Hello darkness my old friend

 I don't know how long it has been since my last post, but today I knew I needed to let it out. I've been struggling a lot lately. Our family trip to Jamaica is coming up soon but what I pictured it to look like has quickly changed when our friends cancelled. We can still have fun as a family. We will make the best of it. But I keep thinking about how we have based the last year of medical decisions on this trip. We have pushed off surgery because we wanted this for all of us. 

Jayen has been struggling lately; with seizures, behavior, school, and so much more. This weekend was the ultimate test of my patience. Matt is gone again for deer season and I have been left with everything. I drove to Lincoln and back three times, Ashland, Gretna and home. I begged my sister to watch the two little ones so I could be there for our eldest's basketball games. I thought I was giving attention to the littles when I was home and making them feel loved. Saturday night after my sister left, Jayen had a huge seizure that required emergency medicine. The seizure seemed to subside and Jayen eventually feel aleep in my arms. I've longed for one of those moments again as the kid is always on the go and seems to only ever want his dad. I held on to him for as long as I could. 

On Sunday, my sister helped me out again but decided to bring them to the game in Elkhorn. It was so nice having a cheering section! I had volunteered to do the bookkeeping before I knew they were coming. I could see from my table that the kids were struggling directly across from me. I could see the frustration of my sister and our neighbors. Brilyn was antsy and showing off, but Jayen was uncomfortable and unable to control his body. These are often times of seizure breakthroughs. I tried watching the game, keeping track of all the stats while also keeping one eye on him. My mind was overwhelmed but I could see his body was too. When the game ended we gave D the chance to talk to his friends and enjoy his victory, but by the second Jayen was spiraling. He was using a fidget spinner to hit people and I was able to take it away which caused more anxiety and frustration with him. As I was talking with our neighbors, Jayen pulled a pocket knife out of his pocket and brought out the knife. He started coming towards me but stopped before the knife touched me. I could see the horror in everyone's eyes. I knew (I hoped) he would never do anything with it, but his emotions were not under control. After that, neither were mine. 

I'm struggling today. I'm struggling with the decisions I will have to make today at his neurology appointment. Are they going to continue to push for surgery, especially now that we are this close to the deadline we gave them. After Jamaica we said we could consider it. I'm struggling with how to help my son, how to help our family and how to continue living like this. 

Advocating and press conference

 I was invited to speak at a press conference in support of LB474 Adopt the Medical Cannabis Act. It was quite the emotional day! I will always fiercely advocate for my son. I'm beyond grateful for the opportunity to speak but even more so for the people I got to share the microphone with. I was surrounded by some of the most amazing parents and advocates; ones I aspire to be. I'm also so proud to stand beside some of the most compassionate senators. They care about Nebraskans and show it in their legislation. 

Medical marijuana debate back in front of Nebraska senators (wowt.com) Brain Mastre had some great coverage of the press conference.  

Press Release – February 23, 2021

My family and I were absolutely devastated last September in learning that all the hard work these families put into the ballot initiative was thrown away because the subsections meant to keep Nebraskans safe were considered logrolling. The work of hundreds of volunteers and the voices of over 196,000 Nebraskans were thrown out because some thought voters would be confused. I’ve read enough ballots in my life to be confused about more items than whether or not medical cannabis should be allowed in our state. Forty-seven states in the US have some cannabis legislation. Cannabis IS medicine and the majority of governors say so!

My son, Jayen, doesn’t have time to wait for another ballot initiative. His seizures are debilitating and each one puts him at a greater risk for Sudden Unexplained Death in Epilepsy. The only other option we are left with at this time is another brain surgery. There is a medicine that could potentially help him, but he is forced to endure probes placed directly on his brain and the removal of parts of his brain instead. We are desperate for the help of the lawmakers in our state to take action and pass a bill that could help many suffering in Nebraska. Forty-seven states have enacted some kind of cannabis regulation but for 7 years Nebraska has failed. When the people took charge and petitioned their government, their government moved the goal line and redrew the end zone.

