Happy Halloween!!!!

I was very excited for Halloween this year. Jayen has been better about social situations and seemed to not be as scared about the decorations as years past. I programed his Ipad so he could say "Trick or Treat" then it jumped pages and he could choose from "Thank You" or "Happy Halloween". I was so impressed with him and using the Ipad. There were even a few times we asked Brilyn to say thanks and Jayen was right there saying it for her. It was too cute!

 

Jayen dressed up as daddy! Ok, well it was daddy a few years ago. I found him a flight suit and we had a name tape made for him. He loved the velcro on them and we had to constantly put it back on.

The kids were a little tired by the end of the night. This was the best of the pictures. Brilyn is crying, Dalan is half asleep and Jayen is zoned out. I guess that means it was a success!

Not sure I will sleep tonight

Tomorrow is supposed to be the day the surgical conference is meeting to discuss the possibility of Jayen having brain surgery to remove his polymicrogryia. I am not ready for the answer, but I am anxiously waiting for the answer. Tonight I had a very disturbing conversation with a very curious and worried brother. Dalan must have overheard us talking about Jayen and the possibility of surgery. He asked me if Jayen was going to have it or not. I told him we would have to see tomorrow, but wasn't sure if he really understood his own question. When I asked him if he knew what surgery was, he shyly answered no. My response might have been overwhelming. The doctors want to cut open Jayen's head and take out part of his brain that isn't working. His eyes brows raised and his eyes started to gloss over. It took him a couple minutes to ask the next question. I wasn't prepared for what he was going to ask. "Mommy, is Jayen going to die?" Oh Shit! Where do I go with this answer? How do I teach a 6 year-old the complications of surgery? Do I even tell him that is a possibility? My answer just spilled out of my mouth and I'm not sure my brain even put it all together. I responded that and surgery has complications and some people could die from surgery, but Jayen has great doctors and they are confident they can help Jayen without letting him die.
I'm so worried about our decision. I'm so worried about the outcome. I'm just so worried. Not sure I'll sleep tonight. Hope they call tomorrow!

What I just witnessed!

I really do think a part of me dies every time I have to hold my baby's lifeless body while he is having a seizure. Today what I witnessed was just as heartbreaking both in a good way and a bad way. I'm sure I just witnessed my 16 month old starting to understand what is happening to her brother. For the first time, when Jayen was having a seizure, Brilyn came over and repeatedly gave him kisses and rubbed his head. She wasn't leaving his side. I had never seen her like this. She is usually good about keeping her distance from her brother since he is often rough with his touches. I teared up both from the seizure and from her response. I'm sad that this has to be a part of her life too. I'm made that it has to be a part of Jayen's life.
Waiting for the call next Tuesday that will hopefully give us some more answers!

waiting, waiting, waiting, keep waiting

AHHHHH! I don't know how long I can continue this buildup. I have waited for a call back from the doctors office. I made sure not to bother them this entire week in case they didn't get to his case until yesterday. I called in the evening and again today just too see what the response finally is. Are we doing surgery? What is in the cards for my baby? Well, apparently all I get to do is wait some more. They had to cancel the surgical conference today because they didn't have enough doctors available. Now we have to wait until next Tuesday. I'm not a patient person and this stress is killing me.

Kiwinas

I gave my first public sppech about Jayen and our journey today. I felt very welcomed by the Kiwanis club in Wayne, Nebraska. I was also completely humbled by the presence of some of its members. There was a tornado that went through their community a few weeks prior. One of their member's home was torn in half. I actally took a picture of it on my way in to town. I was humbled by the fact that their community was facing this diffucult time, but they were all still coming together to help others and to listen to my story. I think I should have brushed up on my public speaking skills. I was very nervous and tried to not read everything word for word, but when I started choking up I had to just read.
 

Hi, My name is Nicole Hochstein. I am the mother of three beautiful children. Dalan 6, Jayen 3, and Brilyn 16 months. I am a military spouse to Mathew Hochstein.

