getting him back on the schedule. His doctors at UCLA cleared him to resume therapy any time.
Aiden had his staples removed this afternoon by his pediatrician. It was yet another painful experience he had to endure. My heart breaks for him because he has had to deal with so much in his short life. I sometimes wonder how he can go through all the surgeries, laser treatments, pokes and pulls and still be the sweet, happy boy that he is.
Tomorrow, Aiden will go to back to school. His doctor said it's okay and he seems to be ready. I can tell he's getting bored here at the house all day. I'll sit in class with him and make sure he's okay and not overwhelmed. His teacher said it would be okay to take him home early if a full day is more than he can tolerate.
While I'm at Aiden's school, I will check with the therapists to see about getting him back on the schedule. His doctors at UCLA cleared him to resume therapy any time.
Monday, September 1, 2008
Aiden's story on the news
September 1, 2008
Click on the link below to see Aiden's story on the news.
http://abclocal.go.com/kabc/story?section=news/health&id=6364364
Click on the link below to see Aiden's story on the news.
http://abclocal.go.com/kabc/story?section=news/health&id=6364364
Saturday, August 30, 2008
Third Day Home
August 30, 2008
This day has been amazing. Aiden has had even less pain and discomfort today so he wanted to play a lot. We rolled the ball back and forth to each other and we colored. He scooted around the kitchen while I made breakfast and he got in to the Tupperware just like he had done before the surgery. He has a Leap Frog Fridge Phonics and he put the letters in the slot. I would almost forget he had the surgery if it weren't for the "t" shaped incision on his head.
The most amazing thing was when he walked. I posted a video to capture the moment. http://www.youtube.com/watch?v=m6MrU_qrkO4
I can't wait to see his progress once he resumes therapy!
This day has been amazing. Aiden has had even less pain and discomfort today so he wanted to play a lot. We rolled the ball back and forth to each other and we colored. He scooted around the kitchen while I made breakfast and he got in to the Tupperware just like he had done before the surgery. He has a Leap Frog Fridge Phonics and he put the letters in the slot. I would almost forget he had the surgery if it weren't for the "t" shaped incision on his head.
The most amazing thing was when he walked. I posted a video to capture the moment. http://www.youtube.com/watch?v=m6MrU_qrkO4
I can't wait to see his progress once he resumes therapy!
Friday, August 29, 2008
Second Day Home
August 29, 2008
Aiden slept very well last night. No interruptions from nurses checking his vitals every two hours. He has had more energy today and even less pain. He's been laughing and smiling a lot. He even crawled on all fours despite the left sided weakness. He just gets stronger and stronger every day.
I just got word from Karen Ball at the Sturge-Weber Foundation that the pathologist at UCLA, Dr. Vinters, sent a portion of Aiden's brain tissue to the Blood and Tissue Bank in Maryland for a study on Sturge-Weber Syndrome. Before the surgery, I specified that I wanted to donate Aiden's resected tissue to be researched to help find out what causes this disease and maybe one day find a cure or less invasive treatment for others who have SWS.
Aiden's news story has been rescheduled to air on Monday, Sept. 1st on KABC-Los Angeles, Channel 7 (Southern California). I will also post the news clip on the website. The story is meant to raise awareness for Sturge-Weber Syndrome and to help other parents of SWS kids who are trying to decide if hemispherectomy surgery is right for their child. I would recommend neurosurgeon, Dr. Mathern, at UCLA to anyone considering this surgery. The level of care by doctors and nurses at UCLA was a huge factor in Aiden's quick recovery.
Aiden slept very well last night. No interruptions from nurses checking his vitals every two hours. He has had more energy today and even less pain. He's been laughing and smiling a lot. He even crawled on all fours despite the left sided weakness. He just gets stronger and stronger every day.
I just got word from Karen Ball at the Sturge-Weber Foundation that the pathologist at UCLA, Dr. Vinters, sent a portion of Aiden's brain tissue to the Blood and Tissue Bank in Maryland for a study on Sturge-Weber Syndrome. Before the surgery, I specified that I wanted to donate Aiden's resected tissue to be researched to help find out what causes this disease and maybe one day find a cure or less invasive treatment for others who have SWS.
Aiden's news story has been rescheduled to air on Monday, Sept. 1st on KABC-Los Angeles, Channel 7 (Southern California). I will also post the news clip on the website. The story is meant to raise awareness for Sturge-Weber Syndrome and to help other parents of SWS kids who are trying to decide if hemispherectomy surgery is right for their child. I would recommend neurosurgeon, Dr. Mathern, at UCLA to anyone considering this surgery. The level of care by doctors and nurses at UCLA was a huge factor in Aiden's quick recovery.
Thursday, August 28, 2008
Home
August 28, 2008
It's hard to believe but it's true. Aiden is home from the hospital!
Aiden has been doing so well, no fever, no infection, no complications whatsoever so everyone agreed it was time to send Aiden home to finish his recovery in a familiar environment.
As soon I put Aiden in the car seat, he perked up. He was so excited to go for a ride in the car. He kept looking over at me and smiling. He knew when we were home because he started making even more familiar sounds. He was happy to be home.
We go back to UCLA next Wednesday for a follow-up appointment and to get the staples removed. Dr. Mathern wants to see Aiden in one month, then again in six months. Otherwise, Aiden is ready to start his outpatient therapy.
