Merry Christmas

We celebrated Christmas with the Kuchta's on December 18th. It was so much fun to have everyone together in one house. The kids all had fun running around and playing together and we all went to church together. It was what Christmas is really about.

We stayed home Christmas Eve and waited for Santa to come to our house. We sprinkled reindeer food outside so the reindeer knew where to go, set out our pictures with Santa so he would remember us, and plated cookies, cheese, and milk for Santa. The boys were in their matching p.j.'s and Santa finally decided that Dalan was good enough to have him stop.

The boys were spoiled rotten this year. I can't believe all the stuff Santa brought them. I think next year he will have to bring much less!!!

After we played with all of our toys, put everything together, eat lunch and dinner, and wore out half of the batteries, we went bowling with Aunt Theresa, Unlce Adam, Uncle John, and Grandma and Grandpa Hochstein. This was the boys' first time bowling. They both had so much fun. I think Dalan has found his sport. Jayen and mommy were the cheerleaders. Jayen loved clapping and yelling for Daddy and Dalan!

On Sunday we went to Theresa's house and had Christmas with the Hochstein's. How fun it is to get the kids together.

Soy good!

Jayen has been on soy formula for a month now. Things are going so well. He is not throwing up anymore and is eating almost everything we put in front of him. Today at therapy he was eating chicken nuggets and huge chunks of fruits without any problems. What great progress he is making. My little baby is becoming such a little man. We go back to see the GI doc on the 24th of January. Just hoping things keep improving!

Happy Thanksgiving!

This is the first holiday that is not Jayen's first. I can remember one year ago and the teenie tiny little thanksgiving outfit he was in. Oh my this is going too fast.
We spent Thanksgiving at Great Grandma Foxhoven's house with lots of family. Then on Friday mom and grandma left the house at 3:30AM. (So she can't be mad at me anymore for waking her up that early!) They went shopping and the boys got to stay home and play.
Things have been going very well. Jayen is eating a whole jar of stage 3 baby foods now. He is willing to eat and often seems to enjoy it. Hope this lasts!

GI doctor

We met Dr. Zapata today. He isn't really sure what is going on with Jayen right now. We spent about an hour talking about Jayen's medical history and what was all going on with his puking. Right now we are just going to start some interventions until more of the test results come back. We were so close to being done with all meds until Dr. Zapata suggested getting back on an anti-reflux medicine. We also have to start him on a next step soy formula. Hopefully he will start eating more and putting on some weight. (I know, crazy to wish for again)

Upper GI x-ray

Jayen had his upper GI x-ray. Jayen was not allowed to eat anything since midnight the night before. Daddy is still back home trying to get that big buck so mommy was stuck dealing with a crabby baby in the middle of the night. Our appointment was scheduled for 8:40. We dropped Dalan off at Emily's and headed for the hospital early in the morning. Jayen was very hungry! They gave him barium to drink so they could watch it during the x-ray. I'm sure that was exactly what he wanted to drink ;)
The x-ray was pretty fun to watch, except for the part when they had to strap Jayen in and turn him upside down. I can't believe all that this kid has had to go through! The doctor's had to watch the barium go in all the way through to when it came out. As far as they could see, everything looked good. Tomorrow we go see the GI doctor and will hopefully get some more information.

4 point crawl, 2 point buck

This is daddy's big deer hunting weekend so we all headed up North to stay with grandma and grandpa. Just like clapping, Jayen had to show off his new crawling skills to daddy and grandma first. Daddy and grandma started yelling, did you see that? And of course, I didn't. Jayen decided he was going to get up on his hands and knees and crawl. Way to go buddy!!! What huge leaps you are taking in your milestones. You will catch up in no time. I'm so proud of you. Daddy may have seen you crawl first, but I got a deer first. Mommy got a 2 point buck (it was a spike buck) and daddy hasn't gotten anything yet. Good thing he has the rest of the week to try again!

the video is from my cell phone and isn't high quality

Birthday Party

We celebrated Jayen's birthday today with family and friends. It was so fun to play games, laugh and reminisce about the past year. Mommy made the birthday cake. There was one for Jayen to smash and one for everyone else. Jayen wasn't sure about smashing it, so big brother Dalan had to help out.

We shared our story about Dalan making wishes every time we went to the hospital with Jayen. He would throw coins into the fountain and say, "Make my brother all better." Dalan's wish is starting to come true. Jayen has been seizure free for almost 6 months. We wanted to help everyone with their deepest wishes too. Mommy and daddy built a wishing well and gave everyone a penny to make a wish. We will use the wishing well as a plant holder and bury all the coins in the well. We pray everyday that everyone's wishes come true.

Bang, bang, bang

For a few weeks now we have been working at therapy on getting Jayen to bang to objects together. I think I have said, "Jayen, bang, bang, bang," more than a million times. But, it finally paid off. Jayen started clapping for the first time today. Of course, he likes to show daddy his tricks first then waits a couple of days to show mommy. I hope to see it soon!

HAPPY BIRTHDAY JAYEN!

A little cake, a lot of fun

Our little MIRACLE is turning 1!

