Look at the stuff they make me do!

Our OT has some strange tricks up her sleeve. I did not like this one bit!

Jayen is working on his pincer grasp. One of the ways to get him to use only his thumb and first finger is to tape the rest of them out of the way. Although it looks ridiculous, it was effective!

Look what I can do!

"WILL WORK FOR FOOD!" seems to be Jayen's new motto.

Before we couldn't get him to put anything in his mouth and now we can't seem to stop him. (Although he is kind of stubborn when trying new things) I now realize I have to be very careful what I wish for. Jayen is participating in physical therapy and occupational therapy twice a week at PTC. He has made so much progress in the two weeks we have been there. Things are really starting to click in that brain of his. We do co-treats, so right now we have OT and PT at the same time. It is kind of funny to see how they try to work the two of them in. Jayen really loves all the attention and mommy loves the hands-on aspect of it. Not only do they show me what to do and how to do it, they actually do it too.

Jayen is usually VERY tired after therapy. He has been falling asleep in the car on the way home and sleeping for at least an hour. He is such a strong little guy and I am thankful he shows me how to pull through anything.

Daddy is so jealous, at therapy I got beef jerky. I can have it until I start taking chunks off of it. It is supposed to work my chewing reflexes and my tongue movement.

I've been working on getting into a sitting position from my back. I use the ball to help me.

I was showing off. I was doing a great job and loved the cheers and praise!

They make me work on the crawling stuff too, but I do just fine rolling wherever I want to go. My big brother gets mad at me all the time because I can get to his toys now.
He likes to kick me when I get too close.
Then mom YELLS!!!

Rolling to a sitting position. This teaches him how to get into a sitting position from his back.

Reaching across midline for a toy. This teaches him to reach with the opposite hand so when he is sitting he still uses a hand for balance.

OT evaluation

After walking back and forth through the hallways at the clinic on base to make sure Jayen's referral went through, we finally got the ok to do his OT evaluation. What an emotional day. The occupational therapist that did the informal evaluation last week was the same one doing the actual eval this week. We were both just in utter disbelief at what Jayen decided to do with his food today. He ate almost a half of a jar of baby food!!!!

It took a lot of coaxing and work to get that far, but he didn't gag. A week prior he let us put the food in his mouth but didn't know what to do with it after that. That is when he would gag. What a huge improvement!! Mommy was crying the whole time.

Not only did she get him to actually eat some food but somehow he decided he was going to try some baby puffs too. This is the same kid that doesn't even put his toys in his mouth to discover them. He hates anything in around or near his mouth. What just happened? Who is this baby?

Well, Jayen ended up qualifying for OT services twice a week. We are fortunate enough to have some very cooperative and wonderful service providers that have agreed to do their visits together. We will have our OT and PT services on the same day at the same time. We will see how this goes. I can't wait!!

Physical therapy evaluation at PTC

Love, love, love the PTC center in Papillion. We had our initial evaluation for physical therapy services today. Jayen showed them all his cool moves. He rolls EVERYWHERE now. However, that is his only move. The therapist tried moving Jayen around to get him to do more of an army crawl but each time he would maneuver out of it and go right into a roll. She was very impressed by his strength but could his is behind in his milestones. She recommended we be seen twice a week! I'm happy and nervous at the same time. This is quite a big time commitment.
While I was there we also talked about occupational services. An OT came in a performed an impromptu evaluation. I have to call my doctor to get a referral for them to complete a full evaluation. I was explaining how Jayen refuses to eat or gags as soon as something touches his tongue. The OT tried putting some baby food in his mouth. Jayen was very adamant about not wanting it but wasn't gagging like I had mentioned. Two bites later, he decided to show them what mommy was talking about. He gaged and threw up everywhere. We will call the doctor today and ask for that referral! (Jayen thanks for not proving your mommy wrong ;)

Life is going to keep moving

Jayen's second tooth came in today. I think I have finally realized that no matter what I do or what hurdles we will have to jump, life is going to keep moving! Jayen is getting bigger and I just can't seem to stop him. My baby isn't a baby anymore. What a grown up little man he is becoming.
We did not get to meet with OT and PT last week, so they rescheduled for next week. It has been a month since we saw someone. I am very excited for the OT to come and see Jayen when he is eating. I just can't get him to eat anything, even with the new teeth. Today I tried giving him a cracker and he made the strangest face when it was in his mouth. I thought every kid liked crackers.
We will also be starting physical therapy at a center in Papillion on the 1st of September. (This will be a CRAZY week. Mom starts working again on Monday and Tuesday, Dalan's open house for preschool is Tuesday night, physical therapy on Wednesday, and OT and PT on Thursday.) We will try to keep everyone up to date about what is going on!