On March 21^st, 2010 My husband left for a training mission. On March 22^nd we had to ask him to come home. My son and I were laying on the couch taking a much needed nap. An hour into the nap, Jayen’s arm started hitting my side. My four month old was hitting me repeatedly. I knew immediately something wasn’t right. I called a friend to come over and watch Dalan while I took Jayen to the emergency room. I don’t know how I knew, but I knew in my mind it was a seizure. In the ER, Jayen had another seizure in front of the doctors. He was put on Phenobarbital. My first experience with this medicine was in a roommates dog who had seizures, and now I was giving it to my child. We were admitted to the hospital. No one could give me any answers, and the doctors weren’t even sure he was having seizures. I felt like no one believed me. A couple days after getting out of the hospital, Jayen’s seizures started occurring in clusters. I called and called and was just told to increase his medicine. I finally took things into my own hands. I got out our video camera and sat infront of it until I caught what I suspected as a seizure. I emailed that video to everyone I knew who I thought could help. I finally got someone to listen!!!! Jayen was again admitted to the hospital. This time the prognosis was DEVISTATING! Jayen was diagnosed with a catastrophic form of epilepsy called infantile spasms. We were started on a very strong steroid called ACTH. Jayen eventally became seizure free and continued for 9 months. But slowly those damn things returned. We tried a few more medicines and eventually found another combination to stop the seizures. Jayen was once again seizure free, but this time for one year and four days. Three days later our daughter was born. 2012 has been one hell of a year for our family. We have tried over 15 different medicines in hundreds of combinations and have been unsuccessful in controlling his seizures. This has been a very lonely struggle for our family. I think we have ruined relationships with pre seizure friends, our family often seems sick of hearing all of Jayen’s medical drama, and we feel like we can’t do “normal” family activities that others families are afforded. I write a blog for Jayen. Some day I want him to be able to see how strong he has been. Some day I want to see how strong I have been. I recently discovered another mom’s blog. Our children have very different diagnosis’ but we share something very similar. I would like to share a portion of our blogs.

 Friday, September 13, 2013

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.

Through our entire journey I have found the most important resource to my family has been other special needs families. When I got Jayen’s IS diagnosis I immediately researched everything I could. I found a support group and learned the organizer lives less than 20 minutes from my house. I connected with him and he connected me with another mom in my community. Shelley Gillen has been my rock and saving grace. I can call her at 3AM crying and screaming and asking her what to do. I have since been able to pay it forward and help another mommy. As of two weeks ago though, I have had to start my search again when Jayen received another diagnosis. I have used the connections I have already made and have been able to learn so much in the last two weeks. I am now confident and ready to take on polymicrogyrias. I know that I have so much support behind me and if I wake up in a panic at 3AM I know where to turn, I know someone will listen! I wish that for EVERY special needs family.

 

I really wanted to share my ideas of how to get people together. I hope they took them to heart and will try to put some into practice. You don't have to have all the answers, but if you can find a friend that has already started or gone through the process then you have found an enormous resource. I'm so happy I was given this opportunity and I hope I can do it again.

Sleep well tonight?

Tonight is our first night with the pulse oximeter. A nurse from home health stopped by today to show me how to work it. (I'm pretty sure I knew what I was doing. In the hospital I wouldn't let the nurses put it on Jayen. I did it when he fell asleep!) The only thing I am worried about is the instructions I was given to change the sensor placement every 2-4 hours. I thought this was supposed to help me sleep better at night, not keep me up all night long.
I think I kept the nurse a little longer than he was supposed to stay today. We got to talking about why we were getting the oximeter. He said it is usually only for people who are on oxygen. When I told him about Jayen's seizures he seemed too knowledgeable about the subject. It turns out his wife has seizures. She was in a car accident a few years ago and has scar tissue on her brain causing the seizures. When he met her she was a very prominent member of society, she had a great job, and now he can't leave her alone at all. It really made me think about things in a long term for Jayen. I never thought about how things will be for him as an adult. If his seizures aren't controlled he will not be able to drive, if they aren't controlled will someone have to be near him when he showers, will he not be able to have any time alone? The nurse said he only left his wife alone once. He was on call and had to leave. She had a seizure while he was gone, but thankfully she was on the phone with a friend. The friend called him. I can't imagine never being able to leave him alone. I know he is only a child and that is my job, but to marry into that. Will anyone want to take that on? Will he ever get married?
It was so nice talking to him. It was so nice having someone who truly understands exactly what you are going though.

Hope the machine works tonight. Hope it doesn't wake up Dalan. Hope I can sleep peacefully tonight.

Caught in an awkard position!

Today was pajama day at school for Jayen and his classmates. They worked towards putting all the pieces of Mr. Potato Head together with their good behavior and when he was completed they earned a pajama day. I think mommy needs to start a Mr. Potato Head project at home, but when he is completed I have to wear something other than pajamas!!!!
I really didn't plan on sending Jayen to school in the pajamas he wore at night, but it wasn't worth the fight to put a different set on him this morning. He loved his ninja turtles ones and didn't want silly polar bears. I was out of our normal routine when I didn't change his clothes so I completely forgot to take off his pull up and put underware on him. Sitting in the parking lot of school it dawned on me. So we quickly tried putting some underware on him before anyone noticed. That didn't work so well!!! We were caught with our pants down, LITERALLY! Jayen's teacher was walking out the door to talk to me about scheduling his IEP. She walked right up to the car door and saw exactly what we were doing. Sorry for the indecency Ms. Shank!
Oh the joys of having kids!

