Aiden Gregory Waters

Happy Anniversary, Aiden!!!

2009-08-21T08:30:00.000-07:00

Exactly one year ago today, I woke up and faced the biggest fear I have ever faced. One year ago today, I took my son to the hospital so that a surgeon could remove the right half of his brain. As I look back on August 21, 2008, I can’t help but remember the agonizing 11 hours that my precious Aiden was in the operating room. My mind is flooded with memories of that day. At 6:00 am, I kissed Aiden goodbye not knowing if it might be the last time I’d ever get to kiss his sweet face. Not knowing if the child returned to me would be the same. I wondered if the surgery would be successful in stopping his seizures. I prayed that his future would somehow improve.

Today, August 21, 2009, I am happy to say that the surgery was a success. Not only were there no complications from the surgery, Aiden has been seizure free for a whole year. He has since learned to walk independently, feed himself with a spoon, drink from a straw, draw circles and walk up a flight of stairs. He is also learning how to swim! Before his surgery, Aiden could not speak. Today he says “hi”, “bye-bye”, “yeah”, “juice”, “chair”, “outside”, and frequently asks “whassat?” Let’s not forget his first four-letter word “sh*t”. He’ll show his belly if asked “where’s your belly?” and when he wants to be picked up he says “up”. One year ago, Aiden took 7 anti-seizure pills a day. Now he’s down to 2 a day. The year has been both challenging and rewarding. Despite being put through numerous tests, pokes, prods, procedures, observation, and therapies, he has kept his sweet, loving personality. He gives the best hugs, loves to snuggle and cuddle any chance he gets and now gives real kisses, complete with the kiss sound.

As I look forward to August 21, 2010, I know we will still face challenges but the rewards will just keep getting better. In the fall, Aiden will be going to a new school that will push him toward his full potential. Aiden will have new therapists and will be involved in some new programs. I can only be excited to see how far Aiden will go in the next year and the years to come.

I am so proud of my little man. Happy Anniversary, Aiden!

The Gentle Test

2009-07-03T22:28:00.000-07:00

Today, we took Aiden to meet baby Jude. Our friends Becca and Paul welcomed Jude into the world only 5 days ago. This was the first time Aiden had ever seen a newborn baby. It was quite amusing watching Aiden observe him. He thought Jude was fascinating and just kept checking him out. Jude sneezed a few times and Aiden thought that was so hilarious. He even gave Jude a kiss and was very gentle around him. It was so cute.

I was so glad to see Aiden respond to Jude the way he did. Jason really wants to have another baby and I do too but the timing just isn't right. I also had some concerns about bringing another baby into our "situation" but after talking to many friends about it and actually seeing Aiden around a baby, how he behaves with his playdates and how he interacts with other kids in general, I'm starting to consider the possibility of, one day, adding to our little family.

Improvements With Eating

2009-07-02T13:52:00.000-07:00

Aiden is finally starting to be a little bit more adventurous when it comes to food. Two days ago, we were having lunch together. He had his usual pureed food and I was having chicken and vegetables. He kept looking at my plate and putting his spoon just on top of my veggies. Pretty soon, he took a scoop of brocolli with his spoon and put it in his mouth. He let it fall out of his mouth and then went in for another bite. It was like he thought it looked good and he was determined to try it even if he didn't like the texture in his mouth. I gave him serious props for even trying it in the first place.

Last night, we had roasted pork, mashed potatoes and gravy. Usually if he saw that we had put homemade food in his bowl, he'd have a fit. This time he watched me put a scoop of potatoes and gravy in his bowl and he just went for it with no hesitation. He ate the whole bowl!!!

Today at school, the class made homemade chocolate ice cream. His teacher said Aiden didn't want any part of the making of the ice cream but he gobbled up a whole bowl! Oh, and he actually took bites of these Veggie Straws I packed for him. They are like cheese poofs but made of veggies.

Now that Aiden is showing he is more open to the idea of trying new things, we're gonna run with it and hopefully, soon, he'll start to chew and eat a bigger variety of foods. No more baby food!! That would be awesome.

