ZERO BMI

I have been really worried about Jayen's weight since our last appointment at Dr. Melmed's office when they said he lost more. His appetite has really decreased lately. I've been trying to add as many calories as I can to his current foods with sour cream, butter, and anything I'm not supposed to eat! But I still wanted to make sure that I stayed on top it. This morning we met with Dr. Easter for a weight check and my suspicions were right; Jayen has lost even more weight. I'm so thankful Dr. Easter isn't in arms and is willing to let us work on this a little longer before doing anything drastic. Dr. Easter agreed that since we are seizure free and managing behaviors that we don't want to rock the boat too much. I'm so thankful in his cautious approach. Jayen currently has a BMI of zero. I didn't even know that was possible! My eight pack son has no body fat! We will add a carnation instant breakfast or some kind of drink to add more calories and see where we can get his weight. I will continue to worry and hope this doesn't become a bigger problem!

We also asked Dr. Easter about one of Jayen's pins from brain surgery. It seems so be sticking out much further than usual and almost floats around underneath his skin. Dr. Easter will put in a referral for a neurosurgery consult. Add that to the worry pile too!

Stuck at a crossroads and need to know which way to turn

I've been thinking about Jayen's communication a lot lately. He has come SO FAR!! Today as we were pulling into the driveway he said independently, "I see truck!". He's been asking for help independently, calling for his siblings, demanding his defiance, and so much more. But is it enough?
My day dreaming is taking me to places I don't like to go. I know he is making progress but at some point in time we will have to decide if it is enough. We will have to decide if we need to push another form of communication. He does some sign language and uses his augmentative communication device but we push mostly verbal communication right now. Will that need to change? I understand him. Family that are around consistently understand him. Our family friends understand him. But his peers still struggle. I can't be completely naive and say there aren't times I don't know what he is freaking out over. We have looked for imaginary objects many times over and just explain that we can't find it right now. It doesn't usually pacify him until he finds something that was more interesting than the original thing he was looking for.
As I stare at his face, more importantly into his eyes, I see so much wonder and understanding. But how can he show the world all that those eyes long to see? How can he tell me all the places he wants to explore? How do I know what he has experienced when he's away?

It's been a while, but another one bites the dust.

After a year and a half seizure free our neurologist, Dr. Jarrar, started weaning Jayen's Gabapentin. Well today we are finally able to cross that one off of our list of current medications. WOOOO HOOOOO!!!!

You can call me HULK!

We were talking about how Jayen's language has come such a long way. We asked him what each of the kids names were. Since he was having a hard time saying Dalan, Dalan said he could call him D. Then Matt asked what his name was and he responded "Hulk"! Guess his new name is Hulk. Much easier to say at least.