What? Disconnect somewhere!

I figured I'd give Minnesota Epilepsy Group a few days to get Jayen scheduled for his visit the first week in August. When I talked to Mary in admissions today, she didn't know anything about it. No one told her, she was looking through his file and couldn't find anything, then looked at the notes from our appointment with Dr. Frost and saw that it was noted but no one mentioned anything to her. So we just lost a weeks time in scheduling and getting referrals done. I was still confident it would go through, but was extremely disappointed I had to be the one to notify her of our admission. Well appaarenty Dr. Frost is booked SOLID that week and she had to get permission from Dr. Frost to add any more to the schedule. Oh boy, here we go. Bring it on. This has to work! The kids go back to school the following week, Matt leaves in five more weeks, and this is really the only possible time I can get someone to watch Brilyn and Dalan. Praying things work themselves out!

7 hour dive means 7 hours to think about things

I don't know where to let my mind go with things. This feels similar to Jayen's infantile spasms diagnosis. The research had nothing but grim and devastating outcomes. So seems to be the case for this FOXG1 mutation.
I just want someone to sit me down and tell me what his life is going to be like. Will my baby ever be able to live independently? Will he be able to drive? Will he have kids of his own? What is his life expectancy now? This is all just too much to take right now. Life is spinning out of control. Daddy is leaving, we are selling our HOME, moving to an area we know nothing about, no house to move in to, new doctors we have to find, meet, and get up to speed, and so much more. Someone please put the rug back under my feet.

Mall of America Aquarium

Our friends at the playzone were so generous and gave us tickets for the aquarium. We had never been to the aquarium at the mall so this was a nice surprise! It helped take our mind off of things again.

We wear purple for Jayen! Family jaws picture.

Scary faces!

An answer with a million more questions

I feel like this title has been used before, but we were literally given an answer with a million more questions. Today we met with Dr. Mendelsohn from genetics, Dr. Kebriaei from neurosurgery, and Dr. Frost from epilepsy. Busy busy day!
Dr. Mendelsohn presented us with Jayen's genetic screening results. Jayen has a mutation on his FOXG1 gene. This mutation is very rare and currently affecting approximately 100 people WORLDWIDE! Jayen's mutation is even more rare! The mutation typically occurs in the front portion of the gene, but Jayen's occurs near the end. Which was explained that could be a good thing. Jayen is far more advanced in his development then other FOXG1 kids. FOXG1-related disorders are associated with severe intellectual disability, absent speech with autistic features, and epilepsy. Most kids with this diagnosis can't sit independently, don't walk, and have feeding tubes. Jayen is doing well for his diagnosis. I'm not sure what this all means for Jayen, and at this time I'm simply wrapping my head around everything the doctors have told us. No time to think or really ask any questions because it is on to the next appointment.
Dr. Kebriaei apparently didn't have a whole lot to say. He was in and out of the room in a matter of seconds. We were able to say hello to Dr. Dunn too. We gave both of them our Jayen tattoos! They said to talk to Dr. Frost this afternoon and they will work out a plan with him. Ok, Done!

 

On our way to lunch we snuck up to the epilepsy floor to say hello to our nurse friends. We just happened to be there the same time as one of our favorite nurses. Ms. Tina was working! We were so excited to give her a tattoo since she was one of the first people to put one on Jayen when we were here. She made sure to make being in the hospital fun! Thanks Tina!!

 

Dr. Frost was puzzled by Jayen as well. He asked if we were up for another EEG and repeating the MRI. Of course, we felt like that was a great idea but weren't sure how the timing of everything was going to work out. Daddy leaves in 6 weeks. The first week in August is when Dr. Frost is on, so we will be back up in a couple weeks. We just have to wait for Mary to call us back with the details now. In the meantime, we are increasing the gabapentin. Hopefully this will give Jayen a little relief from these long seizures!

