Going Down a Hill

I think there are a lot of parents out there that might take things for granted. I know I would.

What I do not take for granted is when Gio does something that other kids just do on a normal basis.

I took Gio and Benicio sledding today at Elver Park...great sledding hill, lots of kids.

What was so awesome was that Gio immediately walked up the hill and sat down, waiting for Benicio to come up the hill...he was pulling the sled. For Benicio, this was only the second time ever...he did this last year but was only 15 months old. Gio has done this before...and he showed that he remembered! And that's a huge deal!!!!!

I sat Gio in the back and Benicio in the front and pushed them down.

And here's something even more amazing...Gio used his hands as "guides" and kept them straight going down the hill. When they stopped, he stood up and began walking up the hill again!

The fact he kept his balance up the hill and realized he could use his hands to steer is huge.

Makes you want to not take things your kids do for granted.

How Much Crab is too Much?

So Gio has one Keto Meal that involves Crab and Tomato and Canola Oil and Mayo. Simple enough.
38 grams of Mayo mixed with 6 grams of Oil with some garlic salt, ad 37 grams of Crab and chop up 99 grams of tomato (nearly a whole tomato!) and mix.
It's actually the only Keto Meal we have that looks like a full bowl of food AND doesn't involve the drinking of Heavy Cream.
So...we had some crab in the freezer and I made some Monday and he loved it. I mean...I thought he was going to jump out of his seat at how much food he was eating. He then had some for lunch Tuesday. Now...I looked this morning and noticed there was more than enough crab left to make some more I told his nanny and she said, "He did have the for lunch yesterday." I said, go ahead and give it to him for lunch again.
And what did I do for dinner...same thing.
Now, in my mind, he's been eating junk for nearly 3 months now. Junk that has worked to ward of seizures, but still junk. So...to me, the crab was great! Mind you...it's A LOT of mayo and not a lot of crab...but he still gets a whole tomato!
Well...he was none to pleased when he saw the bowl of crab, mayo, tomato tonight. He is certainly done with it. He begrudgingly ate it...but I got dirty looks all night.
Basically, I'm cheap and didn't want the crab to go to waste. Poor kid...has a cheap dad.

Huge Strides! But Don't Drink That!

I have decided that feeding Gio the foods from the diet has become very easy.
Actually, this is much easier than when we had to feed him normal food! He eats it all, it only takes about 15 minutes and...the best part...he loves it!
Prior to this, Charlotte and I would spend more than half an hour trying to get Gio to eat most things...other than hot dogs. He would spit things out, turn his head or not chew the food and try to choke on it so he could vomit and not eat.
Now...he can't wait for the bacon or hot dogs or brats or sausage or chicken covered in oil. Tonight, he actually got to eat crab meat with tomatoes! Plus 36 grams of mayonnaise and 10 grams of canola oil. It actually looked like a full meal...of mayonnaise.
Regardless, I discovered something tonight that I had to test with him. I wasn't sure if he was just randomly doing something or actually falling directions.
I said, "Gio, please come here and go upstairs for a bath." He came from the living room to the stairs and turned to wait for me. I thought it was a fluke...so I walked away to grab Benicio in the kitchen and Gio went back to the windowsill to stare outside. I again said, "Gio, let's go upstairs and take a bath". He turned toward the stairs and walked up them and into the bathroom.
There's a few amazing things with this.
First, he walked up the stairs with no help.
Second, he followed my commands and actually walked up the stairs.
Third he walked into the bathroom.
Now...even parents of kids who have developed normally have issues with getting kids to follow commands...but when you have a child who you never thought would follow simple commands ever, this is nothing short of miraculous.
Unfortunately, on Sunday, he drank some whole milk Benicio left in a glass and we missed it. That's not good. He had a huge seizure that left him having smaller seizures for about 7 hours...barely able to sleep even after a strong sedative...and no celebrating for the Packers.
But, this morning...he was running around like nothing and had a great day in therapy.
I think this will be a great few years!

Major Med Change

Giovanni has been on a drug called Topiramate for more than 2 years. We considered it his base drug - we thought it was working because it limited seizures and whenever we added new ones, nothing changed. Gio has always been on 2 to 3 seizure drugs at a time...it's the way doctors try to battle the Lennox-Gastaut. But, none of the combinations have worked, obviously. So, now that Gio is only having the large tonic seizures, the doctors have decided to change to a new drug and remove Topiramate.

We are waiting to see a change.

While the small, constant myoclonic seizures are gone, the tonic seizures are getting longer. He's not breathing sometimes for more than 45 seconds. He still has these about 4 times a day...mostly when he's sleeping or about to wake-up.

It's good and bad at the same time. He's not having the seizures that left him unable to walk last year...but he's still having the seizures we believe are affecting his development.

One good thing...and most parents might not find this good...Gio is trying to bother his little brother...a lot. He's also trying to take bites out of him. Unfortunately, when Gio is very excited or frustrated, he chooses to use his teeth to remind people he's there. Ask John, a schoolmate in Gio's early-childhood class. Gio's teacher this week has to stick her fingers into Gio's cheek to pry his mouth off John's arm. Luckily, Gio didn't break skin, but John had great dental imprints a dentist could use to make a retainer from. While we are pleased to see Gio interacting with other kids...this might not be the best way.

This is the only time Gio isn't running around...while sleeping.

Spontaneous Sign Language

I spent a week in Phoenix with Benicio visiting my family while Charlotte stayed back home with Gio. It was a tough decision for us to be apart for the Holidays, but traveling with Gio on the new diet, we thought, would've been very, very hard. Plus, Gio had minor surgery on the 28th of December to change out the G-Tube and then he had his one month visit with the dietitian and neurologist about the diet.

The surgery went well...minor sedation to change the tube to a button. Now it looks like he has a plug on his belly rather than a huge contraption with a tube hanging out. We've only been using it when he doesn't drink all his fluids or if he has a seizure and cannot eat at the time he's supposed to be eating...and that's been rare. Since the diet started, he's been drinking water like a champ. He can drink flavored water and sucks that down like it's pure sugar. He has to drink about 48oz a day...he's drinking close to 65oz. We've been double diapering him.

So, while I was gone, Charlotte calls me very excited with some unbelievable news. Gio spontaneously started signing for "more". One of the first things he ever learned as a small child with the sign for "more". He used it constantly. When he started talking he would say more and sign it. All that went away in the past year and a half. But, Thursday December 30th after drinking a cup of water, he turned to Charlotte and signed "more"....no prompt, no cajoling...all on his own.

It had come back!

Of course, the excitement probably overwhelmed the kid because now he's constantly signing "more" and smiling. But, the praise we give him and he loves won't end. He's already started clapping for himself again!

It's pure joy for us to see this. It is surely a sign that everything will start coming back...it has to at this point.