Giddy Jayen

Happy Halloween! Jayen celebrated so much today. He had a party at school and loved making bat hats, then eating his cupcake. Anything that involves frosting is perfect in Jayen's book.

 

After school we kept getting ready for Jayen's birthday party tomorrow. Jayen loved helping with the frosting again! I was trying to have everything ready before our surprise guest arrived. We quickly finished up what we could and headed over to our friend, the Fallon's, house. We were invited to the neighborhood get together before trick or treating started then were able to join them around the neighborhood. I'm so thankful Bill and Christine were willing to put up with the chaos that always follows us. Bill's long arms, legs, and quick response probably saved Jayen's life after running across the road in front of a car. He was very excited to be trick or treating. He was also super excited when he realized we stopped at Ms. Shelby's house!

 

We had perfect timing as we rounded the corner to head back to the house. We were supposed to be at our "Halloween party" at the airport by 8:45. The kids still had no idea what was about to happen. After Jayen nearly got us arrested, daddy called them. While he was on the phone with them, he sauntered near. Jayen was amazingly excited. I have never heard him giggle the way he did. He wanted to tell dad all about the airplane he saw, but was excited dad was even there. 

 

We had an amazing Halloween filled day. Can't wait to spend the weekend with daddy!

PTC Halloween and more showings!

Oh what a night! I'm so sad to realize that the more we do, the more we realize it is our last time doing it. PTC has been instrumental in Jayen's progress. We would not be where we are without them. The gym at PTC is reserved only for clients. Dalan and Brilyn often wish they could go back with Jayen, but are not allowed; except for one day a year! Every year they put on a Halloween party for all the kids. We love this. Their activities are Halloween themed but still very therapeutic. The kids had the most amazing time!

 

We had another showing tonight, so after the PTC party we went out to eat. I convinced the kids the we could try something a little fancier than McDonald's. We settled on Qdoba. (Yeah, a little bit fancier) When we got to the establishment and I sat the kids near the pop machine thinking that if I had to get refills that I could leave the kids at the table and still see them. Well this was apparently a HUGE mistake. Jayen immediately freaked out an insisted he get a pop immediately. I tried reasoning with my screaming child but it wasn't working. I finally picked him up and took him to the line to order. I was sweating trying to keep him under control and order at the same time. The place was at least mostly empty! While we were ordering Brilyn came running across the place screaming at the top of her lungs. Then shortly after that Dalan walked a few steps toward me and screamed that Brilyn just peed her pants. Of course! What else could go wrong. The employee saw I was frustrated and offered to help carry our food to the table. I quickly tried to clean up the pee on the floor and get Jayen a drink so he would calm down. After everyone was somewhat settled, I took one bite and Jayen stated he had to pee. Thankfully Dalan was willing to chaperone him to the bathroom. I always worry when I'm not with them. They were taking longer than needed so I went to the door and knocked. Dalan opened and said Jayen flooded the toilet and was adding more paper. I yelled at him and watched him wash his hands. We got back to the table and I was able to take one more bite before someone needed something else and the fighting over meals began. AHHHH! As I was refilling a drink a couple gave me a pity look. I responded that my husband was deployed, our house was on the market, and we couldn't go home for two more hours. The man said I should tell my husband thanks for his service. I looked at him and said, "If I get a chance to talk to my husband tonight, I probably won't be telling him thanks for his service." The man was taken back, but the wife started laughing. Probably not the right thing to say. I did eventually tell him thanks and I would mention it to my husband. After one more bite, Jayen inevitably had to poop now. I refused to let him go because of the last incident. Of course, that backfired on me too. He ended up pooping his pants. The night was a complete disaster. We packed up and headed towards the house. I figured having the kids strapped in the car keeps them from destroying anything else, and being closer to home gave us the chance to get into the house as soon as they leave. Can't wait for this day to be over. Can't wait for this house selling stuff to be over. Can't wait for this deployment to be over! 