New Stroller, a Party and the Beach

2009-06-27T20:47:00.000-07:00

"Wanna go bye-bye, Aiden?" That's all it took and Aiden was happy to try out his new stroller. Yesterday, he went for three walks in it. Once with me, then with Kiwi (his nanny), then again with gramma. Although Aiden is walking so much better now, this stroller will come in handy because he can only walk short distances and my poor back can't handle carrying a 45 pound kid around! I was so surprised and glad we got the stroller before our trip to Baltimore since it didn't seem like we'd even get it to begin with.

These pictures are from this morning when we were about to leave for Connor's birthday party.

Today Connor turned a year old. His daddy plays softball in Irvine on Wednesday nights with Jason. They've been playing on the same team for ten years. Aiden was so excited to go to Connor's party. He loves to go bye-bye and just be outside in general. There were only four kids there but they had fun rolling around on the grass and playing in the "mini beach". Aiden really liked the sand. He kept flicking sand up in the air and laughing as it came down on himself.

Since we were only minutes from the beach, and because Aiden liked playing in the sand so much, we decided to go after the party. This was Aiden first time at the beach! Seems a shame since we only live an hour away. It had been hard to plan things prior to Aiden's hemi surgery because he was sick so often and having so many seizures. Now, we have the ability to venture further away from home and not have to worry about him vomitting and having to cut our trip short or not make it to our destination before we'd have to turn around and go home.

Here's Aiden loving the sand at the beach and putting his feet in the ocean for the first time!

So, we had quite a busy day. It is so rewarding to see Aiden able to have so much fun and experience more things now. It's gonna just keep getting better and better for our little guy!

Summertime Swimming

2009-06-25T19:39:00.000-07:00

June 25, 2009

Aiden had so much fun by the pool today. This kid has always loved the water whether it's the bath, hose, pool or sprinklers! The pool is still pretty cold because June, so far, has been unseasonably cool. But his grandma took him in all the way with her. At first he was startled but then he busted up laughing and squeeling! He loved it!!!

We have to keep his birthmark out of the sun, hence the hat.

Water Baby

Aiden's new stroller was delivered today, finally! It took 4 months of fighting for it and 2 months for insurance to agree to cover it. I am very pleased with it, though. It folds up like an umbrella stroller, holds up to 170 pounds and has a tray for when we go out to eat. No more trying to shove his feet through the little feet holes in restaurant highchairs! Unfortunately, Aiden wasn't as thrilled with it as I was. He cried when he saw it and did't want to sit in it. So, I'll have to get pictures another day.

A Missing Tooth

2009-05-19T23:25:00.000-07:00

Aiden lost his first tooth at school on May 7, 2009. He was sliding out of the ball pit on his tummy and hit his already loose tooth on the ground and it popped out. I made him an appointment at the dentist the next week and he was such a good boy. They were able to do x-rays and a cleaning and he didn't even cry! And NO cavities! I was a very proud momma.

If you ask Aiden "where's your belly?", he lifts up his shirt and shows you his belly. And he now hums the tune "This Old Man" in addition to "Twinkle Twinkle" and "Jingle Bells". He's really showing us how smart he is.

Fantastic Opportunity

2009-04-22T20:34:00.000-07:00

I have just been given a fantastic opportunity. Every two years, UCLA Neurosurgery hosts a Visionary Ball to raise money to benefit research and education at UCLA. At the Ball, they feature three live patient testimonials. I have been asked to share Aiden's story in front of 600 plus guests. My first committee planning meeting is tomorrow. I am excited and honored to be a part of this great event.

Click HERE to check out the "Past Balls".

Meeting Hemi Families

2009-03-29T20:16:00.000-07:00

March 29, 2009

Through Facebook, the Yahoo Support group and the Hemi Foundation, I have connected with many other hemi families. Jason, Aiden and I met up with two families at Griffith Observatory. The family on the left are the Cogils. Their daughter, Rachel, is about to undergo a hemispherectomy at UCLA by the same surgeon as Aiden had. They are here from Iowa. The family in the middle had their son's surgery 1 year ago at Cedar Sinai. He has been seizure-free since his surgery.

Jason and I went to UCLA to visit the 3 hemi families there.

This is Rachel after her surgery.

This is Mina and her daughter Amina.

This is Emily.

It has been great getting to know and spend time with other hemi families. We all share something so unique and it creates an immediate bond.

