We have a date!!!!

FEBRUARY 26th, 2014! This is our D-day! We will probably have to go up a few days prior to do a History & Physical and some labs, but this is the day they are scheduled to do surgery. Matt is scheduled to leave us February 14th, so we are working on begging the Air force to keep him here a little longer. Now we just have to start working on a schedule for everyone; who is going where with who and how long!

My biggest ally or biggest critic?

I'm really struggling with this one. For a second time now, I have heard through the grape vine that someone I think should be one of our biggest allies thinks we are failures as parents. Apparently all we do in this person's eyes is yell at Jayen. We are constantly correcting him and he/she feels this will affect our other children. I don't even know where to begin with this information. Of course this affects our other children. There may be some negative, but there are so many positives as well. They will be affected by Jayen and his disability for the rest of their lives. They are loving and more understanding about others around them with disabilities! They are less judgmental. They understand the work and patience it takes to have a brother like theirs. Someone I feel should be on our team, on our side, is talking behind our backs and thinks we are bad parents. I was so furious. I really think a sit down is in order. I would like to be able to share a day in the life of the Hochstein house. Please walk a mile in our shoes before you start to beat us down. Jayen is a handful!!!!! This is a understatement!!! We gave Jayen the nickname Mayhem because what can go wrong will go wrong with him around. I constantly have to keep an eye on him to make sure that he is not hurting himself or others. His pain receptors do not work the same as yours or others. He doesn't understand how hard he hits. I am also doing my best to teach him boundaries. He is not allowed to play with glass figurines that are left at a child's eye height. He is to respect other's property. He is not allowed to throw things when he is frustrated. And YES by all means to I get frustrated with him. Even the state of Nebraska believes that we deserve a break so that we can be a better parents. We are provided respite, but I am so scared to use it as Jayen will be left with a complete stranger. Will they be able to help teach him? Will they be able to watch him at the same time as my other children? Instead of criticizing, would you PLEASE stand up and help. I am not above advice, but I am beyond done with back talking and criticizing!

We did not ask for this gift, but we are doing the best job we can!

HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above-
"This special child will need much love.
His progress may be very slow,
Accomplishment he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
So many times he will be labeled
'different,' 'helpless' and 'disabled.'
So, let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they'll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven's very special child."

Increased Ritalin

Ritalin has been going well, I think. I haven't really noticed a huge difference. After talking with Carol from Dr. Frost's office yesterday, she suggested we increase the ritalin. I guess we will try it for the weekend and let her know on Monday. The first day didn't go so well. I was crying all day long. This really wasn't my baby! He was zombie-ish and just out of it. I don't think it helped that it was a seizure day. I promised I would give it a weekend so we will see how tomorrow goes.

Anonymous

When we were home last weekend, mom said there was a letter in the mail for Jayen. It looked like a Christmas card. She didn't open it. She just saved it for us. I wasn't sure what it was or who it was from. I opened it and was completely blow away. There was a beautiful card filled with beautiful words and signed Anonymous. Anonymous wrote that he/she was a retired special education teacher, had come across my blog and had been following our story for a while now. He/she felt that in the Christmas spirit it would be a great time to "pay it forward". I'm so overwhelmed with this gesture! I can't believe that someone would do something like this.
I just want to say from the bottom of my heart, "Thank you Anonymous!"
I have a sneaky suspicion we have actually met once before!

Happy Birthday DADDY!

Today is daddy's birthday!!!! We had a great day celebrating. We started the day at Bass Pro Shops. Daddy got to shop around while we waited for Santa. After our visit with Santa we took daddy to Hooters to eat. The wings were great ;)

We went home, took naps, then were ready for more fun celebrating with dad. Our favorite family activity...BOWLING!

 

 

Mommy beat everyone! But we all loved to play no matter who won. (Pretty sure daddy threw the game so Dalan would beat him!) We had an awesome time! I'm so glad we were able to spend the time together as a family!

I taught Jayen how to sign the Happy Birthday song! He wasn't so happy about doing it for the camera.

Should we or shouldn't we?

We have been really concerned about starting Jayen on ritalin. It just wasn't anything we wanted our four year old to be on, but we understood why it would be helpful. I think what finally tipped the boat and made us start was thinking about how calm and still he will need to be after surgery. We wanted to try it at home before we sent him out with others. Christmas vacation was the perfect opportunity! We started Jayen on 5 mg today. We'll see how this goes!

