SSSHHHut the door!

To start this post we want to tell a little story...Ayden has loved a few naughty words for several months now and one of our biggest fears has been his use of those words at school. A few weeks ago he came home saying "Ssshhut the DOOR!" We really felt the shame and worried about how big the problem must have been for the school since they saw the need to teach him that phrase to curb the use of the word. About two days later, I heard Ayden singing "1,2 Buckle my shoe, 3, 4 Shut the door!" - BIG SIGH of relief :)

In regards to developmental progress, Ayden LOVES to sing. It isn't always clear, but we really enjoy his voice. He has been fortunate enough to participate in Music Therapy since January @ IPFW and really enjoys it. Communication is still limited mostly to one sided expressions, but Ayden will occasionally bring up things that give us hope. For example: "Ayden did you see Miss Tasha today? Did you have a good day @ school?" Normally his response is nothing or a song, but the other day he said "Line Leader". I have no idea if he WAS actually line leader that day, but we celebrated anyways! :) We are very glad to have our outside speech therapists working with him each week at Brooke's house on peer interactions and some behavior modification. He absolutely loves learning and showing what he knows we just need to help him keep his behavior in check and use his stubbornness in a positive manner.
Physically, Ayden walks everywhere, and we can't keep him out of ANYTHING! The cabinets are his favorite place to play and nothing is safe on the counter, he loves the using toaster as he says "Cooking!" Lefty has been working more than ever and our therapists at Parkview are working again with some limited restrictive therapy during OT/PT.
Medically, we are cautiously waiting to see what is next. Ayden started seizing in late January;These seizures are different from any seizure activity we have seen since the surgery. We believe they are originating from the right side of the brain because they are left sided myclonic jerks in clusters, just as we saw prior to surgery. We have been in contact with both of our neurologists and are just playing the medicine game. We have increased Ayden's meds over the past few weeks hoping to see the seizures disappear. When we increase his dose we see some wonderful things happen, the seizures subside, he seems more cognitively alert, sleeps better, even seems happier. Then within a week or two we see seizures again and we are maxed out on his current meds at this point. He has had a cluster each day this week since Thursday sometimes more than one. When Ayden was med free for those months, not so long ago, he was happy and active. The medicines not only put him in a fog, but may not work to prevent the seizures from any remaining tissue on the right side. Another surgery could be in the future if we do not find a combination that works. Surgery is not something we want for Ayden so we will continue to wait and see, a follow-up at Cleveland is probably the next step, but we would rather wait until the seizures are more frequent to avoid a long VEEG. His seizures are mild right now so we are just enjoying the progress he makes, the happy times when he acts likes any other 4 year old boy, teasing his sister and giggling about bodily functional... :)
We are so lucky to have Ayden's caretaker, Brooke, who continues to bear with us as we go through ups and downs with his mood/meds/etc. She was the first to see the seizures reappear and has done a great job tracking them for us. The school has also been helping to document anything and everything and that has really helped. Without Grandma and Poppa to run Bub to therapies each Monday he would not be making the gains that he has so we are indebted to so many people. Every member of Ayden's "Village" it is a blessing. Thanks to all who help by praying, listening, and offering support.