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.

One year ago today Jayen was diagnosed with Infantile Spasms. What a crazy journey this has been and I'm sure will continue to be. Love you honey!

Going Home

We finally get to go home today! We are so excited to get out of here and pick up Dalan. We miss him! The wires are finally coming off and we get to show off our hats and fun outfits that don't have buttons up the front. We get to smell the winter air (yep it was snowing here!) and see the sun shinning. This is going to be a long drive home but we are ready for it. Hoping that we have finally found a good mix of medicines that will keep Jayen seizure free. I know this is going to be a long journey but I think I am a little more prepared now.

Getting ready to take all the wires off!

Although we were excited to get the wires off, it was not a fun process!

First real bath in over a week!

Finally get to wear our cool hats!

Dalan I missed you!!! They held hands and shared oreos almost the whole way home.

They snuggled for a little bit.

Then we asked who wanted presents!

Jayen got a new basketball and Dalan got "Red" from the Mall of America.

Well I'm not sure what we have all answered being here. I keep asking myself what good came out of this. I am happy that we are off of one more medicine and that he doesn't seem as "drugged" as he did before. I am happy that we got a seizure while hooked up to the EEG. Beacuse of that we found out that he has myoclonic tonic seizures. But was it all worth it? I keep asking myself and I keep getting different answers. (Yes, I am talking to myself and answering myself!!)
I feel like we came on 4 medicines and are leaving on 4 medicines. We came having seizures and are still having seizures. We still don't have an underlying cause and I'm not sure we ever will. I wish we could have gotten him on a better dose of medicine before we left too. I'm so scared and nervous that we are just going to be chasing meds again. I don't want to call the doctor in a week reporting we are still having seizures and for him to just increase meds. I don't want to go back to that feeling of always increasing or adding meds.
I have so many concerns and thoughts running through my head. I went back today and started reading some of the first posts. I also started reading more of the information about Jayen's original diagnosis of Infantile Spasms. I remembered reading about how catastrophic this really is and wondering where do we fit into all these statistics. Are we going to come out of this as a pretty healthy normal kid? What will school be like? What will he be when he grows up, are things unattainable now?
We are hopefully leaving tomorrow with a few plans in place. We will be leaving here on 75mg Topamax twice daily, 2 mL Klonopin twice daily, a B6 vitamin twice daily, and a new increasing schedule for the Lamictal.

YIPPIE!!! A seizure on wires and video

Last night Jayen had a cluster of seizures. Mommy was so excited she started crying and high-fiving daddy. Yeah, yeah. I'm such a dork. The doctor laughed at me this morning saying he could see my excitement in the video. Jayen's seizures are classified as myoclonic tonic seizures. We started him on a B6 vitamin and are working with our neurologist and a neurosurgeon to figure out the best medicines for him to be on. So far we have increased his Topamax from 60mg to 75mg twice daily and added the B6. We are still trying to figure out why he is having the irregular heartbeats too. Hopefully cardiology will have some more answers tomorrow.

Nothing new today. Still just waiting for a seizure. Talked to the doctor a little more today. He answered a lot of questions. We really don't have a whole lot of answers until he has a seizure. I do feel that our time here is not totally a waste. We have taken Jayen completely off the depakote and and weaning the klonopin.So we have already simplified his medicines and he doesn't seem as "drugged" as he did before. I think we are going to try to give it a couple more days. PLEASE PLEASE PLEASE help us pray for answers. God has a plan and we are trying to understand it. We are giving it up to him and hope he leads us in the right direction.

Still Nothing

We have decided to go down on the depakote again. He will be completely off the depakote tonight. We will increase the lamictal as previously prescribed by Dr. Pavkovic in Omaha. We are just hoping and praying that we can catch a seizure. Mommy really needs answers. I hate not having any answers, but even more I hate not having any questions. I just don't know what to do. I am at a complete loss. Where do we go from here? Where is here? What is Jayen's plan for life? I feel like I can't help him get where he needs to go in life if I don't know where he is supposed to be going. Just going crazy today. REALLY want a seizure and answers!

Crazy Wish

Last night Dr. Frost, our neurologist here at Children's St. Paul, decided to decrease Jayen's depakote to see if that will bring on a seizure. Nothing as of yet. Mommy and daddy are trying to recreate the situations at home when Jayen is having seizures. We made Jayen walk for an hour today. He took puzzle pieces from Mommy and walked them over to daddy and put them in their place. He also did some independent steps from the wall. We are still hoping and praying for answers and the only way to get them is to see a seizure while on the EEG. Crazy thing to wish for! Jayen walked to daddy and beat his previous record. He can now take 7 steps from the wall.

