No more monkeys jumping in the tub

 Mommy and daddy tell him constantly not to jump in the tub; one - because he always makes a big mess and two - because you could fall and get hurt.
Well I think we did both! Jayen jumped in the tub and hit his head on the side. It immediately bubbled up and turned black and blue. Daddy tried to get him to put an ice pack on it but I think they both got bored with it and decided to sleep instead ;) ALWAYS SOMETHING!

 

RED LIGHT!

What a horrible horrible horrible (and I might add no good, very bad) night. Jayen was up ALL night long. He is on 3mg of melatonin (an adults dose) and still isn't sleeping through the night. So, of course, what happens this morning? A great big ol' seizure.  It had been two weeks since the last one and I really thought we were on a better path. Mommy is so exhausted. Physically, emotionally, mentally, and whatever else you can think of. This has to stop! Jayen's seizures and all his medical care is killing me. Then on top of it I have to jump through hoops for the doctors because of Brilyn's weight. I just have small babies. And to top it all, I have to see an edocrinologist on Friday for my thyroid. I'm scared shitless and really just need to leave my life for a little bit and come back refreshed.

Family pictures

 We had our family pictures taken again! What a beautiful family I am blessed with.

 

no more weaning

While trying to wean off the vimpat we have sprung a leak. Jayen has been having seizures almost every three days. They are horrible and lasting longer each time. Dr. Frost's office advised us to go back up on the vimpat to 25mg in the morning and 50 mg in the evening. This is nearly back to our original dose. I'm ok with that if it means we get these to stop or even slow to where we were before. This is ridiculous!

Got this from the mom I met in Minnesota - quite fitting!

The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
...

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter.
"This one gets twins.
"This one gets a son.
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

 

I know He doesn't give me more than I can handle, but I often question why I was chosen.

Weaning off Vimpat

Our weaning process is not going well. When we left Dr. Frost's office, he wanted us to start taking Jayen off the Vimpat and Klonopin. We started with the Vimpat by half pill once a day. On the 14th we were 1/2 pill in the morning and full pill at night. Then on Monday the 19th and every proceeding Monday we decrease another 1/2 pill. Jayen's last seizure was on the 13th (the day we were in to see Dr. Frost) but since starting the decrease He has had one on the 18th, 21st, and 24th. I just don't know what to do. Still waiting to talk to the nurse and see if we continue with the decrease. I hate waiting!

Yet another

I'm still waiting to hear back from Dr. Frost's office about Jayen's seizure on Thursday but now I have to update them on the one he had this morning as well.
A horrible night followed by a horrible morning. Brilyn woke up in the middle of the night crying. I went to check on her and she had puked everywhere and was laying in it face down. It was so scary. I screamed and Matt came in to help. We cleaned her up but I was too scared to let her sleep in her bed. So she slept in our room and I slept with one eye open. A little later Jayen woke up screaming, but when we went in to check on him he was fast asleep. I don't know what happened but this morning when he woke up he had another seizure. Thank God we are headed to Minnesota next week. We need to get this figured out!

3 YEARS OLD!

I can't believe my baby boy is 3. Where has the time gone? Yeah I know, it has been spent going to doctor after doctor, occupational therapy, speech therapy, physical therapy, ER visits, public school visits, and appointments galore. It has been the craziest 3 years of my life, but I wouldn't trade you for anything. I love you little man!

Sixth Diastat

It has been two weeks since Jayen's last seizure. I have been waiting for this one. I knew it was coming. This morning Jayen had another seizure. It was similar to what he usually has. I know that he is physically drained when he has seizures but mommy is emotionally drained. I can't wrap my brain around how it would feel to not worry, to not have to wake up in a panic everyday wondering if we/he will have another one. Yes, I said we. I feel a different pain. I feel this helplessness. I know this isn't about me, but I don't know how long I can continue this. Mommy is loosing it!
Jayen's birthday is this weekend and all I wish is for these damn things to go away!

Late night ER visit

It never ends! This poor kid can never catch a break. Jayen was playing outside with daddy and Dalan when he tripped and hit his mouth on the glass from our power meter. Bottom lip was swollen and bruised but the top lip was so scraped you could see the root of his tooth. Went to ER to make sure everything was ok.

 

Fifth Diastat

Jayen just had a convulsive seizure. Although it was horrific to watch, the question I got afterwards was just as bad. Dalan asked me if Jayen was going to die because of his seizures. Of course I tried to comfort him and tell him of course not, but the question made me start to wonder what is in store for him. What will his life be like? Will this ever end?

