Sad, sad mommy but pretty impressed

Seeing my baby have a seizure is scary, but for some reason setting him take a propofol nap is the worst. I hate it. Still trying to stop crying.
MRI was today. I was so impressed with the staff though. (besides being an hour behind schedule) Someone met us in the MRI room at Children's. I'm not sure what her official job title was, but she came prepared. I had never really thought about Jayen and his beginning to understand all the stuff he is going through. I had always gone into things thinking I would comfort him and help the nurses get it done as quick as possible to not prolong the pain. I had never thought about his anxiety and comprehension of what was actually happening. This lady brought her ipad and a little sewn doll. The doll had scrubs on just like Jayen. Because Jayen was going to be getting an IV we showed him what was going to happen on the doll. She used the ipad to show real life pictures of the steps they would take to put the i.v. in. She really discussed everything with him and gave him the opportunity to try it on his doll. He used real tools and put a real iv in his doll. They even went on showing him pictures of the hallway they were going to drive him down, the room the MRI machine was in, and the actual machine itself. Even though he was going to be under anesthesia, she wanted him to know exactly what was going to happen. I was SO impressed! I think I am going to have to start making a ton of medical social stories now!!!!!

Saddest moment in this mommy's life. I hate him screaming one second them completely lifeless the next.

I was balling, but stopped to giggle at his little spiderman slippers hanging out the back of the MRI machine!

Wake up sleepy head, Mommy wants to kiss and hug you!

Grounds pass

Got the wires off for the MRI and we couldn't keep Jayen contained anymore. One week of being tethered to a 30 foot cord and he was off the walls. We were finally given a grounds pass!!!! We could take him anywhere on the Chidren's Hospital grounds. Someone told us about the rooftop gardens. Better go check it out!!!

I don't think he is excited at all!

He was literally RUNNING down the halls!!!

In the back you can see the screens covering the hospital. It really helped transform the area. At the top of the screens was a little poem that brought tears to my eyes.

 

Five year old Kirsten is a curious little girl

with a beautiful smile and heart full of curls.

All of her friends just love to play,

In a magical garden on beautiful days.

Where dreams come to life and time drifts away.

The creatures and plants have stories to tell,

They talk you see and have sweet scent to smell.

Secrets about in the world outside

With things to find and places to hide.

Kid and grownups and animals and bugs,

in a place for fun and hugs.

What a secret garden this was. There were plasma cars, a fish water fountain, plants all over. It was so magical! I think Jayen, mommy and daddy all had smiles plastered on their faces the entire time we were there. It was such a perfect break. Truly magical!!! Our time got cut a little short when one of the boys ;) forgot to tell me he had to go to the bathroom. I'm so glad we got to see and experience the gardens though. This is our third admission to the hospital but only the first time seeing the gardens. Maybe tomorrow we can try to discover a few more hidden treasures!

 

 

 

WIRES OFF!!!!

TODAY THE WIRES COME OFF!!!! MRI scheduled for this afternoon so the wires have to come off. Long awaited!

Before-This is what Jayen has looked like for the past week. It is so fun seeing what the kids look like in their everyday lives. We have seen some friends come and go and everytime the wires come off, everyone is so impressed with how they look.

He was so brave. Way easier to take off than put on!

A few of the electrodes actually took off his skin. It was very painful for him when the solution they used to get the glue off would touch them.

First real bath in a week. Daddy was letting him go crazy! He even had a countdown and let him splash as much as he liked. It got EVERYWHERE but daddy didn't care, he didn't have to clean it up! I think this happens at home a lot too! Might have to start requiring more help with the cleaning.

Look how handsome!

Jayen's transformation! Everyone was so impressed with how blonde he is. Zondra, one of the nurses we have had all three stays, asked if I bleached his hair.