Minnesota bound

On our way to Minnesota again! We have three follow-up appointments tomorrow; genetics, neurosurgery, and epilepsy. Tonight we get to see Matt's Aunt Darlene. Darlene was diagnosed with cancer and is fighting very hard. The cancer has got the best of her right now and she hasn't been given a very good prognosis. She isn't done fighting though! We are so excited we will be so close that we can spend some time with her while here. Hope we don't catch or leave any bugs with her. Wash, wash, wash our hands!
This will hopefully help keep my mind off of the appointments for tomorrow too! Mommy is super nervous about the genetics appointment. I'm sure the kids will keep me busy!

Fun, Fishing, and Fair

PaPa cooked us an amazing lunch today, let us take naps, then took us to the best fishing hole ever. The kids often get bored when fishing, but PaPa's fishing hole took care of that problem! There were so many hungry fish. Every time we put the hook back in the water someone was ready to take another off. Dalan caught 40 fish in about an hour and a half and overcame his fear of putting his finger in the fish's mouth to hold it. Brilyn had no problem sticking her finger in the fish's mouth and letting it hold on to her! Jayen was a little less excited about holding on to it.

 

 

After fishing we met up with Tom and Tanya and family at the Cedar County Fair. We were excited to ride the rides. Jayen would not get off the tractors! I loved his smile and how he fits in with everyone. He is no different than anyone else. He smiles and laughs, and gets upset when the rides are over and has to go home.

 

So glad we were able to share a big part of our childhood with the kids. Not sure when we will be back, but someday we will be.

Daddy chose the station so we chose Bonanza!

Daddy and Dalan were helping Grandpa Hochstein all day today. We called them and asked if they wanted to join us for church. They were too dirty and busy to stop, so we went without them. After church we stopped to ask if they were almost done and they told us they would eat at the station and finish things up. Well, Grandma Kuchta suggested we go out to eat too. Our favorite restaurant , Bonanza, is located 30 minutes from my parents house. There isn't one close to us so we only get it when we are home. We were giggling that daddy chose to stay there and we got to eat here. Jayen was excited for the ice cream! Next time I think they will ask more questions and try to be done before dinner time! Win Win in my book!

 

Big Family Picture Time

For Christmas this year we gave Grandma and Grandpa a gift certificate to have our entire family photographed by Cassidy Goeden. I love her pictures! She has done a lot of friends here in the Omaha area as well as friends in Northeast Nebraska.

I was worried about Jayen driving in the car for that long then having to sit still for pictures. We had to have quite a few distractions but I think things went pretty well. End result was amazing! Thanks Cassidy Goeden Photography!

 

Last day at camp!

We had to be out of the campsite by three, but figured we had enough time to take the boat out in the morning and still get back to finish packing up. I'm so glad we did! The lake was so calm this morning and their were not a lot of other boats out that early. We thought it was the perfect time to get the kids on the tube. We were joking around that it was calm enough the even Brilyn could tube. The joke quickly turned it to trying to see how much she could handle. We first set her in the tube, they pushed it away from the boat 5 feet, then 10 feet, then 15 feet, then 20 feet. She didn't seem scared at all and was even smiling. So we started the boat; still smiling. So we drove the boat; still smiling!!!! Our little girl just had her first tube ride and loved every second of it. Every time I asked if she was all done she responded, "More!"

 

 

Jayen, of course, could not be showed up! He took his tubing to the next level. He was so calm and relaxed. I couldn't stop laughing every time he took his hands off the handles and just "chilled" in the tube. I love that we have such water babies. 

