Last Day of School

How did my baby complete an entire year of kindergarten already? What a crazy whirlwind of a year. So many ups and downs. So many tough moments. So many fights to make sure Jayen was getting everything he deserved. The fight for my son has gotten him another year of kindergarten. Another year to gain the skills he needs to succeed and build upon. 

Prima Ballerina Birthday

We are so thankful so many family and friends were around to be able to celebrate a little girls fourth birthday. Since moving here, birthdays have been much simpler events than we are used to; but not this one! All of our family that came to first communion were able to come to the party as well as our friends Kerri and Conor Thompson, and Laura, Tyler, and Brooklyn Smith. Brooklyn even came dressed for the occasion. Each of the guests were greeted with their very own tutu. We were even able to convince Nicholas, Brennan and Abigail to put one on and pose with Brilyn.  

Usually I plan the meal around the theme, but I wanted to make some foods that were more traditional for the area. We had carne ranchera, carnitas, and chicken tacos with more sides than we knew what to do with. There was also a candy bar and a three tiered cake. 

The kids (big and small) were kept busy with arts and crafts. 

But the fun had to come to an end. Daddy had to leave to take Uncle Marcus to the airport. We didn't want him to go, but knew he was coming back in a couple weeks so it made it a little easier to say goodbye. Safe travels Marcus!

I think we all had such an amazing day hanging out with all of our family and friends. The little princess was spoiled royally and I was rewarded with the laughs and time with everyone. I miss being home and having parties like this with all your loved ones around. I hope we can do it again soon!

Dalan's First Communion

Like most college kids, Matt and I really struggled with our religion after moving away from our parents. There wasn't anyone there kicking us out of bed for church on Sunday morning, there wasn't anyone reminding us when it was a holy day of obligation. But when we were trying to conceive and struggled we really decided to put our faith in focus. It really brought us together and made our marriage stronger. When we found out we were pregnant we really wanted our faith to be part of our child's life too. We loved our church in Bellevue. We felt like we could be part of the community but hide in the background if we wanted to. The children's ministry really focused on teaching the children God's will in a way they understood and could relate to. I was very excited with the path God was leading us on. Then our big move came and we were left with finding a new church. 

We really struggled! The church that was within closest proximity to our new house, was not warm and welcoming. It was an extremely large church. There was no sense of community. We felt like the only thing we got out of the church was our Sunday obligation. It was a very difficult transition. We found a couple other churches that were quite a drive from our house, but we were desperate and willing to drive to find somewhere we felt we could belong and grow in our faith. There was one church we thought was better than the others, but still not what we were looking for and quite a drive from our house. We somehow got roped into becoming members at the church closest to us but weren't happy. We also learned that the diocese here doesn't do first communion in second grade as we were used to. They do First Communion and Confirmation in third grade. I couldn't believe this. How could these be done together? Especially confirmation as such a young age. That wasn't what I wanted for my children. After struggling for months, we tried the church on base. We didn't have such a great experience with the church on base in Nebraska so it wasn't our first choice, but like I said, we were desperate. 

God truly answered our prayers that day. We are now members of Luke AFB Catholic Community and are loving it!!!! We truly feel a sense of community, friendship and worship. We can feel the love they have for our children. Even with Jayen, they have been extremely accepting and loving. 

Well the day I have been waiting for in my child's religious life has come. Dalan, as a second grader, has made his first communion. He is a child of God and growing in his faith. I love growing with him! 

Not only is today his first communion, but we are so lucky to have so many family and friends surrounding him. Grandma Kuchta and Allissa flew in on Wednesday night, Grandpa Kuchta and Uncle Marcus flew in yesterday, Tom & Tanya Kuchta family drove and arrived today and we were even surprised by Tyler and Sara. We were also joined by our friends the Mayberrys. So many people came to celebrate and pray for Dalan on his religious journey!

Ms. Loida is the director of children's services at Luke and is the sweetest woman I have ever met. She loves my children and loves seeing them grow in their faith!

Ms. Jeannine was one of Dalan's CCD teachers. She is always so excited to see him. I know she loves him and is excited to see him growing in his faith. She has even convinced him that sitting in the front is the way to go. She's invited him to sit with her at church from now on! 