Wasn't quite ready for that one

This morning we met with the new doctor on call. I remember him from last year when we were here. He was very helpful. He really sat down with us and talked. I think this is something Dr. Frost is a little lacking on. Dr. Frost is very knowledgeable and gives great info when you ask questions, but isn't quite the person who shares a lot of info about possibilities and probable outcomes. He likes to say we will wait and see.
We talked about a few more prescription options that might be available and possible VNS. There were a couple of calcium type drugs that were available but are less intense and he doesn't feel they will work. The other option was the Sabril. He really encouraged us to consider Sabril again. When I mentioned that it was something we decided against, he asked why and what our concerns were. He was very gentle about the question and just wanted to hear our point of view. I felt very comfortable talking to him. I mentioned that some day I see Jayen as being able to drive (maybe not when he is 16 but maybe when he is 40, who knows) and peripheral vision is very important to be able to drive. He brought up some good points. If we don't control Jayen's seizures he will never be able to drive anyway. The conversation turned a little and I started asking more what if and abstract questions. I know no one has a crystal ball and can see what is Jayen's future, but I wanted to know if in their medical opinion if they thought Jayen would ever be seizure free again. In my mind, I already knew what the answer was, but I had never heard it from anyone before. I really wasn't ready for the answer. I'm not sure I am still ready for what I heard. At this point the medical team does not feel that Jayen will ever be seizure free. He will NEVER BE SEIZURE FREE! HOLY SHIT!!!!! I don't know how to deal with this for the rest of my life. I don't know how to deal with this for the rest of his life. This was a lot to take in. I know it was my question, and I know I already knew the answer, but deep down I was really hoping to never hear that. It was discussed as well that Jayen would probably always have a delay. I really felt that Jayen would probably always have something a little different about him, but always felt that he would look, act, talk, play, run, and many other things like his peers. My hope and thought was that he truly would fit in and be "normal" for the most part. I guess I just feel now like that isn't necessarily the case. Am I just way out of line to think that he would someday be "normal"? Walking through Walmart (the most non normal place I can think of) would he be able to fit in?
We also discussed the VNS option. Obviously it is still an option and something we are wanting more information on. We talked about how VNS wouldn't be an end all. That VNS helps with the intensity of the seizure, but doesn't stop them completely so he would still have to be on a prescription option. So we will discuss the Sabril a little more and truly weigh our options.
Tomorrow is the 3T MRI. Hopefully that will give the doctors a better picture of Jayen. We will pray for a regular seizure tomorrow morning so we can have the best information to make the best decision with.

The last of our friends that we have made during our stay have started leaving today. It is such a bittersweet thing. We have loved chatting and meeting them. We are so thankful for their continued prayers and send more their way. We hope they all have the answers they were looking for and guidance to make the decisions facing them and their journeys. Goodbye Ivy and Tifannie!!!

MRI rescheduled

We had our MRI scheduled for 3:30. We completed all the questionnaires this morning and made sure Jayen was NPO by 730. (which was a task in and of itself) Breakfast was supposed to be delivered at 6:30 so he could be done eating by 7:30. It didn't arrive until 7:15. We shoved as many bites into his little mouth as we could before the nurse came and took the tray away! After talking with the doctor during morning rounds, we decided that since we haven't recorded a seizure yet that we would try to see if we could reschedule the MRI so we don't have to take EEG leads off then put them back on. Thankfully with the reschedule we were able to get a 3T instead of the regular MRI. Unfortunatly, we have to stay until Tuesday now.
Missing my other babies like crazy, and super sad I have to miss my sister's homecoming. She was part of the court this year and I have to miss it. Hope they are videotaping it for me.
I'll keep updating as often as possible!


Gave Dr. Frost his picture this morning during rounds. He loved it and chuckled a little. Apparently he liked it, the residents came out and said he was showing it to everyone!

On the road again!

