One and half years

I was thinking today about Brilyn turning 18 months soon and realized that meant that Jayen has also been seizing for 18 months. I can't believe we have been on this roller coaster for nearly 4 years, but I really can't believe we have been unable to stop them for a year and a half! I have so many questions about Jayen's future and outcome in life. I'm so scared! Please Lord, take these things away, make my baby healthy!

Busy Monday

Bright and early this morning we were scheduled for 3 well checks. I knew Dalan was going to be very upset with me if I had to take him out of school for a doctor's appointment. My only other option then was to schedule them before school. Our first appointment was at 7AM. Jayen had some other plans though. I had to wake him around 6:30 so he had time to get ready, but I knew before I woke him that it wasn't going to be pretty. Jayen had a seizure. This one was a little scarier for me. We were very close to, if not right at 10 minutes. I was getting ready to pull out the second diastat and call 911 when he started to come out of it. I had to let him sleep of this massive seizure but had to get the other kids to their appointment. Thankfully daddy was home today. Daddy stayed with Jayen and let him sleep while mommy took the other two to the doc. When Jayen woke, they joined us. We had a special surprise for Dr. Toth. A "little birdie" told us some of his favorites, so we made him a special surprise.  I think he loved it!

 

 

After the appointments the boys went off the school and mommy and daddy ran some errands. Jayen had a hard time going into school. I'm not sure if it was just because it wasn't our normal routine or because he was upset about leaving dad again. He was very attached to him from the moment he got home. I think he might have been a little scared that he was going to leave again.

After school mommy had to run some more errands and wanted to show everyone the new outlet mall in Gretna. It was pretty neat! The boys were such good shoppers (very sarcastic!) we had to entertain them with a pretzel and slushie. The boys couldn't wait long enough for one to get done, they had to share at the exact same time. I think they were too worried the other one was going to drink more. They both got ice cream headaches!

 

I love spending time with my family! Glad we get times like these!

A different kind of play

We were invited to a friend's house today for a party. It was so nice to get out of the house and let them play after being in the house with them by myself for over a week. The boys were so excited to see some old friends. They immediately ran off when they saw their friends. But quickly Jayen was being left out. I kept seeing the other kids continually pushing him to the side and telling him not to play with things. He was getting upset with them and acting out. I felt like I couldn't leave them alone. I sat downstairs with the kids and felt a little left out of the adult conversations. Any second I tried to leave Jayen alone, I was approached with another child telling me what Jayen did wrong. I know he is no angel!!!!! I promise I know that, but I felt very discouraged by the other kids including my own. Dalan knew better. He knows how to get Jayen to do things and to play what they are playing. I reminded him that he isn't allowed to disclude Jayen. Jayen didn't seem to notice or care too much, but it really hurt me. I am really starting to notice how he plays and how it is so different than his peers. Will he ever have friends? Will they ever understand HIM? Sad mommy moment # bagillion!

Finally a time and a place

We were finally given the go ahead to schedule Jayen's PET scan in Minnesota. For over a week we tried to find somewhere locally that had all the components of the test we were looking for. With no luck, we decided it would be best to just go back to Minnesota. Jayen is scheduled for a follow-up office visit with Dr. Frost on Wednesday, December 4th and a PET scan with EEG and sedation on Thursday, December 5th. Glad we can finally get things going.

4th Birthday Party!!!

 We got all of our stuff done before everyone came to the cabin for the party so we snuck in a nature walk around the park. I think this was heaven for the boys. I love seeing daddy teach them about all the deer tracks and things they found on the walk.

We greated the guests with tattoos, spider rings and spider poppers.

 

spider deviled eggs

 

spider web cupcakes

 

spider cake

and there was even spider pasta salad ;) Yes mommy goes a little overboard on the themes!

Jayen was in heaven the entire weekend. I am so happy we were able to do this. I know how much he has gone through and will go through. Birthdays mean so much more for him.

Brilyn discovered peek a boo in the cabinets. She played with anyone that walked by.

 

Presents!!!

I attempted to make a pinata but failed so it became a kick ball with candy inside. Oh well, it worked!

After the party we went to the activity center! There were smiles on everyone's face from beginning to end. Even Uncle Marcus joined in on the fun. He had to take a break after a while though!

 

What a perfect day! I think Jayen enjoyed every minute of it! I love you to the moon and back honey. I hope you know how loved you are!