24 hour EEG

We made it to Children's St. Paul yesterday. Jayen was hooked up to an EEG and they began recording. We are hoping and praying that he has a seizure as soon as possible. I know kind of crazy to wish for, but the sooner he has one the sooner we have answers and can go home. We found out after we got here that Dalan is not allowed in the hospital. Because it is peak flu and cold season, no one under the age of 5 is allowed to visit the hospital. Matt met my mom half way so Dalan could stay with them until we can get him. No exactly sure when that will be. This is just a waiting game until he has another seizure. I guess we will just HURRY UP AND W.A.I.T!

We packed the car and are on our way. 6 hours with two kids, we will see how this goes!
Minnesota or bust!

After being on the phone and bothering every single person I could get to answer the phone, we finally got our referral to somewhere that would take us within the next month. We are headed to Minnesota to the Minnesota Epilepsy Group. Kind of nervous but more excited. Wish us luck!

Smooth, yeah right!

Of course, why would anything go smooth? Found out today that our insurance request for the Mayo clinic was accepted!!!! How exciting. That is exactly what we were hoping for. However..... when I called to schedule an appointment I was informed that they are booking out for June and July right now. I can't wait that long. I can't have my baby going through this until then. Again, I have been on the phone all day trying to figure out what to do. I called Tricare to see if we could just switch the referral to the Minnesota Epilepsy Group. That was denied because of how the referral was written. I can have the doctor resubmit the paperwork changing the destination or depending on the urgency have the base call Tricare and request it to be changed. I also have to beg him to write the referral as inpatient rather than outpatient as they will keep us there for a little bit and run all the tests at once.
I'm thinking this is going to be a headache. I hate putting Dr. Toth out. He has been more than accommodating and I don't want to cause any problems. He also has to write a summary of Jayen's history so they know what kind of tests to order. We basically have to write a resume asking to be accepted to either one of the clinics (Mayo or Minnesota).

I am just so ready to have my baby back and seizure free. I hate ruffling feathers, but I don't know what to do. We need to get things figured out and quickly. We know it is going to take us at least two weeks to get into anywhere, so the longer we wait to figure out where the longer it will be before we have any answers.

Busy Busy mommy

Wow, mommy has been busy the last couple of days. I have been researching pediatric neurologists and epileptologists non-stop for three days now. I have really been contemplating our recent medicine changes and the current course of treatment. I talked to Dr. Toth and asked if/what I had to do to get a second opinion. I was so happy when he gave me the ok and said he would get the ball rolling on a referral. There are just so many different decisions to make now.

I was told about a doctor here in Omaha who is seeing some friend's kids. He came highly recommended. When we tried to book an appointment with him we were told he doesn't see pediatric patients. I was a little disappointed. Our second and third options are the Mayo clinic and the Minnesota Epilepsy Group. After meeting with Dr. Toth today he is going to do a little checking on both to see who has a slight edge on Infantile Spasms. It looks like we are going to be headed to Minnesota. (As long as insurance accepts our request!) We are saying prayers that we will be lead in the right direction and that everything goes smooth.

Still having seizures so upping meds. Jayen is currently take 4 Topamax pills twice a day, 2 Depakote twice a day, Lamictal is a very slow progression to 4 pills twice a day, and now we upped the Klonopin to 2mL 3 times a day. Jayen is going to be very sleepy from all these meds. I wish he was his happy self again. I don't like seeing him all "drugged" up.

What a year

One year ago our crazy journey with Infantile Spasms began. I was laying on the couch with my 4 month old baby when suddenly his arms started twitching. You are one strong little man Jayen. If I could take it all away I would do it in an instant. Love you!!!

"Too early to say"

Well, meet with Dr. Pavkovic today but didn't get any answers. Jayen's lab results came back and we decided to up the depakote too. Jayen is now taking 4 topamax and 2 depakote pills every morning and night.
I really didn't get any questions answered. Every time I would ask something I would get the response, "It is really just too early to tell." The only thing I was given is a possible name. I was told if I had to have a name for it it would be called secondary generalized epilepsy. We are mainly focusing on controlling the seizures right now and will work more on the causes later.
I really wish Matt was here to help me through this. I think part of me dies every time I see Jayen having another seizure.

Things have been crazy around here. This crazy journey is no where near over.

Jayen continues to have seizures. We have increased his Topamax twice now and just aren't sure where to go from here. We called the after hours line yesterday and the doctor didn't want to do any more increases until we get some results back from lab. Jayen had some labs drawn today, so we will hopefully hear back from the doctor soon. The medicines can cause problems with his kidney and liver functions so we have to keep a close eye on it. We see Doctor Pavkovic (neurologist) on Wednesday and I have so many questions to ask. I hope I don't forget any of them!!