Today was Jayen's field trip with his class to Fontenelle Forest. It was a crazy day trying to pack suitcases, the car, and get everything ready to leave as soon as he returned. I wanted to go on the field trip with him so my time was minimal to get EVERYTHING ready for our trip. Bryan met us at the house early to see where/how Dalan's drop off for school goes. We can't thank him enough for all his help! I don't know what we would have done otherwise. Jayen's field trip was fun. Brilyn and I were able to touch the animals with him. We touched a turtle, rabbit, and snake. Well, I didn't touch the snake! After his field trip, he rode the bus back to school and I was able to pick him up right away. We ran home, finished packing, got gas, and grabbed dad. On the road to Minnesota again. We were able to meet Tanya in Vermillion to drop of Brilyn. She was so quiet and unsure of what was going on. She didn't cry, but didn't make any sounds at all. I hate having to leave her. She is just too young to understand what is going on. We finally arrived at the hotel around 9pm. We all grabbed our swimsuits and jumped in the pool. We wanted to make sure Jayen had a little fun before his hell began. The water was freezing so I let daddy and Jayen swim and play. I supervised and took on the lifeguard role. No one drowned but there was a lot of horseplay. Off to bed. Early morning. Updates when they are avialable!

timing not so great

Well, we were hoping we could hold off another seizure until Thursday but it didn't happen. Seizure this morning. Now I'm counting and hoping that since it was 4 days since his last one that if we went another 4 days that his next one would be on Friday. That could still work. Just hoping he doesn't have to be in the hospital for forever. 10 days was too long the first time we went. Finger, toes, eye, ears and whatever else we can cross that we don't have to stay long!!!

Good timing? Hopefully!!!

I guess it is never good timing to have a seizure, but hopefully things will work out so we don't have to be in Minnesota long. Jayen had a seizure last Thursday then had one again this morning. Hopefully that means he will have another one next Thursday. That would mean the first morning we are there and hooked up he could have a seizure, we could get all the necessary data we need, and get the heck out of there! Wishful thinking, I know!!! The only time we ever pray for seizures is when we are in the hospital!

Blown away! Love our PTC family

I think I have been so busy getting everything together for our trip that I haven't had much time to sit and think about what is actually happening. Jayen had therapy today and I was blown away. Candice approached me after Jayen went back and asked when we were leaving and was just getting a little more information. I didn't even put it together until she mentioned it, that Jayen wouldn't be back to therapy until we returned from the hospital. Like I said, I just don't think I had time to even think about it. I was a little sad. Brilyn and I left therapy to just hang out for a little bit but came back before we spent daddy's entire paycheck! When we returned we were asked to come check out something in the back with Candice. She wanted to wish us luck and sent us with an AMAZING gift. I couldn't help but to tear up and probably would have full blown cried if she didn't keep yelling at me to stop! I think my mind was just in awe and amazement that I didn't even think to open it there. I felt so horrible after I left that if I didn't have to pick Dalan up from school, I would have went back later to open it. I'm so thankful for all of the ladies at PTC. They have truly become our family.

 

 

Since my mind wasn't in the right place to open the gift there, we did it when we got home. HOLY MOLY! This will hopefully keep Jayen busy when he is stuck attached to a 20 ft cord. Mommy was already trying to think of things that would help make us all stay sain. This was amazing! THANK YOU THANK YOU THANK YOU!!!

Sunday morning ER visit

Jayen woke up this morning around 3:30AM screaming bloody murder. Matt and I tried to console him to no avail. We were taking turns, trying different places to calm him down, at one point I even made him breakfast to see if he was just hungry. By 6AM we were worried! I decided to take him to the Emergency Room. He was screaming until we got in the car. On the way to the hospital he was quiet. I called Matt at the house and asked if he was ok if I just drove around to see if he would just fall asleep. After about 20 minutes and no sleeping, but still quiet Jayen, we decided to get breakfast at McDonald's and take it home. When I tried getting Jayen out of the car he immediately started screaming again. I didn't know if I was holding him stomach and that is what was hurting him. So back in the car we went and back to the hospital we went. The physician was so worried about his pain that he even suggested we do narcotics to help. We did a CT scan on his abdomen, blood work and a unirnalysis. Everything came back normal. After and nap and bathroom, Jayen was in good spirits and back to his crazy rambunctious self. We were discharged with the diagnosis that he has potty training confusion and just needed to pee. This mommy isn't buying it, but we were ready to go home and Jayen seemed to be feeling better. We got home around 11. It was a long morning and I can't wait until naptime! Thanks for all the thoughts and prayers. I'm just hoping he isn't too fed up with doctors yet. We have a long line of them ready for us next week.