Yippie! The occupational therapist is coming with our physical therapist next week. I have so many questions and concerns to talk to her about. Jayen is still struggling eating. We had another weight check today and he dropped again. He is now 17 lbs. 11 oz. He dropped 4 ounces in two weeks. I am just not sure what to do. The doctor isn't too concerned, so I guess I shouldn't be either. Currently, Jayen is in the 10th percentile for weight. The doctor feels that according to older brother and Jayen's weight before meds, Jayen should be closer to the 3rd-5th range. We will go back again in 3-4 weeks and recheck. I just worry that he is going to be one and still not eating anything. We haven't even gotten through all the first step baby foods and he is nine months old. Alright, this mom will try to stop worrying.

We just got our family pictures back! I'm so happy with them. Thanks Amanda Rulong Photography. You captured my kids perfectly.

When we went to the doctor the other day, Dr. Toth asked us if we thought our once every other week therapy was enough. I said no and he agreed. He put in a referral for us to see a pediatric therapy center in Papillion. I called today and have our initial consultation on September 1st. I'm so excited!! I know he is delayed, but hopefully with lots of intervention he will soon catch up!

Took Jayen to the doctor today because he has had a rash on his face that has now spread everywhere. I thought it was just a teething rash, but after four days and it spreading I figured that wasn't the case. The doctor wasn't sure exactly what it was. He was not worried about it. It isn't hives and won't hurt him. There is a possibility it is from his medicine. The doctor wants us to tak to the neurologist about any side effects they have seen from the Topamax.
One more thing....Someday this will all be over!

6 Weeks off ACTH

YEAH! 6 weeks off of the ACTH and seizure free (I think)! It is so hard to tell if he has had one or not. Sometimes I think he might have had one, but I'm just not sure. His EEG is still looking good so as of now I'm just going to assume that it is nothing.

9 Months Old

Jayen is nine months old today. We had an appointment with our wonderful pediatrician. Jayen was cleared for his 6 month shots (only 3 months late, not too bad), but he was concerned about Jayen's weight loss. He weighed 17 lbs. 15 oz. and was 27 1/2 inches long. He has dropped almost 2 lbs. I know, I know, he had a lot of extra weight. He can afford to loose some, right? Most of his bulk was water weight, so the doctors were hoping that he would maintain his weight and kind of just grow into it.
I expressed my concerns about his eating habits. He is refusing almost everything. His appetite is so small then when I give him his medicine in the morning he is almost full from just that. He refuses ALL solids. We have to force it down. We've tried almost everything and he just refuses. The doctor wants us to come back in two weeks to do another weight check. We will keep an eye on it.

Results are in...

Ok, finally heard back from neurolgoy about EEG and EKG. I'm told "both would read as normal". I grateful but reluctant at the same time. How did it show up on one test but now it didn't on another. Do we just ignore that it ever happened now? Everytime he makes a different move I analyze it. Was it? Did he just have another seizure? Do I need to call the neurologist? Will it happen again? I never know what to do.

When will I not be afraid anymore?

Good news or bad news first

Well, I finally got a call from the neurologist today. Jayen's EEG looked normal again!!! BUT, he noticed the same thing I did. Something was a little off with his heart beat. They immediately scheduled an EKG. We go in tomorrow at 1:15. I'll keep you updated.

First Tooth

When Jayen woke up this morning, I noticed something very sharp in his mouth. My baby got his first tooth today. One finally came through!!!

Kind of hard to see but it is on his left side right by his tongue.

Working on loving green beans

Mommy has been trying EVERYTHING to get me to eat my food. She thinks that because I get so many medicines orally that I just don't want anything else in my mouth. Our special education teachers suggested just letting Jayen play in it, get it on his fingers, and possibly getting it actually IN his mouth. Well, it looks fun and really messy!

