This morning Rick told me that he woke up to Jacob looking at him from his crib and saying Dada, Dad! He has said he can count on one hand how many times he has heard Jacob say that (and that was before his surgery). He seems to be back to being the old happy Jacob, that I remember from before he had a lot of seizure. The main difference is that this time he is doing things that he may have done inconsistently before, but with meaning and consistency now. I have been told that kids with left hemispherectomy's typically have a big delay in their speech development, and not to be surprised if he did not talk for a very long time. I have a feeling now, that Jacob is going to decide to prove that theory a bit wrong. He may not be speaking in full sentences by the time he is 3, but I have a feeling we will be hearing a lot of words out of him. He has also started today to do a lot of signs that he did before, but inconsistently, and some that I used with him and he had never done. (As I write this, he is sitting on my lap, he has decided not to go too sleep yet, because he fell asleep too early and then woke up, and waving at the computer. I think he must be trying to tell me to turn it off.) He also had another good day of therapy, and we even heard a rumor that they had been talking about an even earlier release. Tomorrow is his team meeting and we will see what they say, we might even get to be let out on a day pass this weekend.
Jacob's Epilepsy Doctor came in today also with the news that they are going to start switching his medicines starting today. We are adding Topomax in right now, but in a week will start weening him off of the Vigabatrin. We also liked that news. We did not really like the way the Vigabatrin made Jacob feel, and he has been on the topomax before and seemed to handle it pretty well. They say that if he stays seizure free, in a year or so, we can think about taking him off all of the meds :) So far, so good. Two weeks down (or has it been 3? lol), Fifty two (or so) to go!
I am afraid the only photo I have to add today is of our friend Waldo on the construction site. We found him this morning on the standing on the dump trucks, again he was a bit easy to find, but I guess you can only hide so many places on a construction site when there is mostly dirt around.
Well, I better make one more attempt to get Jacob to bed (especially since it is almost midnight here), he is making it difficult to type (keeps trying to help me), and who knows if he will decide to sleep in past 7:30 or so.
you cant imagine what wonderful news you keep delivering!! it is as if inside of jacob all along was this little person who was just dying to get out and now that he is unencumbered that little guy is showing himself more and more each day!! we are soo excited for you all - hi to josh - hugs to you all :) love lisa and bill
ReplyDeleteLove that post! I even got a little teary-eyed thinking of him babbling and talking and communicating with you all and having so much to say. Lots of good news out of Seattle this week!
ReplyDeleteThank you for the updates Meghan, everything looks great! You know, Evan had a left anatomical hemi, and prior to surgery he couldn't speak or attempt words, or even have consistent sounds. Even though he was only 10 months, his language development was less than half that, at best. Now, we have "dada" and many more consonants entering the mix! Just to add to your comments : )
ReplyDeleteDavid
Evan's dad, left hemi UCLA Nov 23, 2010
www.evanstauff.com