Levi's Phase 1 Testing

We know from the past that the shorter your hair can be for the extended EEG the better! 

JB went ahead and took care of the hair cut at home.....he did a really good job! 

Levi and I checked in on Monday at 8 am to start his EEG stay. The stay was scheduled from Monday to Friday. Depending on the information the doctor gets, how quickly she gets it, and how different each seizure appears depends on how soon he is discharged. 

Technically this testing is Phase 1 for tuber resection surgery. We are not considering the surgery option even remotely yet. We are praying and having faith that Levi's seizures can be controlled with medications and he will outgrow them quickly and going on to be without medication one day. 

However, having this early information of finding the location of the origination of the seizure helps should medication fail. We learned with Jace that as seizures progress they can go from very focal (one spot in the brain) to generalized (all over the brain) making it hard to find the spot that is the true culprit without more invasive tests. That was one of that main reasons we had to do grid placement on Jace before they removed the suspected tuber. 

 Ready to check in for the week! 

Waiting for the EEG techs to come hook him up he asked to watch TV.....and it was Golf he chose to watch. SO much like his daddy! 

Levi was so brave getting the "stickers" on his head. I was worried we would have to papoose him like we had to Jace. He wasn't scared of the air they have to blow for the glue to dry and he laid there nicely for Mr. Luis. 

Such a little trooper! 

I can not say enough good things about the pedi EMU! Everyone we encountered was so refreshing. I think these people actually like their jobs - talk about making a difference in the care received! 

Mr. Luis was great at getting the EEG hooked up for Levi. Those two became buddies over the stay! 

Our day nurse was Ms. Claire. She had the cutest English accent and was so good with Levi. He listened to her and she was able to convince him to do everything necessary - even get his IV. 

She is a one of a kind nurse for sure! 

All hooked up and holding his "Topper" 

I was dreading having to occupy Levi in a little hospital room for more than 1 day but come to find out they have the ability to allow EMU patients to play in the huge playroom now! 

They have a wireless box for the EEG and a camera in the playroom. We spent a lot of time in there. 

That is how Levi and Mr. Luis became such buddies. Ms. Claire would have Levi call Mr. Luis to come hook him up the playroom set up. Levi would kindly ask "Please play in the playroom please?" and Mr. Luis always came right away. 

We were able to pass some time visiting with my BFF Diana! She works in the hospital too and stopped by during her breaks. I love seeing her! 

She made the stay much more bearable for the both of us. She gave Levi a Spider Man stuffed ball - talk about genius! He loves to play catch and this was big enough to catch with his IV in and soft enough to not hurt anything or anyone. Plus she totally spoiled me with a Starbucks coffee :) 

We had a lot of playroom time, visiting with Diana, and snuggling! 

The iPad and TV were great for waiting for his food to get to the room or falling asleep at night lol 

He is such a mover! 

We did FaceTime a few people........Jace and Levi really missed each other and loved being able to see each other and talk. 

The first night the dr asked for Levi to be sleep deprived. He had been up early that morning and then didn't nap at all........then they wanted me to try to keep him awake as late as possible (I think they said midnight was their "goal")  Despite getting a huge car track mat to play on, Levi could only make it to 10 pm. They said that was pretty good since he was only 3 years old and used to going to sleep around 8. 

Toys and Food = Happy Boy

The next day we were given a huge basket from a ministry called "Baskets of Hope" 

There were so many toys and goodies in there for Levi and me. What an amazing ministry! 

That basket helped keep Levi happy at the hospital and will give him fun for long after the stay. 

He wanted to color and he started to write "L's"! I was so excited! He is going to pick up on the writing quickly I am sure!  

Back to the play room to work on his basketball and puzzle skills :) 

Today again I was told to sleep deprive Levi. 

It was pretty difficult to do! He was getting SO sleepy!! 

To get Levi's mind off sleeping I got him up and practicing his letters. 

I am impressed with is tracing! 

Tuesday night we were allowed to go to sleep normally. It still took him a bit to fall asleep but when he did, he was out! 

Wednesday we were given the news that we get to be discharged!!! YAY! 

First they wanted to give him his new medication via IV. After trying they noticed his IV was kinked. While trying to fix the IV it came out. They managed to start another on his other hand but he was so upset that before they could fully tape the IV down he pulled his hand back and it came out too! UGH! Poor guy was so upset! 

Thankfully the doctor said he could take the loading dose orally! No more pokes! 

He was so ready to go home! He laid still to get the leads removed by Mr. Luis and we were out of there! 

So far, the increase in his Trileptal and the addition of Keppra has control his seizures. 

Praying this continues to be the answer! 

Fall Fun

We are so excited about the new addition the to house, a pool and spa! 

We have enjoyed it so much already!  

There are a few minor details the pool builder is working on but we are able to use it. 

Jace isn't as much of an adventurous swimmer as Levi is. 