Another EEG

We had another EEG today. Jayen is supposed to come tired and ready to sleep. What a crazy thing to ask of an infant. Jayen usually takes a nap around noon but his appointment wasn't until 2:30. These people needed me to keep him awake 2 1/2 hours after his normal naptime. Ok, I can do this. Yep, did all I could to keep the kid awake on the 20 minute ride to the hospital. Oh, now I know that kid can sleep through ANYTHING.
As far as I could tell, things looked pretty good. I'm no expert when it comes to reading an EEG but I did notice something irregular about his heartbeat. I said something to the technician and she noted it for the doctor.
We haven't heard anything for results yet. The doctor is on vacation this week and next, so not sure how long it will be before we hear. I'll post when I know more. I'm praying and keeping my fingers crossed until then.

Pictures

I took the boys to the park today and had their pictures taken again. I hope they turn out. I'm excited to get pictures of Jayen during his weight changes. I love my little chunky monkey but really like seeing him looking more like he did before the steroids. I'll post them as soon as I get them.

Going to check out babysitters tomorrow. Not looking forward to going through this process again. So sad our great babysitter moved away. But mommy needs a little teaching time to keep her sanity. Wish us luck!

NOT a professional but love taking pictures

Mommy tried taking some pictures of us when we were in better moods. Hope to see the professional ones soon.

Hot Air Balloon

We went to Gretna days today. It was kind of a flop. We ended up having everyone come to our house, but had a little fun before we left. We went inside a hot air balloon. They had it on the ground, blown up with fans. It was such a great experience. I couldn't believe how big it was, how pretty it was, and how fun it was. I'm glad I got to experience that with the kids too!

I love my bath!

Most of the time big brother is in the tub with Jayen splashing him, but recently Jayen has been getting in on the fun too. Jayen loves water in all forms.

3 Weeks Off The ACTH

We have been off the ACTH for 3 weeks now. We have seen such a drastic change in Jayen since he has been off the steroids. He is thinning out more and more every day. I was told it would take a while for him to loose it all, but it is amazing how fast it is going away. Jayen has done a total 180 in so many aspects. He is so happy now as compared to always whining and being upset; he has almost no appetite (his medicines fill him up that he almost has no room for milk) but before I couldn't keep up with him; he is making such progress in his abilities whereas he seemed to loose so much while on the steroids. We are just so thankful to have our baby back. He is so happy and smiley. What a joy it is to be around him!

2 MONTHS SEIZURE FREE!

Jayen has been seizure free for two months today! I can't believe we have made it this far! I have a much better outlook than I did months ago. I fully believe that God is showing us this new path. He is looking out for us! Everyone's prayers have helped tremendously. I can't thank everyone enough. Prayer is so powerful.

Physical Therapy

Jayen had another early intervention today. His physical therapist was the one to come today. She is seeing so much progress. Jayen rolled over with his left shoulder 4 times while she was here. I'm sure he was showing off for her!
We are still working on sitting up. He just doesn't get it yet. We learned a few more techniques and will be persistent. I know that he will learn it soon. Practice, practice, practice!!!

Two down, One to go

Just got back from our neurology appointment today! "Looking great!" doc says, "Ready to start getting rid of another med." Starting tomorrow we are going to be tapering his phenobarbital. It will take about 8 weeks to be completely off of this one, but we are so excited to be getting rid of one more med!!!! The only downfall is the mood swings and sleep changes again. Mommy just got 3 full nights of sleep. What are they trying to do to us? We will repeat his EEG in a couple of weeks to make sure his brain waves continue to function normally. We are still seeing delays in his developmental milestones but I am confident he will get there soon.

Big Brother

No matter what my big brother does to me, I love to laugh with him. Anytime Dalan is laughing Jayen is too. I hope they stay best buds FOREVER!

I was asked the other day how you make sure that one isn't jealous when you are spending time with the other or how you make sure that you spend equal time with each. I was kind of taken back by the question and was wondering if that person thought it was wrong to have more than one child. I know that my time is split between the two of them, but someone who only has one child will never know what kind of bond the two of them could have. I'm blessed!

Independence Day

Happy 4th of July!

Smiles all the time!!!Double Trouble

We began our celebrations after our ER visit. We have a long standing invitation to the Hayek's house for BBQ and fireworks. This is Jayen's first, Matt's second, Dalan's third and my fourth year attending. We love being invited and can't thank everyone enough! It is always a blast.
Jayen passed out early with Grampy Riedler but woke as soon as he heard the fireworks. He loves watching them. We tried keeping earplugs in, but after the hundredth time of putting them back in I gave up! Dalan was taught (without my consent) how to light fireworks. He is growing up so fast I'm scared to blink. Jayen was enthralled with the lights in the sky. His eyes were fixed on them all night long. He is doing so well. I still can't believe the progress he is making. It was so great just to have a fun family day. Can't wait to have many more!

