Back at it

So defeated and devistated. Not sure why we are at this point again, but we are back to seizures lasting 8+ minutes. Jayen had his second eight minute seizure today. The last one was only three days ago and was also 8 minutes. I know we are continuously told to wait until 6 months post surgery, but I just don't see how another two months will really matter. So sad and unsure what is the next step. What is in his future?

Ultrasound for my baby!

Nope, not pregnant! But I did have to take my baby in for an ultrasound. We have been seeing these strange bumps on Jayen's head and weren't sure if they were something to be concerned about. I sent pictures to Dr. Toth to see what he thought. We went in yesterday so he could see them in person, but he wasn't sure what to make of them either.

 

The first ultrasound technician wasn't getting a good enough picture so she called someone else in. I'm not sure if it was just because it was the end of the day or if the next technician was just impatient, but I feel like the answer I was given was an easy out. He found a pin where Jayen's skull was plated together and quickly blew us off and said that's what it is. I feel like we didn't even scan the areas I was most concerned about. I asked some other parents on a facebook group I belong to and a few have responded. Most say you can feel the pins, but they feel small like pins. What I have been seeing with Jayen have been much larger and seem to change size frequently.

 

 

I guess we will just wait until we see Dr. Kebriaei again in July. I hope they are at their biggest when we have our appointment so there is no doubt what/where they are.

Fun, but not fun!

15 days! Not bad, I'll take it. Jayen went 15 days without a seizure. This one though, really took a toll on him. It lasted about 8 minutes total with diastat after 3 minutes. It was early enough in the morning that we were hopeful he would sleep for a little bit then wake up for baseball. I would hate for him to miss baseball. I think it is one of his true passions. I love that his daddy is his coach, his uncle is his buddy, and his big brother helps the pitcher. Our whole family gets involved!
Daddy had to go in and get clothes for Dalan, so the closet door woke Jayen up. He was still pretty out of it and couldn't keep his balance. I was very worried! We followed him around and made sure someone was always within safe distance. It was a challenge getting three kids and two adults ready while being down a set of adult hands. The drive to the field was just long enough that I think Jayen was ready to go by the time we got there. As soon as he realized where we were, he was unbuckling and grinning ear to ear. The game turned out great and Jayen actually participated better than normal. Glad those stupid seizures didn't take his fun away too!
After baseball we got to play outside in the pool and sprinkler while mom and dad worked on the house. We invited the neighbor kids over and they all played together. Jayen was once again grinning ear to ear. He is such a social butterfly. I was amazed at how well the kids responded to him. There was one time he bumped into another kid and I told him to say sorry. He signed it, but the other child kept telling me he wasn't saying sorry! I actually laughed and re-explained how Jayen doesn't talk and that was his way of saying sorry. They both had a little moment then and I think they played even better afterwards.
When the kids all left, we got out the big wheels and let the kids drive around. I am not always a fan of this activity, but for some reason I was in tears watching Jayen drive around. He is learning so quickly how to maneuver it and get where he actually wants to go. It constantly makes me think about the medication they wanted to put him on that could potentially make him loose his peripheral vision. I still dream that some day he will be independent enough, seizure free long enough, and responsible enough to drive. Hopefully more than just a hot wheel car!

We continued the evening with the neighbors and ended up at their house at the end of the night. They have a much larger pool! We stayed as long as we could but left quickly after seeing Jayen's face, arms and back. I don't know why he swells up so bad from bug bites. We were all getting eaten alive, but those bugs sure do like Jayen.

 

Hopefully

In a funk

Jayen has been seizure free for NINE days now. Yes I did knock on wood! Things have been going well, but for some reason I was in a very sad mood this past weekend. I was playing songs from my playlist that used to play on this blog. I think I just needed to reflect on things. Today I think I had a little relection moment that helped get me out of my funk. I belong to a group online specifically for parents of kids with Infantile Spasms. One mom posted,

"Having a really hard time this week. I think I've cried every night. The reality of this diagnosis is gripping me so tight that I can't breath. I'm so afraid of everything. The present and future. I'm so sad for my baby. I also have another son who is 13 months older then Boone. I was so excited to have two boys so close in age but will they ever have a bond? Am I showing my older son who is still a baby himself that he is loved and cherished as mush as his baby brother. Does this pit in your stomach ever go away? I'm usually not this way but I can't snap out of it.

He was diagnosed in March and is now 13 months old. I have avoided researching as mush as I can because it is scary. I feel that since this has happened my life is consumed with doctors, therapies, stressing because he's refusing to open his mouth for meds, insurance, meetings with case workers and making sure prescriptions are covered and being sent since we don't have speciality pharmacies in my area. On top of all of this I have a full time job that I need. I used my family medical leave up for the year for maternity leave. I'm so afraid of failing. You always fear you will fail your kids in some way but that's not an option in this case. He needs me to give 200 percent at all times and 3 months later I'm already exhausted. I hope this doesn't make me sound like I'm giving up because I'm not. I just need to let some of this out."