Ms. Bina and Dalan have a special connection; She was the other CCD teacher this year, but forged an amazing friendship with Dalan due to their shared love of the Sea Hawks. The two of them could talk for hours about their football team. She loved all of Dalan's Sea Hawk inspired communion gifts; his tie, his rosary, matching family outfits. 

How amazing that his Godparents were both able to be here for this special day!

I can't wait to see that path God has for him. Dalan is such an amazing young man and I am truly blessed to be his mother. 

Kindergarten graduation

Although I know we will do it again next year, I was a little teary eyed to see my little man graduating! So many emotions running through me today. I always worry and wonder where he will end up in life. I worry about the friends he will make. I worry about the hallways he will have to walk through. I worry about people understanding him but loving him even if they can't. I worry, I worry, I worry.

Jayen has been through a lot this year and has still made some progress. He had some great friends and some wonderful teachers by his side. Ms. Kayli has been Jayen's para shortly after starting school in Arizona. She has one of the most amazing qualities that can't be taught and I'm forever grateful; she LOVES Jayen! She has seen him grow and make friends. I'm a little jealous of the interactions she gets to witness between him and his friends. Thankfully Ms. Kayli has agreed, once again, to move schools with Jayen. We are excited to have her back next year to help Jayen with the transition back to Sonoran Heights. 

Ms. Peggy Hess is Jayen's special education teacher. She keeps me on my toes as much as I keep her on hers. I think in another life we were drinking partners. She could roll with the punches and knew that I was always trying to do what was best for Jayen and I believed she did too. We will miss her next year. 

Mrs. Jillian Scott was Jayen's kindergarten teacher for a large portion of his school year. She came in got the ball rolling immediately. She is always so bubbly and wonderful with the kids. Since Kindergarten was half days this year, Mrs. Scott also taught at Sonoran Heights for the afternoon. She will be going back to full time Kindergarten at Sonoran Heights and we are crossing our fingers that Jayen can be in her class again next year! 

All of these ladies have contributed to Jayen's education this year and I'm thankful for them!

18 months seizure free

I've been waiting for this day for quite some time, but just as much as I was anticipating it I've been dreading it too. This is new territory for us. We've NEVER been seizure free for this long. So much excitement for the progress he is making. Without seizures Jayen has been able to grow and make tremendous progress. The fear of the next seizure is ALWAYS there, but it lessens with each passing day. I don't wake up from sleep and immediately run to his room to watch him wake. I don't stare at him without blinking for the first 20 minutes he is awake waiting for him to start rolling his eyes and slowly falling to the floor. I don't carry around his rescue medication waiting to pop the top off and insert where no man wants something inserted! Although I should keep it closer than I have been, I don't worry if we are late and I don't have one with me. I don't hover and protect him the same as I did previously. I let him run, fall, climb, jump and wrestle. I let him LIVE and be the kid he was meant to be.
The dread and fear comes from the progress. While we are making so much progress we are now to the point where we get to start weaning medications. That is scary. Extremely scary! Part of me knows that means I have to be on high alert again and I'm not ready for it. The last time we were a year seizure free and weaning meds we had to quickly bring them back and ended with brain surgery. Will this change start things over again? Will this bring on seizures again? Or will this help the fog that he is in? Will this give a little more light to the boy he is supposed to be?
We met with Dr. Jarrar and talked a little about the mood swings we are seeing and the attention issues. She ok'd all the medications Dr. Melmed/Dr. Jessani suggested but also wanted to increase his Lamictal slightly since it is a mood stabilizer. I like this idea! We will start weaning the gabapentin by one pill weekly until completely off. If things are going well we will start taking away another medication after that.
I know I will constantly live in fear of when the next seizure will strike. I will never be able to completely let my guard down. My son with always have epilepsy, but we are taking control of it and not allowing it to control our lives.

