Yep, turbulent is the best way to describe the past week. Multiple time this week I have thought…’hold on, it’s gonna be a bumpy ride’. We’ve had several ups and downs.

Gabriel has had several big seizures this week. Most have been during sleeping hours Tuesday, Wednesday and Thursdays night. He only got to go to school on Tuesday. Thursday he had a seizure that I think of 1/2 and 1/2 (start with a quick gasp, then small lip tremors and staring) while eating dinner. I was worried this was a sign the drop seizures were coming back but so far so good.

Last night was tough because he had a 7 minute seizure. We used his emergency medicine (Valium that is administered rectally) after 5 minutes and it still took another 2 minutes to fully stop. Once we use the emergency medicine, we are supposed to call 911 if another seizure occurs. It is difficult to sleep when you know an ambulance trip to the ER is one possible jerk away.

On the upside of life, G and I got to go to a pumpkin patch with my mom’s group. We go every year and it is always a fun trip. It is so nice for me to see my other mommy friends and to watch G play next to kids he has been playing with since they were months old. Gabriel got to play on a huge tube jungle gym (the kind they have in fast food restaurants). It was great to see him climbing and crawling around in the tubes.  We don’t go to fast food places because he still misses and asks for french fries.

He found a perfect little pumpkin that fit right in his hands.  He carried it around faithfully all day.

The other HUGE up this week, were the airline ticket vouchers that arrived via Fedex. They are for our 2nd opinion trip to Baltimore in November.  We had applied for them late last week,  through a partnership between John Hopkins and Southwest Airlines.  Go Southwest! (always loved them…now even more). Especially glad to have this visit set up after our tough week.

Gabriel had a great and busy week. I know we were busy because my “lets go anywhere” kid just wanted to stay home yesterday 🙂 I feel like we have the original Gabriel back. He wants to be outside all the time (technically right now in the garage, with the doors open), his run looks somewhat cordinated (as opposed to a control state of falling), asking to read lots of books, chatting up a storm and asking me to sing about EVERYTHING! He literally asked me to “Sing about the closed library” yesterday. 🙂

He continues to have a blast a school. It is clear to me how good it is for him to be around other kids without mommy around. It has been fun to see him interacting with other children at the library and park this week, I can tell he is getting to used to talking and playing with other kids. He and a little girl at the library negotiated how to share the lego castle without any adult involvement! woo hoo!

We made it 8 days with no seizures, when he had 1 small (gasp)and 1 big (1 1/2 minute) last night. This is consistant with pattern of several days without and a few days with seizures. I am expecting seizures for the next few days and will be pleasantly surprised if I am wrong.

We have started the process of getting a 2nd opinion from a doctor at John’s Hopkins in Baltimore. Our doc here recommended it and we think a 2nd set of eyes on our case will be great. we have an appointment set for early November. We would ask for prayer as we firm up all the details… insurance, flying, lodging, food for g.

****** as I was finishing typing this blog last night Gabriel spike a 103 degree fever. He has been feverish and tired all day (Monday) but has not had any seizures. whew! hoping to get the fever under control so he can go back to school on Wednesday. praying the fever subsides and his appetite returns.  He is several hundred calories short and since the fat from his food is the major component of stopping the seizures we are concerned. ********

hee hee. kind of random picture…but I love it. so great of both my boys. showing off their shirts from a doose fundraiser. (An amazing woman who is working hard to fight the battle for doose kids and epilepsy in general sent them to our family. I have one too but someone had to take the picture).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I am happy to report that Gabriel has had an action packed, fun week! He has started school, spent lots of time with nonna and papa, and talked mommy into taking him to the zoo on sunday…for the sole purpose of riding the train.

yep, there he is, in his adorable conductor outfit! a friend gave it to us as a hand me down a couple months ago but i just got around to getting it out on sunday morning. g had to wear it immediately! we ended up at the zoo after a good 1 1/2 of him asking me if every train he had ever ridden was open. i was frantically searching online to see if any trains were open in kansas city at 10 on a sunday morning…. when it struck me….the zoo! yipppee! i barely had asked him if he wanted to go when he bolted out the car and climbed in his car seat…fully decked out in conductor gear and refusing to leave it at home.

