Happy Anniversary, Aiden!!!

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

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

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

"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

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

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

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

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

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

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

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

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

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

SWS California Family Day

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

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.