cooking the books

Last Friday our respite provider didn't show up and I couldn't get ahold of her. I was worried so I also called the company she works for to see if they could check on her. A couple hours later I received a text message from her stating she told me she wasn't coming that day and she thought she told me. I try to have flexibility with her so she will have it with me, but things had gotten a little out of control. On Monday the company called to see if she ever showed up. I informed them of her text message. The coordinator said she would have to send me the time sheet to fix since she turned in the time sheet and it said she had worked that day. I wasn't able to open the email on my phone, so when I got home I opened it on the computer. I was in shock, awe, disbelief, etc. I couldn't believe what I saw! Not only had she submitted for Friday when she didn't work, but she had submitted MULTIPLE days that she didn't work. I immediately called the coordinator back and informed her that we had more problems than just that one day. After explaining a couple days we weren't even home or I had text messages from her that could prove she asked for that day off or didn't show up, I was asked to look through all of her time sheets from the first day until the last. I was so completely appalled. After she gave me her time sheets to sign she was forging my initials and adding extra hours to the sheet. Now I have to go through time sheets since she started and see if they are correct. I can't remember what happened yesterday let along three months ago. I went through the time sheets and compared them to all of my text messages. I noticed she was careful and in the beginning she started by only adding an hour to her work day. Then the next two week time sheet had a couple days added; the next had a few more; but the last one she should have only written down 8.5 hours but she submitted 37 hours. Seriously people? What happened to dignity, honor, respect, or even self worth?
I'm not sure what will happen next. We will have to work to get those hours back for Jayen. A formal investigation has been started. I hope she learns from her mistakes!

boating

Not sure how we were fortunate enough to all get the day off today, but we will take it. We thought it was going to be a great day to take the boat out, but Mother Nature obviously had other plans. Matt worked on getting everything ready the night before so when we woke up we ate breakfast then headed to the lake. The last time we were here I got a boating ticket so I already wasn't too keen on the idea of going again but I knew it would make everyone else happy. I can't say that was the outcome of the day, but it was nice to use the boat we are paying to keep in storage. As soon as we got there we could see how choppy the water was. We were hoping we could find a inlet and the water would be a little smoother. It was very choppy but we took it slow enough and found a place to stop and fish. Daddy had to jump out on the shore and tie the anchors around a couple of trees so we wouldn't move, but it worked for a little while at least.

With not much luck catching anything, the kids quickly became impatient. We put the poles away and ate a little lunch. We were going to try a couple more spots to fish but the water was extremely choppy we decided to call it quits. As we were trying to make our way back to the doc the wind started to take our sun shade. I had to drive as Matt took down the shade. I didn't feel comfortable driving trying to steer away from the rocks, trees, and mountains in the water. I quickly gave the wheel back to Matt and found myself holding on for dear life!

What was supposed to be a nice relaxing day on the lake turned out to be nothing of the sorts. I can't wait to be back in Nebraska and have our nice boating lakes back!

Last buddy baseball game

Such a bittersweet day! We love our Thursday and Saturday evenings and the friends we get to share it with. Baseball nights are something we look forward to. Tonight being the last night on this season makes it so bittersweet; the chaos of being the coach, assistant coach, announcer, batting order coordinator and so much more but the memories and amazing time we shared were worth all of the chaos.

Since Matt's schedule changed at work he wasn't able to be there for the majority of the game. Mom had to fill in for all the positions and was a bit overwhelmed. But honestly I would do it again in a heartbeat. Every smile, every high five, every hug, every cheering family member makes every bit of this worthwhile. So as this season ends we will sit down and put our feet up and relax for a short time. A very short time, because bowling starts soon and baseball is always around the corner.

transition meeting

Since we had a meeting before the meeting, I felt like I didn't have to prepare as much for this one. I didn't feel like I was going to have to go to war, but I was still wanting supporting documents incase I needed them. I'm so nervous for next year but I have no clue what is in his best interest, other than moving back to Nebraska! I'm excited about the opportunity to have the boys go to the same school again, I'm excited for the growth we will hopefully see with another year of kindergarten and full day schooling, but I'm nervous. I'm nervous about a new school building for him. I'm nervous about all new friends and teachers. I'm so nervous for this LEVEL C! What I'm being told is that he will only be pulled for math, reading, and writing but will be with his class for calendar, recess and as much as possible. I know as a teacher how much juggling and finagling his schedule and other's schedules this will take. I'm nervous about how much time I will be able to be in the classroom to make sure he is getting what he actually needs.
Of course, there were quite a few people at the meeting. There was an extra district representative as well as the school psychologist and principal from Sonoran Heights. There was one question I really wanted to ask but for some reason it just didn't feel like the right time to ask. Jayen's teacher seemed slightly annoyed or upset about having to be at the meeting. I'm hoping she just had other things on her mind. I really wanted to ask the principal and Mrs. Scott if Jayen could be in her class next year. It is such a unique situation that his current teacher will be moving schools the same year he is. Since she has prior knowledge of him and knows him better than any other teacher, she would be able to work with his schedule a little more than others. Since he will be out of the classroom for his core subjects it will be harder for another teacher to get to know him the way she does or would with her other students. Mrs. Scott, however, sat beside me with arms crossed and leaning on the back of her chair. She didn't seem like she was in the mood for anything. Especially not asking for her compassion for my son. I let the subject go and was hoping to email Mr. Frasier another time.
The final decisions were that Jayen will be able to repeat Kindergarten again next year at Sonoran Heights. Compensatory services were also offered; Jayen has been offered full Kindergarten for the rest of the school year. We also discussed extended school year services and have agreed Jayen will participate. The meeting went well. I'm excited for what next year will bring for him.

