What happens during an EEG?

I wondered the same thing myself, I can only figure out so much from Google-ing it. Kaleb did his EEG (Electroencephalography) today. The test was so much longer than we originally expected. It was about 50 minutes long, after he was all wrapped up and the many many leads were already placed on him.


He was swaddled in a huge blanket and then basically wrapped up and restrained since any movement will alter the test results. Once they had him all wrapped up, he had many leads placed all over his head with goopy glue stuff. He was not a happy camper. There was a lot of screaming and crying at first, since he of course has no idea what is going on. Luckily we had his emergency pacifier handy and they set up a TV for him to watch to keep him distracted. Towards the end they started testing his reaction to different lights, strobe lights, frequencies, etc. He ended up having to close his eyes towards the end because the strobes were getting to him. 


Nothing special to do after the test other than be extra nice because we felt so guilty over how sad and miserable he looked all wrapped up. Then comes the fun part, I think we'll have to wash his hair a couple of dozen times before all the glue comes off his scalp and curls. I leave you with the images that made me feel terribly guilty. Cereal for dinner? Sure thing baby, anything you want <3

Getting the leads placed all over his head. All the colorful wires you see toward the top center of the picture are each one lead attached to his head. That's a lot of glue to wash out!

The leads were bandaged to keep them all sturdy and in place. This picture also gives you a better view of how he was restrained for the test. His face and feet were basically the only parts exposed.

The search for a diagnosis begins

Today my poor little Kaleb Monster started the day with a very miserable appointment. He had to do blood work. After Daddy held him down while he screamed bloody murder for EIGHT tubes of blood, he was informed that he'd have to wait about four days for him to recoup. Why? So he could come back so they could take eight more tubes of blood. Yikes! Poor thing. Blood work is miserable enough when you know what's going on. Why so much blood? Kaleb is having a lot of tests run, including full genetic testing.

This is the first step in the search for a diagnosis. He recently went to his first neurological evaluation. The neurologists set us up for some tests that he hopes will help him pinpoint the root of Kaleb's developmental delays and sensory issues. Apart from the blood work he is also scheduled for an EKG, EEG and an MRI.

This was one of the first times a doctor actually managed to place and keep a stethoscope on Kaleb. He discovered that Kaleb has a heart murmur. He said that it's probably nothing; a lot of infants/toddlers actually have heart murmurs which basically just go away on their own with time. He set a consultation with a pediatric cardiologists who will run an EKG (Electrocardiogram, a test used to check for problems with the heart) to make sure it's nothing serious.

An EEG (electroencephalogram) is a test run to detect problems with electrical activity in the brain. Basically it records brain waves and will help the doctor notice if there are any issues or neurological problems with his brain. This test is basically the same as the EKG. For the EKG they would be putting the leads (basically many small metal disks connected to wires held in place by strong stickers) all over his chest and for the EEG they would be putting the leads all over his scalp.

The MRI (Magnetic resonance imaging) is another test that they will be running on his brain. While the EEG will show them his brain wave activity, the MRI will actually give them an image of the structure of his brain which will be used to determine if there are any abnormalities. The MRI is the one that makes me really sad. Why? Well if you've been unlucky enough to need an MRI you know that they take a long time and that you have to lie perfectly still otherwise it distorts the image. How do you get a toddler to sit perfectly still for an MRI? He has to be sedated :( Kaleb will be sedated for about an hour for the MRI. The very thought of him having to be sedated breaks my little heart.

For some children it takes an incredibly long time before doctors are able to diagnose the source of their developmental problems. This is especially true when they are younger and can't communicate. They can't exactly answer questions, which makes it tougher. I hate that Kaleb has to go through all of this. I know what it's like to have endless doctor's appointments and doctors being unable to diagnose the problem. I suppose it has somewhat prepared both Daddy Monster and I to stay patient and positive during this process. We just need to remind ourselves that every test brings us one step closer to a diagnosis. Most importantly a diagnosis will help figure out what methods would work best to help him.

Miami Science Museum

We love our local science museum. We've been members or reciprocal members (members of another local museum or botanical garden that get us in to the museum for free) for many years. You'd think an almost two year old is way too young to enjoy a science museum, but he really loves it. Kaleb knows the museum very well and gets excited over new exhibits. We can't wait until they finish building the new science museum downtown. It's going to be great!

We got to see a research sub that was here for only about two days. The inside was tiny!

Kaleb and Mommy are both wearing Batman shirts, simply because they are awesome.

Kaleb got to touch some stingrays in the tank. Such a strange slimy texture.

He enjoys anything with touch screen technology.

We explained to him that his Aunt Michelle does remote sensing for a living. It's a good thing a toddler isn't ready for an in depth explanation, not sure we can manage that one.

He loved playing with the tornado, he'd turn it back on whenever the demo was over.

He somehow managed to create his own profile.

And then started to create a virtual environment to figure out his carbon footprint.

A big wall projector survey. You use your shadow to move the boxes and answer questions. Kaleb did that better than the grown ups.

Mommy and Kaleb are hot.

No really, they are, see!

Pouring water down to move the wheel. He may not understand hydropower but it's a lesson in cause and effect.

Learning how pulleys help you life things..

 With a little help from Mommy.

Air table that simulates traffic. Kaleb loves playing with this.

We powered up some tools by riding a bike.

We played inside a giant tire for no reason at all.

Kaleb would occasionally find the very center of the disc and the ball would spin in place. He was so proud of himself.

