Today, October 3rd, marks one year since the day of Jackson's subtotal hemispherectomy which changed his life completely...for the better! I can't believe it's been a year, then again, it feels like 10 years! We have a lot to be grateful for over the past year, and even though we can't say he went a year being seizure free completely, the surgery did rid him of Infantile Spasms and has allowed him to develop. We know it will be a long road ahead, but we continue to be optimistic that Jackson will have a life that does not involve seizures...maybe medication...but no seizures! ;-)
I meant to post Jack's most recent update before today, but again it didn't quite happen so now I am posting everything together. It's a long one! There have been some changes with Jackson that have been good...and some NOT so good! I am really sorry to those who only keep up with Jackson through the blog. We have been extremely busy, but honestly, I have been a little "down" and have not been motivated to post. So I apologize, but now am getting back on track!
We will start with the not so good...so after correcting our last relapse in May and becoming seizure free again June 23rd. We were great for 2 more months...seizure free and enjoying our summer. Then on our trip to Missouri, yes the pictures from the last post where Jackson looks so happy, he got a really bad virus. It started on the way with a rash that looked like the chicken pox (but not) and escalated in Kansas City. We actually first went to an urgent care in St. Louis while visiting my sister, but when we got to my in-laws in KC...that is when Jackson got really sick. The first morning there...Jackson was still sleeping past 8 am, which doesn't happen. I went to wake him up and he would not arouse. I felt him and he was burning up. I took his temperature and it first read 106.1. I was freaking! Then I took it again and it just read "hi" which equals on the box "above 107." We jumped in the car and headed to KC Mercy Children's as fast as we could. I was so scared that he was going to have a "big" seizure from the fever, which he has never had, but you hear stories and his fever has never been that high. The team at the hospital ran a bunch of tests and diagnosed him with a bad viral infection. They first thought he had a bacterial infection and were going to keep us in the hospital, but they ended up giving him a shot of antibiotics to help with the ear infection he had too (1 in each leg) and sent us home. We had to return the next day to make sure all was well. Anyway, after this virus hit, I started to notice when Jackson was waking up, he would lay and look around for awhile before getting up. I thought this was strange, because usually he just pops up and gets going. So I called his Neuro and he told me he wasn't too concerned and it could be a change in Jackson and the way he wakes up, as if he is getting his bearings or something. Well, me being his mom and knowing my son, it just did not sit right with me. I felt like the virus had changed something. So then I video taped Jackson and sent it to Dr. Chugani in Detroit. Within minutes, of course, Dr. Chugani emails me back and says it looks like a "complex partial seizure" and to have our Neuro do a Video EEG to diagnose for sure. He goes on to tell me what meds to try, etc. I was so upset that our doctor in Houston would not take us seriously over this, but as soon as I told him Chugani reviewed Jackson's "episode" and what he thought...he had us in for a 48 hour EEG. Then we confirmed that Jack is in fact having this "complex partial seizure" only when he wakes up. I was devastated, but knew that it was something. We had just had an in house EEG in July and everything was fine!!!! Now another type of seizure. Our neuro told us that these illnesses and high fever can set off seizures. Another setback! Do these kids need to live in bubbles or what? I just didn't realize how easily these things can be triggered. So now we are treating the seizures with Keppra. These seizures are coming from his left side (opposite of surgery) same exact little area. It is difficult too, because Dr. Chugani says try, Dilantin or Trileptel...and my neuro here refuses both based off Jack's EEG. The team here wants to try Keppra. We are still on a very small dose of Keppra, so we don't know if it is doing any good yet. His level when checked last week was 6 and he needs to be 20 - 40 to be therapeutic. Depakote is still doing good for Jack, but that level dropped from 91 to 38 too with the virus. It is really weird. So we have to get Depakote back to a higher level. Now, one good thing, despite this onset of seizures, his overall baseline EEG looks dramatically improved from his recent at home EEG. Even though he was seizure free then, he had more abnormal spiking on that EEG than the one most recent in the hospital. It looks like the Depakote is helping to change his EEGs which is good. The plan is, once we go up on the Keppra, we will come off the phenobarb. Then if the Keppra is not doing it's job, we will try something else. I am really hoping we can get things back under control quickly like the last time.
**Sorry I just reread that paragraph and it's a little detailed so unless you are familiar with seizures and meds it is probably hard to follow!**
Now the GOOD changes...Despite this new setback, Jackson is doing well. He continues to make milestones. He is a climber. He loves to climb everything...on chairs, on the top of the couch, on his high chair and wants to stand on everything. He is so fast that I have to be on top of him at all times! His walking has improved greatly, still not independent but he walks holding onto our hand needing very little support. He still takes a few steps on his own, but nothing lengthy yet. If he could just get his balance a little stronger, his core, he will be there! Our goal is to have him walking by the end of the year and we think he will! He is now in a toddler bed because he learned to climb out of his crib. It has been interesting transitioning him, because if he wakes in the middle of the night he loves to get out and play with his toys. We slept a lot more when he was trapped in his bed! He is also really interactive and loves to explore everything. He is not talking yet, besides mama or dada, but makes really good sounds and mimics and talks back and forth with me in his own language. He loves coughing sounds too...which is strange! It makes him laugh so hard. He will even do a fake sneeze on que too..if you tell him to. He definitely is starting to respond to us, understanding simple things that we tell him to do and he responds by doing it.