Aiden is still pretty weak on his left side, but he was actually able to walk a little bit while I held him around his waist. He enjoyed his first real bath in a week. We've just been snuggling and relaxing since we got home. What an amazing boy!
Keep an eye out for a news broadcast on ABC Channel 7 tomorrow afternoon/evening. They are running a story on Aiden, Sturge-Weber Syndrome and his Hemispherectomy surgery. If you miss it on tv, don't worry. I will be able to post it on Aiden's website in a few days.
It's hard to believe but it's true. Aiden is home from the hospital!
Aiden has been doing so well, no fever, no infection, no complications whatsoever so everyone agreed it was time to send Aiden home to finish his recovery in a familiar environment.
As soon I put Aiden in the car seat, he perked up. He was so excited to go for a ride in the car. He kept looking over at me and smiling. He knew when we were home because he started making even more familiar sounds. He was happy to be home.
We go back to UCLA next Wednesday for a follow-up appointment and to get the staples removed. Dr. Mathern wants to see Aiden in one month, then again in six months. Otherwise, Aiden is ready to start his outpatient therapy.
Aiden is still pretty weak on his left side, but he was actually able to walk a little bit while I held him around his waist. He enjoyed his first real bath in a week. We've just been snuggling and relaxing since we got home. What an amazing boy!
Keep an eye out for a news broadcast on ABC Channel 7 tomorrow afternoon/evening. They are running a story on Aiden, Sturge-Weber Syndrome and his Hemispherectomy surgery. If you miss it on tv, don't worry. I will be able to post it on Aiden's website in a few days.
Wednesday, August 27, 2008
Post Op - Seventh Day
August 27, 2008
Today was a busy day for Aiden. Heather, Aiden's representative from Regional Center came to visit and see first hand how well he's doing. Regional Center helps Aiden obtain services and special equipment for his needs. Heather also donated blood at Aiden's blood drive a few weeks ago.
Dr. Mathern came in this morning around 10:00 AM and said that Aiden passed his clamp test and the drain would be taken out. Around 1:00 PM, a neurosurgery resident came in and removed the bandage and the drain. The incision looks better than I thought it would. It looks like it will heal very nicely. I counted 36 staples. At 3:30 PM, we took Aiden down for a CT scan to make sure everything looked okay after the drain had been out for a few hours. I posted pictures on the "photos" page on his website.
A doctor on the floor said the CT looked okay to her but Dr. Mathern would have to make the final call, so we won't know for sure until tomorrow.
Grandma Fran and John came by to visit in the evening. Since Aiden is not hooked up to anything but a pulse oximeter, we were able to hold him. It was heavenly!
Today was a busy day for Aiden. Heather, Aiden's representative from Regional Center came to visit and see first hand how well he's doing. Regional Center helps Aiden obtain services and special equipment for his needs. Heather also donated blood at Aiden's blood drive a few weeks ago.
Dr. Mathern came in this morning around 10:00 AM and said that Aiden passed his clamp test and the drain would be taken out. Around 1:00 PM, a neurosurgery resident came in and removed the bandage and the drain. The incision looks better than I thought it would. It looks like it will heal very nicely. I counted 36 staples. At 3:30 PM, we took Aiden down for a CT scan to make sure everything looked okay after the drain had been out for a few hours. I posted pictures on the "photos" page on his website.
A doctor on the floor said the CT looked okay to her but Dr. Mathern would have to make the final call, so we won't know for sure until tomorrow.
Grandma Fran and John came by to visit in the evening. Since Aiden is not hooked up to anything but a pulse oximeter, we were able to hold him. It was heavenly!
Tuesday, August 26, 2008
Post Op - Sixth Day
August 26, 2008
Aiden is regaining his strength. He sat up and held his head up on his own today. He is off IV fluids now as he has been drinking plenty on his own. He was given his last dose of Dilantin and steroids yesterday so all he is on now is the antibiotic. Poor guy had IVs coming out of everywhere. Now he's just got the dual port in his inner thigh for blood draws and morphine. Aiden experienced a lot of pain today so he has had 3 doses of morphine.
Dr. Mathern felt that Aiden's drain was ready to be test clamped as his brain fluid has been clear today and he was only draining out a very small amount. This likely means his left hemisphere is doing it's job and the drain might be taken out tomorrow morning if his intracranial pressure remains low through the night. If the left hemisphere can't absorb the brain fluid properly, they will have to put in an internal shunt that will run from his head to his stomach. The pressure has been low since they clamped the drain at 7:00 PM. Keeping my fingers crossed.
All the doctors and nurses are really impressed with Aiden's progress. It feels good to hear them say how amazingly he is recovering.
Aiden is regaining his strength. He sat up and held his head up on his own today. He is off IV fluids now as he has been drinking plenty on his own. He was given his last dose of Dilantin and steroids yesterday so all he is on now is the antibiotic. Poor guy had IVs coming out of everywhere. Now he's just got the dual port in his inner thigh for blood draws and morphine. Aiden experienced a lot of pain today so he has had 3 doses of morphine.