I hate doctors

I hate doctors, is going to be Jayen's new motto. He was kind of put through the ringer today. We went in to get a wart taken care of on his foot. We have been trying to get rid of it for a couple months now using the bandaid things, but it isn't working. He ended up getting four warts frozen off. We were told one of them was so big it could take two or three more times to take it completely off. I could hear him screaming from the waiting room. Good thing daddy was there to help him. Mommy can't hold him down anymore.
After the wart fiasco we had to go get our flu mists. But apparently Jayen missed the mist cutoff by two weeks and had to get the shot instead. Poor baby. Again had to be held down. I really think his mind is saying "I hate doctors!"

Fourth Diastat

DADDY'S POST...

4 months of seizures longest so far, then gone for a couple weeks and came back this morning. Sorry Jayen. Hope we can get them to stop soon....

Third Diastat

I think we are going to be doing these often. Another seizure this morning and another Diastat. This was the first one I had to do by myself. It was a little more difficult. I didn't ask Dalan to help because I don't want him to see what we have to do to Jayen with the Diastat, but I have told him about it. He knows what we do, but I just don't want him to have that image in his mind. I want him to look at his brother and not see that. I think Jayen knows what is to come now too. He really didn't want me to pull down his pants or put his leg to the side. I cry just thinking about it. I wish there was something else I could do. I have accepted that fact that I have to do it. I know that research says that seizures under 5 minutes are not supposed to cause any brain damagae, so Jayen's seizures lasting 6-7 minutes are very scary. It is worth it to do the medicine. I'm just scared that they are going to be something we are doing frequently.
Jayen's seizures started again in May and we are now in September. This is the longest we have ever been unable to control them. I worry that we aren't on the right path. I worry that we aren't going to stop these now. I worry about his future. I worry about having a normal life, driving, drinking, playing sports. What will his life be like. This will always be a part of him, but how can I help?

ALWAYS SOMETHING!

Why is it always something with this kid? Jayen woke up this morning at Grandma and Grandpa Kuchta's house with swelling on the back of his left ear. It was so swollen it was pushing his ear out. He looked so silly. I was really worried about what it could have been. Was it infected, was it a bug bite, did he hit it on something, why didn't I see this yesterday? We drove straight to the urgent care clinic in Bellevue. The nurse practitioner thought it was an allergic reaction to some kind of bite, but wasn't sure. She told us to try children's claritin and gave us a steroid prescription and an antibiotic. We were to try the claritin and steroid and if it wasn't better in the morning then do the antibiotic. Put the kid to bed with a few too many meds tonight. Three syringes and eleven pills. Too much for a two year old!!

increase

Jayen had another seizure today. Second time giving Diastat. I HATE THAT STUFF! I don't think Jayen really knows what is going on when he has a seizure, but he grimaces and whines when we give it to him. I called Minnesota and they said to increase the Vimpat to twice a day. Hope this helps.

New Medicine

Doctor's office called back yesterday and wants us to start a new medicine called Vimpat. I'm a little nervous because I think the nurse talked about the side effects for a good ten minutes. I have to keep a very close eye on him since the Vimpat could interact with his Lamictal. I just hope we can find something that works. I'm really getting nervous. We usually can control them relatively quickly, but this time it is taking longer to find the right concoction.
Jayen's current drug regimen includes a B6 vitamin, 50 MG Lamictal in the morning and 100 MG at night, 125 MG Zonegram at night, 2 ML Klonopin, and 25 MG Vimpat at night.

Diastat disaster

After talking with Dr. Frost's office about Jayen's last seizure (on the 6th) we discussed that from now on if Jayen has a seizure lasting longer than 3 minutes we have to give him the Diastat. I'm so nervous, scared, pissed, and all other kinds of emotions. Who wants to give their child a rectal medicine that is supposed to stop a seizure? What are the side effects? What is he going to be like afterwards? What is Dalan going to say when he sees this?
Well a few of my worries and questions were answered today. Jayen had a seizure this morning. At three minutes we gave him the diastat. THANK GOD Matt was still home to help me do it. I don't know that I could have gone through that by myself. Jayen's seizure continued for another 3 minutes then he fell asleep. This is typical behavior, but I wasn't sure how long he would sleep for or how he would act after. Would he be drugged for the rest of the day?
I didn't want to wake Jayen up to take Dalan to school. Matt was able to come get him and take him to school. I emailed his teacher to let her know that if this happens again that I probably won't have anyone to take Dalan to school. That I would have to let Jayen sleep and bring Dalan in when he wakes up. I hope Dalan is going to be loving and understanding about it. He has had to do a lot to help his brother out. I hope he never feels like it is a burden.

