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/
Tuesday, September 30, 2008
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
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