Dr. Mathern felt that Aiden's drain was ready to be test clamped as his brain fluid has been clear today and he was only draining out a very small amount. This likely means his left hemisphere is doing it's job and the drain might be taken out tomorrow morning if his intracranial pressure remains low through the night. If the left hemisphere can't absorb the brain fluid properly, they will have to put in an internal shunt that will run from his head to his stomach. The pressure has been low since they clamped the drain at 7:00 PM. Keeping my fingers crossed.
All the doctors and nurses are really impressed with Aiden's progress. It feels good to hear them say how amazingly he is recovering.
Monday, August 25, 2008
Post Op - Fifth Day
August 25, 2008
Today we had a visit from Sarah Swank. Her daughter, Hannah, was also born with Sturge-Weber Syndrome and underwent a hemispherectomy two years ago, also performed by Dr. Mathern. We connected through our support group back in January, 2008 when we were told Aiden might need a hemispherectomy. Sarah invited Aiden, Jason and I over to have dinner with her and her husband Mark, and their kids Hannah and Weston. We all shared our experiences with Sturge-Weber, they told us about their experience with Hannah's hemispherectomy and we were able to see first hand how a child with half a brain could function. Their family really helped us in the decision making process for Aiden.
Aiden continues to heal but the drain is still not ready to come out. So, we just continue to patiently wait here in the PICU.
A little bonus today was James Van Der Beek (from Dawson's Creek) and his wife Heather McComb brought toys to all the kids in the PICU. They took the time to pose with Aiden in a picture! They were both very kind.
Today we had a visit from Sarah Swank. Her daughter, Hannah, was also born with Sturge-Weber Syndrome and underwent a hemispherectomy two years ago, also performed by Dr. Mathern. We connected through our support group back in January, 2008 when we were told Aiden might need a hemispherectomy. Sarah invited Aiden, Jason and I over to have dinner with her and her husband Mark, and their kids Hannah and Weston. We all shared our experiences with Sturge-Weber, they told us about their experience with Hannah's hemispherectomy and we were able to see first hand how a child with half a brain could function. Their family really helped us in the decision making process for Aiden.
Aiden continues to heal but the drain is still not ready to come out. So, we just continue to patiently wait here in the PICU.
A little bonus today was James Van Der Beek (from Dawson's Creek) and his wife Heather McComb brought toys to all the kids in the PICU. They took the time to pose with Aiden in a picture! They were both very kind.
Sunday, August 24, 2008
Post Op - Fourth Day
August 24, 2008
Aiden's dad, Brian, left early this morning to head back to Indiana. He was very sad to leave Aiden. Grandpa Ray came in today from Virginia to be with us and help out at the hospital.
The swelling in Aiden's head has gone down and he looks like he normally does, minus the bandage around his head. We are still in ICU because the fluid that is draining from Aiden's head is still red and needs to run clear before they can do a test clamp on the drain. They do a test clamp to make sure Aiden's remaining left hemisphere can absorb the brain fluid properly. Once that is established, they will decide to either leave the drain in longer or take it out. Once the drain is removed, then the bandage can be removed and then we would soon be moved to a less critical room. I'm not sure how long it will take for the fluid to run clear but they estimate a few more days.
Aiden was in quite a bit more discomfort today but he is eating and drinking well and his "pipes" are working. No infections or fevers, although we were told he'd get a fever around day 6. That is typical. All of his labs come back normal everyday, so that is great news. We are just taking our time and making sure Aiden heals properly. Everyone here at UCLA is taking such good care of him.
Aiden's dad, Brian, left early this morning to head back to Indiana. He was very sad to leave Aiden. Grandpa Ray came in today from Virginia to be with us and help out at the hospital.
The swelling in Aiden's head has gone down and he looks like he normally does, minus the bandage around his head. We are still in ICU because the fluid that is draining from Aiden's head is still red and needs to run clear before they can do a test clamp on the drain. They do a test clamp to make sure Aiden's remaining left hemisphere can absorb the brain fluid properly. Once that is established, they will decide to either leave the drain in longer or take it out. Once the drain is removed, then the bandage can be removed and then we would soon be moved to a less critical room. I'm not sure how long it will take for the fluid to run clear but they estimate a few more days.
Aiden was in quite a bit more discomfort today but he is eating and drinking well and his "pipes" are working. No infections or fevers, although we were told he'd get a fever around day 6. That is typical. All of his labs come back normal everyday, so that is great news. We are just taking our time and making sure Aiden heals properly. Everyone here at UCLA is taking such good care of him.
Saturday, August 23, 2008
Post Op - Second Day & Third Day
August 23, 2008
Yesterday, we were told that Aiden needed to start taking his regular oral seizure medication, Topamax, so they could take him off the IV drug, Dilantin. I was a little worried about how Aiden would handle eating and swallowing because we have to mix Topamax with a little pureed fruit. Well, he did great. He opened his mouth for the spoon and closed his lips around the spoon with no problem! Then Dr. Mathern came to check on Aiden and was very pleased to hear his progress report and ordered me to go home. So, I went home to get some sleep and Brian, Aiden's dad, stayed with him through the night. I got eleven hours of sleep last night and that's the best rest I've gotten in months.
Brian called me this morning and said Aiden has been doing "better than great". He's been moving his left arm,, saying "da da da da da-da" and humming "twinkle twinkle"!!!! It's like nothing has changed, which is good because things will only get better from here.
Brian said they did have to give Aiden some morphine in the middle of the night, but we were told by Dr. Mathern the pain would start to set in around day 2, so we expected that.