I was told that the Topamax would decrease Jayen's appetite, but I can't believe it should completely stop it. He hasn't eaten much at all. I got him to eat some of a hot dog and some cheetos for lunch yesterday, but nothing since then. He trew up last night and again today and has been pooping through EVERYTHING. He has had 3 baths in the last 12 hours.
I am taking him in to see Dr. Toth today. Hopefully he has some answers or suggestions!

We went to therapy today to try to keep our routine and to get out of the house. Jayen was upset but actually did a great job. He stood independently for 18 seconds and even took 4 steps away from a wall to me. He is making great progress and I think the SMOs are helping a lot.
Jayen was very tired after working so hard. I tried laying him down when we got home when he had three seizures in a row. I thought the drugs were supposed to work!!! Well neurology said to up the Topamax and see what happens. I just want this under control. I hate seeing him go through this.

Hospital Stay

We spent the night in the hospital. It was a late night and a very early morning. Jayen woke up at 4am and wouldn't go back to sleep. He was so tired but you could just tell he didn't feel good. About an hour later he had another seizure. Poor little guy. I just don't know how to make things better.
We had the EEG around 9:30 then waited to hear from the neurologist about how it read. We were told they didn't see the hypsarrythmias that are associated with the Infantile Spasms but they did see that he was having irregular spikes. He had potential for seizures was the answer I was given. Not sure if that meant they didn't think he was really having seizures or what "potential" meant. The doctors are confident that we should be able to control the seizures with prescriptions. We are going home with two prescriptions; Topamax and Depakote.

Daddy left again and guess what happened

Daddy left on Sunday for Mississippi. He is attending the NCO academy. Just as before, Jayen decided to have a seizure today. Two days after daddy left. We were seizure free for 9 months. What happened?
After therapy, I took Jayen with me to run a couple errands. I was trying to him out of the car seat when we got really stiff. I wasn't sure what was going on, but I knew it wasn't good. I called neurology and left a message for someone to call me back. Two hours later I still hadn't heard from anyone. I called again and as I was on the phone with a nurse, Jayen had two more seizures. The nurse talked to the doctor and called me back. In the meantime he had another one. I was advised to take him to the emergency room and have them page Dr. Pavkovic. We waited for quite some time to be seen in the ER. After seeing the ER doctor he called Dr. Pavkovic and they decided to send us home with a prescription and to come back for an EEG as previously scheduled. That was in 2 1/2 weeks. They wanted me to take my baby home and wait. We didn't have any other choice but to go home. I no more than pulled into our driveway and started to unbuckle him again and he had another seizure. I called neurology again and said I can't wait. We were told to come back and they would admit Jayen and start him on Depacon. It is an anti seizure medicine that can be given intravenously. That way we wouldn't have to wait for the oral medicines to get into his system.
We started the IV medicine around 10 and at 10:30 Jayen had one more seizure. It was a long and scary night!

Called neurology today. We set up an EEG for March 7th to see what is going on. Still not sure what these movements are, but they are different. They are just not quite right.

Funny Movement

Jayen was running errands with mommy today while daddy and Dalan were packing. Just before getting out of the car Jayen kind of started acting funny. I wasn't sure what it was, but I knew it wasn't right. I think I am going to call neurology tomorrow and talk to someone about it.

More teeth! Jayen has now gotten all of his first year molars. Thank goodness! He had one that looked impacted and was really bothering him. I'm glad we are through that set. Can't wait for more! ( ;

Husker SMOs

Jayen got his SMOs today. He was not happy about getting them, mainly he was not happy with the stranger trying to put them on his feet. I am pleasantly surprised at how hidden they are under his shoes. When we ordered them I had to pick out a design. I wasn't sure what he liked now or would continue to like a year from now. I picked out a Husker theme knowing we would love them now and a year from now. I think it was a great choice!
Jayen does well with them on but hates when you play with his shoes or the orthotics. I hope these work. Can't wait to see him stand and walk!

First Haircut

Monday night dinner at Gina's house turned into a quick haircut. Jayen's hair NEEDED to be cut. We had tried a couple times to go see Ms. Becky on base. That is who does Daddy's and Dalan's hair, but every time we went there she was too busy. We were so excited when Gina could do it. We love how she does mommy's hair and new she would do awesome with Jayen's too. Thanks Gina! He looks like such a little man now. (And exactly like cousin Hunter!)