Knock on wood again

I called Dr. Frost's office Monday to update them on Jayen. I didn't hear back from them so I called again Tuesday. We decided that since Jayen had been seizure free since last Thursday that we would go ahead and cancel his appointment for Friday. Well aparently I didn't knock on wood because he woke up this morning and had a seizure. I'm thankful that Matt was here and able to help because this was our first time giving the diastat. I'm not sure what it is supposed to do because Jayen seemed to go about like he usually does. He seized for another 3 minutes then slept for about an hour. I need to do some more research to see what the side effects are. THIS SUCKS!!!

SPED teacher with no skills

Church this morning was AWFUL! Jayen was so crazy and all over the place. Matt and I have noticed that quite often we get head shakes and stares because of Jayen's behavior. This has started to bother me more and more. I'm not sure how to approach these gestures of displeasure from others in a place that teaches not to judge. I thought this would be one of the most welcoming places we could be. We actually really love that there is a child with down syndrome that serves every Sunday. How welcoming everyone is to her and how welcoming we were hoping the would be towards Jayen. I sure don't feel welcome!
Today Jayen was extra extra crabby and crazy. I eventually had to take him out of church two separate times, when we came back in he was still being bad. I ended up holding him the rest of mass but was head butted in the eye, hit with a tractor, hit with his hands. I was exhausted after church; physically and emotionally. On the way home I broke down crying. I am a special education teacher. I have had training and experience working with children with special needs, but when it comes to my own child I DON'T KNOW WHAT THE HELL I AM DOING! What can I do? How do I help him? How do I teach him? How do I get through the day/week/month/year? Feeling really down!

Another seizure

It has been two weeks since our last seizure and I was starting to get a little hopeful that we had found the right dosing and medicines to control them again. I was wrong! This morning Jayen woke up and had another pretty big seizure. It would not stop. When we thought it was over we laid him in bed so his brain could sleep and recover, but I had noticed his hand grabbing at the sheets. His seizure lasted close to seven minutes. I don't know where to go from here. I'll call Minnesota on Monday. Is this ever going to end?

2012 Nebraska Epilepsy Walk

It was such a beautiful day for a walk. Matt and I decided very last minute that we were going to participate in the 2012 Nebraska Epilepsy Walk at Shadow Lake Town Center. We created a team called Jayen's Journey, raised a little money ($465 to be exact), and had a few friends join us. It was such an awesome feeling. Everyone was so welcoming and accepting of Jayen. No one was looking at us funny when he screamed at the top of his lungs or wouldn't listen when mommy told him to do something 500 times. They were curious who we were walking for and how he was doing. I felt like for once in his life he was the "normal" and I kind of felt like the outcast. I was so proud of him! I was so proud of my husband for helping me put our team together in such a short amount of time and the money he raised. I was proud of Dalan for being such a great big brother. I was proud of my family. I was PROUD of where we are in life!
Thanks everyone who supported us. Thanks Colorado Foxhovens, Michelle Carranza, James and Stacy Kreikemeier, Maria Bovastro, AGE shop, FTD instructors, Bob Foxhoven, Charles Foxhoven, Naomi Hutchinson, Josh and Caleb Joslin, Rikki, Jason and Grant Hayek, and Theresa Hochstein. You all made me so proud!

Dalan got a spiderman (face paint) tattoo

Charles thought he needed one too. Dalan promised him it wouldn't hurt.

Had another seizure this morning but we will give this medicine a little time to get into his system and start working.

New medicine

Jayen is still having seizures periodically so we added zonegram today. Hope this one helps!

Heading home!!!

Got to talk to Dr. Frost a little more today. He let us know that the things we saw were seizures. It makes me feel a little better knowing I'm not crazy and making things up. MRI and spectroscopy results came back normal. The MRI did show that the seizures are now coming from the right side of the brain rather than all over. This opens up a few more medicine options. Still waiting on the results of the genetic testing.
We are still uncertain as to what the future holds for Jayen. We do believe that as Jayen's brain grows and matures his seizures will continue to change. We will probably have to go back to Minnesota and do another EEG. But for now we can bust out of this joint and pick up Dalan. We miss him horribly and can't wait for all of us to be home together.