All in all, we couldn't have hoped for a better outcome. We are all so thankful. Jason and I are on our way to the hospital now. I can't wait to see Aiden.
Stay tuned. More to come...
Yesterday, we were told that Aiden needed to start taking his regular oral seizure medication, Topamax, so they could take him off the IV drug, Dilantin. I was a little worried about how Aiden would handle eating and swallowing because we have to mix Topamax with a little pureed fruit. Well, he did great. He opened his mouth for the spoon and closed his lips around the spoon with no problem! Then Dr. Mathern came to check on Aiden and was very pleased to hear his progress report and ordered me to go home. So, I went home to get some sleep and Brian, Aiden's dad, stayed with him through the night. I got eleven hours of sleep last night and that's the best rest I've gotten in months.
Brian called me this morning and said Aiden has been doing "better than great". He's been moving his left arm,, saying "da da da da da-da" and humming "twinkle twinkle"!!!! It's like nothing has changed, which is good because things will only get better from here.
Brian said they did have to give Aiden some morphine in the middle of the night, but we were told by Dr. Mathern the pain would start to set in around day 2, so we expected that.
All in all, we couldn't have hoped for a better outcome. We are all so thankful. Jason and I are on our way to the hospital now. I can't wait to see Aiden.
Stay tuned. More to come...
Friday, August 22, 2008
A special "Thank You"
Being anxious all day and then excited about Aiden's post-op status, I neglected to thank everyone who made the day go much easier than it would have with out them. First of all, thanks to my mom, John, Dawn and Matt for being there at the hospital with us all day yesterday. Brian, Jason and I don't know what we'd have done without your support. Second, we want to thank everyone who called, texted, emailed and signed the guestbook. During that looooong waiting period, your words were extremely comforting. Next, we want to thank the kids and their teachers at the church in Tennessee for making the cards for Aiden and emailing us pictures. Check them out on the "photos" link on this website. Most importantly, thank you Dr. Mathern for doing such an amazing job with Aiden's surgery. Your skilled hands and mind have put us all in awe.
Post Op - First Morning
August 22, 2008Getting to see Aiden took a while longer than expected. We were finally allowed to go to the PICU around 10:00 PM last night. Aiden was awake and in discomfort. He would open his eyes and look around at all of us and we were told he had been moving both legs and right hand and arm which is fantastic. There is little to no movement in the left hand and arm, which we expected. With time that will get better.
Throughout the night and morning, Aiden only woke up and a few times and complained a little but not too much. I would hold his hand and hum softly to him and he would quickly drift off to sleep. The nurse said Aiden hasn't needed any pain medication and they don't plan on giving him any unless his vitals show he needs it and/or he seems to be in a lot of pain. In fact, the only drip Aiden is on is fluids, no meds. His breathing, blood pressure and sodium levels are all stable. That is such a relief since we were told when Aiden came out of surgery, he'd probably still be intubated, on a ventilator and heavily sedated. But he proved that theory wrong. He is so amazingly strong!
Also, early this morning, I was sitting next to him and I saw his eyes open so I started talking to him and stroking his hand and he smiled at me. What I noticed is that he had a full smile, meaning both sides of his face are functioning. I've heard of kids coming out of surgery with a half smile, temporarily.
We have so much to be thankful for. I am just amazed at him, as always.
Thursday, August 21, 2008
Surgery - Finished
6:35 PM
Let out a big sigh of relief because the surgery is done! We all just did! Aiden just underwent an eleven hour operation.
Dr. Mathern just finished talking with us and he said, in a nutshell, everything went very well and we should be able to see him in about an hour.
He also said that the right side of Aiden's brain was COMPLETELY affected by Sturge-Weber and that everything needed to come out. When they attached the electrodes to the surface of his brain, there was NO activity at all.
Amazingly, Aiden will be awake and alert enough to interact with us a little. Dr. Mathern told us what to expect over the next few days and not to "sweat the small stuff". Overall he was very pleased with the surgery.
Thank each and every one of you for your positive thoughts and prayers.
Let out a big sigh of relief because the surgery is done! We all just did! Aiden just underwent an eleven hour operation.
Dr. Mathern just finished talking with us and he said, in a nutshell, everything went very well and we should be able to see him in about an hour.
He also said that the right side of Aiden's brain was COMPLETELY affected by Sturge-Weber and that everything needed to come out. When they attached the electrodes to the surface of his brain, there was NO activity at all.
Amazingly, Aiden will be awake and alert enough to interact with us a little. Dr. Mathern told us what to expect over the next few days and not to "sweat the small stuff". Overall he was very pleased with the surgery.
Thank each and every one of you for your positive thoughts and prayers.
Surgery - Fourth Update
6:00 PM
Just got a call from the O.R. nurse. They are closing him up and the neurosurgeon, Dr. Mathern will be down to talk to us in about 30 minutes. They say Aiden did well.
Just got a call from the O.R. nurse. They are closing him up and the neurosurgeon, Dr. Mathern will be down to talk to us in about 30 minutes. They say Aiden did well.
Surgery - Third Update
5:00 PM
Just got a call from the O.R. nurse. Everything is going well. They have removed a large portion of the right hemisphere. What remains of the right side is under the microscope and they will decide what else needs to be removed, if anything and then close him up. They expect a few more hours.
