Tuesday, September 29, 2009

Busy Bees!!

We finally added an OT to Jayden's group of therapists and I'm happy to say that after a very rude encounter and cancellation of the first appt by one OT, we did end up with an AWESOME OT. I am definitely a true believer in that everything in life happens for a reason. I cannot say enough good things about Mrs. L. She's been here for 2 weeks now and she's taught me things about Jayden's sensory issues that I didn't understand. So with that said, we have therapy 3 days a week, and Jayden started a MMO program once a week. He goes on Mondays and he loves it! Yesterday he actually skipped to the door of the building singing "School, school, school!" It makes me feel good to know he loves it that much. He's also been having soccer games and practice, so between all of that and add in my photo shoots, we've been busy! Things are going well, health wise, and Jayden is going to see a neurologist in New Orleans soon for the seizures. I just wanted to post an update on us and I'll leave you with some pictures that Jayden actually cooperated with me to get. This certainly makes this photographer mom happy :D

Friday, September 11, 2009

When will he get a break?

Yesterday I called the nurse about Jayden's EEG results. She told me that they hadn't received his report yet, but she would call to request it and give me a call with the results. Now I went into all of this with the frame of mind "We are simply RULING OUT seizures.". I know that Jayden does have some concerning behaviors that appear to be seizure like, but I also had so many "specialists" telling me that it could very well be behavioral. So, in my mind, I had prepared myself for a normal report, especially since his CT scan was normal. Well the nurse called this morning and she sounded a bit concerned so I immediately knew they found something. She said "Jayden's EEG report is actually showing some seizure activity." My heart sank. I was fighting back tears b/c my son was playing on the floor right at my feet, and my husband was sitting across from me. Besides, imagine how that nurse would have felt if I went into hysterics over the phone?! So I kept my cool and she went on to tell me that he has already been referred to a neurologist and they will try to see him asap. I hung up the phone and my husband just looked at me. I told him that was the nurse about Jayden's EEG and that it did show some seizure activity. My husband said "Oh no..." At this point, we have no idea when he's having them b/c during his EEG, he did cry in the beginning, but he showed nothing like the behaviors we were concerned about (stiffening of his body, growling, blank stare, and sometimes drooling). He did fall asleep for the test and I know that seizures during sleep are common. So of course, now we worry. All we can do is wait on the appt and pray for some answers for our little guy. We are getting there b/c just a few months ago he was considered just a kid going through the terrible 2's. If you are the praying type, please eep our little family in your prayers!

Thursday, September 10, 2009

And the hats are back...

Just as I suspected. When Jayden was "evaluated" last month by the behavior analyst, I blogged about it here and mentioned his strange use of hats:

"... he uses that hat to avoid eye contact when he isn't in control. Jayden started wearing hats like that when he was having speech and OT once a week. He would wake up and immediately look for a hat. It had to be b/c he knew he would have therapy and he wouldn't be in control. He ALWAYS had a hat on his head. He stopped wearing the hats about a month after they stopped coming and now he just grabs them as needed, like this morning."

Once he stopped having therapy in April, he stopped wearing the hats. We couldn't even get him to wear a hat if we wanted him to. Now, he's been back in therapy for 4 weeks now and the hats are back. 24/7. He even sleeps with the hat on. He HAS to have the hat on the counter, in his view, while he's taking a bath. And it goes right back on his head after I change his clothes. To Jayden, those hats are more than an accessory. They are a sense of security and control. So here is where my issue lies...I'm not sure if he will be able to wear his hats to school starting in January. Should I bring this point up to his behavior analyst and get her to start working on him not needing the hat? I worry about how it will affect him, but I know it is something that we need to address...

Tuesday, September 1, 2009


It's soccer for tots :) We signed Jayden up and his first practice was this evening. My husband had been working with Jayden to kick the ball, so he was ready for action. And he looked darn cute in his shin protectors and soccer socks!

We got out there and all of the kids (there are 7 on the team) were kicking their balls about. Jayden took his ball on the field and joined in. Then the coach had the kids to line up on one end of the field and have a parent on the other end, and the kid was to kick the ball to their parent. Jayden had a hard time waiting for the signal to start, but he made due. After that, the coach had the kids to put their balls aside and they were to only use 1 ball. The kids had to line up and wait their individual turn to kick the ball. We knew Jayden wouldn't be able to do this. It would mean that he HAD to interact with the other kids and he no longer had control over the ball. He didn't like that and any attempt to make him wait in line started a tantrum. We have him out there to have fun, so we didn't force him in the line. He wandered to the field next to us and just sat there and watched the other kids play =( It was tough for me to see the other kids having fun and hear their parents cheering for them and then look over at my son who has distanced himself from the team. We gave the coach a head's up on Jayden's condition and he did his best to not make Jayden feel left out, but with a team of 7 players that's tough. When they simulated a real game, it had to be 3 against 3, so one child would always be left waiting their turn and of course it was always Jayden b/c he didn't want to interact with the other kids. We know he will get better and we know that this is good for him so we won't take him out. I just hope that it gets easier for me to watch...