According to the Nebraska Supreme Court Justices, “If voters are to intelligently adopt a state policy with regard to medicinal cannabis use, they must first be allowed to decide the issue alone, unencumbered by other subjects.” After submitting new, simpler, one sentence language and learning it still may not meet the single-subject requirement something needs to change.

We are here today to beg our law makers to help write sensible laws to help our son and the hundreds of people we met who could benefit from cannabis. We need your help and we need it now. We are asking for your support for LB 474 Adopt the Medical Cannabis Act, LB475 which would require the Attorney General to issue an opinion with respect to whether an initiative measure contains more than one subject before petition circulators begin collecting signatures as well as LR24CA which would place a constitutional initiative on the 2022 ballot to amend the Nebraska Constitution’s “single subject rule” to instead read “Initiative measures shall contain only one general subject which may include provisions that have a connection to the general subject of the measure.” If we can’t get this passed in the legislature we will not back down. We will continue to fight; we just don’t believe the finish line should move to stop the people’s will.

Parent-teacher conferences

Nothing like parent teacher conferences to make you realize how far behind your kid actually is. Why does it feel like a gut punch every time? I know where he is. I live in this reality. But every time I cry.

EMU stay at Boystown

Today we checked into Boystown for an extended stay EEG monitoring. We've been trying to work with Jayen hoping that he will allow the technicians to put the leads on his head with little resistance. We watched videos of other kids having the procedure, we practiced using q-tips and washing off spots on his head, we talked and practiced. 
After checking in and getting settled into the room, it was time to see if we prepared enough. I talked to the nurses and staff and shared with them the verbiage we've been using. We talked with Jayen again and even let him practice putting leads on the head of a boy printout. They bribed him with iPad time and snacks when he was finished. And guess what?!?! That kid sat on the couch and barely fussed as they marked his head and washed it with the q-tips. I was so proud of him! 
After cleaning his head, the next step was to lay on the bed to put the leads on the cleaned marks and glue them in place. I don't understand why, but the transition to the bed seemed to trigger him. Jayen was not cooperating and refused to let the technicians put the leads on his head. Which lead to mom having to sit on him to restrain his hands and feet and hold his flailing head in my hands as he screams out in fear. This is the part that kills me. I know why I had to do it. I urged the nurses to let me do it. But a part of me dies each and every time. My heart breaks when I have to look into his eyes and hold him against his will. For over 45 minutes I had to sit on him and try to reason with his fight or flight response. I had to watch the tears roll down his face while forcing him to stay where he is most uncomfortable. 
We eventually got all the leads on and I knew it was for his best. I pray that this test brings us some answers and hopefully some better options. 
Because of the COVID-19 virus we are not allowed to have visitors so this will be quite a boring and long stay. Send some prayers for us and the staff here. We are praying they get all the information they need as quickly as possible. 

Black and blue

This is what Jayen's face looks like. This is what the seizures leave him with. The bruising around his nose, the black eyes, the crusted blood in his nostrils. These don't ever seem to go away. They sometimes change shape or position but are almost always present.

The headband I bought last week seems to be helping, if we get it on him in time. We are watching over him from the second he wakes not leaving his side. But somehow they strike the split second we blink. I continue to pray that some day we will have a little more control over them. For now I just pray that they stop leaving these lasting impressions on my son. 

Chants and chances

This weekend has been pretty jam packed with lots of family and friends. We celebrated Uncle Tom's 40th birthday party of Friday and partied until all hours of the morning with cousins and friends. Saturday we were able to celebrate the life of friend lost way too soon. While mom and dad were out partying with their friends until all hours of the morning, the kids were at grandma's partying with cousins again. Then today we celebrated birthdays for Madison, Hunter, Morgan and Brooklyn with a bowling party. 