Silly little elf!

Our elf Blitzen was up to no good once we returned home. Only a couple more days then Santa has to pick him up again. What a great time we have had having him at our house.

It's Tuesday!

For months now, I have to share the same information with eveyone who asks how Jayen is doing...I'm waiting for them to call me back. Even once we get a little information, but I still have to wait for that next phone call. Well, once again Jayen was presented to the surgical conference. I really thought this was a waste of time. If there was nothing that showed up on the PET scan, then why would they proceed. I guess I was just waiting for the phone call so we could move on to the next option. At 5:08 last night, the phone rang and some differeing information was shared. Jayen was still a surgical candidate. My mind was blown. I'm sure the nurse was getting upset with me after asking over and over again if she was sure. I was overjoyed!!!! I knew that VNS was our next option and I was disappointed because it didn't offer much hope in seizure reduction, VNS would reduce the duration of his seizures. But surgery could give him such a better outcome!

The next step would be focus mapping Jayen's brain. This information from Children's Hospital Pittsburg lays out what and how it is done.

Epilepsy Focus Mapping

What is Epilepsy Focus Mapping?

Epilepsy focus mapping, sometimes called brain mapping, is a surgical procedure in which surgeons place subdural grids directly on the brain to “map” the precise location of the source of the seizure as well as functional areas that control speech and movement. Once the focus of the seizure is identified, it can be removed during a procedure called focal cortical resection.

What to Expect Before Epilepsy Focus Mapping

Children are given a general anesthesia prior to the surgery. To prepare for the surgery, part of your child’s hair will be shaved.

What Happens During Epilepsy Focus Mapping?

An incision will be made and a craniotomy will be performed (removal of a piece of the skull that will be replaced at the end of the surgery). A subdural grid, which is a thin plastic strip with a series of electrodes embedded in it, is placed directly on the brain. Once the subdural grid is in place, the skull is closed. The cables from the grids will protrude from child's skull so they can be attached to a portable video EEG.
Your child will be in the Intensive Care Unit (ICU) overnight or until he or she is medically stable enough to go to the Epilepsy Monitoring Unit (EMU). While still in the ICU, your child will be observed continuously and blood pressure, pulse and respiration will be checked frequently.
Your child will then be moved to the Epilpesy Monitoring Unit, where his or her brain activity is monitored 24 hours a day. The epileptologist can then begin the brain mapping procedure. In epilepsy focus mapping, electrical currents stimulate portions of the brain via the subdural grids. The epilepsy doctor will monitor the child's movements and language to "map" the location of these important functional areas of the brain. The epilepsy surgeon then knows to avoid these areas during surgery.
The length of the epilepsy focus mapping process depends on how much brain tissue is targeted for surgery.

What to Expect After Epilepsy Focus Mapping

Once the epileptologist has enough information about the child's motor and language function from epilepsy focus mapping, the second part of this procedure, focal cortical resection, will be scheduled.

Potential Complications of Epilepsy Focus Mapping

Every surgical procedure has associated risks, including infection, bleeding, and accumulation of water in the brain, called cerebral edema. The main risk associated with epilepsy focus mapping is that a seizure may be triggered. If a seizure occurs, the epilepsy doctor will stop the electrical stimulation until the child has fully recovered.



This is going to be such a roller coaster ride for our family. This requires a three week stay in the hospital. This is also during the time Matt is to be deployed. We are unsure how our family will make this work, but we know we will. Thanks for your prayers! I know they work!!!!

Christmas card pictures

I was trying to get Christmas cards ready to send out and realized I didn't have any recent pictures of the kids. I found some cute letters at Target and thought it was the perfect opportunity! The kids weren't so thrilled, but I think they turned out pretty good.

 

Annoying enough?

Two messages yesterday, two today, finally a return call! Not what I was hoping or excepting to hear. Once again, another test for Jayen has come back freaking NORMAL. How in the hell is his brain normal but still having these seizures? These results are so painful. I really was so hopeful for Jayen and his future after surgery. I really thought this was his chance at a normal life.
Dr. Frost wants to present Jayen once again to the surgical conference. They are supposed to meet this Tuesday. I'm not sure if this will be the same as last time and he gets pushed off for weeks. I am not sure why the presentation is needed, but I guess we will continue to wait. Carol couldn't answer all my questions and continued to tell me that we would know more after the conference. Second option for Jayen would most likely be the VNS. Although this sounded like an ok option, I'm very disappointed that surgical resection is out. The VNS could help with the length of his seizures, but isn't going to stop them completely.
I will continue praying and trying to wait patiently, but am trying to be realistic. Very sad and upset mommy!