 

This was such a wonderful family weekend! I hope we can do it at least once more before daddy leaves. Only 7 weeks left with him :'(

Camping and Baseball

When we scheduled our camping trip we had no idea that baseball would be rescheduled for three weeks in a row. We arrived at the campsite Friday night, set up shop, and then got to play before heading to bed. We obviously didn't wear the kids out enough because no one wanted to sleep. It was a very late night with lots of reminders to stay in bed! Our friends, the Hayek's, were camping with us but had the same problems in their tent. They ended up having to leave because the kids just wouldn't settle. After finally closing their eyes for a few hours, the kids woke up at their normal time ready for the day. The boys found a way to keep busy while mom was making breakfast. I can't believe how well Jayen is doing on his bike. Daddy thinks he is almost ready to try it without the training wheels. Mommy is scared more of the attention span than the balance and coordination.

 

 

After breakfast we had to get ready for our last baseball game of the season! We are so sad to see the season come to an end. Daddy has been such a wonderful coach, Dalan an amazing helper, and Jayen a spectacular ball player (when he is actually on the field!).

 

Sister was tired of sitting on the sideline. When the game was over, she headed toward the helmets and bats. I love her fashion sense; she grabbed a pink helmet and pink bat and made her way to home plate! It was too precious!

 

Daddy presented each of the kids with a medal at the end of the game. I'm so proud of him and the care and attention he has given each of the kids. He has truly melted my heart and made me love him more than I ever thought I could!

 

After the medals, Jayen on behalf of the team, presented Matt with an autographed team picture. Each of the kids signed their names. This will be treasured forever!

 

Thanks for an amazing season Cubs! Hope to see you all next season!

 

After baseball we headed back to the lake for more camping and boating. Our friends, the Vaughan's were able to join us. We love hanging out with them. Dalan and Jayen both can't get enough of Brecon. He is a little older than Dalan and all boy! Teagan, Nikki, and Bobby all took their turns tubing on the boat. I heard daddy gave them a run for their money. Hope they are all feeling well tomorrow. I know I hurt everywhere after tubing.

We made sure to wear the kids out well today so bedtime would be easier. We stayed up late to roast marshmallows, tell scary stories, and sing songs. They kids vetoed the scary stories, so we were left with singing songs. The first request was Happy Birthday, then Ring around the Roses. Brilyn and Jayen could not get enough of this song. It was so cute to hear them both yell "Down" at the end. We were able to convince daddy and Dalan to stand up and actually do the dance with us too. This was by far my favorite part of the entire camping trip. What a great memory I will treasure forever. Our attempt at wearing the kids down must have worked; they laid down without much of a fight! Can't wait to see what tomorrow brings!

Nebraska Game and Parks Fishing Expo

We finally convinced daddy to let the pro's show us how fishing is done; not sure he was any less qualified than the people at the expo. Nebraska Game and Parks put on a fishing expo at one of our favorite fishing holes, Halleck Park. They supplied the poles, worms, bobbers, and fishing hole. We brought our own poles but we very thankful for the worms. Brilyn's favorite part had to be digging in the dirt for the worms! We cought a couple of small ones, but just enjoyed the evening as a family. We even got Marcus, Heather, and Issac to join us!

A possible answer with millions more questions

I finally called back the geneticist today. They left a message for me to call them back a couple weeks ago and I just now am taking care of it. I kind of figured it was the results from Matt and I's genetic test. I've always felt like this might help us find a name for Jayen, but not sure it would really help us fix anything. When we met with Dr. Mendelsohn in March, she told us about the abnormality they found on one of  Jayen's genes. They wanted to do the same genetic test on Matt and I to see if we carry the same gene. Well today, I was told that neither one of us carry that mutation, so it could be an answer to Jayen's seizures. They wouldn't really explain a lot over the phone. They are going to get us in for an office visit when we are up there in a couple weeks. This will hopefully give them enough time to talk this over and figure out what they would like to do.
I pulled out the paperwork they gave us last time and sent the information to Matt. He was able to google a little about FOXG1. A lot of the information he found does describe Jayen. But some does not. I'm not sure what all of this means for Jayen, his future, or his treatment plan. I'm just trying to soak this all in and write down the questions that are popping in my head by the second. Hope this only brings good outcomes for Jayen!