Only 3 days?

It is getting harder and harder to predict when th next seizure is coming. Another one this morning. Only 3 days since his last one. We were previously at 5 days. Praying we can make it until October 2nd.

IFSP with BPS

I'm so exhausted and unsure if I can even get the words out I want to. I couldn't sleep last night, my mind kept spinning. I never wanted to upset anyone and I never wanted things to get this out of hand. I simply asked a question and now I feel like I have to defend myself and my child.
At the meeting today we were told there was an opening for Jayen with transportation at Birchcrest Elementary. This is the only school that would have a nurse available to ride the bus with Jayen. There is no openeing for Dalan to attend though. I questioned the Director and tried to understand why they are denying transportation at his current school. I really didn't get an answer at all. I feel like the answers and questions were skirted around and no one could give me an honest, straight forward answer. I was told that if Jayen wanted transportation that the only school a nurse would be available to ride the bus with him would be to Birchcrest. But yet when it came to the nursing care he is currently receiving, they didn't want to put that on then IFSP because it is the nurse's decision to be in the classroom. I finally brought out my research and asked why the bus that currently drives to the school and starts it's day LESS THAN ONE MILE from my house couldn't pick him up. I apparently left the director speechless. All I was told was she was unaware of the bus dropping students off at the school already. I have such a hard time believing this at all. Why would anyone even tell me that transportation wasn't available to begin with if they didn't even check to see if there was a bus that was already going to his school. Why wouldn't they check to see where I live before they told me that a bus wasn't available. And isn't it amazing that they were able to find a bus that goes to another school but didn't even know any of the other information? I'm still waiting to hear back to find out what they determined! This mamma is mad and will fight. I can't believe that this has turned into such a mess. I can't believe that the distric is fighting me on one mile.
I did my student teaching at Twin Ridge knowing that some day my kids would go to that school. I would have been happy with my kids going to our home school, but because the district doesn't have a preschool there they sent Jayen to another school. Now it is their responsibility to get him there.

FINALLY!!!!! I think I was annoying enough to get a call back!

After 9 days of trying to talk to a nurse and figure out what is the next step in Jayen's treatment, I finally received a call back today! When I talked to Carol, we had agreed to start to taper off the Banzel since it isn't working and is causing loss of coordination as well as starting the paperwork to get us admitted. Dr. Frost is on service the last week in Septmember/first week in October. After Carol talked to the admitting office they decided to move the date to give more time to get all the referrals necessary. The next time Frost would be on service would be October 28th. I was so upset. I didn't want Jayen to be in the hospital for Halloween and even his birthday. How unfair is that to him and to our other children. Brilyn is only one, so missing Halloween this year would be so hard. I called the admission office back and the suggestion she gave me was to then move it to November 28th. So I was left with the option of waiting until the end of November or begging to try to get in that first week in October. So I started begging!!!!!! I said I would do all the leg work here and really felt like I could get the referrals done in two weeks. What did I just agree to? I just said I would do all her work if she allowed us to have the admission appointment October 2nd. Let the phone calls begin!!! I made 45 phone calls today, 5 emails, and 6 facebook messages but am pretty sure I got the ball rolling and will have all the necessary referrals completed by this weekend. I'm a little stressed and overwhelmed but so excited to have been able to move this mountain. Minnesota here we come. (Now to try to figure out how to take care of the other two!)

Speaking engagment

I was just asked to speak to a Kiwanis club in Wayne, Nebraska. I feel honored but so increadibly nervous. I have to see if it will all work into our schedule. They are looking for ways to help families of special needs children on a bigger platform. Individual requests for assistance are hard for a small organization, so they are looking for ideas to help more children, more parents, and more families. After talking with the president of the club, I think I have a few ideas. This could be fun!

Parenting a special needs child

I came across a blog today that belongs to a parent of another child that attends the same therapy center as Jayen. I'm floored and can't stop crying at the stuggles we all face having a child with special needs. Her words were so powerful and I felt that they also pertained to my child. Although they have separate needs, they are both special.

