Getting Caught Up

 Two weekends ago we went to an event for the Children's theater and Stella performed that night. It wasn't their typical play, but more of a variety singing performance. Either way, Stella and all her castmates did a fantastic job.

Amber won a basket and gave Max a "smillow" from it so her kids didn't fight over who was going to get it. This pillow smells like a s'mores and now Max wants all the "smillows" out there.

That weekend we also went to see Clifford. Max passed the math test that we were studying for so he earned it. It was a very cute movie.


Max has started golf lessons again on Thursday nights. He really enjoys golf and looks forward to it so we plan to continue golf through Spring.

Last Friday, Max's school held a turkey trot. This is where the kids run around the school four times and each time they lap they get a letter on their arm until it spells out trot. Andy and I showed up for when the second graders were running and cheered Max on. 

That night his school was having a family fun night to raise money. There were bounce houses, carnival games, food, video game truck, basket raffle items, etc. I only have two pictures from the evening because Max told us that he is not going to hang out with us that night since he will be with his friends. He said we could sit in the corner. This was shocking to hear since he's only in second grade. He's growing up so fast. Andy and I found other parents that we know and parked it there. Max only came by to get money for food and water. Other than that we really didn't see him.

Grandpa T and Grandma S are back in town for a couple weeks so we went out to a fancy seafood dinner on Saturday night.

On Sunday I took Max to the park to play baseball with his friends. We rode our bikes to the park and when I arrived I found out it was kids against parents. Eeek! I was never into sports and the last time I probably played baseball was probably in elementary school. I joined in and gave it my all. Max thought it was great that I participated and smiled each time I scored a run and laughed every time I struck out. It was a fun Sunday afternoon at the park and Max had a blast playing baseball with his friends. I was definitely sore the next day at work.

One night recently Sammy climbed up on the couch and found the perfect spot to sit. It was too funny and we were all laughing. She was looking at us like "what's the problem? I am just sitting here."

Boys Fishing Day

 Last Saturday Andy took Max fishing all day up at Bartlett Lake with Russell and Mona. Honestly, when they left the house at 7:30 in the morning I thought they would return about noon. Max has never really done well at fishing for very long. He tends to get bored easily and pack up the chairs and belongings early ready to leave. Not this time. Andy said Max had so much fun just playing with Mona in the sand, water and rocks. They just played all day long. No electronics! Just good ol' fashion playing. That made me very happy. 

Max was exhausted from playing so much outside all day that Andy didn't even get out of the park before Max fell asleep. 


They returned home at 5:00pm and Max was so excited to tell me about their day together and how much fun he had. I believe And caught three fish, but I honestly can't remember now. While they were gone all day I spent my time shopping for Max's class's basket donation for the school's upcoming Family Fun Night. It's a way for the PTO to raise money and each class has to donate a basket. I got roped into helping out so I was out shopping for the supplies and putting the basket together. I think it turned out pretty good. 

Max Update

As promised in a prior post, I have an update on Max's epilepsy. The genetics test came back, and we found out what is causing his epilepsy. He has an abnormal gene. His SLC2A1 gene is deficient, or you can say he has GLUT1 deficiency. 

This abnormal gene provides instructions for producing a protein called the glucose transporter protein type 1 (GLUT1).  In the brain, GLUT1 protein is involved in moving glucose from the bloodstream into the cerebrospinal fluid, which surrounds the brain. Basically, this gene is in charge of transporting glucose to and from your brain. And, glucose is the brain's main energy source and seizures can occur when glucose is not properly transported into the brain. When this gene is deficient it impairs your brain's metabolism. Everybody is different and it really depends on how your body handles GLUT1 deficiency. It causes seizures in many people, but not all people. 

Some of the triggers that can cause a seizure in a GLUT1 deficient person are fatigue, anxiety, excitement, strong emotional reactions, excessive exercise, hunger, illness, hormones, and temperature changes. So, what can we do to help Max? The answer is, not much. The only thing that can help a GLUT1 deficient person is a keto diet. If you know anything about keto diets you know it would be terrible for children. It's very strict and if the child who is on the diet slips up one time it could cause a grand mal seizure. So, doctors don't like to prescribe a keto diet unless medicine doesn't work. In this case, medicine does work for Max. He has not had a grand mal seizure since he's been on his medication and it has helped manage his myoclonic jerks (small seizures). I have only spoken to the nurse for Max's neurologist and have yet to speak to the doctor. The nurse said she can't imagine the doctor will prescribe the diet since the medicine is working and we will probably continue on with what we are currently doing. I did learn though that a proper diet and hydration are very helpful with GLUT1. 

It's said that this is a rare genetic disorder since there are only 500 cases on record, but that's technically not true. They don't have an accurate number because insurance tends to decline genetic testing in epileptic patients and genetic testing is the only way to find out if you are deficient. Also, it's been said that many children are misdiagnosed and I can only assume that's because the genetic testing didn't happen. 

With that said, the genetics testing showed that Max got this deficient gene from me. I carry the same deficient gene. The nurse asked if I ever had epilepsy and not that I, or my parents, know of. I never had an actual seizure. But, when you read about GLUT1 deficiency I can relate to a lot of the symptoms over the years. 

This answer really helps me feel a lot better just knowing what is causing his epilepsy. I feel like a huge weight has been lifted off my shoulders. It explains a lot about his exhaustion if he plays too hard and how he can fall asleep anywhere. This just really answers a lot of questions and helps us be more understanding. One thing that I have to ask his doctor is if he can still grow out of this. I read online that it's still possible, but I would like to hear what his neurologist has to say since he knows Max.

Halloween Weekend

 And just like that, my favorite holiday is over. We had a weekend full of Halloween fun. On Friday night we trick or treated at my office. Just like years past, team members go all out on decorating their department and my department did Alice in Wonderland. The winning department did a Star Wars theme and they did an impressive job. 

Since this was the night after Max's first NFL game he was exhausted. He fell asleep in the car pretty much right after the trick or treating was over, so instead of going out to eat like we planned, we picked up food. 

On Saturday we carved our pumpkins. Max did a lot of the work this year. He still doesn't like to touch the pumpkin guts, but he sure likes using the saw.

This was Sammy's first Halloween and she learned that she loves pumpkin guts. I was having a hard time keeping her away from the pumpkins. We let her eat a little, but we didn't want it to be a pumpkin free-for-all. Zoe could care less about the pumpkins. She just wanted to lay next to us and watch.

On Sunday we went over to the Campbell's for dinner and our annual trick or treating in their neighborhood for the full-sized candy bars. Max picked out our family costume this year. He thought it was hilarious that he was the stay puffed marshmallow man, and Andy and I agreed. It was pretty funny. It was hilarious to watch him run down the street. 

It was a late night and it's hard when Halloween is on a Sunday. Max had a hard time getting out of bed this morning and I do feel bad for all the teachers out there that had to teach today, especially the elementary teachers.