St. Patty's and MRI Results

2009-03-17T23:01:00.000-07:00

March 17, 2009

Happy St. Patty's Day!

So, we took Aiden in for his 6 month post-op MRI on March 5th. This was for Dr. Mathern to make his first assessment of the healing process and to check for any surgery related complications. I was very anxious to hear the results when we met with Dr. Mathern on the 9th because I was worried that Aiden might be suffering from hydrocephalus (too much fluid pressure on the brain). Well, the scans are all clear and Dr. Mathern said everything looks great in there. He said the hitting and head-butting are behavior issues most likely due to frustration and/or weird sensations caused by the healing process.

When I saw the MRI scans, I was surprised to see so much brain tissue left in there because I was under the impression that the entire right hemisphere was removed. Dr. Mathern explained that the procedure he performed is a hybrid he designed. It's something between a hemispherotomy and functional hemispherectomy. I'll try to explain in summary. In a Functional Hemispherectomy, the two hemispheres are disconnected and only portions of the non-functional/epileptic areas are removed. Hemispher(otomy) is when all of the major white matter pathways connecting the lobes of the hemisphere to each other and the contralateral hemisphere are divided, but the bulk of the brain tissue is left in place. (Credit to Cedars Sinai and Cleveland Clinic websites for the explanation).

Here are some screenshots of the post-op CT:

and a video of the MRI scans (caution! this is kinda creepy if you're not used to this sort of thing):

I'm looking into behavior modification therapy to help him deal with his frustrations of not being able to communicate verbally. The school he goes to offers this type of program, so I'm anxious to see what happens with that. The absolute last resort would be medication to help the behavior.

Thanks go out to all who kept Aiden close in thought and prayed for good MRI results. I received so many emails in response to my post "self-injurious behavior" and they all meant so much to me. So, thank you again!

-Rachel

Drinking from a straw

2009-03-04T14:57:00.000-08:00

March 3, 2009

We've been trying to get Aiden to drink from a straw for 4 years. A few weeks ago, he did it for the first time. Now he's a pro!

Self-Injurious Behavior, Post-Hemi

2009-02-21T15:43:00.000-08:00

Aiden has been hitting himself on the head since about 3 months after his hemispherectomy in August. Over time, the behavior has worsened.At first we thought he was doing it for attention because when we'd tell him "no", he'd smile as if he got the reaction he wanted and then stopped the behavior. Then it progressed to him doing it when we'd try to get him to do something he didn't want to do. Now he does it even when no one is bothering him. We've tried ignoring the behavior but he continues to hit himself even when he's doing something he enjoys. We've tried firmly holding his arm and telling him "no" but that just makes it worse. If we hold his arm, he begins head-butting.

At a recent eye exam, Aiden exhibited this behavior and his doctor suggested an elbow restraint called a "pedi wrap" and I Googled that as soon as I got home. In my search, I read that there are many possible reasons why a person with disabilities may engage in self-injurious behavior including: pain, frustration, sensory, biochemical or communication. Another article I came across on the internet suggests using restraints as a means of behavior modification. So, I asked Aiden's PT if we could borrow one to try at home. She explained that it shouldn't be placed on his arm unless he begins hitting himself. So, we are putting it on and taking it off 15-20 times a day. It's ridiculous. And when it's on him, he finds other ways to hit his head, like on the floor or wall.

Now, I am concerned that this isn't a behavior or sensory issue at all but a sign of pain or hydrocephalus. So, I emailed Dr. Sankar at UCLA and he called me right away. He's pretty sure it's a purposeful behavior but he suggested I schedule an appt. with Aiden's pediatrician to rule out ear infection or teething. He also scheduled a CT scan to rule out hydrocephalus. Then if those are negative, he suggested we try Tylenol or Advil as it might be due to post-craniotomy migraine and then see if the behavior stops. If above do not pan out and if initial tantrums evolve into an obsessive behavior pattern, he will elect to treat Aiden with Celexa.

Please pray for my little boy; that this is just a phase and that there isn't a serious underlying issue. I am fairly confident after speaking with Dr. Sankar that it is an issue of behavior brought on by his inability to communicate his wants, needs and frustrations with words.

