one step forward, two steps back

Thanks for the theme song Paula Abdul!

So we had an amazing neuro appt on Friday, everything went better than we could have hoped. The results of our 24 hour VEEG were in and it appears that Oliver's odd behaviors were not seizures, and not only that but there weren't any minor subtle seizures picked up either. Which is great, even though he usually only has definite clusters several days to a week apart so we didn't catch one but it's good that there isn't something else going on that we've been missing. Not only that, but our neuro told us that his EEG is actually starting to look improved. There are 'state changes' which means that the patterns differ during asleep and awake times. Previously it was just 100% consistent chaos whether asleep or awake. So , he still has abnormal patterns but the suspicion is that they are trending towards improvement. Not a clean EEG but it's better than any previous ones so we hope that will continue to just get better and better.

Since Oliver had only had 2 small subtle seizures about a week apart prior to our appt, and his EEG looked better, and his development was completely stalled (perhaps due to meds), the neuro suggested weaning 1st one medication, and then maybe the other to try and figure out which med was helping. It seems that one (or maybe both) was doing something but we weren't sure which. The clonazepam is so similar to valium that it just has him very chill all the time, and perhaps that was limiting his development. So the thought was to wean that one first. We were going to drop a half tab each week until completely off the medication, calling neurology in the meantime if any seizure activity increased. If so, we'd adjust the taper of the meds and wean more slowly. If we successfully got him off of the clonazepam, we'd next tackle the Vigabatrin and try to very slowly wean him down so that he was off around his 1st birthday. Amazing. We left feeling so hopeful and optimistic. Our neuro congratulated us on being proactive by having all of our appts booked and going to mayo, etc etc. Smiles all around.

Several hours later, I got a call from daycare and could hear Oliver screaming in the background. He was having a seizure. Unbelievable. All weaning plans are now halted for a week to see what's going on. He sounded stuffy on Friday so we're hoping he is just sick and his defenses against seizures are lowered. He had another seizure Sunday afternoon as well. They haven't been this close together in a long long time. We're keeping him on motrin in case it's teething or an ear infection and I've been suctioning his stuffy little nose. Trying to keep him hydrated and happy. I am going to call his pediatrician today and see if we can pop over this afternoon to just peek in his ears and see if he has an infection brewing. Now we just have to hope that he gets over being sick, the seizures decrease again and the wean process can begin.

But this leaves me with so many questions. If he is going to still have seizures every time he's sick, shouldn't we keep him on medications to fight them? Why would a neuro recommend a wean of both meds if the EEG isn't normal and if the kid is STILL having seizures. granted they are few and far between but he's still having them. maybe he is just trying to figure out which of the 2 meds is helping the most and then he'll stay or go back on that one? Maybe he saw how horribly behind Oliver is in his development and wants to see where he would be without so much medication? I didn't question any of this at the time because he hadn't had these last two seizures yet and I agreed it would be nice to see if he had any chance of developing off the clonazepam.We'll never fully know if he is so behind based on the CDG, or the infantile spasms, or the meds. Or a combo of the 3. It's just so incredibly frustrating that every time we meet with our neuro, we start to let ourselves hope for a better outcome and then have all of that dashed when the seizures return. prior to Friday I had a very negative outlook on all of this, and then I allowed myself to be cheered up just a bit. But I think that's harder. It's hard to be positive all the time and just keep getting kicked down but if we don't stay positive than Oliver will think we're letting him down. It's just really hard day in and day out to pretend that things will be ok all the time. Even my super positive husband finally admitted last night that we might have to start thinking about things like wheelchairs and vans in the not so distant future.

Sick babies in the heat are not much fun for anyone. So Oliver spent most of the weekend inside with Jason while I embarked on fun adventures with Tobin. I know if a regular 8 month old had a cold and slight fever we probably would have done the same, but it feels more difficult because we have SO many of these weekends where we divide and conquer. Awhile back, before Oliver was ever diagnosed, I was watching an Oprah episode about a family who has a schizophrenic 7 year old. They live in such fear of her hurting her little brother that they live in separate houses. The parents take turns staying with the girl and her little brother. So the parents are never together. One is always with one child while the other is with the other child. I thought to myself, that must be so difficult on a marriage, but what choice do they have? I never would have thought that would be us one day. of course, we're not in separate houses but as I was out and about with Tobin all weekend I kept thinking of Jason and Oliver at home and wishing they were out with us. Tobin didn't seem to mind since he's a mama's boy. He had a blast at his first movie (Toy Story 3) and we went to the pool and swam for hours. He loves "swimming". He can't really swim yet but he likes hanging out in the water. Yesterday he learned to hold his breath and go under and then pull himself back up on the wall. I think that's a big step toward getting to be more comfortable in the water. He slept great last night as a result of no nap and lots of swimming!

Jason and I seem to have both caught Oliver's cold, which means it's likely viral and not bacterial so that's a good thing. But we both have sore throats and I am super stuffy with lots of sinus pain. No wonder Oliver is so whiny. Hopefully this will pass soon and the seizures will decrease again and we can move forward with our med wean plan. fingers and toes crossed!