Jayen has always been a big fan of bowling. I love that he is 100% independent! He can do every aspect of the game completely by himself. He waited for his name to pop up on the scoreboard then grabbed his ball, plopped it down the lane, waited to see what he scored, then prepared for his next throw. Because he can do this all by himself, I took the opportunity to talk to adults. Suddenly, I hear Hunter and Dalan start chanting his name then the whole crowd of kids join in. Jayen grabbed his ball and walked to the lane with a little pep in his step as they continued chanting. He lofted the ball in the air, it came down with a thud, then rolled its way to the front pin. As the chants continued the kids watched as each and every pin fell to the ground and a new roll of cheers, screams and claps came with amazement. That kid just got a strike. What are the chances? I could see the excitement in his eyes as he scanned the room for the one person he wanted to share his moment with. Yep, not mom. He was looking for DAD. WTF? Fine, he gave dad a two handed high five then a big hug. I was watching his face to see if he was overexcited and this was going to turn to a cry or if he was going to live up this moment. He was definitely teetering on the edge of both. After his hugs from dad he did come over and share a little one with me. 

This weekend and the time with family was definitely what we all needed. This move hasn't been the easiest on all of us but I do still feel this will be worth it. I love my family and friends and I love that they love my children. I love that Jayen is included and valued!

New gear, New hope, Cool Mom!

With Jayen's continued seizures causing him to hit his head more often, we knew we needed to look into helmet options. Typically, medical grade seizure helmets are bulky and cover the entire head. We weren't sure we would be able to get Jayen to agree to wear it or even keep it on. I was doing my research and trying to come up with "cool" options that I thought we could make work. I stumbled across protective headbands. I noticed they are advertised for use as protection while playing soccer. Well, if they are designed to absorb the impact of a soccer ball then they should be helpful in absorbing the impact of his head to a countertop. Right? And they look cool. I could totally convince him to wear a sports headband. I could show him pictures of basketball players wearing them. He would think he was "cool" and I would be "cool" for buying him basketball gear! Total mom win!

The headband arrived yesterday and first thing this morning we talked up how cool his headband was. So much so that he was mad at us for not letting him wear it to school today. Well, I guess it was a success. He is "cool" and his head is slightly more protected!

 

They are getting worse!

These things need to "Go AWAY and Don't come BACK!". I just can't keep seeing him like this.

Something went right!

I've been working on applying for the Aged and Disabled waver through Medicaid since the day we arrived back in Nebraska. Did you know that even though my son's disability has not changed, I had to apply in Nebraska initially, discontinue services when we moved, reapply in Arizona, discontinue services, reapply in Nebraska; all for the same Medicaid. Why do we do that to our military families? I hope to address this for other families. 

Anyway, after being thrown between 5 different organizations under the umbrella of Medicaid, I was finally directed to the right place. I filled out the paperwork, waited many many weeks, but just received the phone call that he is being accepted again!!!!!!! The intake lady was so incredibly nice and I thanked her for helping us through this process. I may have even invited her over for wine! 

Now we just wait for a caseworker to be assigned and a home visit to be scheduled!

Breakthrough

We've started seeing these breakthrough seizures in the afternoon and evenings now. They are so subtle and easily missed. These are what bother me. These are the seizures that I worry about and keep me up at night. It was easy/easiER to care for Jayen when I knew his seizures would occur in the morning. I knew that the second his feet hit the floor in the morning I needed to be near him. I knew I had to hold onto his magnet all morning long. I knew that around 9 he was good to go for the rest of the day and I could breathe a little easier. But now, I can't breathe.
I can't breathe because I don't know where he will be when one strikes. I can't breathe because I don't know who will be with him. I can't breathe because I can't let him out of my sight anymore. His freedom is taken away again. My freedom is taken away again. Our family's freedom is taken away again. I just want to help him break out of this jail we are now in but I can't.