he has super excited to realize conductor bear was also wearing overalls 🙂 i can’t even tell you how cute this little outfit is. thank you friends for passing it along!

while the week, was good and full of fun, gabriel did have several small seizures, all at night and at home. i think about 10 in total over 4 days. right now we are on day 5 without any….so we are expecting some in the next day or so…the pattern right now seems to be 7-9 days with none, then a few days with them.

so with g’s event filled week and me starting back to school, i am exhausted.  good reasons to be tired but i am tired. as i was putting gabriel to bed last night, i was thinking i just want “REST”. then the verse ‘come unto me all who are weary and i will give you rest’ came to mind.  happy sigh. oh yeah…you can find peace in the middle of crazy. then a song from church camp popped into my head….thought i would share it 😉

 

http://www.youtube.com/watch?v=bBA0N_MA6bY

 

sorry for the lack of capitals in this post, the shift key on computer is not working.

 

 

This  is my second blog post of the day but I could not contain my excitement about an adventure that Gabriel and I had today. Chuck had to work all day and G was in a “no, NO, no, no.” mood. Thankfully my Dad asked if we wanted to come meet them for a bike ride. I got the first “yes” from G all morning when I asked him if he wanted to see Nonna and Papa.

It took me a good 10 extra minutes to gather all the food and extra supplies that keto and epilepsy require. Feeling a little sorry for myself that leaving the house for 3 hours means packing a cooler with 2 pre-made meals and various medications.

It was a perfect day for the park, cool but not cold and sunny. G had fun playing on the equipment and riding in the bike trailer.

While at the park, I realized that we were blocks away from one of my favorite pizza places and I had packed a pizza for Gabriel’s lunch. He has seen us eat this pizza multiple times and did not seem bothered by it.

So with my parents on board, we hatched a plan. I went to the restaurant first and ordered the pizza and drinks, so we wouldn’t have to wait long once Gabriel got there. He did great, sat and ate his pizza, then as soon as he was finished eating he wanted to get up and roam around the restaurant.

I had to laugh at myself a little, as most mom’s of preschoolers would not be so excited about taking their child to a restaurant. But I was! His typical preschool behavior helped me remember that I am not missing much not having him with me on the rare occasion when I eat out.

Nonetheless, this was a HUGE step for me. I don’t think we will eat out often but after 6 months of not stepping into any eating establishment with him, I am glad to know it is possible. Every little bit of normal we can get as we battle these seizures is wonderful.

Gabriel and I started our preschool year this week.  Everything is off to a great start.  My sweet boy was so ready for school to start especially after “suffering” through a week of prep time in my classroom.   He would not look at the camera for a picture.  Instead he is showing off his new backpack and checking out school mailbox.

He has loved school! He even talks about it at home (very uncommon for my in the moment kid).  I sent his cheese sandwiches for snacks both days this week.  His teacher say he is eating them just fine.  His teachers read the book I made about how he eats special food and wears a helmet on the playground.

I have always loved my job. This year even more so. I am so glad I work at a preschool because I would not be brave enough to send Gabriel to school without me right there. He has amazing teachers, who know the whole story and have gone above and beyond to make me comfortable and welcome G!

It is a huge relief to have the school year up and running. Just like many parents have been nervous about school starting and wondering how it will go, just with some added craziness.

 

 

Gabriel has a new favorite meal. I spread tons of butter on a specific American cheese and cut it little pieces. Sometimes he calls them cheeseburgers, sometimes cheese sandwiches, sometimes yummy cheese. No matter what, he likes them. As with all keto cooking there many exact measursement  and specific ingredient lists that must be followed. This particular recipe is every crazier than most. I make him snack size portions and meal sized portions.

 

 

Both use Kraft American Deluxe Cheese….but the cheese in each package is different! They have different nutritional information and when entered into our meal calculator, one will work out perfecty for a snack but not a meal and the other will work out perfectly for a meal not a snack. Mindnumbing! BUT…I am so thankful to have another meal he will eat.  He is currently willing to eat 4 meals and about 8 snacks. Too bad for all of us that we can’t just up the calories in the snacks and turn them into meals…but for some fancy math/science reason I don’t totally grasp we can’t. Oh well.  Tonight I made G some of his favorite new food to take for snack to school tomorrow. 🙂