Another trip to the ER

Jayen woke up this morning with a fever of 102. I called the neurology clinic to see what they wanted us to do. I would have given him a bath and Tylenol but knowing that his immune system is so compromised I wanted to make sure everything was ok. The on call doctor wanted us to go to the Emergency room and just have a doctor look at him. They finally decided that he should be ok but they want us to come in tomorrow again to re-check some of his blood levels. What a great start to our fourth of July celebrations! Just hope it is a little virus and he can fight it off without any problems. Keeping our fingers crossed!

Interactions

Jayen is learning so much! He initiated a game of peek a boo with daddy today. He lifted his head to see where daddy was then put it back down on the pillow to hide his head again. You can see his head control is still a little laxed, but he is doing so much better. It was so cute to see him interacting like that with us. I'm so proud of all the progress he is making.

Way to go buddy!

A day of play

Daddy had today off of work so we spent the day playing. We met up with Renee, William and Mallory at the zoo early in the morning. We had such a blast with them! We finally convinced Renee that she had to take the kids to see the budgies. I think they enjoyed it. Nikki, Brecon, and Teagan met us there but it was time for Renee and the kids to leave. We played with the birds for a little bit before we took Dalan and Jayen for a HUGE surprise. We purchased an all day train pass!! Dalan is a big fan of trains. He didn't want to get off. We rode the train roundtrip twice. We met up with Nikki and the kids again after that but it was about time for them to go too. Just as they were leaving we met up with Emily, Gabe, and Journey. They ate with us then wanted to ride the trains too. We ended up riding two more round trips then convinced Dalan it was time to get off. It was now our turn to go home. We left the zoo, went home and got something to eat, then left again for the base lake to see the fireworks. It was such a crazy fun day. We played with lots of friends and had a blast just hanging out with eachother. Hope to do it again soon!

SPED Training Day

We had another training session today. Our teacher said we are doing a great job. She could tell we have been working with him a lot! He is making great progress in his rolling, lifting his feet, and vocalizations. GO JAYEN!!
We are continuing to work on these skills and many more...

• his left side is still underdeveloped. We need to continue to work on holding toys and rolling with this side
• vocalizing - when we play with him we should pause after an activity and ask him if he wants more then wait for a vocalization before continuing.
• We just started working and putting weight on his legs. She suggested letting him straddle our leg and slowly help him get to a stand.

We see lots of progress and can't believe how much he is growing every day. We are still trying to figure him out again. Everything has changed; his sleeping pattern, his eating pattern, etc. It is almost like having a new baby again!

Blood Levels

I just got a call from the doctor's office. Jayen's potassium levels were VERY high. The doctor was a little hesitant to say it, but did say that it is something that could be fatal. We immediately left the house and headed for the doctor's office. The wanted to take his blood again, but this time from a vein. They were searching and searching and finally decided to take it from his scalp. Once again he was poked for more blood. By the time we got packed up and back to our house, I think the boys caught some kind of bug. Just as we were walking in the house Jayen started puking. A few minutes later Dalan was projectile pooping. The two of them continued this cycle for a few hours. Mommy and daddy gave them extra love and lots of fluids. The next day they both seemed to be fine.
The doctor called back and said that his potassium levels checked out OK this time. They think it could have been caused by the phlebotomist squeezing his finger too hard. It actually breaks open some of the cells and causes them to release too much potassium. So big scare but all is well again!

I have toes! Who knew?

Jayen was playing in his crib this morning waiting for someone to come get him when he finally realized he had toes. These crazy things have been there the whole time. We have been working on getting him to find his toes for weeks now. He was rolling around just holding onto them. He is making so much progress!

We bought 9 balloons and let them go tonight. One for each of the 9 weeks of this horrible drug. I'm so thankful that it made him seizure free (at least so far!!) but it changed him and turned him into something and someone else. We will always love him no matter how he looks or acts. He is our baby and I treasure any moment we have together.
Letting the balloons go was like letting all the stress and horrible memories go with them. I cried after every one. Whenever the balloon was no longer visible the pain just seemed to go with it! It was such a great feeling, just letting go!

Last Shot Day!!!!