New Doc, same old issues

Today has been a day of phone calls and continued dead ends. Dr. Datta's office put in all new prescriptions to our local pharmacy when we saw her last. But of course, messed them up. Yesterday I called in the refills I needed and was going to pick them up after Dalan's basketball game but didn't have enough time. So today we ran by quick, or so we were hoping. Nothing with Walgreen actually ever works as planned. There are ALWAYS problems! Since I had never filled these prescriptions, I didn't have the numbers to call them in and have them automatically refilled, so I had to talk to the pharmacist. I asked for three medications to be refilled. Well, when we got there today only two were available. I had to try to remember The pharmacist was so polite and quickly filled the correct one for me. When we arrived home I was adding what was missing to the pill container and realized the Keppra instructions said to give 2 pills twice daily but was only refilled for 60 pills. My math skills helped me realize that was not going to get us through a month. I called Walgreens and thankfully the pharmacist realized that was incorrect as well but couldn't change anything because that is what the prescription was sent to them as reading. She was willing to call Datta's office tomorrow and try to correct the problem.
After working on that mistake I tried calling the specialty pharmacy that Jayen's new rescue medication was being sent to. Well, they had nothing. Nothing for his birthday, nothing under his name, nothing from that doctor. Seriously? So I tried calling Klein's office and reached the after hours line. I was told that they were not allowed to call the doctor on the patients behalf but I could have the pharmacy call and then they would contact the doctor. So what does that mean if my son is having outrageous seizures and I need to call the doctor? You couldn't contact her? What is going on? So, I opted to leave things alone until tomorrow when I could call her office and beg them to do the job they originally told me they were going to do.
Just not feeing confident with the situation we are in and I am beginning to think a second opinion may be best.

Hello Darkness My Old Friend

Well, I know it has been an incredibly long time since I have added anything to this blog. Things got busy! But for a while, things were really good and there wasn't a lot to talk about. For a while, I felt like I was just adding things for the sake of adding things and it was more of a hassle than the therapy it originally started out as. But things are no longer good. Things are actually really, really bad. I'll try to go back and update the blog but I will mainly focus on updating going forward.

Jayen's seizures came back in August of 2018. They were subtle at first but with every head drop the intensity and frequency increased. More fights with the hospital ensued and we eventually received the confirmation that Jayen was, in fact having seizures. We tried to manage them with medications but continued to fail our way through the list. Finally, in July of 2019 we conceded to another surgery and added a Vagal Nerve Stimulator (VNS) to his regimen. This device, similar to size and function of a pacemaker, is supposed to send electrical impulses to his brain to hopefully stop the electrical impulses of a seizure. Well, 7 months later I can't report any improvement and actually can only report things are progressively getting worse.

When we moved back to Nebraska this year we had an appointment set up to meet with Dr. Proleta Datta at UNMC Bellevue office. Dr. Datta was very nice but quickly told us she is not a pediatric doctor, nor an epileptologist. She would be willing to manage his care but thought his case was beyond her practice. She suggested we try to see Dr. Hannah Klein at Boys Town as she is the ONLY pediatric epileptologist in the entire state. I tried making an appointment with her office but they wouldn't let me schedule anything until Datta's office sent over his records. I battled with them for weeks to get the records sent then finally filled out the paperwork for Phoenix to send them directly to her. Things were getting progressively worse for Jayen so I reached out to his pediatrician who called Klein's office to ask for any assistance getting him in sooner and again was told there was nothing they could do. So, me being me, decided to share my worries and problems on their social media advertisements that continually came across my feeds. The very next day the director of neurology called to ensure me they were doing everything they could, but still had nothing sooner. I just explained how worried I was with the situation we were in. We can't see the neurologist who previously managed his care because she is in Phoenix, Datta didn't feel comfortable doing anything and frankly I didn't feel comfortable with her (more of that later), and the only advice Klein's office would give me was that if things got worse to take him to the emergency room. So I, not so politely, informed the director that those options were not appropriate. If I took him to the emergency room, a doctor who has never seen him before and wouldn't have access to his records would have to make a recommendation based on his minimal expertise in seizures. I didn't understand why her office thought it was more appropriate for an ER doctor to lay eyes on my son and make a recommendation rather than Dr. Klein use her medical expertise to make a recommendation even though she has never laid eyes on him. A week later I received a call stating they could get us in on February 7th rather than the 24th.
Today we finally saw Dr. Klein. Well, what a day it was. The appointment was scheduled for 11AM. We arrived at 10:15 since we knew it was our first appointment and just wanted to make sure to give Dr. Klein whatever time she needed. Jayen was anxious to be at the doctor's office so it was a little harder to contain him in the waiting room. At 11:45 a nurse came out to tell us the Dr. Klein was running incredibly behind and had an emergency she had to take care of. They wanted to know if we would go have lunch and come back at 1. We were not happy but agreed. We ran to lunch and were back by 12:35. Around 1 his vitals were taken and we were placed in an exam room. It took another 45 minutes for Dr. Klein to come in. But I was even more annoyed when she said she didn't have his records. WTF? Your office wouldn't even let me schedule any thing until you had them! We verbally went over his history.
I was impressed that she took the time to talk though everything but I was extremely disappointed that she didn't have a lot of options for us. I felt like she basically told us to live with the way things are now or to try another brain surgery, this time doing a corpus callosotomy. I am not ok with either of those options. She was able to help us getting a new rescue medication as the oral wafers are doing nothing to stop his seizures and diastat is not a great option for school.
Left with so many unknows for his life and future and only crappy options. Debating whether or not to get a second opinion elsewhere.