Just got a call from the O.R. nurse. Everything is going well. They have removed a large portion of the right hemisphere. What remains of the right side is under the microscope and they will decide what else needs to be removed, if anything and then close him up. They expect a few more hours.
Surgery - Second Update
12:44 PM
We just got word from an epileptologist working with the neurosurgeon that everything is going well and the extraction is about to begin.
We just got word from an epileptologist working with the neurosurgeon that everything is going well and the extraction is about to begin.
Surgery - First Update
12:30 PM
Our sweet Aiden is in the operating room right now. We got our first update out of the O.R. two hours ago letting us know the surgery had begun. The nurse said she will call with another update in about an hour.
Our sweet Aiden is in the operating room right now. We got our first update out of the O.R. two hours ago letting us know the surgery had begun. The nurse said she will call with another update in about an hour.
Wednesday, August 20, 2008
Hospital Admission
August 20, 2008
We are getting ready to go to UCLA Medical Center to check Aiden in and get him ready for his surgery tomorrow. He will be taken to the pre-op area around 6:00 AM. Surgery is scheduled to begin at 7:30 AM and last approximately 10 hours.
I will post updates as I hear from the operating room.
Please keep Aiden in your thoughts and prayers.
We are getting ready to go to UCLA Medical Center to check Aiden in and get him ready for his surgery tomorrow. He will be taken to the pre-op area around 6:00 AM. Surgery is scheduled to begin at 7:30 AM and last approximately 10 hours.
I will post updates as I hear from the operating room.
Please keep Aiden in your thoughts and prayers.
Tuesday, August 12, 2008
Seizures
August 12, 2008
Aiden had a few seizures this morning. The first and second ones were brief so I didn't administer Diastat but once the third one started, I gave it to him and they stopped. He slept for about 2 hours after that and has been fine the rest of the day. I hope with all my heart that this surgery makes them stop for good.
Aiden had a few seizures this morning. The first and second ones were brief so I didn't administer Diastat but once the third one started, I gave it to him and they stopped. He slept for about 2 hours after that and has been fine the rest of the day. I hope with all my heart that this surgery makes them stop for good.
Saturday, August 9, 2008
Blood Drive
August 9, 2008
Aiden's blood drive this Saturday was a huge success. 58 people showed up to donate blood and I was told that was enough for Aiden's surgery and to save an additional 8 lives!
Our family and friends, cadets at the Rio Hondo Police Academy and people who saw Aiden's article in the newspaper, thank you so much for taking the time to come out and donate blood. It was a pleasure seeing you all.
Click here to see the news coverage on the blood drive http://www.youtube.com/watch?v=nGtdENMUFCU
Aiden's blood drive this Saturday was a huge success. 58 people showed up to donate blood and I was told that was enough for Aiden's surgery and to save an additional 8 lives!
Our family and friends, cadets at the Rio Hondo Police Academy and people who saw Aiden's article in the newspaper, thank you so much for taking the time to come out and donate blood. It was a pleasure seeing you all.
Click here to see the news coverage on the blood drive http://www.youtube.com/watch?v=nGtdENMUFCU
Tuesday, August 5, 2008
Date Set for Surgery
August 5, 2008
We got word from Dr. Comi's office in Baltimore and she and Dr. Kossoff both feel the hemispherectomy is necessary. So, we scheduled the surgery for August 21st. We will be admitted the day before to UCLA Medical Center .
This Saturday, August 9th, UCLA will be holding a blood drive in our city to collect blood from donors for Aiden's surgery and for other patients at UCLA.
Our local newspaper in Southern California did an article on Aiden, Sturge-Weber and his up-coming surgery. The story came out in today's paper (SGV Tribune, Highlander, Weekly Star, Pasadena Star and Whittier Daily News).
We got word from Dr. Comi's office in Baltimore and she and Dr. Kossoff both feel the hemispherectomy is necessary. So, we scheduled the surgery for August 21st. We will be admitted the day before to UCLA Medical Center .
This Saturday, August 9th, UCLA will be holding a blood drive in our city to collect blood from donors for Aiden's surgery and for other patients at UCLA.
Our local newspaper in Southern California did an article on Aiden, Sturge-Weber and his up-coming surgery. The story came out in today's paper (SGV Tribune, Highlander, Weekly Star, Pasadena Star and Whittier Daily News).
Tuesday, July 22, 2008
Second Meeting with Dr. Mathern
July 22, 2008
Today was our meeting with neurosurgeon, Gary Mathern, neurologist, Raman Sankar and epilepsy nurse specialist, Sue Yudovin at UCLA. Jason and my mom both took the day off from work to accompany me and Aiden.
The purpose of this meeting was to clarify why some team members felt Aiden should try more drugs before surgery should be considered and why some felt surgery was urgent.
After quite a long discussion, it was obvious that although surgery is an aggressive approach, it is the best decision for Aiden. After Dr. Mathern left the room, Dr. Sankar told us that if his child ever needed brain surgery, he'd want Dr. Mathern to do it. I've heard numerous people say that he is the BEST.
Dr. Anne Comi in Baltimore is still in the process of reviewing Aiden's records and tests. At this point, I'm just waiting for her opinion before I call to set a date for surgery.
Tomorrow, I'm taking Aiden to the lab to find out his blood type because he will need family and friends to donate four to five units of blood once a date is set for surgery.