What to do during showings!

Well, since getting the official word that we are moving, we have put the house on the market. (I should stop saying we since this is all on my shoulders!) I never knew what to expect in this process. I was hopeful that people would like our house, but knew how slow the market would be right now. The house went on the market last Friday. Two days later we had showings scheduled. We knew there was one at 11. We had the house perfect, or as perfect as it was going to get, before we left for church. After church we met up with Jay and Abby to see their new house. We played for a little bit then I promised the kids we could eat at McDonald's. While we were eating I got a request for another showing at 1. Each showing is scheduled for an hour, so now we couldn't go home until 2. Oh boy this is going to be fun! We wasted as much time as we could as McDonald's and I was NOT going to take three kids to ANY store sans naps! We ended up heading back toward the house and played at the park. We were able to see when they left and head home right away. This was an interesting experience and I can wait until the next one.

 

How much?

I talked to Carol from Dr. Frost's office today about the MSI we are hoping to get Jayen. She was given the numbers and the out of pocket cost for the procedure would be over $15,000. YES, that has three zeros! This just isn't feasible for my family. If this is what we need for Jayen's next surgery then what are we supposed to do? Carol is supposed to call me tomorrow so we will see what the plan is.

I can't remeber the last time we were here!

I am holding my breath while writing this because I don't know how much longer it will last; Jayen is two weeks seizure free! We started a new medicine a couple weeks ago so this honeymoon might be short lived, but it is enjoyable while it lasts!

But the good news is short lived! Today I finally received the call about our move. We will officially be residents of Arizona in January. I'm so sad to leave everything and everyone we have here in Nebraska. This will forever be our home!

Appropriate

Today my son hurt himself and all I could do was fall to the ground laughing! I know, not an appropriate response. But the reason for the laughter was because of his appropriate response. As always, Jayen and Brilyn were fighting over the same toy in the backyard. Brilyn was telling Jayen to sit on the motorcycle. I was trying to show Jayen she meant the four wheeler and lightly kicked it with my foot. Jayen came over and also tried kicking the four wheeler, but his sandals did not provide enough protection for his foot. He loudly cried, "OUCH!" and dramatically fell to the ground. I laughed so hard! His response was so appropriate! This is a huge milestone! Jayen doesn't normally have appropriate response. He has an amazingly high pain tolerance. His reaction was just too perfect, I couldn't help but be amazed, excited, overjoyed that he is finally doing something appropriate!

Pictures don't do it justice

This is one of the best examples of why Jayen still needs physical therapy. I should forward it on to United Healthcare! Jayen was running down the hallway and tripped over his own feet, stepped on the wall, fell forward into the door jam and cracked his head. He was convinced to put an ice pack on it and held it there voluntarily for about five minutes. I called him my little avatar; it was all blue and huge! Tough little man!

Quick hands, quick feet, gotta eat somewhere!

You'd think I never fed this kid, EVER! Tonight we went to Vala's with Tom, Tanya, Madison, Hunter, Morgan, and Brooklyn. They came down for the weekend to see us and visit the pumpkin patch. We were having so much fun! After a few hours at the farm it was time to start thinking about getting something to eat. But Jayen had apparently been thinking about it much longer than the rest of us. On our way to the barn, I asked if we could stop to get nachos. The loaded nachos are amazing! I waited in line while everyone else went to find a table to sit at. My brother Tom found a table that was being used by a couple and their little girl but the other half of the table was free. He asked if they could join them. Little did they know to Jayen this meant so much more! Jayen sat down beside them and no sooner could Tom turn around and get one of the little girls out of the stroller and Jayen was stealing French fries right out of the tray of the little girl they just sat beside. Tom apologized and the mother politely replied it was ok, she was done eating. And again, Jayen took this as another signal to devour every last French fry in the tray, then move on to her chicken tenders too. When the other kids saw what Jayen was eating they swarmed quicker than pigeons on a boardwalk and within seconds had the little girls food annihilated. When I got to the table with the nachos I was mortified to learn where the chicken tenders and french-fries had come from; a total stranger! Tom and Tanya both agreed how hard it would be to do the Ketogenic diet with Jayen. He literally would eat the food out of someone's hand if he wanted it.