"He is 4.  He is not mean by nature.  He is independent and curious.  He doesn't stop once he is rolling with a decision to consider the consequences.  This is typical behavior in a four year old! Children repeat what they hear.  We should all be mindful about what we say and the ears that hear it.  "CHILD'S NAME" is not a mean child.  His hugs are powerful.  His smile magnetic.  His laugh contagious.  He is unsure of his body mass in relation to that of others.  He feels little pain or pressure so seeks out the constant touch and it seems rough.  We work every day on boundaries and gentle touches. ....  Our lives are like the ocean... constantly moving.  It is hard on him and on us ~ none of us in this house know what will happen when morning comes and sometimes we go hour by hour.  And yet we keep going and do our best.   And we appreciate when someone stops and really asks what is happening and what it means and how it is.  We appreciate the non-judging curiosity of how it must be for us.  Because that is how we learned ... we asked."

Jayen looks and sometimes acts like a typical child, but he is anything but! We can't make decisions days/weeks/months in advance. We try to plan activities and outings, but things often change in a very short amount of time. I feel lately like we have let down a lot of family and friends and I am so sorry. I wish I could explain to you how hard life with a special needs child is. I never knew life was going to be like this.

No call back

I didn't hear back from Dr. Frost's office on Thursday, so all day Friday I was very short with people on the phone. I even yelled at my mom and told her we couldn't talk because I was waiting for the doctor to call. She was teasing me and immediately called back after we hung up the phone. Gotta love her! Right?!?!  I took my phone with me and went to work out. I had the music down low and kept looking at my phone to make sure I didn't miss this LONG AWAITED for call. When I returned home Matt and the kids were gone but all the vehicles were still here. I searched the house and still couldn't find them, so I called Matt. Apparently the EXACT same time I was calling him, Minnesota was calling me. It didn't even ring. When I hung up the phone I noticed I had a voicemail. Carol stated she would try me again in just a little bit. I waited and waited and waited. An hour passed and I knew she wasn't calling me back. I ended up calling the after hours doctor to see if they could get a hold of her. This was ridiculous. I knew it was Friday and she wouldn't call me back over the weekend either. What do we have to do to get a doctor's office to call back? This mommy is feeling frustrated! Phone bombing the office on Monday!

Seizure while we wait

I called Minnesota on Monday to talk to them about Jayen's Saturday seizure and to see what the plan is. I talked to Bobbi, she took down some info and was going to talk to Carol and Dr. Frost and call me back (I swore she said that afternoon). Well, three days later and I still haven't heard anything. Another seizure this morning so another call from this mommy. What are we going to do?

Seizure Saturday

We knew it was coming. Another seizure this morning. Jayen had his last baseball game with the Miracle League today too so the seizure came at a bad time. He was not wanting to participate in any of the activities he usually loves. I was in Lincoln at a dear friend's baby shower and wasn't able to help out. I think Daddy has a better understanding now of what it is like to have all three kids and Jayen having a meltdown. He is a trooper and got a few brownie points for that one. Although Jayen was less than thrilled to be playing baseball, he was very excited about getting his trophy!

His brother is pretty jealous, Dalan can't wait until he gets his first trophy.

I'm so thankful for the opportunity for Jayen to play baseball and be a part of the Mircale League. They truly were a miracle to us. Wish we were going to be around to do it next year.

Decreasing Vimpat

Started decreasing Vimpat tonight. Hoping we don't see any increase in seizures coming off of this one. We were also able to order Melatonin in a 3 mg extended release tablet as a prescription. I looked EVERYWHERE for those. Glad the doctor was willing to write the script!

