How special of a last day.

I'm so thankful Jayen's teacher suggested a little get together with Jayen on his last day of school. I guess my mind was just a little too occupied to even put together anything like this. We came to school and had lunch with Jayen, even brought him his favorite Taco Bell! The class had a little going away party for him. After lunch we went back to the classroom to pack up and were met by some of our amazing friends form school. Jayen's teachers, nurse, and helpers put together these AMAZING baskets for us. There was one basket for Jayen to take to the hospital and another for Dalan and Brilyn to help at home. How amazing is that? They thought of our entire family. They were even sneaky enough to call our social worker from Minnesota to ask for some nearby food places and got gift cards for those places. I can't thank them all enough! We LOVE LOVE LOVE our Bellevue Elementary family. You don't know how truly awesome you all are. You are forever in our hearts and forever a part of our family!

Ms. Shank is even wearing our Jayen ribbon!

Ms. Shelby doesn't like taking pictures but we want to make sure we always remember her. Even is Jayen seems to think she doesn't exist anymore ;)

Jayen wanted to dig right in.

 

Everywhere I looked there was something else to see. The baskets were so full! I'm just so overwhelmed. This was so heartwarming. Thank you, thank you, thank you!!!

Proven wrong again and again! What a puzzle!

Of course as soon as I say anything or write anything about how good he is doing, he has to prove me wrong. Last night was back to being up 1000 times, waking up at 4 am and not wanting to go back to bed, then to top it off he decided to poop while standing up to pee. The poop thing was just the icing on the cake. (Even though it didn't look or smell nearly like icing!) Literally as I'm on the phone with his teacher, two minutes before the bus is to pick him up, he decided he has to go to the bathroom. I tried to have him sit but he wanted to stand. After he was done peeing he stood there and finished the rest of his business. I tried keeping my composure on the phone and continue the conversation while cleaning up his pants, legs, shoes that he decided to step in poop with, the toilet, myself, and keep Brilyn out of it all. Then the bus pulls up! What a great start to the day. I'm not sure I should be writing about his triumphs anymore!

He is like a million piece puzzle!

I've really started seeing Jayen as a million piece puzzle lately. Sometimes I find a piece that fits and other times I think I find a piece, make it fit, then realize it I just squeezed it into where I wanted it to go. We have so many hurdles to overcome in this journey. Some days I only see the hurdles in between me and the finish line. Those are my days of most frustration. Other days I feel like we make it over a few hurdles, but then the rest knock us down and we scrape every knee, elbow, shin, nose, knuckles, wrist, chin, forehead, shoulder, stomach, (yeah, some days we scrape EVERY body part!).

We have been struggling with Jayen getting out of bed at night. I was past the point of frustration with Jayen. I felt like a horrible mom every night because of the yelling that occurred after the literally hundredth time putting him in bed. I felt bad for Dalan who shares a room with Jayen. He is often kept awake. I struggle finding rewards and consequences for Jayen, he is interested in everything but nothing in particular. I knew candy would be an easy and somewhat exciting reward. I grabbed a Ziploc bag, permanent marker, napkin, dry erase marker, and a piece of candy. I told Jayen that if he got out of bed I would put an X in the box. If he had any boxes left when he woke up then he would get the candy. The first time was a fail, the second time was a fail, the third time was a fail, the fourth time was a fail, the fifth time was a fail, the sixth time was a fail, but I'm happy to report that after a couple weeks Jayen started getting the idea. Nap time is more of a struggle than night time, but I think we are starting to get somewhere. The last three nights he has earned his candy in the morning, two of them with no X's at all!!! I hope this is a true fit puzzle piece and not something I am making fit!