I can't even believe this shit! I'm sobbing uncontrollably after the phone call I just had.
Jayen started seizing this morning at 6:54. He drops his head and shoulders so quickly I call them jackknife attacks. This continued for 15 minutes before I called Matt and asked what he thought I should do. We haven't met with Dr. Jarrar yet so we don't have a true plan in place for anything. We really didn't know what to do so when it hit the 20 minute mark I opened our new package of rescue medicine and tried to give him one. Jayen is not used to this medicine and didn't like that he had to leave it on the side of his mouth. He is good at swallowing medicine but not good at holding in the side of his cheek. He put up a good fight. The seizures continued for another 5 minutes so I called the on call physician at Children's Hospital Phoenix. The on call physician was pulling up his file and said he kind of remembered Jayen from the hospital stay. He was very quick to read that these were not seizures. I was truly upset, furious, enraged, infuriated, irate, seething, etc. I explained that I called Dr. Jarrar when she returned and she said they are in fact seizures. He continued to tell me all he had to go off of was the notes in the computer and they said they were not seizures. I was getting stern with him that something was happening to my son and I was calling the hospital for help and answers. This jack tried telling me to calm down and that getting upset would not help my son. I understand he was trying to deescalate the situation, but truly all he was doing was the opposite. He wasn't sure what to do and asked if he could talk to Dr. Jarrar and call me back. I was more than happy with that option until he said he had to starts rounds soon and would try to get back to me afterwards, like in about two hours. This is when I truly lost it on him. I don't understand how I am supposed to sit here and let my son continue to seize for another two hours while you go do rounds. That is when this (not nice for anyone's ears) told me that there are other patients "on death's door" that are more important than my son right now. If I really felt like he needed help right now then I should bring him to the emergency room. In tears, I quickly responded that the last time I did that it got me no where. He finally said he would call Dr. Jarrar and get back to me as quickly as he could.
Within two minutes, Dr. Jarrar was on the phone with me. She profusely apologized. She had me give him another dose of rescue medicine. She explained that somehow the neurologists must have reviewed his file and determined that he was having seizures but we were already discharged. She did say that they had already increased his medicine so they wouldn't have done anything different anyway. But don't you think that would have been good information to share with the parents. Yes, your son is having seizures, here is your new seizure protocol. That would be the perfect thing to tell a parent who just left the hospital disagreeing with your diagnosis and asking what my options were. I begged her to put something in his file that states these are seizures. At this point in time his seizures are not responding to the increase in his Keppra. Dr. Jarrar suggested we try another medicine known to help with spasm and drop seizures. She would like us to add Onfi. We have been on this before and Jayen responded well in the beginning but like most of his medications the honeymoon period eventually faded and it stopped working. This medicine does require a prior authorization so we are not sure if we can get it before the weekend. If we can't get it then she would like us to start another medicine in the meantime. I was given titration doses for both medicines.
Why can't she be the other person I deal with. I truly do like her and appreciate her opinion. I feel she is incredibly knowledgeable and understands Jayen's whole story. But to have to deal with the rest of the hospital has been such a fucking nightmare. I will be calling and filing a complaint today. Cluster of seizures today lasted one hour and 12 minutes.