Mommy showed him how to use a hoola-hoop

Then he gave it a try. Maybe in a few more years.

He'd hold onto this and spin. If he'd lean back he'd slow down and if he tucked in he'd go faster. It was hard to get him off this, he's big on anything that spins or swings.

Who doesn't love to watch the balls circle around? Lesson in gravitational pull

We found him trying to bust out a snake.

Cranking batteries to power up a toy car.

Comparing solar panels

Meeting a big bear. He signed bear for the first time after seeing this guy.

Riding up and down on a bench

Powered by Mommy

The day ends the way they always do, a very relaxing nap to re-energize.

Some People Suck

We are blessed to have a lot of friends and family in our lives. A lot of them have been incredibly helpful and understanding while we struggle with Kaleb's developmental delays. They ask us for tips on how to best interact with Kaleb so that he becomes comfortable around them more quickly and what they can do to help him (or us). Others try to make us feel better by claiming that there's nothing wrong with Kaleb or that we're over reacting. Kaleb is pretty damn amazing if I do say so myself but that doesn't mean there's nothing wrong.

I know they mean well, but it's incredibly frustrating. We spend so much time fighting to our insurance, chasing grants, talking to coordinators, working with therapists, coordinating with doctors, tracking down specialists, researching, planning and teaching. A lot of time and energy goes into working with Kaleb on his speech and other issues. If there IS something wrong, getting help early on is important. If there ISN'T anything wrong, then what does it hurt?

Meaning, if you want to think I'm over reacting, go right ahead, just keep it to yourself. Telling me that I'm over reacting doesn't help. Telling me that I'm "lucky that he doesn't talk" because your kid won't shut up isn't helpful, isn't funny and just isn't nice. I'm pouring my heart and soul into something as simple as just getting him to try and say the word "mommy" again.  (Yes, again. He learned mama which turned into mommy a long time ago. It was one of the few words he would say. He lost it, along with another. Words he once knew he has lost and has been unable to say for months. Regression of speech is a big red flag)

In conclusion, some people suck. Please stop. If you're not one of them, then thank you. <3

Now I leave you with this incredibly adorable clip of Kaleb's pop quiz.

He's so proud of himself, it's so stinkin' cute!

Puzzles!

There's nothing Kaleb likes more than puzzles. He's totally into them at the moment. We have a bunch of awesome Melissa & Doug wooden puzzles that he plays with often. I decided to take two quick videos while he played with his puzzles since he looks so focused.

As you can see he's actually pretty speedy when it comes to the puzzles. Here he is color matching quickly. He also has numbers, shapes, alphabet and animals. We're hoping to add more puzzles to his collection. He's building up quite the impressive assortment of Melissa and Doug toys. So far all doctors and therapists have been impressed with his puzzle completion skills. We didn't realize he was quickly completing puzzles above his age range. We just knew he loved them. Drs said it's not surprising because on all tests we were told that his cognitive skills are well above average for his age.

Another reason why we love that he's into his puzzles is because they help keep him focused on one task and help him work on his fine motor skills. You'll notice he has a lot more trouble turning and manipulating the puzzle pieces than actually figuring out where they go. Most importantly they provide us with a great opportunity to work on his language skills. We usually tell him what color/shape/animal/letter etc. he is  holding and try to get him to repeat us. This time around I just let him be and you can actually see him do three American Sign Language signs for the animal pieces. "Frog" when he opens and closes his first under his chin. "Bird" when he opens and closes his fingers at his lips (though fingers should be facing away not towards him). "Cat" when he opens and closes his fingers on his cheek (though again it's slightly modified since he has some fine motor planning issues). 

Take me out to the ball game.

Kaleb's Abuela called me in the middle of my work day to ask if she could "borrow" him. Why? To take Kaleb to his first baseball game. It sounded like fun so I gave her permission (though I always secretly worry she's going to run off with him and never come back). So Kaleb's Abuela and Grandpa picked him up when he woke up from his nap. And off they went on their adventure.

Kaleb represents his home team the Miami Marlins with gear his Grandpa bought him

The world's cutest baseball fan enjoyed the game from behind home plate

Rooting for the home team, he apparently had a lot of fun yelling when the rest of the crowd did

Unfortunately he couldn't finish the game (bedtime and all!), but on his way out he sneaked his way over to another seat so he could keep watching the game

How can you argue with such a happy looking boy?

Once he was ready, he left the stadium and headed home after an exciting day watching his first baseball game.

Kaleb handled the commotion and crowds very well. Abuela reported that we was babbling to anyone who would listen. So happy to see how much progress he's made with attempts at socializing. As he left the stadium, he shouted out "Bye!" to everyone he saw. He just learned to say "Bye" two days ago and he's very excited about it!

Early Birthday Gift

So Kaleb's birthday is at the end of next month. We've already given him one of his gifts. I think he likes it.

Okay. I get it, most people don't think a PC is an age appropriate gift for a two year old's birthday. However, Kaleb has been born into a techie family and he knows it. He can spot a PC, laptop or tablet from a mile away and he wants to explore them. We gave him his own toy laptop and e-reader which he uses. He's also surprisingly good with the real thing, he works his Abuela's laptop better than she does. Limited screen time and very educational software. He gets so excited when he turns on his computer, he's also surprisingly gentle with it. He pushes his mouse back, turns off his own monitor and pushes his chair in when he's "All Done!". Too cute.