EEG Results

We have the preliminary results from Jackson's EEG yesterday. There was some abnormal spiking on his EEG...mainly on the right frontal lobe where they did not resect. It did look MUCH improved and wasn't a necessarily a bad reading, but there is some abnormal waves. This basically means that when abnormal spiking is present, then you are more susceptible to seizures. However, Jackson is still seizure free!!!!...and can continue to be even with the abnormal spikes. If we took away all his meds then he could be at risk for having them. (Also, just to note the "abnormal" spikes are completely different readings than when he had Infantile Spasms)

My Neuro still has to talk to Dr. Chugani in Detroit, and decide if we should wean off the Pheno at this point. So we will see what they decide. As much as I would like to have him off one of the 3 meds, I will take no seizures any day over less meds. He did say that over time it could continue to improve, or he may have some abnormal readings his whole life and still be seizure free. We just do not know at this point! He was giving me a lot of different scenarios of kids that are now grown that he has treated.

We continue to look at the positives that Jackson is almost 5 months seizure free and progressing in his development. He is a different child and continues to make up for the delays from the Infantile Spasms. Our Neuro was so pleased with Jackson and where he is today post surgery.

I will let you all know once they have the full reading and feedback from both doctors. Thank you for your concern and prayers! It means so much to us!

*A picture above of Jackson during his EEG.

Big Day Tomorrow

Jackson is pulling up to standing now! This is exciting news in our household. He is doing so well. He loves to stand up now...pulls up on us, the couch, his pack'n play, and his large toys. We are amazed at the progress he has made since surgery! Such a blessing in our lives!

Tomorrow, we go for his 1st EEG post surgery. Please pray for great results! We want NORMAL brain waves, so we can start to wean off one of the medications! That would be awesome!

My mom is going with us since Tony has to work. We meet with our Neuro at 9 am prior to the EEG. Then, the EEG is scheduled for 10 am. Our doctor could only fit us in before the test, so he will call later in the day with all the results.

I'll keep everyone posted! Thanks for checking in on him and for your continued prayers!

A Look Back At History In The Making

This is Jackson's 1st Year slide show that his Uncle Adam created for his 1st birthday. He just added it to the blog for us. Jackson was born prematurely at 28 weeks. Even though he was early and so small, he had no complications in the 9 weeks he stayed in the NICU. It shows what an amazing little fighter he was from the beginning!

His infantile spasms did not begin until 7 months and you can tell time frame as soon as you see those "steroid" cheeks! He always had chubby cheeks, but nothing like with the Prednisone and ACTH.

It is hard to believe Jackson will be 2 this April!

A few more pics...

One of our therapists brought us this cube chair and tray which is great for Jackson to "work" in. When he is in his high chair he just wants food. It is a great for so many uses! I was just complaining how big the walker was, but now he is starting to walk on his own in it. The last picture is Jackson in a Snug Swing at therapy...you can barely see his head. All the swinging is good for him, and gives him the motion he needs.