Thank you,
Rachel

Glasses and 16th laser treatment

2009-01-29T22:01:00.000-08:00

January 29, 2009

Aiden was born with glaucoma due to the excess blood vessels in his right eye. He had surgery to reduce the pressure when he was 2 months old. The surgery lowered the pressure significantly but he will always need eye drops to keep the pressure at a safe range. Every 4 to 6 months we schedule an appointment to get his pressure checked while he's awake and then another under anesthesia for comparison. Normal pressure in the eye is anywhere between 10-21. Last Wednesday, Aiden had the awake exam and the pressure was 21. While we were there his doctor determined that Aiden is a bit far-sighted and prescribed him glasses. Friday, while he was under anesthesia for his 16th laser treatment, the eye doctor checked his pressure and it was 21 there too. Even though it's on the high end of normal, his doctor didn't seem too worried. She just said to continue the eye drops. I just hope the pressure doesn't increase otherwise he might need another eye surgery.

Before Laser

3 days after Laser

1 week after laser treatment

GATHERING OF HOPE

2009-01-22T14:51:00.000-08:00

An article written about the SWS Family day came out in today's paper. Click HERE to read it.

SWS California Family Day

2009-01-22T00:29:00.000-08:00

January 17, 2009

I had been looking forward to this day for months. Ten children and 3 adults with Sturge-Weber Syndrome along with their families gathered at an event I planned for us in Pasadena on Saturday. There were 48 people who attended.

I met many new people and reconnected with a few I hadn't seen in a while. It was an unbelievable feeling to meet people for the first time and feel like we were family.

The venue was a place called Kids Klub on 380 S. Raymond Ave. in Pasadena, CA. This place was perfect because it kept the kids occupied and gave the adults a chance to chat. We shared our experiences and I learned some things I didn't know about the syndrome. We were there for 4 hours and it went by too fast. I can't wait until we do it again next year. Probably at the same place.

Click HERE to see photos from the event. Click HERE to watch the news segment.

Five Months Post-Surgery

2009-01-12T21:48:00.000-08:00

January 12, 2008

Aiden has met all of the goals we set forth in physical therapy. Six months ago, it took him 6 minutes to walk the length of the hall at school, with assistance. This week, he did it in just over a minute, completely by himself. He is learning how to ride a tricycle and he can go up the stairs by himself (I'm right behind him, of course). It's just amazing.

There is a possibility that we can start weaning him off his seizure medication, Topamax, next month. Since we haven't seen any signs of seizures since his surgery in August, his neurologist thinks we can slowly reduce his dosage until, eventually, no drugs at all.

It's already very clear to me and the people who see him the most, how much more aware Aiden is of his surroundings. It's almost as if the clouds have been cleared away and he can see things the way they are supposed to be seen. Aiden is much more verbal and he trys so hard to talk. He attempts to mimic the sound of the word you are saying but the letters are wrong. For example, if you say banana, he says danana. And bye-bye is duh-dye (with a backwards wave). Tongue is Da-tat. Walrus is wa-ra. He hums the chorus of Jingle Bells and the first verse of Twinkle Twinkle. I think that is major progress! He does get frustrated at times when he can't communicate his wants and needs and has developed a bad habit of hitting himself on the head. When we tell him "no" he hits more and harder and then smiles. So, we try ignoring the behavior and it seems to work a little. It's hard to say if he's doing it just for attention or out of frustration. Maybe both.

Aiden is eating a wider variety of foods. Before he would only eat stage 3 baby food. If we'd even try to give him something homemade, he'd strongly protest. He still can't chew food but he will accept pretty much anything pureed. It's nice because he eats the school lunches and I can just mash up something off a menu at a restaurant instead of bringing jars of baby food when we go out. He enjoys feeding himself, especially yogurt. That's his favorite thing to eat!

This Saturday is the SWS California Family Day. Eleven families are coming, 45 people total. It's going to be so great to meet people who can relate to living with a loved one with Sturge-Weber Syndrome. I will post an update and pictures on the website.

I hope everyone who reads this blog is doing well.

Year In Review

2008-12-30T18:00:00.001-08:00

A December Day at Disneyland

2008-12-15T10:37:00.000-08:00

December 14, 2008

We took Aiden to Disneyland again! Since Dumbo was his favorite ride last time, that's the first ride we took him on. He also enjoyed the Merry-Go-Round, Nemo's Submarine Adventure and walking around Mickey's Toontown. We had a blast!

