Friday, August 21, 2009
Friday, July 3, 2009
Thursday, July 2, 2009
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.
Saturday, June 27, 2009
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!
Thursday, June 25, 2009
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.
Tuesday, May 19, 2009
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.
Wednesday, April 22, 2009
Click HERE to check out the "Past Balls".
Sunday, March 29, 2009
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.
Tuesday, March 17, 2009
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!
Wednesday, March 4, 2009
Saturday, February 21, 2009
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.
Thursday, 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.
Thursday, January 22, 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.
Monday, January 12, 2009
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.
Monday, December 15, 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!
Friday, November 21, 2008
Here's the link in case you are interested: http://www.hemifoundation.org/
I am so proud to be a part of this Foundation and I'm enjoying working with them to support and inform those who face this life-changing surgery.
I promise I will post a more detailed update on Aiden and his progress as soon as I can.
Wishing you all a very Happy Thanksgiving!
Monday, October 27, 2008
Thursday, October 23, 2008
Thank you Hemispherectomy Foundation!!!
Tuesday, 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!
Monday, 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!