 

Up, down, up, down hopefully things will turn around!

After retuning from Minnesota I have been working on getting back to everyone and completing everything on my to do list. One thing was to get back with Mrs. Lucas from Bellevue Public Schools about transportation. When we left we were told that they figured out the bus but were just trying to find someone to ride the bus with Jayen. They wanted us to meet with the nurses to talk about what exactly was needed for Jayen so if things changed while we were gone then we could find an appropriate person to handle the situation. Mrs. Lucas wasn't available when I called so I left a message. I was taken back when someone else called me back and stated that they couldn't find anyone so they would once again transport him to a different school, but wouldn't be able to transport to his current school. WHAT!!!! I was already given his pick up and drop off times and now you are telling me you can't do it again. What a roller coaster. I was quite heated.
Later that day, I received a call back from Mrs. Lucas. I'm not sure what changed again, but now I was informed that the school was given permission to hire a part time position to ride the bus with Jayen and stay with him during the school day. We would have to wait through the hiring process, but everything would be worked out. I guess we will wait to see if anything changes again. I am at the point where I will believe Jayen gets to ride the bus when he is actually sitting on the bus! This roller coaster ride is making me sick and just want off!

Peace of Mind

Seizure morning again. Daddy was still here so I had a little help. I'm just so worried that we are having these things in the middle of the night.
Met with Dr. Toth today to update him on everything we learned in Minnesota and just talk about it. I always feel at ease with him. I really feel like there are no dumb questions. I brought up my concerns about seizures at night. I just don't if Jayen is having seizures at night or if what happened in Minnesota was a fluke. I'm really worried and am having a hard time sleeping at night. The pulse oximeter seemed like a great tool to have. When having a seizure, typically, heart rate increases and oxygen decreases. The monitor would alert me at night if either of these occurr. Is that something we can get at home? I would love the peace of mind! I would love to know if we are having seizures at night. We have a video monitor that I often stare at until I eventually fall asleep, but it doesn't wake me if something goes wrong. Dr. Toth thought that was a great idea and was checking into it for me.
Trying to pass the days until we hear from the surgery board. I'm also trying to make sure I let everyone know that needs to know. A few more calls today.

Spinning spinning round and round

I have finally had the opportunity to sit down and do a little more research on our new diagnosis. Not sure I understand anymore than I did when we left, but I feel like I could explain it better to someone else now.
I'm a member of three different PMG support groups, I have singed up for a couple newsletters, and have asked for a family who also has a child with PMG to contact me. Yeah, probably a little too much but I want to be prepared.
I think I need to leave the computer and google alone for a while!

Mommy has PMS, Jayen has PMG, and Daddy is just PO'D

We woke up this morning knowing that the results of the MRI should be in and that we could finally go home. We went to Minnesota to hopefully figure something out, to get some answers, but I think we left with more questions!
Dr. Arkilo came in this morning with the results. They were pretty shocking and exciting at the same time. The MRI found an abnormality in Jayen's brain called a polymicrogyria. Poly meaning many, micro meaning mini, and gyri meaning surface of the brain.

 

The 3T MRI found a portion of Jayen's brain that has "many small folds". I'm so thankful we rescheduled the MRI and were able to get the 3T. I don't know that we would have found it otherwise. With Jayen only being 3 and the magnification of a regular MRI we could have missed it again.
There is a possibility now that we can actually resect that specific part of the brain and HOPEFULLY stop the seizures. I am so scared of this option, but so hopeful. Does this mean that Jayen could potentially be seizure free? After just having that conversation the other day about how that probably isn't an option for Jayen anymore. Because he is young enough, does this mean he could potentially live a "normal" life after this? So hopeful, but so scared. This is actually cutting open his skull and taking out part of his brain. AHHHHHHH!
Dr. Arkilo will present all of this information to Dr. Frost and it will all be presented to a surgery board at a surgery conference. The board will have to decide if Jayen is even a candidate for surgery. If not, then we will be playing with meds for the rest of our lives. If he is, then we will have a ton of tests we will have to complete. We would have to go back to Minnesota and watch a bunch of seizures. In order to see all these seizures, they would take him completely off of meds. How scary and life threatening. Jayen is already in danger of status epilepticus (meaning he wouldn't come out of a seizure) so taking off meds completely really scares mommy. He would also have to do an MSI, which is a combination of the MRI and an EEG. The doctors have to pinpoint exactly where the PMG is located. We would also need to know if this is the point where most of Jayen's seizure activity is occurring. If he seizures aren't even coming from this part of the brain then there would be limited benefit to taking out the PMG.

I think I am on acronym overload right now. I will try to do a little more research when we get home. Just want to leave this place and see the rest of our family. Really missing Dalan and Brilyn!!!

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!