Bubba is Back!

It is hard for anyone who has most recently met my son to know just how honestly sweet and easy going he is. Since birth Ayden has been a very happy baby as long as he gets breaks from crowds, keeps a schedule, and receives sensory input when he needs it. Think giant 4 yr old who just wants to be rocked and held like a 6 month old! :) That's my Bubba!
 Unfortunately, over the past 4 years (yes, it has been 4 yrs tomorrow since his stroke.) he has had to battle the side effects of seizures, seizure medications, and hydrocephalus. Ayden has had some great moments when he really felt good and was happy;Those are the times when we have watched people fall in love with his wit and charm. When considering this surgery the loss of the Bubba we know was a major factor along with the seizures. We refused to watch our son turn into this agitated, overtired, monster of a boy frustrated at the world around him(understandable so).
Yesterday, we gained one of our biggest compliments from a therapist that has worked with Ayden for years. She said (as he was crying in the background) even though he was fussing it was just typical resistance not anger like we have seen recently. He was simply fussing to see if they would go easy on him, fortunately they didn't, and that is why we love them! :)
Do we know if the surgery was a success? We have a happier kiddo, a more alert kiddo, a chatty kiddo(even to Captn' Crunch on the box during breakfast). Time will tell if he is truly a seizure free kiddo, but for now we have seen very few seizures since the first week post-op. We had a bit of a scare early Sunday morning with a cluster of seizure activity I have only seen once before (in the hospital about 5 days earlier). After 40 minutes we decided to take him to the ER. A CT and chest x-ray were done, Ativan was given and no explanation was really found for the cluster. So what happened? We think the HSV activated while we were at Cleveland and our infectious disease doctor agreed that is why he was sent home with his PICC line and Acyclovir last week. In the past, even with treatment, the HSV has caused Ayden to have atypical seizures so the theory is based on what we know from before. Tomorrow, we meet with our pediatrician who has taken over Ayden's case since our discharge and he will decide whether we continue for the full 21 day dose or discontinue it.  It is scary to think that the virus is STILL capable of doing harm to Ayden, but it is somewhat of a relief to think the seizure activity post-op could be contributed to the HSV versus the idea of the surgery being a failure. That is the silver lining to this cloud.

Now we wait and see, how far will Ayden go with this new crisp, clear mind. We continue to pray for seizure freedom,  an end to this possible HSV flare up, and for Bubba to to find the strength to keep pushing past the barriers that frustrate him so much. Yes, potty training included - we'll need lots of prayers for that! LOL! :) I apologize for such a delay in posts, but since we have been home I have found free time to be a thing of the past. Thank you to all of you have continued to share your thoughts and prayers on Facebook as we have hit the ups and downs. Hopefully, we are now out of the woods and ready to move forward.