School Pictures

2008-11-21T11:43:00.000-08:00

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!

Disneyland

2008-10-27T11:03:00.000-07:00

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.

Halloween Treats

2008-10-23T08:33:00.000-07:00

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!!!

Big boys carry their own backpacks.

2008-10-21T12:36:00.000-07:00

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!

Mr. Pumpkin

2008-10-20T12:28:00.000-07:00

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!

"Buddy Booby's Birthmark"

2008-10-13T10:55:00.000-07:00

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/.

Aiden on UCLA's Home Page

2008-09-30T15:17:00.000-07:00

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/

First Post-Op Appointment

2008-09-29T22:51:00.000-07:00

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.

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.

News Article Link

2008-09-25T15:17:00.000-07:00

September 25, 2008

Here's the link to the follow-up article in the SGV Tribune.
http://www.sgvtribune.com/highlanders/azusa/ci_10557446

Follow-Up Article

2008-09-24T17:55:00.000-07:00

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.

Aiden's Walk

2008-09-22T00:41:00.000-07:00

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!

Too excited to wait

2008-09-18T09:54:00.001-07:00

September 18, 2008

I 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.

What a difference a nap makes!

2008-09-17T20:45:00.000-07:00

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.

More Media Coverage

2008-09-16T15:03:00.000-07:00

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.

A Great Monday!

2008-09-15T17:34:00.000-07:00

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!!!!

Adjusting

2008-09-12T15:12:00.000-07:00

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!

Helping the Cause

2008-09-05T23:28:00.000-07:00

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!!!

Back To School

2008-09-05T17:59:00.000-07:00

September 5, 2008

Aiden 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.

Staples Out

2008-09-02T23:31:00.000-07:00

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's story on the news

2008-09-01T18:33:00.000-07:00

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

Third Day Home

2008-08-30T22:41:00.000-07:00

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!

Second Day Home

2008-08-29T15:26:00.000-07:00

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.

Home

2008-08-28T19:40:00.000-07:00

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.

Post Op - Seventh Day

2008-08-27T23:14:00.000-07:00

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!

Post Op - Sixth Day

2008-08-26T21:50:00.000-07:00

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.

Post Op - Fifth Day

2008-08-25T22:20:00.000-07:00

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.

Post Op - Fourth Day

2008-08-24T20:19:00.000-07:00

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.

Post Op - Second Day & Third Day

2008-08-23T08:01:00.000-07:00

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...

A special "Thank You"

2008-08-22T13:08:00.000-07:00

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

2008-08-22T10:19:00.001-07:00

August 22, 2008

Getting 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.

Surgery - Finished

2008-08-21T18:49:00.000-07:00

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.

Surgery - Fourth Update

2008-08-21T18:05:00.000-07:00

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.

Surgery - Third Update

2008-08-21T17:03:00.000-07:00

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.

Surgery - Second Update

2008-08-21T12:44:00.000-07:00

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.

Surgery - First Update

2008-08-21T12:39:00.000-07:00

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.

Hospital Admission

2008-08-20T12:51:00.000-07:00

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.

Seizures

2008-08-12T16:49:00.000-07:00

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.

Blood Drive

2008-08-09T18:40:00.000-07:00

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

Date Set for Surgery

2008-08-05T17:31:00.000-07:00

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).

Second Meeting with Dr. Mathern

2008-07-22T12:46:00.000-07:00

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.

New Opinions on Surgery

2008-07-08T14:11:00.000-07:00

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.

Reconsidering Hemispherectomy

2008-07-02T07:28:00.000-07:00

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...

Considering Hemispherectomy

2008-06-16T23:55:00.000-07:00

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.

EEG Testing at UCLA - Last Day

2008-04-21T16:04:00.000-07:00

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.

EEG Testing at UCLA - 6th Day

2008-04-20T15:28:00.000-07:00

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.

EEG Testing at UCLA - 4th Day

2008-04-18T13:08:00.000-07:00

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.

EEG Testing at UCLA - 1st Day

2008-04-15T18:01:00.000-07:00

April 15, 2008

Today 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.

Sturge-Weber rears it's ugly head, again.

2008-01-07T17:13:00.000-08:00

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.