Meatoplasty

Today is surgery day. I didn't sleep well last night. I had to send Brilyn off for her first sleepover since we had to be at the hospital by 6AM so not having her home made me a little uneasy. I also was worried about leaving Dalan at home until he was dressed and ready for school. He was going to have to be responsible to wake up and walk over to the neighbors house once he was ready. Ok, I really didn't worry about him too much, more so for the neighbors since I know he will continuously ask what time it is to make sure he is not late for school. I was also extremely nervous about Jayen going under general anesthesia again. He has done fine every time but I still worry. Nothing scares me more than seeing him go from a screaming fit to lifeless and unconscious.

We had to be at the surgery center by 6:00AM but we weren't scheduled for surgery until 7:00AM. It was a long wait in a crowded room but we eventually were able to go back. He knew the drill right away. He took of his shoes and stood on the scale then immediately turned around and put his feet against the wall to get his height. Yep, done that before! After saying hello to all the doctors and going over the procedure and follow-up they were ready for him. I was a little upset but also relieved that we didn't help put the mask on him; he didn't have to see us be part of the group that was going to hurt him.

Less than 30 minutes later the doctor came out to the waiting room to get us and said everything went well. Jayen was in recovery and we could go back to see him. A nurse called us over and we followed her to his bed. He was still out of it. The nurse seemed like she was in a bit of a hurry to get him out of there. They were wheeling patients into the recovery room in a continuous stream.

I was trying to enjoy the quiet, calm, still child of mine when the anesthesiologist came in with another patient and looked at Jayen and asked why he was still here. It was seriously only 5 minutes since he got out of surgery. Jayen opened his eyes enough to allow us to help him eat a popsicle. He was only slightly conscious but ate enough that the nurse was ready to send us away. She asked if we wanted to carry him or if he wanted a wheelchair. I opted for the wheelchair because I knew Jayen would love it. The nurse sent Matt out to go get the car but just after he walked out she got another patient. She was no longer able to help walk us out. I had to carry my purse, a water bottle, Jayen's clothes that he wore when we arrived, his new stuffed animal, the new prescriptions, and Jayen out to the car. He was so lifeless and heavy. I was a little upset that they not only sent me out with all of this stuff but that they sent him out nearly still sedated.

Since we were up so early and all the way on the other side of town, I was able to convince the boys to make a quick stop at Panera and pick up some bagels and cream cheese for breakfast! Even with this stop and the 30 minute drive from the hospital we were home before 8AM. That is how quickly they pushed us out the door! Once home we were able to get about half of a bagel in him and let him walk around for a little bit. He was still slightly out of it. Dad went to go fill his prescription so mom got some good alone time with him. We snuggled on the couch and Jayen eventually went back to sleep. I don't know the last time I was able to snuggle with this little man. We didn't move off of the couch until sister got home from school at 11:45.

Jayen played with Brilyn for a little while before it was time for her to lay down for her nap. Since she was laying down we decided to lay down on the couch again. Jayen was out cold and didn't move until nearly 5PM. My arm fell asleep and the tingling started to hurt otherwise he could have probably slept for even longer.

I don't want him to have to go through this again, but I would give anything to have another snuggle day with him. He is growing too fast and I'm loosing my baby by the second. Days like this remind me to hold on to him a little tighter.