Friday the thirteenth

There must have been a lot of people praying for a seizure this morning, but they should definitely stop now! Jayen had a seizure this morning!!!! The docs saw it on video and on the EEG. It actually starts before his laugh and is undetectable and lasts longer than what we were thinking. Dr. Frost had to go to a meeting and didn't have a lot of time to talk today so hopefully he will talk a little more tomorrow. Jayen got his electrodes off around 1 then was told he had to keep a towel on his head until he could take a bath so the solution didn't get in his eyes. Nice they told us there were two other kids who had to take baths before him. Try keeping a two year old from taking a towel off his head while trying to play. When it was finally his turn the nursing assistant dumped a big jug of water on his head. I thought is was supposed to stay out of his eyes. What a mess! We took a nap while waiting for MRI. They were running late. MRI went well, but once again I had to look into my babies eyes and say so sorry honey. Jayen had to get an IV. He was wrapped in a blanket and held down. Then even worse I had to see him go from a screaming fit to his eyes rolling to the back of his head and him being unconscious. That's when mommy lost it, and I'm pretty sure daddy did too. Propafol really works. And apparently thanks to Michael Jackson, we cannot have any for the ride home.
When Jayen finally came to he was spoiled with popsicles, cookies, and juice. The nurses loved him and his kisses. He was throwing everyone kisses and they were throwing him goodies. He will most definitely get by on his charm!!!
Back at our room we ate a little then found out someone forgot to get his lab work. So once again I had to help hold down my baby and apologize to him. Hopefully this is all over and we don't have to do any of it again!!! That is what we can pray for now.

No seizure this morning. Dr. Frost came in to talk to us and recommended we talk to a geneticist. Apparently Jayen has some facial features that are associated with some syndromes common in IS kids. When the geneticist came in and mentioned they were looking at possible Angelman's syndrome I was a little shocked. I know two little girls with Angelman's and I don't see many similarities with Jayen and either of the girls. Just to be certain they will do a few tests. They will do some blood work and send off his DNA to do a chromosomal check. They will also do another test, called a Spectroscopy, during the MRI that will look specifically at what Jayen's brain is made up of.

Minnesota Epilepsy Group (AGAIN)

We arrived in Minnesota around 2AM plopped our heads on some pillows at a hotel and was so rudely awakened by a bubbly 2 year old. Apparently he got plenty of sleep in the car!
After a well balanced breakfast at McDonalds ;) we checked into the hospital. The moment mommy was most nervous for was finally upon us, getting the wires on. I remember Jayen screaming through the entire process a year ago and having to hold him down. Now he is twice that size and twice as strong. They ended up putting him on a board and strapping him down with a velcro suit. He screamed and cried. Mommy screamed and cried too. I hate when he looks up at you with the eyes that say, "Mommy help me. Why aren't you stopping them? Why are you helping them? Make the hurt go away." And at the same time feeling so helpless. I love you honey and I would never do it if I didn't have to. I'm so sorry!!!

I guess we are going

Matt and I have been bugging the poor ladies at referral managment every half hour to see if we are going or not. Finally at 3:50 we got the word. Matt got off work at 4, we PACKED the car and headed to Sioux City to meet my mom. Between my parents and my brother and sister-in-law Dalan will be kept busy. We really didn't want to leave him and are so heartbroken but we know it would be best. Love you buddy and have a great time!!!

Finally got a return call

After more than a week of waiting for the doctors office to call with a plan we finally have one. I'm not sure if it is one we like or not, but Dr. Frost would like us to go back to Minnesota. He wants us there Wednesday. I responded with an "Are you kidding me?" and a "good luck getting insurance to accept that referral in one business day". Now I have to run around getting our PCM to fill out the referral paperwork, then head to referral management to see if they can process it stat, then if it even gets accepted in time I will have to go to patient travel. That doesn't include packing bags, figuring out what to do with Dalan, make arrangement for Matt's mowing jobs, get snack and things together to keep a two year old busy in the car for 7 hours, and remember my head in the process. I guess I better get busy!!!

I'm a big brother!

Brilyn Nicole Hochstein was born today at 8:17. She was 6 lbs. 6 oz and 19 inches long. She is the perfect addition to our family.

Jayen loves being a big brother!

Are you f-ing kidding me?