 

We have also been struggling with potty training with Jayen. He has got the pee part down. He is in underwear all day long but at night when he is in a pull-up he sometimes poops in the pull-up rather than the toilet. Quite a few times it is in the middle of the night and wakes him up, sometimes screaming. We have noticed his stomach often seems distended and his b.m. is very hard. We recently started miralax. I think I overdosed him the first time. After two days of the miralax we had, what Renee calls, soup poop! We backed off the dose, then during the kitchen remodel misplaced the miralax and stopped giving it to him. Once again his poop hardened and his stomach distended. We have gotten back on the medicine and have been waiting for things to kick in again. I started it at a slower pace. Today, when we were waiting for the bus, Jayen informed me he had to go to the bathroom. He went #2 in the toilet! I really hope that getting this issue under control will help with the potty training. I think he understands but can't always control it. Hopefully this will help with a few puzzle pieces. Maybe he will eat better because his stomach feels better, maybe he will stay in bed longer, maybe!

Mayhem strikes again!

Mornings are always so hard for me. Jayen's seizures usually occur first thing, so I am hovered over him until I know he is in the clear. When I finally feel he is ok then I can run to the bathroom and start getting ready for the day. Well, today Jayen proved once again that he needs CONSTANT supervision. He wanted a milk in his cereal just like big brother, but didn't want to ask for help. He went to the fridge, grabbed the milk, and poured himself, the table, and the floor some milk. It looked like spilt milk!!!!!

 

When I finally had it all cleaned up, Brilyn decided she wanted some too. She took Jayen's bowl and tried to drink out of it. Once again, it looked like spilt milk. Mornings are tough around here!

F R U S T R A T E D!!!!!!!

Jayen has earned himself the nickname Mayhem time and time again, but today took the cake! Mommy was ready to scream from the mountains, drink everything we have in the house, and ship the kids first class to Indiana. (Dalan's request. Not sure what is in Indiana.)
This weekend we had people over to celebrate Matt's graduation. After everyone left we noticed that someone had gotten into the fish food and fed the fish. They fed them enough food for an entire year. Today I took out all the water and rocks and cleaned the tank. I filled it back up, put the conditioner in and waited until it was the right temperature. This process literally took all morning. I finally put the fish back in shortly before Jayen got home from school. The kids played for a little bit then it was time to lay down for naps. Jayen was having a hard time sleeping, as ALWAYS, but when I went to lay him back down the 100th time I noticed the water was cloudy again. I went to look a little closer and once again I found enough food for the next two years. The entire bottle of fish food I bought yesterday was now in the bottom of the tank. I JUST put the fish back in there.

I am nonstop running after this kid and as I am cleaning up after the mess he just made, he is getting into something else. I can't ever keep up with him. I am so frustrated trying to get through the days. Some days I feel like I just have to keep going through the motions until it is over.

 

 

This is a picture Dalan brought home from school today. Made me cry! We have talked about the surgery and he understands as much as I want him to. Hope he understands why we have to leave again. Wish we didn't have to!

What a great role model!

Today was daddy's graduation from Bellevue University! We are all so proud of him. He is such a great role model. Great job daddy!

 

So thankful to have our Thursday nights back! Tacos anyone?

(inside joke, but if you want to join us some Thursday let us know!)

Unforgetable journey!

I won't say I got permission or even her blessing, but I did ok this with my mother first. Matt and I have talked about getting tattoos together for a long time, but never knew what to get. We finally came up with the perfect idea. We took the epilepsy awareness ribbon and turned it on its side to form the J in Jayen's name. We really wanted to get them before we left for surgery. We scheduled the appointment and scheduled the sitter and drove to the tattoo parlor.

 

 Mommy had to go first or she might have chickened out!

 

 

I wanted mine on my foot. I was told this and your ribs are the worst places to get a tattoo for pain. We both knew what Jayen was going to have to go through and decided it meant a little more for us to have to go through the pain too. I wish I could take all his pain away, but I konw that isn't possible.

Daddy went for the ribs. OUCH! He sat much better than mommy did.

 

I know someday soon the other two will ask where their names are and I have already come up with my response. "When you have brain surgery I will get your name tattooed on me."

Keeping Busy!

With all the things going on in our life right now we decided to add a little more. I was trying to find things to keep my mind busy and not focus on the upcoming surgery. I guess I bit off quite a bit. I have wanted to redo the kitchen cabinets for the past 10 years and FINALLY convinced my husband to do it. I'm so happy with the outcome!

