Thursday, February 24, 2011


I have so much to update here on the blog, but first I have to brag about my sweet boy!

He hasn't had a seizure at all this entire month, PRAISE GOD!! However, his behavior was spiraling out of control and he was continuously bringing home bad reports from school and they mentioned that his therapists are not able to get through his behaviors during their sessions with him. He's also been out of control in every single social environment. There is no technique we can use to control him at all. We took him in on Friday of last week for an evaluation with the dev. pediatrician b/c we were told that ADHD symptoms show up at age 4. She immediately noticed that Jayden regressed a bit with his language (he NEVER talks in social interactions, only at home), and that his behavior was simply out of control. He was nice and calm when it was just us in the room, but as soon as the Dr entered, he screamed, banged toys on the floor, slid himself across the floor, and made loud animal sounds the entire time. It was very hard to even talk to the Dr, but it was what she needed to see. He quieted down when she talked to him. In a nutshell, she still agrees (even moreso now) that he is NOT autistic and that it is still too early to say that his behaviors are linked to ADHD. From what she saw, his behaviors are attention seeking and impulsive. She agrees that it may be due to the large amount of seizure meds he's been on, but she can't say for sure b/c she doesn't work with medications and side effects. However, she wants to re evaluate him next month after he weans off more of the meds.

I emailed his neurologist yesterday morning and she gave us the ok to start weaning off Trileptal and sent us a weaning schedule. He went down by 2ml, which is a pretty large amount. Today he went to school and when we picked him up, both his teacher and the teacher's aide came out and said "Wow!! Jayden had a wonderful day today! No screaming fits and no aggression at all!" They send the kids home with a behavior report daily with the following categories:

Attended to tasks.
Attended with (visual) cues.
Difficulty attending.

I actually just had to run downstairs to see what the first one was b/c Jayden has NEVER had that report this entire school year. 90% of the time he'd get difficulty attending and the other times he'd get attended with cues and then notes about bad behaviors. Well, we checked his bag today and his form said "ATTENDED TO TASKS" and the teacher wrote in the remarks section "Jayden was so much calmer today!! :) "

WOW WOW WOW!!! We were SO PROUD OF HIM!!! We made a very big deal out of it and took him for ice cream! We called Nana and she congratulated him over the phone. You could see the pride in his eyes :) I'm not sure what the odds are of his behavior turning around that quickly by simply reducing the amount of a medication, but he was on a very high dose, so it is possible. Today could have been a fluke. It could have been a coincidence. But he did wonderful today and it doesn't matter to us why. What matters is that he CAN do it and he DID do it! So today, we celebrate!

Thursday, February 3, 2011

We must be crazy...

Today we are moving. A 3 day process that will (hopefully) end on Saturday. This rental house has mice (along with other issues that we are not willing to live with) so we decided not to renew the lease and found a nicer place on the waterfront. With the death of my grandfather and Jayden being so sick with pneumonia, we contemplated putting off the move until things got better, but that would mean paying rent at two places b/c we already signed the lease to begin on the 3rd, which is today. Besides, who's to say that things will be better by next week? We first wanted to move on the 22nd, but Jayden was sick, so we put it off until the 3rd and now he's sicker. Don't get me wrong, I'm not believing for one second that my baby will still be so sick by next week, but I can see that it's not in our best interest to put off the move any longer, especially with so many friends and family around to help. My cousin has been VERY helpful this week. Keeping my sick baby while I attended classes and Mike was out of town on business. My professors have been so understanding and actually surprised that I still managed to make it to class this week with everything going on. I'm surprised as well. Despite all of the stress in our life right now, if I peek my head outside of this cloudy box, I see an abundance of blessings surrounding me. The Lord made sure we didn't have to endure this alone.

So today we move, mourn, and care for our sick baby (who is doing much better, just still extremely weak and tired). It sounds like a lot (it IS a lot) but we are equipped and ready to take it on. This is the road we have been led to and I pray and trust that it will lead to a better 2011!

Tuesday, February 1, 2011

In the midst of a storm

When it rains it pours...

Jayden went to the Dr about a week ago for a really nasty cough and wheezing. He had a low grade temp. He had to get a breathing treatment in the office and was sent home on an albuterol every 4 hours. He had a respiratory virus. Well, the cough never went away and then on Friday he started running a high fever. Tylenol and Motrin would bring it down but within a few hours it would shoot right back up as high as 105.2. I took him to the Dr today and chest xrays immediately confirmed he has pneumonia :( His O2 Saturation was at 97% so the Dr felt comfortable allowing us to treat him at home with antibiotics but if he still has fevers over 100 by Friday, she's going to admit him. He's very uncomfortable and has just been lying in bed all day complaining that his body hurts :(

Also, my grandfather passed away early this morning. Mom didn't want to tell me until I got out of the Drs office with Jayden. That's why she asked where I was when she called me twice before, then told me to call her back. I got the news in the parking lot of CVS. Cried my eyes out :( I was already missing him since last Sunday, which was the last time he was able to actually talk to us. now I'm missing him so much more. It hurts.

However, I cannot doubt that my Lord is carrying me right now. How else am I still able to function? My husband is out of town. I'm on my own right now with a baby who has pneumonia and I just lost my grandfather. I don't have my comfort here with me right now, yet I'm feeling so strong. Thank you, Lord, for carrying me.