I can't believe on Monday we were one year seizure free and now we have these. Jayen came into our bedroom to wake us up, I'm so glad Matt was home to see it with me, he was laying beside Matt then suddenly started staring off and couldn't control his arms. Matt tried talking to him and asking Jayen to complete simple tasks, like high five. Jayen understood that someone was talking to him and would turn towards Matt's voice, but was unable to complete the task. It was very strange, but we both knew instantly that we were dealing with seizures again. I worry that since it is such a blank stare that others will not be able to recognize that they are seizures. They last so long too. We are supposed to give Jayen diastat after 3 minutes, but I will try to avoid it at all cost. What is going on. I'm so heartbroken and can't believe we have to go through this again. Jayen is just started to make more vocal sounds too. I pray that this doesn't set him back. I pray that we can stop these quickly. I pray that this horrible disease doesn't affect him for the rest of his life. I pray for a cure!

Go away seizures and NEVER come back!

Aquatic therapy

Jayen started aquatic therapy today. Mommy was so excited for him. I really thought he was going to love it, but I was so wrong. Jayen screamed the entire time. I had to entice him into the pool by kicking a boogie board with Lightning McQueen on it.

 

1 YEAR SEIZURE FREE

HOLY MOLY! We have never been here before. We have made it to one year!


We light a lantern

HOLY MOLY ONE YEAR SEIZURE FREE

How did we get here? WOW! Mommy didn't write it on the calendar because she didn't want to jinx it. We have never been here before. We don't know what to do. Tonight mommy and daddy have a big surprise for me. We are letting a lantern fly away. Mommy said we are letting it go because we are letting my seizure go with it. Hope they go away and never come back!

Happy Easter

Mommy is so excited to find these tie dye egg sets. Way less mess!!!! Hope everyone has a great Easter and they find all the candy so mommy doesn't.



9 months seizure free

Mommy was really nervous about this milestone but I finally made it. Daddy is still gone but we are making the best of our time. Last time daddy was gone I was 9 months seizure free too then they came back. Hoping and praying that doesn't happen again!

Knock on wood, 6 months seizure free AGAIN!

Here we are again, 6 months seizure free. I'm very skeptical about being here again and how long it might last.

Happy 2nd Birthday Jayen!

I can't believe my baby is 2. Where did the time go? I can't believe everything you have had to go through and are so strong because of it. My birthday wish for you is that you never have to deal with seizures again. EVER! Although I know this is highly unlikely, it is still my wish.

The birthday party was a huge success but we still wanted to make your day special. Mommy and daddy planned some fun activities. Our family fun for today includes bowling and a movie. We'll see how it all goes, but we can't wait to spend the time sharing your special day with you. Love you!!!

I'm going to be a big brother!

Mommy wasn't feeling good at Jayen's birthday party so she took a test and found out I get to be a big brother! We are all pretty shocked but excited.

Vala's Pumpkin Patch Birthday Party

Mommy is so excited that we get to have a birthday party at the pumpkin patch. Since having a baby in the fall, I've always wanted to have bonfire party at Vala's.
After watching the Husker game and taking a quick nap, we got all dressed up in our costumes and were ready to go. Daddy was Superman, Mommy was Captain America, Dalan was Spidermand and Jayen was Ironman. We were one superhero family.
We played on the slides, in the corn, and showed everyone why we love Vala's, before heading over to the bonfire. It was so fun to have our family and friends there. It was one of our last times with the Parker-Lopez's before they moved to Arizona. We will miss them horribly.
At the bonfire we roasted hotdogs, smores, and had cake and cupcakes. The kids had so much fun playing on the wooden train setfand when the sun went down the glow sticks were a big hit. Right before heading home we took a train ride with Madison, Hunter, Morgan, Tom, Tanya, Allissa, Isaac, Reganne, mom, dad, Dalan, and Jayen. What a great birthday party for a special little ALMOST two-year-old!

Just what I wanted

I was supposed to call the doctor on Wednesday but things have kind of gotten away from me. When I finally got to it today, I got the greatest news! Jayen has been doing so well on the decrease of Topamax and the increase of Lamictal that the doctor is ok with us coming completely off the Topamax!!! We will do this very slowly, one pill a week. It will take us 4 weeks but it will be so worth it. I am so excited but so nervous at the same time. Anytime we change meds we are at an increase for seizures. Praying for good results!