Today was our meeting with neurosurgeon, Gary Mathern, neurologist, Raman Sankar and epilepsy nurse specialist, Sue Yudovin at UCLA. Jason and my mom both took the day off from work to accompany me and Aiden.
The purpose of this meeting was to clarify why some team members felt Aiden should try more drugs before surgery should be considered and why some felt surgery was urgent.
After quite a long discussion, it was obvious that although surgery is an aggressive approach, it is the best decision for Aiden. After Dr. Mathern left the room, Dr. Sankar told us that if his child ever needed brain surgery, he'd want Dr. Mathern to do it. I've heard numerous people say that he is the BEST.
Dr. Anne Comi in Baltimore is still in the process of reviewing Aiden's records and tests. At this point, I'm just waiting for her opinion before I call to set a date for surgery.
Tomorrow, I'm taking Aiden to the lab to find out his blood type because he will need family and friends to donate four to five units of blood once a date is set for surgery.
Tuesday, July 8, 2008
New Opinions on Surgery
July 8, 2008
Since I received conflicting opinions from the neurologist and neurosurgeon at UCLA about performing the hemi surgery, I decided to ask the sws support group for some advise. Quite a few people directed me to Dr. Anne Comi at Kennedy Krieger Institute. I sent Dr. Comi an email on Wednesday of last week and to my surprise, I got a reply from her the next morning. I asked her if she would be willing to review Aiden's tests and medical records from UCLA and give me her opinion as to whether or not a hemispherectomy would be necessary at this point in Aiden's life. She said she would be happy to review the records and give her opinion on course of treatment. I was so relieved that I wouldn't have to take Aiden to Baltimore and subject him to more testing.
I decided to do some research on Dr. Comi. I found that "her clinical expertise is in the diagnosis and treatment of the neurologic aspects of Sturge-Weber Syndrome (SWS). She is a physician advisor for the Vascular Birthmark Foundation and Sturge-Weber Syndrome Community and has served on the scientific advisory board of the Sturge-Weber Foundation. Her research interests center on studying the pathologic processes involved in the neurologic complications of Sturge-Weber Syndrome, including the effects of chronic hypoxia and glucose deprivation on brain tissue and neurons, as well as the interactions between seizures and impaired blood flow in the brain. Through both clinical and basic research, she hopes to determine approaches to preventing neurodegeneration resulting from chronically impaired blood flow in Sturge-Weber syndrome."
I'm so happy to have found an "SWS expert" to review Aiden's case. I feel that once I have her opinion, I can make a decision and feel at peace about it.
I also took Aiden to see his regular neurologist, Dr. Imbus, last week. His opinion is to proceed with surgery. He told me "I'm a medical doctor and we love pushing new drugs on patients. That said, I know Aiden's condition can't be controlled by medication and I suggest you get him fixed." (meaning surgery). He also told me that he will be holding a conference at the end of the month and he'd be willing to present Aiden's case to all the attending neurologists there and gather their collective opinions.
Since I received conflicting opinions from the neurologist and neurosurgeon at UCLA about performing the hemi surgery, I decided to ask the sws support group for some advise. Quite a few people directed me to Dr. Anne Comi at Kennedy Krieger Institute. I sent Dr. Comi an email on Wednesday of last week and to my surprise, I got a reply from her the next morning. I asked her if she would be willing to review Aiden's tests and medical records from UCLA and give me her opinion as to whether or not a hemispherectomy would be necessary at this point in Aiden's life. She said she would be happy to review the records and give her opinion on course of treatment. I was so relieved that I wouldn't have to take Aiden to Baltimore and subject him to more testing.
I decided to do some research on Dr. Comi. I found that "her clinical expertise is in the diagnosis and treatment of the neurologic aspects of Sturge-Weber Syndrome (SWS). She is a physician advisor for the Vascular Birthmark Foundation and Sturge-Weber Syndrome Community and has served on the scientific advisory board of the Sturge-Weber Foundation. Her research interests center on studying the pathologic processes involved in the neurologic complications of Sturge-Weber Syndrome, including the effects of chronic hypoxia and glucose deprivation on brain tissue and neurons, as well as the interactions between seizures and impaired blood flow in the brain. Through both clinical and basic research, she hopes to determine approaches to preventing neurodegeneration resulting from chronically impaired blood flow in Sturge-Weber syndrome."
I'm so happy to have found an "SWS expert" to review Aiden's case. I feel that once I have her opinion, I can make a decision and feel at peace about it.
I also took Aiden to see his regular neurologist, Dr. Imbus, last week. His opinion is to proceed with surgery. He told me "I'm a medical doctor and we love pushing new drugs on patients. That said, I know Aiden's condition can't be controlled by medication and I suggest you get him fixed." (meaning surgery). He also told me that he will be holding a conference at the end of the month and he'd be willing to present Aiden's case to all the attending neurologists there and gather their collective opinions.
Wednesday, July 2, 2008
Reconsidering Hemispherectomy
July 2, 2008
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...
Monday, June 16, 2008
Considering Hemispherectomy
June 16, 2008
Today we met with Dr. Mathern, the neurosurgeon at UCLA, to discuss Aiden possibly having a brain surgery called hemispherectomy. Dr. Mathern explained that if Aiden doesn't have this surgery, the right side of his brain will progressively get worse. He will always battle seizures and need medication to control them; medication that inhibits his ability to learn and progress developmentally.