BPS speech evaluation

I have been concerned because Jayen hasn't been saying many words. He says dada ALL the time, but only occassionally says mama (when he is hurt or wants me to hold him).
We talked a lot about how children often focus on one area at a time. Since we are working on walking and more physical things, the oral motor is kind of waiting in the background. After meeting with the speech therapist we decided to keep her on a consultant basis. We won't see her regularly but we will be able to contact her and get her opinion/advice.
I think we will do our speech evaluation at PTC and get a second opinion as well.

Dr. Toth's good news/bad news

We had our appointment with our favorite pediatrician Dr. Toth today. He explained so many things to me. Jayen is gaining weight finally!! He would like to contribute it to the fact that he is eating a little more and he is doing so well on the formula. He agreed with the GI doctor about keeping him on the formula for a little longer, possibly even until he turns 2. The formula contains more calories than a store bought soy milk. Jayen needs those calories right now. I also asked about the prescription and why we are still on that too. We are not sure, nor were we ever sure, that Jayen has a reflux issue but if he did and we didn't treat it, it could cause a lot of damage to his esophagus. The medicine he is taking is so safe that it isn't worth the risk of not having him on it.
We are so thankful for always having his straight forward answers. He has been a lifesaver to us and I don't know what we are going to do without him. Yep, he gave us some VERY bad news. He got orders. (That means he is going to a new base.) :( We will miss him horribly! THANKS DR. TOTH FOR GETTING US THROUGH THIS CRAZY JOURNEY!

We had therapy today and told Mrs. Kristen all about the doctor's appointment yesterday. She agreed that it was kind of crazy to do a feeding evaluation on him. He is eating almost perfect now. She was a little frustrated and was talking about how she needs to meet with the doctors to understand their reasoning. I invited her to come with us when they do Jayen's. So, we scheduled it together. I'm so excited that she will be there. I really trust her and her opinions and am thankful that there is someone there who is knowledgeable about Jayen and will ask appropriate questions. Matt will be gone so it is also one more person who will be able to help me relay everything later!!!

GI follow-up

We had our follow-up with Dr. Zapata, our GI. He has a very deep accent and it takes everything I have to translate just the words that are coming out of his mouth that I think I am still trying to actually absorb any meaning out of it yet.
Jayen is doing very well on the soy formula. He isn't throwing up hardly at all anymore. The doctor was very happy with his progress. We are going to stay on the formula for at least 3 more months then follow up with him again. In the mean time he would also like us to do a feeding evaluation at Children's hospital. I'm not exactly sure why he ordered this and at the time I didn't really know to ask.
I am a little disappointed that we are continuing the formula and the prescription, but I understand that neither one is causing him any harm right now. We see our pediatrician on Friday and I think I will ask him a few more questions then.

Jayen had therapy today and the orthodics specialist came. He observed Jayen walking and standing, then he took the time to explain everything to me. He showed me why he and the therapist were concerned. Jayen has pronation in his foot. His leg, ankle, and heel bone do not line up.

Jayen was fitted for SureStep orthodics. The SureStep system uses the principle of compressing the foot through the use of an extremely lightweight, thin and flexible plastic. This allows for more natural movement of the foot and ankle while still maintaining proper alignment in standing, walking, running and jumping! Jayen will wear these until his foot grows out of them, usually 9-12 months. They look like the picture below. We picked a different pattern for Jayen's though!

Supra Malleolar Orthosis

Jayen had physical therapy today because of the snow storm and a change in the schedule. He has been having occupational therapy twice a week but our physical therapist left and they have not found a suitable replacement.
Jayen was showing her all his cool new tricks. We had to do his standardized test again because his goals were still things like sitting for 30 seconds, or rolling over. We are now working on standing for 30 seconds independently, taking beginning steps towards walking, climbing down stairs. He is making so much progress and I can't believe where he has come from to where he is now.
The therapist is a little concerned about his steps when he walks. She noticed a slight inversion of his toes and eversion of his right foot. He likes to walk on the outsides of his feet. She suggested we look into getting him Supra Malleolar Orthosis (SMOs). The SMO is designed to maintain a vertical, or neutral heel while also supporting the three arches of the foot. This can help improve standing balance and walking.
Hopefully we will find out soon. We have therapy again on Thursday, but we are not sure when we will talk to the orthotics specialist.

Happy New Year

Matt and I started this tradition before we had kids, so it is so much fun to be able to share it with them. We got food at a drive through and headed out. We love to watch the fireworks downtown but hate the traffic and cold that come with it, so we started going to the top of Harrah's casino parking garage and sit in the car and eat until the fireworks start. Or on really cold nights like this one we just stay in the car and listen to the music that coordinates with the fireworks.
What a great tradition and such a great start to a new year. Can't wait to put this year behind us and see what next year brings!

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!