Minnesota Epilepsy Group

Met with Dr. Frost again today. I can't believe it has been 6 months since we were here last. Even worse I can't believe it has only been 4 months since his last seizure.
We were really hoping to get off the Topamax since it is causing the acidosis and not allowing him to sweat. We decided it would be best to take this really slow. We are coming down on the Topamax but not completely off. There will be a two week decrease schedule we have to follow then call back and let them know how things are going. It was a great visit, but wish we had a few more answers. I guess I need to find a few more questions first!

Met the new doc!

We finally met Dr. Lee today. What a relief! We are so excited to get to know him more and for him to know us more.
He seemed very upbeat and ready to do anything. He has a neurology friend that he has been able to ask question to and help out as much as possible. Dr. Lee gave us some questions to ask when we go to Minnesota. We'll have to update him when we get back!

Med increase

Heard back from Minnesota today. Jayen's bicarb level is pretty low and they would like to increase his sodium citrate by .5 mL to bring us to 5.5 mL. This wouldn't be a big deal, but Jayen HATES this medicine. We order it flavored and make sure we give him a drink immediately after to chase it down. Hope he adjusts well to the changes!

I think we are in good hands!

I got a call this morning from Dr. Lee (our new peditrician). He was reading over the notes from Dr. Pavkovics office and wanted to ask some questions. I am so relieved! I wasn't just one of the nurses calling, it was the doctor himself! He asked what was going on with the Lamictal and I shared what was discussed with both of the neurologists. He read me an excerpt from a prescription dictionary (I think that is where it was from) that said there is no exact theraputic level for Lamictal. It is theraputic according to how the patient reacts to it. He was saying that according to that statement he thinks I am completely justified with not wanting to increase it. He also asked if Dr. Pavkovic made any suggestions about Jayen's acidosis. Apparently his acidosis levels have gotten worse. If not treated this could really affect Jayen and his development. I'm so thankful that he was looking out for us and spotted this discrepancy. I'm not sure why Dr. Pavkovics office did not catch this, but I am so happy and excited that we have a doctor looking out for us. Can't wait to actually meet him! Thanks a million Dr. Lee!

Offutt Air Show

What a long weekend. We were invited to the special needs air show on Friday. I was a little rainy but otherwise a great day to be outside. The boys are in love with airplanes and enjoyed watching all of the tricks. Jayen was fascinated and couldn't stop smiling. He was pointing and following the planes in the sky. It was so great to see.
We went on Saturday as a family and got to walk inside some of the planes. Daddy had to work on of the booths on Sunday so we decided to bother him. We spent the whole weekend on the runway at Offutt Air Force Base but it was worth all the great memories we made!

Happy Birthday Dalan

Today is Dalan's birthday. We celebrated with our family and closest friends. What a great day. We rented the shelter house at Halleck Park to have lunch then went fishing. Both of the boys love fishing and had fun showing everyone their skills!
Jayen's pole doesn't have any hooks on it. We tied the rubber weight that came with the pole on the end. He loves practicing casting and reeling it in.
I think everyone had a great time. What a perfect day to celebrate a wonderful 4 year old! Love you Dalan Mathew Hochstein!

I don't think so!!!

Pavkovics office called back today and said Jayen's lamictal level was low. It isn't at a theraputic level and they would like me to slowly increase until we are almost double where he currently is. I don't understand. WHY IN THE WORLD WOULD WE DO THAT? He is seizure free. Why are we making changes? If it is not theraputic and he is still seizure free then why wouldn't we just get rid of it? I told the nurse I would like to conference with Minnesota first.

After talking with Dr. Frost's nurse and her talking with him, he completely agreed with me. Leave the lamictal alone for now. We will go back and see Dr. Frost on September 13th and if there are any changes we will do them then. I just don't feel like I can always trust Dr. Pavkovic here anymore. I don't like having that feeling. I wish I was more knowledgeable about neurological issues. No matter what I will always do what I feel is best for my baby!

Nebraska Neurologist

Just got back from vacation and had to go in to see Dr. Pavkovic. It was just a follow-up visit.
Everything has been going great! Jayen has been seizure free since May 20th! Dr. Pavkovic was happy with the way things were going. He decided to get lab results again and see where we are.

Family Vacation

Today we left for our big family adventure. We are headed to Montana! 16 hours in the car with two kids. Hope we all survive.

We made it to Rapid City and are spending the night at a cabin near the "face mountains". Mount Rushmore was beautiful. The boys seemed to enjoy it. We were able to stay for the lightining ceremony. Jayen didn't make it that long to actually see it, but the rest of us really liked it.