Today is Jayen's last shot of ACTH!!! We are so excited that we are finally done with the horrible medicine. It is a blessing and a curse all rolled into one. It is a blessing that it has made the seizures stop, but a curse that it took all that time and talent away from him. Jayen is slowly regaining some of the abilities he lost and slowly learning new ones. Every day he amazes me! He just started talking again and seems to be more alert about his surroundings. He is making great progress. We are thankful for the medicine, but are even more thankful that WE ARE DONE WITH IT!!

Dalan played a big role during these 9 weeks of shots. Dalan's job was to take off the band-aid on the opposite leg. (We left the band-aid on to help remind us which leg we were supposed to be on.) He is such a good big brother. He would always make sure Jayen was ok after his shot.

Daddy's Present

We packed the pickup and had everything ready to go when daddy got home from work on Friday. We were headed out of town and dad had no clue where. We met up with Grandma and Grandpa Kuchta at Two Rivers State Recreation Area. It was such a great trip. Our new tent worked great. Dalan had his own room, Jayen had his own room, and mom and dad had their own room. We went fishing, played games and just had a lot of fun. Daddy said the best gift of all though was Jayen's complete 180. This weekend he started talking again!!!! He found his voice back and now he won't stop. He has been talking to himself and anyone that listens (even if they aren't listening he is still talking.) He rolled on his left side too. It was so great just to see how different he is now that we are almost off the steroids. MY BABY IS BACK!!

A Glimmer of Hope

Jayen has been showing a little of his old self. We recently acquired a trampoline from and friend and have been on it almost everyday. Dalan and Jayen both are just on cloud nine when we are jumping on it. They boys love playing together! Jayen is really starting to show more of his personality again. I love that the steroids made him seizure free, but they sure took a lot away from us too. Glad we are almost done!!!

Making Progress

Jayen had another intervention today. He is making progress. He hasn't become an expert on any of our goals, but he is getting there. When trying to roll with the left shoulder he gets on his side but doesn't go the rest of the way. It's a start!!
We also had another neurology appt today. Looking good. Did a few more tests because his blood pressure is borderline scary. We only have one week left on the ACTH so hopefully the blood pressure will go down quickly. We will just have to keep a close eye on it. Still waiting on lab results. Will update later!

Seriously? Pink eye

Ok, I'm not sure why we he can't catch a break. Went to the doctor today and Jayen has pink eye. One more prescription (four times a day).

Nasty looks

We went to the zoo today with Aunt Allissa. It was so much fun, except all the nasty looks and stares. There was a family standing beside us on the koi bridge. The mother tapped the father and pointed our way. The father turned, looked, then blew air into his cheeks to make them look bigger. The two of them turned away, then told a child to look. I was so livid. I wanted to call them out on it right on the bridge. We followed them off teh bridge into the garden. The mother wanted a picture of the family. I overheard her and offered to take it. It took all I had not to take a picture of my finger flipping her off or to just throw the camera in the water. In the end I was happy to be a better person.
We went our separate ways. I was getting over it and trying to forget about it. Too bad when we were ready to leave another little boy said, "Mommy look at him!" while pointing to Jayen.
My little man (and thousands of other people staring) has taught me to not judge people by their looks. You never know why someone is the way they are or what challenges they faced in their journey in life.

Hip Hip HOORAY!!!

One month seizure free! I never thought we would make it to this point. What a great relief. Looking forward to many more seizure free days!

Milestones

Jayen at 7 months old is...
Rolling from stomach to back and back to stomach (right way only)
Transferring toys from one hand to the other
Visually tracks objects across field of vision
Finds lost objects when dropped on floor
Lifts his head 45 degrees when lying on tummy
Brings his hands together to bang toys
Shows interest in objects and activities

We are very excited to see some happy moments in our little baby again. We are getting over this really big bump in the road. Every little milestone, no matter how big, is one step closer to a total recovery!

We had another special education intervention today. Our new teacher was very nice and worked well with Jayen and Dalan. Dalan, of course, ALWAYS wants to "help"! We were very thankful for the help we received! She had so many great ideas on how to help develop Jayen's left side. He is currently rolling over (as his only form of transportation right now) from his right but not from his left. We were given strategies to try to encourage him to work and use that side. A few extra days were added to our schedule. We get to see the teacher Wednesday too!!! We look forward to more interventions and the great ideas!

Mommy's crying because she is happy!

I had to explain to Dalan today that mommy was crying because she was so happy. Jayen started talking again today. I can't remember the last time I heard him talking like that. What a great day!!!