Since December, I've been researching this surgery and talking to parents of kids who've had hemispherectomies. I've been trying to prepare myself for this day because I knew I'd have to make this decision. I tried to come up with as many reasons as I could to convince myself that Aiden didn't need this surgery. But during the discussion with Dr. Mathern today, it hit me like a truck and I realized I have to give Aiden this opportunity for a better life. So, after considering the benefits and risks of this surgery, we decided to proceed. The surgery will be scheduled in late July or early August.
Dr. Mathern explained how this procedure will be performed. The right hemisphere is disconnected from the rest of the brain, but only a limited area of brain tissue will be removed. The surgery takes between eight to 10 hours. Aiden will need to stay in the hospital for 10 to 14 days. He will need intense rehabilitative therapy to regain his gross motor functions. He will lose sensation and fine motor functions on the left side of his body. On the plus side, the removal of the severely damaged brain tissue will better allow the healthy hemisphere to perform its duties. 80% of patients who undergo this surgery have complete seizure control without medication. I have heard from parents who say their child couldn't talk or walk before the surgery but were able to afterwards.
I am trying to focus on the possibility that this surgery will improve the quality of Aiden's life. My family and friends have been so supportive of my decision. The Sturge-Weber and Hemispherectomy support groups on Yahoo have helped me find the strength to make this decision. For that, I'm so thankful.
Thanks for listening and I will keep you posted when the date is set for the surgery.
Today we met with Dr. Mathern, the neurosurgeon at UCLA, to discuss Aiden possibly having a brain surgery called hemispherectomy. Dr. Mathern explained that if Aiden doesn't have this surgery, the right side of his brain will progressively get worse. He will always battle seizures and need medication to control them; medication that inhibits his ability to learn and progress developmentally.
Since December, I've been researching this surgery and talking to parents of kids who've had hemispherectomies. I've been trying to prepare myself for this day because I knew I'd have to make this decision. I tried to come up with as many reasons as I could to convince myself that Aiden didn't need this surgery. But during the discussion with Dr. Mathern today, it hit me like a truck and I realized I have to give Aiden this opportunity for a better life. So, after considering the benefits and risks of this surgery, we decided to proceed. The surgery will be scheduled in late July or early August.
Dr. Mathern explained how this procedure will be performed. The right hemisphere is disconnected from the rest of the brain, but only a limited area of brain tissue will be removed. The surgery takes between eight to 10 hours. Aiden will need to stay in the hospital for 10 to 14 days. He will need intense rehabilitative therapy to regain his gross motor functions. He will lose sensation and fine motor functions on the left side of his body. On the plus side, the removal of the severely damaged brain tissue will better allow the healthy hemisphere to perform its duties. 80% of patients who undergo this surgery have complete seizure control without medication. I have heard from parents who say their child couldn't talk or walk before the surgery but were able to afterwards.
I am trying to focus on the possibility that this surgery will improve the quality of Aiden's life. My family and friends have been so supportive of my decision. The Sturge-Weber and Hemispherectomy support groups on Yahoo have helped me find the strength to make this decision. For that, I'm so thankful.
Thanks for listening and I will keep you posted when the date is set for the surgery.
Monday, April 21, 2008
EEG Testing at UCLA - Last Day
April 21, 2008
I woke up this morning and went down to the cafeteria to get my coffee. When I got back to the room, the nurse who was watching Aiden said the neuro team had come by to tell me we get to go home today. Aiden was happy to get the electrodes off.
I was told Aiden had a seizure one night while I was sleeping and it showed up on the EEG. He also had a sub-clinical seizure that can only be seen on an EEG because there are no physical signs. The EEG showed the seizures were coming from the right side only, like we hoped. This means Aiden will most likely be a candidate for the hemispherectomy. The neuro team will get together with the surgeon and they will all discuss what the next step will be. They will consider factors like his age, developmental delay and whether or not they think the surgery will benefit Aiden.
I'm glad to be home but a little uncomfortable because Aiden has been completely off his anti-seizure meds for 4 days. When we got home, Aiden was very happy and playful but he had a 6 minute seizure when he woke up from his nap. He was sitting on the floor playing and he just slowly tipped forward. When I grabbed him, there was a lot of drool coming out of his mouth and his eyes were darting. He's back on his regular medication schedule now that we're home so I hope it kicks in fast and stops these seizures.
Aiden has a follow-up appt in two weeks and then we'll schedule an MRI as an outpatient procedure. By then I should have more information on what the neuro team has discussed.
I woke up this morning and went down to the cafeteria to get my coffee. When I got back to the room, the nurse who was watching Aiden said the neuro team had come by to tell me we get to go home today. Aiden was happy to get the electrodes off.
I was told Aiden had a seizure one night while I was sleeping and it showed up on the EEG. He also had a sub-clinical seizure that can only be seen on an EEG because there are no physical signs. The EEG showed the seizures were coming from the right side only, like we hoped. This means Aiden will most likely be a candidate for the hemispherectomy. The neuro team will get together with the surgeon and they will all discuss what the next step will be. They will consider factors like his age, developmental delay and whether or not they think the surgery will benefit Aiden.