Tomorrow we will finish the drive to Montana. Another 12 hours to go. Benadryl coctail kids? Just kidding!

Ups and downs of being mobile

Although it is such a blessing that Jayen is walking now, there are downfalls too. Just this week alone Jayen has fallen down and bruised his head more than a handful of times. The first accident was with a block. I am not exactly sure what happened but Dalan said he hit his head on the wooden blocks. He got a nice gash on his head. We had to call Papa to make sure we didn't have to go to the ER. The next bruise came from Jayen's curiosity. He was standing up on the changing table looking at the pictures on the wall and took one step too many. He fell off the table and hit his head on his crib. Another time he was sitting on the trike and wanted off. Apparently I wasn't being fast enough for him and he dove right off. What a nice huge bruise that was! And finally today, he was trying to sneak out of the house and got caught in the front door. The kid is bruised from head to toe. I really think that someone is going to call CPS on me soon. Poor kid!

To walk a mile in your shoes...

Met up with a couple of I.S. mommies today. It reminded me so much of all the crap we have been through with Jayen. So sad that there are other's that are going through it but it is nice to not always feel alone. Wishing her and her family strength and endurance. Terianne, you and baby Maggie are in our prayers!

What a horrible, horrible day!

Today we had to finally say goodbye to our favorite peditrician ever, Dr. Toth. Of course being in the military we are constantly relocating. I should have known it wouldn't be any different for our doctor. We are so thankful he was with us through this crazy journey. I don't know that I could have gotten through this without him. He was always down to earth and straight forward about everything. He will truly be missed!

For A Wonderful Doctor

To earn the title “Doctor” is an honor, it is true....

Fruition of a lifelong dream, achieved by just a few.

It’s a journey that has brought you to this time and to this place,

Where you can make a difference with each challenge that you face.

But, still, the wisdom you acquired each step along the way,

Is not all that defines you as you travel through each day.

For knowledge in and of itself is only just a part...

The thing that makes you specia is your kind and gentle heart.

And when a Doctor cares as much as you “sincerely” do

The world becomes a better place, no doubt, because of you!

Happy Independence Day!

We started our festivities at our house. Daddy had to show his boys how to blow things up. Jayen was actually interested in them this year. He loved the snaps and was semi-interested in the sparklers.
We went to Werner Park to watch the fireworks. What a great display they had. It was nice to sit back and watch them without worrying about anyone hurting themselves. Jayen was pointing at the sky and making oooooo noises. It was so nice to see him interacting like that.

On Monday we went over to Jerry and Kathy Hayek's house. Jayen was having a great time with Marty Riedler! What a great day and a great end to the fourth of July weekend.

Father's Day Camping Trip

What an awesome weekend with the Kuchta's. Grandma, Grandpa, Tom, Tanya, Madison, Hunter, Morgan, Tyler, Allissa, Matt, Nicole, Dalan, and Jayen all went camping and didn't kill each other. It was actually a lot of fun. We took a day and visited Platte River State Park. We went swimming at the pool then checked out the tower. What an amazing view and an amazing weekend. Thanks guys!

The boys are working on their aim!

Someone missed and got my foot instead.

A year ago Jayen was just starting to talk again. I remember how wonderful that camping trip was! I'm glad that he has made so much progress. I can't believe how far we have come!

Wow what a breakthrough!!!

Jayen had therapy today, so Mom and Dalan went to the store quick while Jayen was in the gym. As soon as we returned our therapist was knocking on our car window telling us to come in and see this. Jayen had decided today was the day he was going to walk. He was walking laps around the whole gym. What a great job buddy. I love you and am so proud of you!

One month seizure free

Wow, here again. So nervous to see how this is going to go or how long this will last. Jayen's last seizure was on May 20th. The day before was a big one. I am hoping that it was such a big seizure that he got ALL of them out. There are no more left.
Crossing all fingers, toes, arms, legs, and anything that we can cross to wish this is the end of seizures.

Father's Day

We celebrated Father's day with daddy at the duck pond this year. We will go on our annual camping trip next weekend, but had to show daddy how much we love and appreciate him. It was such a great day! Dalan had to show daddy up. He must have had some kind of crazy luck on his side. He was able to throw his line in the water and within seconds he would have one and sometimes two fish on his line. Matt spent most of the day taking fish off hooks instead of fishing for himself. It seemed like as soon as he got the fish off, another worm on, cast it back out, and got back to his line, Dalan would have another fish. It was fun to watch! Jayen enjoyed playing with the worms. He seemed interested in fishing so I went to Target and picked up a fishing pole for him. I didn't put any hooks on his line so he could practice casting without hurting anyone.
What a great day! Hoping daddy knows how much we really appreciate him!