WORRIED 24/7

This morning Jayen slept in! And while most of you will think that is such a blessing, I can't being to tell you how much of a curse it is. Typically when Jayen sleeps in, it means his brain is revving up for a seizure. I do everything I can not to move or wake him. I sleep in one position until the tingling is unbearable, I hold my bladder until the very second I think I'm going to explode, I beg the other kids to go out and be quiet, I pray until he wakes and I know we are in the clear.

 

 

This morning the prayers must have worked. I do think we are in for a big seizure soon. I feel his demeanor is changing and he is slower to react or show emotions to certain activities. I often wonder if these changes are prescription induced. We just started a new medication on Wednesday and are still trying to figure out the side effects for Jayen. How long with this honeymoon last? Will we get a week seizure free? What's the next step in this journey? After bombarding Minnesota with calls last week I have a little more faith that we are actually heading somewhere. The doctor's do believe that Jayen's seizures are coming from the right again. This means they are seriously considering surgery again. I think this time we are hoping for a laser ablation rather than a craniotomy. When I have more answers I will share. For now, I will continue to worry that every time he sleeps he will wake and have another horrible seizure; a dream we just can't seem to wake up from.

Sharing Vala's

I think by now everyone knows how much we love Vala's Pumpkin Patch. We have been telling everyone we come in contact with that they need to check it out. Well, we convinced our respite provider Ms. Rashelle to join us and even asked her to bring her hubby. I might have had a little alterative motive on that one. I thought it would be great to have the same number of adult hands as kid hands and I wanted her husband to see who she was spending her time with when she wasn't home in the evenings. I never expected to enjoy their company as much as I did.  I think the big and little kids had the best time. Mr. Andrew was so great with the kids. They are amazing people and I'm so thankful they came into our lives. Thanks so much for what you do for our family Rashelle! You have been a godsend. Let us know whenever you wan to come over. (and if Mr. Andrew wants to come too he is more than welcome! I would love to get our hubbies together too.)

 



Thinking and Reflecting

I've been so busy lately wearing so many "hats" that I feel I don't get the time to reflect on everything going on with Jayen. Like the rest of our life right now I have no idea which way is up anymore. Jayen was supposed to be presented at surgical conference for a couple weeks now, but every time I call he either wasn't presented or they are still discussing him. We are still having seizures every three to five days. (And yes I say we because these things affect all of us) Our last conversation with the nurse we were told Dr. Dunn and Dr. Frost are comparing notes. She kept sharing that she feels that is even better than surgical conference but she can't tell me if they are done comparing, if they have figured anything out, or when I will know more. There isn't an end date in sight! Life is in such limbo right now. How are we going to make my baby better?
Last night I learned that Matt's first cousin died. He had a few medical issues but seizures was one of them. When I was talking to Matt the thought crossed my mind but came out of Matt's mouth first; could this be Jayen's fate. Could seizures cause the death of my baby? We need to get things figure out with him. We need to be on a better path. We need to help him!

Fontenelle Forest Fied Trip

They fight like siblings but are the best of friends. This is how I found these two last night. I know she is lost without him. Almost daily she asks me where Jayen is; then we go through the list of where all of our family members are. I love my time alone with her, but I think she loves her time with him even more.

 



So today when Jayen was scheduled to have a field trip today, we decided to join him. He was very excited to see his sister and she was just as excited to see him. They held hands when they walked in line, sat beside each other during the presentation, and gave the biggest hugs when it was time to go. We love being involved in his schooling but have just not had the time this year. It really saddens me. I hope life slows down around here!