 

Now I need to find another project. Surgery is quickly approaching and my mind is racing. Decided to do a little shopping therapy and came across this picture. Thought it was too perfect for our family. Jayen's crazy journey has taken us on this amazing roller coaster ride. Not only is he chaos, but this jouney is chaos. Always something. I am hoping and praying that surgery changes things for the better!

Unofficial water boy!

Matt and I have coined Jayen with the title "Unofficial Water Boy" for Dalan's basketball team. Matt's boss, Mark, is the coach for the team and is very supportive of Jayen being involved. This past weekend Dalan dressed Jayen in a purple shirt just like the team shirts. Jayen was so excited!!! During the game Jayen wanted to sit on the team bench instead of with his boring mom and dad! He did A M A Z I N G! He wanted to go in a play when the players switched out, but was reminded to sit back down and didn't put up much of a fight. I was so amazed and proud.

 

 

At practice today, Jayen was once again front and center. When I turned around to see what he was getting into, this is what I found him doing.

 

He was stretching with the team, doing exactly what they were doing. We had never showed him how to do this, he just did it. It was so cute. My heart grew a few sizes!

Thanks Coach Mark for allowing Jayen to be a part of the team. He enjoys every second of it!!!

As the days get closer, the nights get longer

I think my mind is finally figuring things out. I've been trying to keep it busy, but it's pretty smart. I've been questioning things lately and really starting to worry about whether we are making the right decision for Jayen. Are we really going to let them do this to our baby? Am I really going to let them cut open his skull and possibly his brain? My mind just keeps racing. I know we are going to go through with it, but is it really what is best? Praying this all goes well.

Note

 

I was very excited to get this note from Jayen's teacher today. Apparently she noticed! I've been very hesitant about this Ritalin stuff, but I do see a benefit. I hope this helps him more than it helps me! I just don't want to feel like we are ever doing anything to make it easier for us. We are supposed to do everything to make it easier for him!

Oh the changes you will see!

Got to see our favorite doctor today!!!! But couldn't have planned it any better. While we were in the room talking about Jayen, none other than the doctor from Minnesota called. Apparently the date they previously gave us did not work with all the doctors, so they needed to reschedule. I don't understand why I had to wait over a week for them to check with the doctors and give me a date only for them to call back a week later and tell me it didn't work. AHHHHH! At least it is a little earlier rather than later. We are now scheduled for surgery on February 12th. We will still have to be there two days earlier to do some labs and testing.
I'm glad we were in the room with Dr. Toth. He could see first hand the craziness of these doctors. I had everything lined up as far as where everyone was going to be, who they were going to be with, and how they were getting there. Now I have a lot more work to be doing.

We have also learned that the Air Force is allowing Matt to stay for the surgery. He was originally supposed to leave on Valentine's day and be gone for three months. They have allowed him to push back school until SEPTEMBER!!!! This will give Jayen enough time for a full recovery. However, this makes for a lot of changes for the rest of our family too. We are now supposed to be in Arizona by the end of January. We have tossed around the idea of the rest of us staying here until the end of the school year. Mommy isn't sure about this idea, three months without daddy at the end of this year and five months without daddy at the beginning of next year.

So many changes our heads are still spinning. I guess we just need to find something sturdy and hold on.

Not so drugged!

I think I am ok with how the ritalin is going. This weekend we met up with the Loftus' at the zoo. We wanted to all go to the Imax but weren't sure how it would go. Jayen and Brilyn are not good at sitting still for more than 10 seconds, so movies are usually not an option. The movie actually went great. Beyond great! Brilyn was in love with her NeNe and sat with Renee and Mallory the entire time. Jayen was so intrigued and sat through the entire movie. I think he even understood and liked the movie. That has never happened before. It was such an enjoyable day.
Things have been going pretty well since then too. I have noticed on seizure days that the ritalin seems to make him a little foggy. Not sure if ritalin and diastat are too much together. The other days seems to be going well. The therapists at PTC noticed his attention span was a little better and he wasn't as distracted. I'm excited to see what his teacher thinks on Monday.