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.