W.T.F.?

Jayen's neurologist was supposed to be back from vacation today so I started calling around noon. An hour later I received a call back from the nurse asking me to describe his new episodes. I was confused as they were the same things we had caught on video EEG in the hospital but I obliged. She was going to call me back after she talked with the doctor. Some time later she called back and said the doctor suggested we increase his seizure medicine again. I started questioning her and this decision as I have clearly been told these are not seizures. I reminded her that the neurologists at the hospital told me they did not show any epileptic activity. The nurse said she would take that info back to the neurologist and see what she wanted to do. A little while later I received a return call and was told our neurologist reviewed his inpatient EEG and saw "real seizures", he was in fact having seizures and she would like to increase his medicine again. Wtf? Why? When? How? Does this mean the other doctors are incompetent/incapable of reading an EEG? Does this mean they lied? When did she read it? When did they discover this? Why did no one call me? Do we have a new protocol? When do I give rescue medicine now? So many questions but I seriously sat on the phone with nothing to say. I was so fucking speechless. Why does this happen? How does this happen? Does he seriously have seizures again? Who do I believe? What do I do? How can I help him? So much of me wants to run screaming straight to Minnesota. I'm just so lost, hurt, and confused.

Possible answer

I may have found something today. After getting nearly kicked out of the hospital, being told he is not having seizures but the doctor's increasing his seizure medicine and giving us a new rescue medicine, I have been researching nonstop. Today I came across something I think could possibly be an answer. I by no means am a doctor or have any medical training but I refuse to sit back and watch this happen to my son. I refuse to haphazardly add medicine to his regime without knowing what we are trying to cure/resolve.
I stumbled across a condition called dystonia. Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not know. Dystonia is common with kids with FoxG1.
I don't know everything and this may not even be close to what is going on with him, but I will keep looking until we find out.

Today we had our new school year meeting with Jayen's team. We were so excited to meet his new teachers Ms Carver and Mrs Johansson, as well as see Mrs. Lake again. We had a productive meeting and were able to make a tentative schedule for Jayen. We have worked really hard on getting him into the regular education classroom with resource pull out rather than the self contained classroom he was previously in. I am so hopeful for this school year and excited to see that progress Jayen will make. 

Towards the end of the meeting, Jayen started acting a little out of it. His eyes were rolling back and he was losing balance. I recorded a little of it because I knew it wasn't his normal. I need to put a call into the neurologist now. 

We love camping!

The heat in the valley is truly unbearable. The best way to escape is head into the mountains and camp! We thankfully have some amazing camping partners; our neighbors, Christian, Eva, their kids and dogs were able to join us. 

Jayen was trying to keep up with the big boys and wasn't successful so the dads worked on a special plan to keep him busy. They used all of their "Tim the toolman" skills and whittled a basketball hoop. They even got creative and unwrapped some twine to make the net. They were pretty proud of themselves. And most importantly, it kept Jayen busy for hours. Well, at least until the rain came!  

The rain kept us under cover or inside Christian and Eva's camper for a little while. I'm thankful for their hospitality. We could have survived under our canopy but it was nice to have shelter and share it with them. We ate and played cards.
The next morning things were dried out a little and we had to find new ways to keep the littles busy. Matt went back to his drawing board and came up with these swings.

How do you say "Goodybe" and "You've changed my life"?