I love ice cream!

It seems to be a tradition in our house for daddy and the boys to sit on the deck and enjoy ice cream. Jayen seems to really enjoy this tradition too!

Speech Evaluation

We finally had our speech evaluation at PTC. It was scheduled for more than a month ago, but we were in the hospital again with seizures and didn't make it last time.
It was a good meeting. I was explaining to the therapist that the last speech test didn't seem like it was a true evaluation of Jayen and his abilities. I really like to standardized test that was completed this time. It was a yes or no questionaire that I answered. It was a little more evident how far off he is from his same age peers.
Jayen qualifies for speech therapy twice a week. I am so excited to get it started! I can't wait for him to start communicating his wants and needs. I miss his babbling and look forward to hearing his first conversations. I know I won't regret it!! ;)

IFSP with daddy

Daddy was in charge of Jayen's IFSP today. Mommy was working and had to leave daddy at home. He did pretty good. Hope all those ladies didn't scare him off.
As a team we decided that we would add speech 2 times in a 6 month period and we would continue physical therapy 6 times in a 6 month period.

4 more seizures today. Increased his Topamax to 4 pills at night and still gradually increasing his Lamictal.

Longest 5 minutes of my life

We were on a good roll. 11 days seizure free. I was so excited and felt like we were on such a great path. Jayen was acting like his old self again. He was smiling more, laughing more, walking more, talking more, and just happy more. We kept telling ourselves that coming off the Depakote was such a good thing. Now I am not so sure about it.
Tonight Jayen was drinking his bottle and calming down for the night while Daddy and Dalan were holding him, when he had a cluster of 5 seizures. It was the first time Dalan saw one of Jayen's seizures. About ten minutes later Jayen started another seizure, but this time he didn't come out of it like he usually does. This was lasting longer and longer and longer. Daddy tried to get his attention in many different ways. He was talking to him, rubbing his belly, putting objects infront of him, moved him, but still no response. I laid him on the floor and continued to try to get his attention while Matt ran to get the diastat. I was hoping and praying we wouldn't have to use it. After a little more than 5 minutes he came out of it on his own. We did not use the diastat but are still debating whether we should have. What a scary moment! We have never had a seizure last longer than 30 seconds, now we are in a whole new ballgame. They are lasting longer and looking different. It started with the jerk and freezing like usual then he arched his back and was kicking his feet. Matt said it felt like he was trying to kick out of his arms. It then sounded like he was laughing. We noticed at this time that only half of his face was smiling. His left was moving, but his right side was frozen. While on the floor he continued to be unresponsive. His eyes were rolling to the top and he was moving his head from side to side. Around the five minute mark, just before we were ready to administer the diastat, he came out of it on his own. What a scary, horrific, and unforgetable 5 minutes that was. I hope it NEVER happens again.

Thank you Dr. Toth for calling me back and talking us through this. What are we going to do without you?

Neurology/GI

Meet with Dr. Pavkovic and Dr. Zapata today. We were so excited to talk to Dr. Zapata and see what we can get rid of as far as medicines and formula. After meeting with him we decided that we can come off of both the omeprazole and the soy formula. We just need to do one at a time. Matt and I talked about it and we are going to get rid of the omeprazole first. There are no side effects from being on formula so that can wait. What great news to get rid of one more medicine and be able to add in a bunch more food!
Dr. Pavkovic was updated on Dr. Frosts plan.

Saw Dr. Toth today. Just updated him on everything that is going on. He set up our labs for us and we are ready to go. We will really miss him

Easter

Even though we just got home, we turned right around and headed to grandma and grandpa's house for Easter. We stopped to meet baby Grant first! Dalan didn't want to give him back. He got to hold him and wouldn't let go. Maybe he will be that excited when we have another. (Not anytime soon though!)

We went to a few Easter egg hunts and the boys got way more candy than they could and should ever eat. Guess mommy should help them out. Don't want it to go to waste!!
We were all dressed in our best and got some good family pictures. It was a nice day to get away from all things medical. It was nice just to enjoy the day and not think or worry about anything.