The bravery continues!

Did this really just happen? Jayen begged to go on the tube and wouldn't get off. Who is this kid?

Daddy had the day off today so we were able to take the boat out. We put the boat in the water, drove around to find a calm spot, ate lunch, then the beggin started. Jayen was so intent on getting in the tube. I really thought that as soon as we put him in it, he would start whining and want out. I was so impressed and couldn't stop laughing/smiling.

 

 

Once in the tube, I asked if he wanted out and he told me no. I started pushing the tube away from the boat, once again thinking this would upset him and he want off. I was not prepared for his response. He was still smiling and excited so we decided to start driving. How did this happen? Who is this kid? When did he get so brave? We drove him around the lake for at least 10 minutes. Jayen would often take his hands off the handles and rest his back on the tube. He was loving life!

 

I hope we can get him to do this again. Can't wait to try this coming weekend when we are camping.

Practice makes perfect!

All the practice sure paid off. Do you see what this kid just did? Sure, it was only a smoke bomb, but he was front and center beside all the other fireworks and even light a couple. I think the peer aspect of it helped the most. The big boys were all in the street lighting fireworks and Jayen really didn't have anyone else to play with. He was so amazingly brave. I'm thankful Matt took the time to work with him and make it a safe environment.

 

We survived the evening, even with plenty of LOUD fireworks shaking the entire block of houses. Jayen sat with me most of the night, but for some reason I only have a picture of daddy sitting with him. We need to teach daddy how to use the camera! There were times when Jayen knew he needed an extra squeeze, but grabbed our arms and placed them around him. I was so worried about this evening, but it couldn't have gone better.

This was also one of our last 4th of July parties at the Hayek's! Thank you so much Jerry and Kathy Hayek for opening up your hearts and home to us for the past 9 years. You hold such a special place in our hearts. Hope to join you again some year!

Cussing and fireworks!

Not a hug cusser, but fuck fuck fuck! We just had our first 10 minute seizure since surgery. I'm not sure what is going on again. The last three seizures have been over 8 minutes. Can't wait to ask the doctors my millions of questions when we go for follow-up in a couple weeks. We let Jayen sleep it off as long as possible before we had to leave for the festivities tonight.

Tonight we are trying a professional fireworks show to get Jayen used to the sights and sounds before the big party tomorrow. Offutt was having their display at the base lake. We decided to avoid the crowd and traffic. We met Evan Friedrich and his girls at Catfish Lake in Bellevue. We had never been there but heard they have the best catfish in town. We sat outside hoping to see the fireworks from the patio. The kids loved throwing their leftovers in the lake and watching the fish go after it. As the sun started setting we quickly noticed the swarms of mosquitos that frequently visit the lake. We quickly decided to get in the vehicles and find a safer place to watch from.

 



 

We didn't get far though. We ended up on the side of the road right outside the restaurant. We set up our chairs and let the kids run around on the gravel road. They found a little toad and we more than busy passing it around! But once again we quickly noticed our friends found us again. I piled the kids in the car to watch a movie until the fireworks started then we would come back out. But when the bugs got too bad for the daddies too, we turned the cars towards the display and just watched from inside.

 

Not sure this helped Jayen at all! He was too busy playing with all the kids to even notice the fireworks. Hey, that might just be my answer right there! Keep him busy!

Practice, practice, practice

We had to start "practicing" with fireworks for Jayen. We are only two days away from the big celebration and I'm not sure how this is going to go. Jayen has never been a fan of fireworks. Even when we watch them from far, FAR away. He clenches his stomach, has a terrified look on his face, and tries to claw his way out of my arms. He is getting much bigger now and harder to hold. We started with snaps. Jayen was smiling and seemed to enjoy this, but as soon as we moved to the bigger artillary, smoke bombs, he was running for the house.

 

This is as close as he would get! Well I guess a little progess is better than nothing. Have to try again tomorrow!