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.

End of January Update

Sorry I have not posted in a while!!! January has been so busy and time has just gotten away from me. Jackson is still seizure free...now 118 days! What a difference each day makes. We see so much progress each and every week. Little things that surprise us. For instance, in the picture above..he is on the bull swing at private therapy. Before, Jackson would never grab anything to hold onto. He would not hold a steering wheel, handle bars, a swing rope, etc. He grabs toys and uses his hands, but never really for defense mechanisms or to hold himself. When he had seizures, it really affected the use of his hands, and he was quite sensitive of his hands. Well things have changed. He now grabs onto his handle bars, steering wheel, whatever he can grab onto, and the latest he held the rope of this bull swing, on his own, even as his therapist swung higher and in circles. It was so great to see! I did not even know he could do it. He just did it...it clicked. "Little" things like this are so BIG to us. Now with therapy and no seizures, it is starting to happen more naturally for Jack...and it is so awesome! Then tonight, I went into the living room and he was trying to pull himself up on the couch from kneeling position. Another, huge "milestone" for us to witness and we appreciate so much!

He has not started crawling yet. We are getting so close. He is really flying forward to get things and move. We have been working on patterning crawling across the room with him and praising him when he does it.

We are also building up time in his gait trainer (walker) too. The gait trainer is pretty big. It makes Jackson look small...and he's not. It is a little hard for him to maneuver around the house through doorways. He is not that mobile on his own in it yet. It's hard for us to handle steering him, so I can only imagine him trying to get through certain areas. He is actually taking pretty good steps on his own holding onto our hands...getting stronger!

Jackson is still wearing his glasses for therapy...mainly occupational, vision and speech. I don't think I mentioned our new vision therapist. She is wonderful and comes once a week to our house through, Spring Branch ISD. Jackson loves her too. She brings all sorts of neat visual things for him to do. She actually thinks he can see fine, and wants to work on building his concentration and attention span. The glasses do seem to help with that.

Now, we just need to work on his sleep patterns a bit. He likes to wake up at 2 am and play, usually stays up for an hour. He has been doing this for a couple of weeks. I am trying to not let him take too long of naps during the day to see if it helps.

In February we will be have another EEG reading of his brain here in Houston with our Dr. We have not had one since Detroit. The doctors wanted an EEG, 4 months after surgery. We pray that all is normal in his readings! Maybe we can start to wean off one of the three meds. I am not complaining, we could not ask for better results post surgery, but it would be great to at least get off one of the meds as planned. Then in April/May, we will be going back to Detroit for a follow up visit and another MRI. It will probably be here before we know it!

Anyway, I will post some more pictures of Jackson this week! Thanks for checking in on Jackson! We appreciate everyone's continued support and concern for him.

Jack's new specs...

Here are a few pictures of our lil' Harry Potter sporting his new glasses for therapy. Surprisingly, he doesn't seem to mind them at all. He only tried to take them off a couple of times today. He is just 20 months, but looks like a 5 year old in them!!...and so studious I might add!

All "geared" up for the New Year!

2008 has come and gone...and we are so ready for 2009! Today, January 3rd, is 90 DAYS SEIZURE FREE for Jack! Can you believe it?!? 3 whole months! Jack has come so far in these 3 months that he has been seizure free. The infantile spasms took so much from him last year. Now that the seizures are gone...he has improved so much. He is really excelling in his physical and occupational therapy. We just know that he will continue to thrive! If you look at the pictures of him in the lawn with the ball, that is the right side where he had his resection. His incision has healed incredibly in this short amount of time...you can hardly see it anymore!

We just received his "electric green" gait trainer...which is a walker. It will help him to walk and provides the necessary support during gait training. I have been working diligently to get this walker ordered since July. Well, the place that we purchased the walker from...didn't actually submit everything correctly to our insurance until December 7th!!!! In order for it to go on this year's policy, we had to have it in our hands delivered from the manufacturer by the 31st. It was an experience..but it was ready on the last day of the year!!!! All worked out! You can tell by the pictures...he hasn't decided yet if he likes it too much, but he is determined. It is really only day 2 in the walker. Sonya his therapist will be back next week and she can show us how to properly use it with him. There are all sorts of attachments and adjustments. It will be great for him to get around until he is walking on his own.

We also ordered Jackson's glasses finally and we should have them on Monday. He looks like a little Harry Potter in them. They are very round rims! He will wear them in therapy and when doing things upclose like reading, etc.

2008 will be a year we will never forget...both bad and good. It was a tough year! If I had known from the beginning what all we would have to face, I just don't know if I would have been able to handle it. However, I have learned that it is not for us to know or to control, but to believe and trust in God that He will bring you through whatever faces you. He did...and this past year has made us all so much stronger in many ways! My sister, Maggie, once gave me a card years ago and the quote on it said, "Courage is fear that has said it's prayers." This quote has stayed meaningful to me. It is incredible to look at where we are today...compared to a year ago...and what all happened between then and now. We thank God for all these blessings!

This past year we have also gained wonderful friends going through similar situations with their children and Infantile Spasms. Your kindness and support helped us immensely and still does. Thank you to everyone who prayed for Jackson and kept up with him....it made the difference and kept us lifted up through the difficult times. We have been so touched! We especially thank our loving family...who have given us support and encouragement..and were there by our side.

We look forward to the all the possibilites for Jackson! We hope everyone has a happy and blessed New Year ahead!