This broke my heart! I remember all too well this feeling and this place! I knew I needed to help. I responded,

"I would love to say that the life consumtion does get better, but I'm four years into this diagnosis and I feel like insurance, doctors, therapies, pharmacy and keeping on top of everyone to make sure they are doing their job is eating me alive. I just make sure to take everything a day at a time. My boys are two years apart. I have always had the same fears you have and somewhat still do, but I must share something that happened just yesterday that made me stress a little less. My IS younger son plays on a special needs baseball team. His older brother likes to be his helper but often gets frustrated and it ends in disaster. As we were waiting for the game to start a younger man came up to my oldest and was hugging him and telling him how cute he was. It was very awkward but my son knew that he was special and played along with the situation. The younger man was finally pulled away by his parents and my son looked an me and said that was weird and smiled. My heart melted to the floor. I don't know any 6 year old that would have been that comfortable in that situation. My IS child takes a lot away from my other children ie my time, energy, and attention, but he also gives them something no one else can. They have a relationship that is different than I wanted, but is exactly what they both needed. They are brothers and fight like it, but if anyone messes with his brother he is the first to put them in their place. Hang in there!"

I hope my words bring some strength to her. So many prayers to her and all the families dealing with this diagnosis.

 

And so proud of Dalan. He was so amazing in that situation! It brings tears to my eyes just thinking about it again. The guy was really in his face and was hugging him and tickling him, but Dalan just stood there, smiled, and let him. His heart has a special place for others with special needs too. Dalan you are one amazing kid!

 



Happy Father's Day to the best daddy ever!

Today is Father's Day and we have a reason to celebrate. We have one of the best daddies around. I don't know where I would be without him, and I'm not sure where the kids would be without him either. Hopefully we showed him how much we love and appreciate him!

 

Jayen gave daddy a trophy (the same one he received last year for All Play baseball) that said, "World's Greatest 'Coach' Happy Father's Day 2014". I think they were both pretty proud of it.

Happy Father's day Matt. Thanks for being such a wonderful father!

Papillion Days

We were able to hit up Papillion Days parade after baseball today! Grandma, Grandpa, Allissa and John all join us. Daddy had to go to a funeral so mommy appreciated the extra set of hands to help out! The kids also appreciated the extra hands to grab more candy!

 

I think Jayen's favorite part had to be the train! Shriner's hospital always puts on a great show. Although we don't use them, they of course hold a special place in our hearts.

We came home with sweat filled shirts, nice tans, and a ton of candy. Wish we were going to be around next year, but hopeful that someday we can come back and call Papillion home!

Epilepsy Walk registration

We just registered our team for this years Epilepsy walk. Our team name is Jayen's Journey. Please join our team and show your support for him and many others with Epilepsy. This is our last year in Nebraska for this walk and we want to make it the biggest and best one yet. The walk itself is on Aug 16th at 7:30 AM at Shadow Lake Towne Center in Papillion. Additionally, we've made shirts specifically for Jayen's team at the beginning of the year. If you didn't ordered one before and want one contact Nicole or Matt so we can get another order started. Share with all your friends, family, co-workers and more! We want to have the biggest team that raises the most. Thanks in advance. The website is:
http://nebraskaepilepsywalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1110780&lis=1&kntae1110780=9C350B5D8BEF42B3A9670E36604BBFBC&team=5996608
Click on Join Our Team!

Dream Night at the Zoo

We were somehow fortunate enough to be invited to the Dream Night at the Omaha Henry Doorly Zoo. Dream Night is a national annual entrance-free evening opening of a zoo exclusively for chronically ill and disabled children, their parents and brothers and sisters. We were so spoiled by the zoo staff. We were given free hamburgers, hotdogs, chips, apples and caramel dip, popcorn, ice cream, pop, lemonade, and cotton candy. We had back stage access to the giraffes and aquarium; a free round trip ride on the train; face painting, carnival games, and a percussion band. The night was so amazing. I'm sad Dalan wasn't with us to experience it all, but we made the most out of it for him! This truly was a dream night at the zoo. A huge Thank You to all who make events like this possible for children like Jayen and their families. I love when Jayen can go out in public and be himself and fit in. His screaming is not looked down upon. His constant wiggling and moving is not a bother to the people sitting near us. He even threw a hotdog on the floor, in the direction of one of the workers, and she was teasing him about missing her instead of giving him/us bad looks. It is always a struggle as a parent of a child with special needs, but when we are all together it is magical! It is normal and completely accepted. I'm grateful to be a part of such a special activity!

The boys were trying to feed the giraffe. I think they would have been able to, but when he got close enough Jayen freaked out and just threw the hay.

 

We love the train! Everyone was all smiles the entire round trip!

 

Cheesy, cookie filled smile! Love you Jayen. I hope you know how special you are.