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!