*You never know how strong you are until being strong is the only choice you have*

Can this kid catch a break?

We went in to the doctor today for one of our routine blood pressure checks. Blood pressure was good, weight was high :)! I asked the doctor to come in and look at this "bruise" above his belly button. Matt and I noticed it the other day and I was asking him if he knew what a hernia was. Mother's intuition! Jayen has an umbilical hernia. I really don't know why he can't catch a break. We had plans for this weekend again too. Sorry buddy!

It is so hard to be an advocate

It is so hard to be an advocate for your child. When you are at a restaurant and the waiter brings you your food if it is not to your liking do you send it back or do you just sit there and deal with what was brought to you? I had an encounter like that today. Jayen had his first early intervention meeting today. The teacher was a little "uncooked" and I didn't know how to send her back!
After contemplating for a while and taking advice from a friend, I called our services coordinator and asked for some help. I felt awful asking for someone else but knew in the end that I was doing what was best for Jayen. I have to continue to remind myself that it is OK to ruffle feathers if I am doing what is best for him. I am his voice!

What a blessing!

This was a post on facebook today: "meeting with a mom here in Bellevue for the 1st time whose infant has the same diagnosis as our Will. there's something about meeting another parent whose child has the same disablity as your own- an instant bond of understanding and frienship develops right away."

I'm so thankful to have met her! Thanks for sharing your time, wisdom, and strength. I look forward to many more meetings.

Jayen has been seizure free for 12 days! I wasn't posting this information for a while as I was kind of superstitious. I hope this doesn't make him have another. I did knock on wood! Everyday is a step closer to surviving this crazy diagnosis. I am so thankful for all the support we have received. Jayen will start early intervention next week. I'll let you know how it goes.

6 month check-up

My little chunky monkey is apparently not so chunky. At his 6 month check-up today he weighed 15 lbs. 14 oz which is only the 17 percentile. His is 27 inches long 65% and his head is 43 cm 25%. He is apparently very tall and skinny. That is not the same baby I see!
There was some concern about his development though. According to the Denver Prescreening Developmental Questionnaire II, Jayen is functioning at a 4 month old level. I didn't realize that is where he is. Kind of hard to swallow that one, one third of his life just gone. We will continue to work with him and we continue to pray everyday.

He qualifies

The Early Childhood program at Bellevue Public Schools just left my house. Would have never thought I would be doing an MDT in my living room. It just feels so weird to be on the other side.
Jayen will qualify for special education services as other health impaired. Someone will come to the house about every other week and monitor progress and teach us how to work with him. We hope that through all of our efforts Jayen will soon be meeting his developmental milestones.

Refill RX

I just signed for another $48,632.34 of medicine. In all Jayen's ACTH cost $145,877.03! That is rediculous. CuraScript just bought a new wing from my insurance.
At least it is working.

What? You're kidding, right?

I was really worried about the appointment today. Jayen was having seizures again and they were beginning to have fewer days between them too. Jayen has to be tired and ready to sleep when we do the EEGs. He was very crabby and ready to eat and sleep. It took a little bit but finally he fell asleep. From what I saw on the computer it looked worse than ever. I swore this wasn't going to be good. After the EEG we had an appointment with the neurologist. He came in the room and said well the EEG looks "fine". What? I asked "What do you mean fine?" He said he would read it as NORMAL!!!!!!!!!
How could that be? What is going on? I love this little ray of sunshine, but really? Are you sure? Oh my gosh, can I throw a party for this one. This was the best news I have heard in a really long time. We will start weening him off of the ACTH right away. It takes about 5 weeks to come down from the meds. If he stays seizure free we will look at taking off the phenobarbital. And if he still stays seizure free we will take him off the Topamax. This process of weening all the meds would take at least 6 months. On the other hand, if he continues to have seizures we will increase the Topamax until we can control the seizures.
We know that we are not totally out of the woods and actually have a long journey still ahead of us. We are so thankful for all the prayers and well wishes we have received from everyone. We know that we could not have gotten through this without all of you.

This little piggy went to market, this little piggy came to MY HOME!

I just can't believe how big he has gotten. What a little chunk. We are nervous for the appointments tomorrow. Will update when we get home.

