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 ;)