One of the biggest changes is Jackson is now going to school! (so much for keeping him in a bubble!)
Jackson has come a LONG way this past year, but we just felt the therapy that he was getting each week was not enough. He really needs more structure and focus, plus the social interaction with other kids. He also has some behavioral issues and I would rather have them corrected early if possible. He can start the PPCD (preschool program for children with disabilites) in our school district when he is 3, but after looking at private schools we felt that this would be great for him now to get the focus and structure early, and our hope is that one day he can transition into a typical classroom. This school is a special needs school called The Arbor and has a very good reputation. We went on a tour and had Jackson evaluated. Before they met him, the team thought he would fit in their youngest class, which are 2 years olds and younger. However, when they met Jackson and saw how big he was and strong...they quickly reevaluated their thoughts. He did meet with 3 different teachers, the director and the behavior analyst. They have Jackson in the toddler class which we think it is a great fit for him. There are 6 kids total in the class. 1 head teacher and 2 assistants, plus volunteers. The ratio is 2 kids to 1 teacher, but a lot of the time the kids get one on one. Most of the kids in the class are all a little more advanced than Jackson in most areas I would say. For instance, they all walk independently and they seem to focus more on what they are doing. Most of the kids will sit in a chair at a table and work or play with something for awhile. However, in comparison, Jackson would not stay long sitting independently in the chair working on his goal, he would be climbing on top of the table. So they have him him more in a secured desk to where he cannot get out. (now this is only for certain times of the day) I think having most the kids a little more advanced will help Jackson learn from them. He really fits in well with class, and you can tell he is so excited to go. He smiles and waves his hands as soon as we hit the steps. His teacher says he loves circle time with singing...loves the playground and he has been doing well on all his goals. They have free play too with all the kids in the classroom. Jackson tends to pull hair and bite (his behavioral issues.) He doesn't mean it to be "mean," it is more sensory or when he is excited or frustrated. He has already been better with that in the 2 weeks he has been there. The schools goes by the Carolina Curriculum which covers five developmental domains: cognition, communication, social adaptation, fine motor, and gross motor. They are constantly assessed and have individual goals in each of these areas daily. They use Applied Behavioral Analysis too for their goals, which I think Jackson will really benefit from. We plan on keeping him at this school at least until he is 3, maybe a year, but no longer. We are hoping it will give him the jump start he needs, then he can go into the PPCD program at school. They also have therapy at this school, so he can get private Occupational, Physical, and Speech therapy. His vision teacher through ECI goes to see him at the school as well. Jackson goes from 9 am - 2:30 pm daily, Monday - Friday. It has been quite the adjustment for me! I miss my little buddy, but I think it is good for both of us. When he comes home, it's nice because I feel like I can just be his mommy...we can just play and be together. Before, I was constantly running from this therapy to that therapy, to this appointment...working on things with him all day...it made me feel more like his therapist than a mom. It is a nice balance.
Below is pictures of Jackson's first art work at school for September!
The teacher traced his hands and he helped "plant" the hands on the tree.
Here he finger painted little dots on the tree. I noticed one day when I picked him up he had brown stuff on his elbow and wrist. I was a little upset because I thought they had given him chocolate ;-) but come to find out it was finger paint.Also, in case you didn't notice in the above picture, Jackson's curly "fro" has been slightly tamed. He had his first haircut right before school! (well besides when they shaved half his head for surgery...but that doesn't count) It was quite the adventure! We went to Kool Cuts for kids. Unfortunately, we chose to go at 6 pm...not the best time and place to go while interfering with Jack's dinner. He sat in a red car and we put Bob the Builder on...but he just cried. He did not like the lady cutting his hair! By the time we left, I didn't either. I guess I have to give her props, because he is not the easiest kid to give a hair cut to, but I think I could have done the same. The front looked great...the back is another story. It will grow. He is a cutie anyway!
before
during
after...but not a good picture to show off the new cut.We so wish today we could say Jackson was completely seizure free. It's frustrating and difficult, and this setback really hit us harder because it happened when he was sick. It just concerns us that what if he is at risk for a relapse every time he is sick? He has been sick before, but never that high of a fever with a rash. I feel really guilty and selfish sometimes, because all I want is his seizure freedom. Then when Jackson is seizure free, I start focusing more on his development and what he is doing and what he is not doing. It is always something. I have always been so grateful for every day that he has had with no seizures, but it is hard not to want the most for your child. I look at Jackson, and can see how far he has come. For those of you who don't know, a year ago, when he had surgery, he could not sit up on his own, he would barely use his hands at all, could not hold his own bottle, could not clap his hands, he rarely laughed, he would not bear weight though his arms...(i could go on, but just to name a few)...he basically had seizures all the time from Infantile Spasms that really effected his development. Now, he is a different child!!!! God has blessed us immensely! Even though he has accomplished a lot, I also see this long road ahead. It is scary thinking about it sometimes, the unknown, but my heart tells me that he is going to be okay. Something inside says he will overcome so much. We are optimistic this is another bump in the road that will be corrected again. Hopefully another medication adjustment. Regardless, October 3rd, will forever be a day that has changed our lives and Jackson's life for the better.