 

Mahoney State Park

Except for his first birthday, we have had all of Jayen's birthday parties at Vala's Pumpkin Patch. This year we decided to do something a little different. We rented a cabin at Mahoney State Park. We had to rent it for Friday and Saturday since they have a two night minimum. This gave our family a chance to enjoy the cabin before everyone else arrived. It also gave mommy the chance to decorate and get everything done the night before.

Daddy really enjoyed having a fireplace and showing his manly skills. He was in charge of keeping the fire going all weekend!

A few streamers in the shapre of a spider web.

I think the kids enjoyed the fireplace too!

Mommy had some extra time to work on the cake and cupcakes! I think I am getting better at this cake making thing. What started as a way to save money on birthday parties has turned into a little passion of mine! Wish I had time to take some classes!!!

 

We decided to let Jayen open the gifts from our family the night before the party.

And it kept the kids busy for a little bit so we could get some more stuff done.

 

So glad we got this evening to enjoy as a family. Wish we could live here, but daddy said they would have to give us a crazy good discount!!!

Waiting game, as always!

After calling the admissions lady in Minnesota to see what I could do to help the process along so we could get a date for the PET scan, I was informed that Jayen will actually be presented at the surgical conference this week. I was a little upset that no one had called me to tell me this information. Now I was supposed to wait for the surgical conference again then figure out what they want to do for testing. Well, I was supposed to get a call around 9 today. As I figured, I left three messages and haven't received any return calls. I'm not good at waiting. I just want to know what is going to happen. What are the options? What is our next step? PLEASE just give this worrying mom a call back!

Happy Happy Birthday to the craziest, strongest, silliest, mayhem I know!

Mommy and daddy got Jayen a spiderman shirt for his birthday!

I picked him up from school with balloons!

 

We went bowling this evening, but mommy forgot the camera. Daddy took some pictures and video on his phone.

 

 Jayen had so much fun. He was watching his ball roll down and knock the pins over then would raise his hands and cheer. He was so excited!

After the cake fiasco at Walmart, mommy tried to pull something together quickly. This is all I could do in such a short amount of time. It is supposed to be spiderman but the eyes didn't turn out so it is just a spider web!

Everyone seemed to love it though! I guess as long as it tastes good it doesn't matter what it looks like! I hope you had a great birthday honey! I love you so much!!!

Husker Heroes

Tonight was the Husker Heroes event in Lincoln. I was really worried about how this was going to go since it didn't start until 7 and day light savings time ended today. We gained an hour of sleep, but that means the kids woke up their normal time and went to bed an hour later than normal. But amazingly it went well. I packed pjs so they could fall asleep in the car. The event was amazing. I think our family would do anything Husker related anyday.

 

The boys were in awe from the moment we walked in the door!

We started with Husker tattoos!

Brilyn found her kind! She gravitated towards the cheerleaders.

Then they gravitated towards her.

Eventually she got what she wanted.

Then tried taking off with them! She loved the poms!!!!

The boys were in heaven with the obsticle course and sports activities.

Our favorite part, meeting Herbie and Lil' Red.

Wish we would have hired a professional photographer. I would have loved a good family pic, but I guess you get what you pay for ;) I just handed the camera off to one of the cheerleaders. Next time I'll find someone who is holding a good camera.

We made it home and have so many new memories. What a great event! Thanks Huskers!!!!

First Do No Harm

Tonight I made Matt sit down with me and finally watch the movie "First Do No Harm". The movie is about a boy with epilepsy and how his mom defies the doctors and takes him off all medications and tries the ketogenic diet. She spent countless hours in the library researching and finding information that the doctors weren't even giving her. She tried to steal her son out of the hospital, booked him on a flight, but got caught and could have gone to jail. She was willing to do anything for her son and what she believed would be best for him. I only hope I can be half and brave as that mom. I pray that I am always making the best decisions for Jayen. I vow to always First Do No Harm!

Goodbye Sarah

We had to say goodbye to our FAVORITE services coordinator ever. Sarah Kathol has been with us since diagnosis. She has been my go to person for everything school/medicaid related, but now that we are in the big school she can't be with us anymore. I'm going to be so lost without her. Good thing I know her number and can contact her husband. He is actually the one who helped me know what to put in her goodbye gift. And some help from some amazing friends who tried to get some info from him without Sarah knowing. (Michelle Joslin you are a lifesaver!) I hope she loved the gift, but more so I hope she stays in touch! You have been an amazing resource and shoulder for me to lean on. I'm so thankful for your help through this journey we are on. My family loves and appreciates everything you have done for us!