Bus Bus Bus

After so much anticipation and hard work, Jayen got to ride the bus today!! He was so excited. I couldn't stop smiling at the smile that was plastered on his face. He was grinning from ear to ear from the moment the bus rounded the corner to the second I saw him drive off.

What a big man. I can do this mommy!

I love that the bus has a seat belt!

Of course mommy couldn't just let him drive off. I had to follow the bus to school. I promise not to do this everyday!

 

Jayen was so excited to show daddy his bus. I see that smile again. I think this is going to be such a good thing for Jayen!

Santa Day Camp

I had always wondered if a day camp would ever be in Jayen's future; he is only 4, he isn't potty trained, he doesn't have any verbal communication, and his seizures are always a possibility. We came across this great opportunity for the boys to go to a Santa daycamp. I had to fill out a 14 page interview about Jayen to make sure they were prepared. I was so worried!!!!

When we got there, Jayen was so excited to play he ran away before we could say goodbye. Dalan was a little less thrilled about being there. He didn't want us to leave. I felt so horrible. We were just gone to Minnesota and now we were leaving him again.

I knew they would have a great time if they just gave it a little bit. When we went back to pick them up they were all smiles. They performed a Christmas song and we ate some goodies, then we got to see the big man again.

 

 

 

 Santa was so nice! He even laughed when Jayen pulled his beard.

 

I'm in love with this picture! How cute! I love my family!

Family and Friends Loftus Christmas

We weren't sure if we were going to be able to make it or not since our appointment got pushed back, but we were so glad things worked out!! Can't thank you enough Renee, Mike, William, and Mallory for inviting us to your Christmas party!

 

There was a special visitor at the Loftus house! Santa stopped by and handed out presents to each of the kids. I was worried Jayen was going to be a little hesitant, but he had no problems.

 

The kids loved their gifts from Santa!!! We had such a great night!

What a freaking day!

Last night we got a call from St. Paul Radiology about changing our appointment time. They wanted us to come in at 9:30 instead of 8:30 and they would be doing the scan at 11 instead of 10:30. I asked how the changed his eating orders. I knew he couldn't eat so many hours before but I didn't know what it would change. I was informed that Jayen could eat solids up until 6:30 AM. I asked again if she was sure of this. I was assured that they only needed 4 hours before the procedure.

We arrived at 9:00 only so we could keep Jayen away from the food in the hotel room and didn't really have anywhere else to go. We kept Jayen busy in the waiting room and stayed sane by switching off. Eventually EEG arrived and we were able to get the wires on.

 

 

After wires, the anesthesiologist came in to talk to us. He talked us through his portion of the test and made us feel comfortable with the sedation they were using. He went through his checklist and eventually came to the question asking us what time he ate last. When I told him he started eating at 6 and was done at 6:30 he stopped dead in his tracks and said, "You're kidding me!" Well apparently whomever told us that Jayen could eat 4 hours prior didn't consider the face that he would be put under anesthesia. We were informed that he needed EIGHT hours with no solids. We weren't going to be able to do the procedure. He left the room and was going to try to figure something out. I immediately started crying. I had the instinct that this wasn't right and I should have trusted that instinct. He eventally came back in the room and said they could do the scan at 2:00 since that would be the eight hours. I was so upset. We were really hoping to head home tonight. I miss my other babies. We really didn't have any other options but to wait.

We were given some pillows and warm blankets and a movie. Thankfully it was close to naptime and Jayen was able to take a quick nap to pass the time! When he woke up we did all we could to entertain him for the duration. He about destroyed the room. I think they heard him bouncing off the wall and came to get us a little early.

He was happy at first, but things quickly turned sour!

 

I wish we would have remembered his IV doll and had the Ipad lady we had last time to talk to him about the process. It wasn't as bad as it could have been. I'm so proud of him. He is such a trooper.

 

When it was time to lay down and start the injection, Jayen started getting very upset.

 

They actually had to start the sedation early since he was so upset.

 

This is my least favorite part. I cry every time. Nothing hurts more than watching your baby screaming then eyes rolling back and being out of it.