I know people are put in your life for many reasons. Sometimes you figure out what you are supposed to do in their life and sometimes you figure out what they are supposed to do in yours. This little girl and her family have changed my heart in so many ways. I have loved watching Tori sing and dance at Sunday school, develop her baseball skills at buddy ball and just all around light up a room with her smile. I have loved watching her sister grow and develop into a walking, talking toddler with her spunk and attitude. I have enjoyed every conversation with their mommy. She gets my life because it is so similar to hers. This Air Force family understands my struggles and joys, tears and triumphs because they are theirs as well. Today I had to tell them goodbye and wonder when I will get to see them again. Like all military friends, they are on to their next duty station. We have enjoyed every moment with them and wished for many many more but duty calls. 

As a going away gift for Tori we wanted her out of her Diamondbacks shirt (the buddy team she plays on) and into a Cubs shirt (our team we coach). We also found a matching tutu (you will rarely find Tori without one) and a bunch of fun colored shoe strings. We hope she wears them often and thinks of us. 

We will miss you all and hope that our lives cross again. Until then, keep in touch!

Swim lesson HERO

Back home and back to the business of life. Today the kids started swim lessons again. Dalan is such a great swimmer but I wanted him to be a stronger swimmer and learn how to save someone. Jayen is still struggling moving both arms and legs, so we kept him in the beginner course. Brilyn is a little fish and recently learned how to swim under the water and without a floatie, but because she is so small we opted to keep her in the beginner course as well. 

My little hero tried saving the rest of his classmates from the bees hanging around the pool, but didn't realize it would result in getting stung; on the bottom of his foot of all places. Now we will have to go home and try different remedies so he can stop crying and possibly bear weight on it again. What a tough lesson!

John and Erin's Wedding Reception

Our last day in Nebraska but more family to play with. Today we got to celebrate John and Erin's wedding with the Hochstein side. We got to play with more cousins and run around more. Dad even enjoyed a game of horseshoes and cards. 

But the fun always comes to an end. We had a long drive ahead of us and needed to get going. 

Thank you Nebraska and family for all the wonderful memories.

Omaha bound

It was getting time for us to head back towards Omaha before making our way to Arizona. We were able to meet up with Grandpa in Sioux City and tell him and the truck goodbye. We were all crying and sad to leave. Some of us might have been more sad we didn't get to ride the truck, but we were all sad none the less. We will see you again Papa! 

 In Omaha, we were able to stay with my friend Kourtney and her family. I finally got to meet her baby (who was nearly a toddler by now) Alex. Her oldest, Henry, really enjoyed playing with Dalan. Even though it was after the 4th, we kept a few fireworks to share with them. Kourtney wasn't sure how Henry would handle them, but after he saw Dalan lighting them off he was ready to get up in the action too.
 

Thank you Kourtney, Todd, Henry, and Alex for the great night!

We've had some long days, but we still are trying to fit so much into our days. We slept in a little this morning but then went to Yankton to have lunch with Grandma and Allissa. My mom usually walks after she is done eating so I joined her for a few laps before heading to the dam to go fishing. 

Tom, Tanya, Madison, Hunter, Morgan and Brooklyn met us at the dam as well. It was such a hot day so when they got there we set up the pop up tent and let the boys fish while the girls sat in the shade. We didn't catch much of anything. I'm pretty sure we only pulled up two little fish. But Jayen was intrigued and even touched one. Whether we caught anything or not, the kids got to play with their cousins. They made memories and shared experiences. Nothing beats that! The ice cream at the Dairy Shack afterwards was a close second though!

When we got back to grandma and grandpa's that evening, Allissa had some gifts she wanted to share with the kids. She gave Brilyn and Brooklyn coloring books called I'm the Flower Girl and asked them to be the flower girls in her wedding. They were a little too excited and thought they were doing it right now. Not sure they will be able to wait an entire year!

Then she asked Jayen to be her ring bearer. We tried to explain to him what she was asking him to do, but I'm not sure he understood. He was just excited to get a present. Dalan, Madison and Hunter were asked to serve.

We helped put the kids to bed and took advantage of having family around and headed to the bar to help Adam celebrate his birthday! It really made Matt and I feel old but we enjoyed being there with him.