Hurting for me and my child

What a horrible couple of days this has been. I have been battling with Bellevue Public Schools over what started as a simple question. I apparently opened my big mouth and started something I can't take back. I emailed our services coordinator about checking into transportation for Jayen. It has just been so crazy driving 40 miles everyday to get the kids to and from school, Jayen is in underwear all day long so that hour between drop offs is scary, and Jayen is now eating school lunch (which he previously wasn't able to) so riding the bus seemed to be an option again. The services coordinator suggested it didn't hurt to ask and that I should talk to the teacher. Apparently it does hurt to ask. It seemed that it was suggested that if we wanted transportation for Jayen then we would have to move schools. After all the mess we went through last summer trying to get the boys into the same school, now I have to consider moving them. ARE YOU OUT OF YOUR MIND?!?!?!?! Am I out of my mind? After emailing the teacher again and explaining how we ended up at Bellevue Elementary, I think things really hit the fan. The teacher emailed back stating she would check into the situation. Then I received a call from the services coordinator again. Apparently it would be better received if the information came from her. It seems that the powers that be have decided we can leave the kids at the school and provide transportation ourselves or we can receive transportation (for JAYEN ONLY) if we move him to a closer school. No one knows what school would have openings, if Dalan can transfer too, or anything. I'm so upset!!!! Dalan has an IEP scheduled for September 11th. So if I decided to move them then what happens to him? Jayen for the first time today, went potty in the toilet for the staff. If we move him, how is that going to impact him? Will he receive nursing care at the other school? If he doesn't receive nursing care, then he can't do lunch and can't ride the bus, so we just got nowhere. I absolutely feel like my hands are tied. I knew that Dalan wouldn't receive transportation because I opted him into the same school as Jayen. This stupid mom wanted to support one elementary school, go to one school for parent teacher conferences, participate in one PTA, volunteer at one school, attend one schools after school activities...STUPID MOM!!! I never suggested this school. I didn't even know it was there, but now that my kids are there, have made friends, are starting to get comfortable with the staff and their surrounding, I should move them. Crying myself to sleep tonight. Some day, having a child with special needs will get easier. RIGHT?

Goodbye vroom vroom

In order to prepare for the upcoming move, Daddy has started selling off his lawn equipement. This is such a sad decision, but in Arizona there is not a need for lawn equipment when there aren't many lawns! We keep teasing him that we are going from having a lawn mowing/snow removal business to a place that has no lawns or snow. When the day came for the biggest of lawn mowers, and Jayen's favorite, to be sold, it was a sad day. One last drive was needed before Jayen could part with it! Daddy might have taken it a little too far, they were doing wheelies and 360's in the street, but he had fun! 

 

Inevitable

After such a long crazy weekend, we knew it was coming. Seizure morning. Jayen's home from school today. Guess the house will be a mess for another day ;)

Epilepsy Walk

Another early morning. We registered Jayen's Journey for the Epilepsy walk again, but had a much bigger team this year. What a day of emotions! I was blown away by the amount of support we had for Jayen. I would like to personally thank...

Grandma and Grandpa Kuchta; Allissa Kuchta; Tom, Tanya, Madison, Hunter, Morgan, and Brooklyn Kuchta; Tyler and Ryot Kuchta, Sara, Timothy, and Killian Schank; Grandpa Hochstein; Adam Hochstein; Theresa Hochstein; Nikki and McKenna Dorn; Mike, Renee, William and Mallory Loftus; Josh, Michelle and Caleb Joslin (part of Jayen's Journey for the second year); Jason, Rikki, Grant, and Aubrey Hayek (also part of Jayen's Journey for the second year); Mary Hayford; Marie, Brianna, Stephanie, and Melanie Thomalla (who came all the way from Minnesota to be here to support Jayen and their brother who passed)

If my count is right, that is 40 people who walked in support of my child!

I'm so thankful for all of them! What an amazing honor it was to have them all there.

 

Shortly before the finish line we all stopped and let our balloons go. We were letting Jayen's seizures go with them. Hoping they send our prayers to heaven and we never have seizures again.

After letting the balloons go, we were asked to let everyone go ahead of us so that they could cheer for Jayen as he crossed the finish line. We walked for a little bit as a family, then everyone started chanting Jayen's name.

We let him go and he ran across the finish line. I couldn't stop crying. I'm so thankful for everyone and everything they did.

 

We love our little miracle and hope that some day we will find a way to stop these horrible seizures.

 

 

Another new medicine

Started Banzel today. Hope this gives us relief, at least for a little bit.