 

 

We were told the first 30 minutes were very important. As soon as they inject the dye, the room needed to be dark and quiet. Jayen was not supposed to have a lot of brain activity during this time so the dye is able to be metabolized. There were others in the room who didn't seem to think it was as important. I was very frustrated the entire 30 minutes. I at one point even shushed the professionals in the room. After the scan we had a few more issues with EEG trying to take off the electrodes. Mommy made them run to get solvent since they were just trying to pull them off.

Finally this was over and we could leave. Now we just have to wait for results!

I'm not good at waiting and being patient!

Follow-up with Frost

This morning we had our follow-up with Dr. Frost. We weren't really sure what to ask or what to expect since it has only been two months since we last saw him.

 

Jayen found a new water fountain to make wishes in. Mommy remembers when we started this journey at Children's Hospital in Omaha. Every time we went to the hospital Dalan would throw money in the fountain and say, "Make my brother all better." We even had a wishing well at Jayen's first birthday party to honor this tradition. So, when it came to this fountain we spent a little extra time just being there!

 

Dr. Frost answered our few questions and gave us some ideas of what to expect for a couple different scenarios after the PET scan tomorrow. We are unsure what Jayen's future holds. Our concerns about his impulsive behaviors were addressed. Dr. Frost talked to us about putting Jayen on Ritalin. I'm so not sure what to even think about this yet. Obviously the stigma about the medicine is in my mind, but I know my son and I know how off the wall crazy he is. I think we are willing to try it, but it is still a discussion we need to have.

We left the appointment with a new prescription and instructions to increase his Onfi. Tomorrow is the PET scan and hopefully a few more answers.

 

After the appointment we had the rest of the day to play! Every time we drive to Minnesota we are stuck in the hospital or only have a short amount of time and can't enjoy our time. Today was different!!!! We took full advantage of our time!

We had lunch at the Rainforest Cafe!

And made sure to order dessert!!! Dirt pudding with a few worms!

Since we only had one kid we were able to afford an all day pass. And we took full advantage of that too. I can't even count how many times we rode the rides. My feet hurt from just chasing after Jayen!

He obviously need driving lessons!

We happened to be at the right place at the right time. Santa was walking through the Mall and walked right beside Jayen. His face was priceless!!! He even scored a high five.

Mommy and daddy got to enjoy a few of the rides too as a chaperone. We spent the whole afternoon riding the rides from lunch to dinner. Dinner was so interesting. Mommy suggested we try Dick's. Jayen fit in so well here. He could scream and no one stopped to stare. He could throw his food and make a hug mess and he fit in with the rest of the crowd! We all enjoyed the sarcastic humor and had some good laughs!

How fitting!!!

Jayen's had said For Sale. I totally agree, but I'm sure it wouldn't last long. They would eventually return him! Love my Mayhem!

Mommy and daddy sporting our Infantile Spasms shirt! When we got back to the hotel we swam for a little bit then enjoyed popcorn and m&m's! Loved my day with the boys. Nervous for tomorrow though. With all the fun we had, it was still always in the back of my mind.

Packing again

Packing our bags for yet another trip to Minnesota. This trip somehow seems very different than past trips. I don't know why I sense something very strange. I can't tell if it is a good sense or bad. I'm so nervous for this procedure. Jayen is scheduled to have a follow-up with Dr. Frost on Wednesday then his PET scan on Thursday. I have the feeling that this is the beginning of a very long road. I don't know why I keep feeling like it is the beginning since we have been on this crazy journey for almost 4 years now. Very nervous mommy! Hope this provides some more answers and less questions.

Hello Christmas, Goodbye Halloween!

We try to set up the tree Thanksgiving weekend, but things don't always happen the way we plan. This year we made each of the kids place their yearly ornaments on the tree. We took a minute to put them in order from their first to their last. It gave each of us the opportunity to reflect on the years :'( Oh how fast they are flying. I really loved doing this. Hope we do it again next year.

 

 

After the tree was put up, we decided to "take down" the Halloween decorations. Might as well do it in a fun way!

What goes up....Must come down!

 

1...2...3

Brilyn couldn't stop giggling long enough to push her pumpkin off. She needed some assistance.

Even Grandma Hochstein got in on the fun. She stopped by and saw what we were doing and wanted a turn as well.

Jayen wasn't so fond of getting up on the ladder and pushing it off so we improvised! It still smashed!

Dalan couldn't get enough! He wanted to do it again and again.