10 days seizure free, 7 days, 3 days

After receiving his first shot Jayen had one seizure the same day and one the day after. The medicine was not fully in his system so it was to be expected. From Saturday the 24th through Monday the 3rd he was seizure free. 10 days, that was so great. On the 4th he had a seizure so we increased his ACTH. This dose seemed to be working. At least for 7 more days. On the 11th he had another. The next day we saw the neurologist. He increased the ACTH again and started another med called Topamax. The ACTH seems to be working ok on the seizures. We have definitely seen a drastic decrease in seizures, but the flip side is not the greatest. Jayen is continuously uncomfortable. He is hungry 24/7. He is up every hour at night. HE IS A MONSTER!
We are still waiting to see if the Topamax helps at all, but after having another seizure on the 14th I am not very optimistic about a lot of things. My heart is breaking every time he makes a little twitch or any little movement. I'm so worried that since the seizures are occurring again that our chances of growing out of this are decreasing daily.

EEG looked better but still having some seizure activity. Going up on steroid and adding another med (Topamax). This is crazy!

Everytime we go to the hospital Dalan throws money in the water fall and makes a wish for his brother. "Make Jayen all better!" he says, then throws the coin as hard as he can. He is such a good protector. I don't think he understands everything that is going on, but he tries his best to make Jayen feel better.

One week seizure free! THANK YOU, THANK YOU, THANK YOU!

Anyone got any good ideas of how to explain to a two year old that you have to hurt his brother in order to make him better? What a good big brother he is!

I was just handed a parental rights in special education booklet. Oh my how it feels to be on the other side :(

Insurance was billed $97,262.69 for our newest med. That is without any refills yet too. Hope this works. Got home from hospital Saturday afternoon. Been seizure free since. Jayen is in good spirits. He is going to be confined to the house for a while. Not taking any chances with the immune system.

I just gave my baby his first injection. He cried for 2 seconds, I cried for 2 minutes. This is going to be hell. Found out the meds cost $38,000 a vial. HOLY $#!+

Finally a name

Throughout all of the increase in medicines and the changing of the seizures we were still doing test after test. We have gotten to know the EEG technicians very well! We had the EEG at 9:45am, the doctor called at 1:30pm with some devastating news. The EEG showed hypsarrythmias. He was able to classify his seizures under a condition called Infantile Spasms. As stated numerous times in almost ever description of the disease, this is a "catastrophic form of epilepsy." Most of the outlooks I could research were not good outcomes. I was so devastated. I tried to call Matt at work. Again I would have to get him out of this last thing he had to do before securing this great job. I felt like I was doing it on purpose. I had no way of controlling it but I just felt like it was my fault.
We were told to get ourselves to the hospital as soon as possible. I packed our bags. We were going to be staying for at least three days. Dalan went with us to the hospital until Grandma Kuchta could get there. He got to go play at papa's house again and wasn't too upset about leaving. He gave his brother lots of kisses and told him to get better.
On April 22nd, we started our first hope in getting rid of this horrible disease. ACTH was our best hope. No one knew how it worked or what it exactly did. All they knew was that it worked in quite a few cases and it was VERY expensive. I can't stress very enough. ($38,000 a vial. We were sent 4 vials to begin with. Our first bill was over $97,000 thanks God for great insurance) Jayen had to get IM shots in his thigh daily. What a horrible experience having to give your five month old baby a shot in his little leg daily.
With the shots comes a lot of doctors visits. We are visiting our pediatrician on base twice a week for blood pressure checks, we see the neurologist at Children's Hospital once a week, EEG once a week, blood work once a week, and soon we will start working with the Early Development Network to try to regain some of the skills he has lost. This is one crazy journey!

What is this?

The day after getting out of the hospital we started noticing these "funny movements". After getting them on video and showing the doctors, the finally agreed that they were seizures. Jayen started having four to five episodes a day. We were constantly increasing his phenobarbital. He was so drugged up. It didn't even seem like his was the same little baby. We were worried mostly because it seemed he had regressed on some of the milestones he was meeting before. We told the nurse when we left the hospital that it seemed like he wasn't able to hold his head up as well as before. After two increases in the phenobarbital we added another medicine. Keppra was started on the first of April. The two medicines together seemed to help a little. By this point he was having two to three episodes a day. And on the 14th he was seizure free! But this wasn't a good turning point. The very next day his seizures starting occurring in clusters. He would start a seizure, come out of it, then immediately go into another one. This would occur five to ten times in one episode. This also prompted another increase in the pheno and the Keppra. The 16th was also a seizure free day, mainly because he was so drugged up that he couldn't even wake himself up. The medicines make him very sleepy.