Jayen started his birthday celebrations by going to the doctor. Yeah, yeah not the best birthday present ever but we had to do it. Jayen is only in the 4th percentile for weight. He is still having issues throwing up so we are going to get an upper GI x-ray and consult with a GI doctor. Hopefully we can figure out why he is not eating and why he is still puking.

Next we got to go to therapy. Again, not the funnest place to be but has to be done. We brought a GIANT cookie and a thank you card to our therapists. They have done so much for us. We are so thankful for them.

We did have some fun when we went out to eat. Just like his older brother, Jayen celebrated in style at Hooters. We were surrounded by friends who had shared in this crazy year with us. It was awesome to see this huge milestone. I remember 6 months ago not being sure where we would end up. I'm still in that place but it doesn't seem as scary anymore. We had some wonderful family and friends that helped hold our hands through our toughest moments. Without them, I don't know where I would be.

First Halloween

Jayen got to start his Halloween celebrations early. The Pediatric Therapy Center, where Jayen goes to PT and OT, had a special trick or treat session for the kids on Wednesday. Dalan and Jayen both loved the obstacle course.

We had lots of celebrations. Our mommy play group also had a special Halloween party for us on Saturday. Then we went to a friends house for a costume party. It was all so much fun.

On Sunday we went trick or treating in our neighborhood. When we were all done we came home and ate supper on our new porch. It was so much fun to sit out there as a family and pass out candy to the other trick or treaters. It was such a great weekend.

Neurology Appointment

Well we had our neurology check-up today. The doctor came in and asked how things were going. After a few minutes catching him up on everything that has happened, we both decided that it is time to start tapering him off the Topamax. YIPPPPPPPEEEEEE! We will start tapering tomorrow. It will take us 6 weeks to get off the meds because it has to be done very slow so it doesn't induce seizures.
This news comes with great joy and great anxiety. Once we are off all medicines are the seizures going to return? Are we going to keep making the progress we have been? I am just so nervous about what is to come. We will just keep praying and hoping for the best.

IS awareness week

This week starts Infantile Spasms awareness week. I want to help raise awareness because I think if it wasn't for our persistence that Jayen would not have been diagnosed as quickly as he was. I still remember the doctors trying to tell me that he was just getting startled. I got out my video camera and recorded Jayen until he had a seizure. I sent it to every doctor and anyone I could think of. I knew it was more than just getting startled. I pray that this does not go undiagnosed in others. The quicker the diagnosis the better the outcome!
Praying for a cure!

This is HUGE!

I have been practicing and practicing and practicing and look what I can finally do. I can move my tongue and bring food from the front to the sides. I am not choking on my food as often as I was before. I think I am getting this stuff now!

This has taken Jayen months of therapy to finally be able to do. We have done exercises inside his mouth, outside his mouth, with his tongue, and with his cheeks. This has been a long haul but we are finally getting somewhere.

My angel

This is my angel Jayen. He was sent to me from up above. He has taught me so much!

He has been through so much in such a short amount of time.

He never complains, he never takes a day for granted.

I wish I could be more like him everyday!

Love you buddy!

Once again, One down Two to go!

We are finally done with the phenobarbital!!! What a journey with this medicine. I remember when we started with 1mL. We kept increasing it with almost every seizure. We were up to 6mL twice a day before we started coming off of it. It was an amazingly long adventure coming off of it. We could only come down 1mL at a time. So each week we took one of the doses (morning then night) and decreased it 1mL. It took 12 weeks but we are finally done!

One down, one up

Well we were so close to being down to just one medicine. We went to the doctor today to talk about the possibility of reflux. Our OT thought that Jayen might have reflux based on the amount of times he is arching his back and how he refuses to eat.
I was very adamant before we went to the doctor that I WAS NOT going to put him on another medicine with the "chance" that it might do something. I wanted to know for sure that he had reflux and that we for sure needed to treat it. Well, I left the doctors office going totally against what I thought. The procedure to check for reflux is very invasive. They would have had to put a tube down his throat and test the ph levels over a certain period of time. Dr. Toth convinced me that it would be much less harmful to put him on the medicine for a month to see what happens. If we see things looking better than we may continue, if not then we know if is not reflux. This mommy still thinks it was just his way of moving. Jayen's only rolling to get where he wants and I think that the arching was just one other way of seeing what was around him. I guess we will find out more in a month!

Who loves Vala's?

Jayen got to experience Vala's pumpkin patch for the first time this year. We believe we have started this as a family tradition now. It was so much fun! Jayen was so alert and alive with all of his surroundings. It was so great to see him interacting with everything! Can't wait to do it again.

Millions of peaches, peaches for me

Jayen just ate a whole container of peaches!! After a terrible week with food again, our OT suggested going back to the basics. The first time we got him to eat it was peaches and cheddar flavored puffs. We are just going to stick to those for a little bit longer. It seems as if we take a few steps forward then immediately take a few back.
I'll consider today being another forward then. He ate a whole container. Wow! That has never happened before. He was very tired so I think it was easier to just shove more and more in. But he opened his mouth and was giving me cues that he was ready for another bite. It was great to see him doing this.

On another note. We are down to our last week of phenobarbital today. He is only getting 1 mL at night now. Almost down to just one medicine!!

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!