Jace has always been cautious and does things when he chooses to. 

Levi on the other hand is very fearless....and he is a fish! 

Cooper loves the pool too. 

He's such a great dog and only gets in the pool when we tell him he can.

Having Cooper as part of the family has been awesome!  

This past weekend I snuck away to finally meet my BFF's little boy, Eli!! 

He's so adorable and Diana looks great as a mommy!

I love watching friends of many years become parents. 

That smirk!!! :)  Isn't he adorable!?!?! 

Sunday was the 3rd Annual Pediatric Epilepsy Reunion at the Houston Zoo. 

I don't like that both boys are now patients but I am thankful for the care they can receive here in Houston! 

Levi with Topper

One of my favorite animals are giraffes!! 

We got the chance to feed them! 

What a fun experience! 

Check out these monkeys we came across at the zoo! 

After the zoo we came home and played outside for a bit. 

I asked Jace if he wanted to practice riding his bike. 

He begged me to not let go of the bike but I KNEW he could ride with my help. 

After a few feet I let him go and he kept going! 

You could see the pride in his face when he realized he was doing this by himself! 

Within the hour he learned how to brake and start up by himself. 

Yesterday we celebrated JB's birthday. 

This man is such an incredible husband, daddy, leader, and provider. 

I look forward to celebrating many many more birthdays with my sweets! 

The beginning of fall has been fun so far! 

Bow Season and Selfies

This past weekend was opening day of bow season so we took a trip to Lexington for JB to hunt. 

First thing needed was to check the feeder and make sure its not only full but also throwing corn. 

Levi was quick to help daddy with this job. 

Lexington trips always require a stop at the auction barn for breakfast and walking the catwalk to see all the cows! 

Plus, Papa's house is one of the few places you can get away with eating ice cream way past your bedtime :) 

Levi has found how to take selfies with our phones. 

We never know what to expect when we get our phones back from Levi's possession. 

I had 3 sets of bursts and all were filled with some pretty funny pictures! 

And I will end this post with a Daddy/Levi selfie LOL 

Entering New Seasons

With the change in seasons from summer to fall comes less sweltering weather! 

With the nicer weather comes the ability to really enjoy the outdoors. 

Levi has been my little buddy/helper lately. He has been my jogging buddy......

we run to the parks around the neighborhood. It gives me breaks between runs but it doesn't help me increase my endurance for distance in my runs. 

And best of all, Levi has been my laundry "helper"

As athletic and fearless Levi has been from the very start, we thought he would pick up the Strider bike quickly. As soon as he was able to walk well I have given him chances to learn to ride it. He always freaked out and didn't want to try to walk more than 2 steps. 

Fast forward to earlier this month.....Levi went into the garage and started to test the bike out by himself. He was so proud that he was able to ride it! 

We tweaked the seat height and handlebars and he was off! It took a day or two for him to really get confident on it but he was determined. Riding his bike was all he wanted to do! 

Fall also brings football season!
We love to go to see Texas play so when we get the chance we jump on it!
We went to the Texas vs. Cal game....
What an exciting yet disappointing game we chose to go to.

We watched the LHN pregame broadcast live. Wish we were able to get to talk to Vince Young but he was quickly carted away to the game right after the show. 

After the one point loss thanks to the kicker, Nick Rose......we started to teach the boys how to kick a football! LOL They didn't too bad! They could probably walk on to Texas and the team not be off any worse..... I kid! LOL 

As Levi has been a "helper", he has also been a handful!
Popsicles, chewing gum, sitting on the table, and milk are some of his favorite things right now..... along with doing things "by myself"

Levi finds more independence and Jace finds his silly side! 

He was lifting his 4 wheeler like a strong man......

then dancing silly while driving the 4 wheeler! LOL
This kid is so fun!

Jace can be silly but he is always sweet!
I love that he thinks I am his superpower! :)

On May 23rd my Mimi passed away. She donated her body to medical research so a celebration of life was scheduled for a time when most people would be able to attend. 

The memorial was September 26th and what a celebration it was. 

Doves were released, stories were shared, and family was reunited. 

I miss my Mimi so very much! Being the mother of 7 children she was the portrait of patience, love, and grace. 

Fall pictures came up really quick at school! It was far too warm for Jace to wear true fall clothes so we made due with what we could. Jace is one handsome little boy! 

We went to Levi's doctor appointment with the epileptologist on the 29th. 

They started him on trileptal and want to schedule a longer EEG. Since the routine EEG didn't catch a seizure they want to be sure to see where and how it begins in his brain. 

We do not have that scheduled yet but we have started his medicine. We are increasing the dose over 3 weeks to slowly reach his dose for his body weight. 

So far he has not had a seizure since Friday, Oct 2nd. and we pray he continues to be seizure free. 

Please continue to pray along with us that we do not have to get on the medication roller coaster and this one medicine remains to be the answer for him.