I'm glad to be home but a little uncomfortable because Aiden has been completely off his anti-seizure meds for 4 days. When we got home, Aiden was very happy and playful but he had a 6 minute seizure when he woke up from his nap. He was sitting on the floor playing and he just slowly tipped forward. When I grabbed him, there was a lot of drool coming out of his mouth and his eyes were darting. He's back on his regular medication schedule now that we're home so I hope it kicks in fast and stops these seizures.
Aiden has a follow-up appt in two weeks and then we'll schedule an MRI as an outpatient procedure. By then I should have more information on what the neuro team has discussed.
Sunday, April 20, 2008
EEG Testing at UCLA - 6th Day
April 20, 2008
Jason came to the hospital yesterday to be with Aiden and I. He spent the night with us and I woke up early to go home to shower and do some laundry. While I was gone, Aiden had a seizure and it was captured on the EEG. My mom went back to the hospital with me so she could watch Aiden while Jay and I had lunch together. We all spent some time together and then mom and Jay went back home.We are one step closer to getting out of the hospital.
Friday, April 18, 2008
EEG Testing at UCLA - 4th Day
April 18, 2008
Day four and still no seizures. They've lowered his dosage of the anti-seizure medication from 7 pills a day to 1 a day in hopes that a seizure will happen soon. Ideally, they want to see 3 seizures, run an MRI and then we get to go home.
It's strange that Aiden was having seizures almost every day at home and then we get here and they stopped.
Day four and still no seizures. They've lowered his dosage of the anti-seizure medication from 7 pills a day to 1 a day in hopes that a seizure will happen soon. Ideally, they want to see 3 seizures, run an MRI and then we get to go home.
It's strange that Aiden was having seizures almost every day at home and then we get here and they stopped.
Tuesday, April 15, 2008
EEG Testing at UCLA - 1st Day
April 15, 2008Today is our first day at UCLA. Aiden's all hooked up to the EEG/telemetry monitor. He's got a video camera on him at all times to capture his seizures. We'll be here for a few days or until we get enough seizures captured. Our room is so small. There's barely enough room to move in here. There is no bed for me so I'll have to curl up on Aiden's bed.
Monday, January 7, 2008
Sturge-Weber rears it's ugly head, again.
January 7, 2008
Aiden almost made it 2 years seizure free until just before Christmas he started having brief (1 to 2 minutes) focal seizures again. His left bottom lip looked like it was being pulled down, he drooled and his breathing changed. This would happen up to 4 times a day. Of course I called his neurologist right away and he increased his dose of Topamax to 6 a day instead of 4 a day. After 2 days of the meds adjustment, the seizures stopped. I took Aiden in to see the neuro and he said that it's great that the seizures stopped but I should seriously consider him having a hemispherectomy. He gave me the number of a doctor here at UCLA. I had done some research on this surgery before and never thought it would be suggested for Aiden. His neuro always told me as long as the seizures are controlled with meds and he continues to make some progress developmentally, I didn't even need to think about the surgery. Now, I'm hearing a different story.
Apparently, Aiden has been having seizures the whole time but I just haven't been able to tell because there are no physical signs. EEGs never indicated this. Supposedly, the meds have just been controlling the "behavioral seizures". The doc says that explains Aiden's slow development. Aiden is almost 4. He crawls and cruises and is close to walking but he doesn't talk or chew. Now the surgery is urgent because we need to remove the damaged brain before the seizure behavior is transfered to the good side of the brain and slows his development further.
The evaluation process for the surgery has begun. Medical records are being transfered to UCLA and then the testing will begin. Doctors will then determine if the surgery is right for Aiden.
This is a very hard time for me emotionally. Thank goodness Aiden isn't aware of what's going on or what he faces. Please keep us in your thoughts and prayers during our new journey with Sturge-Weber Syndrome.
Aiden almost made it 2 years seizure free until just before Christmas he started having brief (1 to 2 minutes) focal seizures again. His left bottom lip looked like it was being pulled down, he drooled and his breathing changed. This would happen up to 4 times a day. Of course I called his neurologist right away and he increased his dose of Topamax to 6 a day instead of 4 a day. After 2 days of the meds adjustment, the seizures stopped. I took Aiden in to see the neuro and he said that it's great that the seizures stopped but I should seriously consider him having a hemispherectomy. He gave me the number of a doctor here at UCLA. I had done some research on this surgery before and never thought it would be suggested for Aiden. His neuro always told me as long as the seizures are controlled with meds and he continues to make some progress developmentally, I didn't even need to think about the surgery. Now, I'm hearing a different story.
Apparently, Aiden has been having seizures the whole time but I just haven't been able to tell because there are no physical signs. EEGs never indicated this. Supposedly, the meds have just been controlling the "behavioral seizures". The doc says that explains Aiden's slow development. Aiden is almost 4. He crawls and cruises and is close to walking but he doesn't talk or chew. Now the surgery is urgent because we need to remove the damaged brain before the seizure behavior is transfered to the good side of the brain and slows his development further.
The evaluation process for the surgery has begun. Medical records are being transfered to UCLA and then the testing will begin. Doctors will then determine if the surgery is right for Aiden.
This is a very hard time for me emotionally. Thank goodness Aiden isn't aware of what's going on or what he faces. Please keep us in your thoughts and prayers during our new journey with Sturge-Weber Syndrome.
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