Parker's Promise

Like I said before, things have been blissfully uneventful the last couple of weeks. I have my baby back.  He is now off of almost all seizure meds.  He is on super low doses of Keppra and Onfi.  He is so "still" now, but in very good ways.  He is in control of his body, unlike when he was on such high doses of everything.  He was constantly moving and vocalizing, could not concentrate and was not in control of his body.  Now he is.

Look at that trunk control!!! He is buckled, but not very tightly. Even just a few weeks ago he could not sit in a grocery cart without being propped.

Almost every therapy the last two weeks have been "the best so far."  Since he is so much calmer, he is able to sit better, walk better and concentrate better.  He has made so many new sounds this week and even said some new words.  This morning I took Parker into the bathroom to get ready. He saw his dad and said "Dad." He said it about 3 times without me even prompting him.  He is making mmmmm sounds for more (bringing his lips together is huge since most sounds he makes are of the "ahhhhh" variety with his mouth open.  He has made ba ba sounds this week, da da sounds, he said Kitty again this week (ditty).  He loves to sing and if he hears music at home or at church he sings along with the best of them. "Ahhhhhhhhh Ahh Ahh!" It is really cute, especially at church just as the song ends and he is singing away. But he stops when he realizes the music stopped. Today I was singing Ooooo Ooooo and he did it!!!  He specifically stopped and listened, looked at my lips, closed his mouth more and said oooooooo. Earlier this week he was playing with a cool button device that allows you to record your own songs ro words.  You record it in parts or sections, then they have to press the button to hear the rest of the song.  "A B C S" (pause- hit the button) "E F G"... I had recorded that song and I heard him playing it and singing a long "Ah Ah Ah Ah" instead of one long "Ahhhhhhhh."  These may seem like little things, but for our son they are HUGE!!! The area of his brain that controls language was annihilated and we had several doctors tell us he may never talk.  His little brain is ACTIVELY remapping right now to other areas to take over speech and language. Thank goodness for neuroplasticity. 

He also listens so well and understands what we are saying.  He will pause and really concentrate, then try to do what we asked- whether to repeat something, or put a ball in, or stand up or sit down.

This week in speech we have been teaching him the sign for "Go" where he lifts his arm up and drops it to sign "Go!" We do this will bubbles, with cars or other games.  His favorite game is where he stands up in front of me and we say "1 2 3...." and he signs Go and he falls back into my lap laughing.  Over and over.  He LOVES it.  He will even start to giggle just before to anticipate it.  Or he will anticipate tickles... or other things.

We received our gate trainer at home this week which is super exciting.  That is his walker.  I will take a picture of him in it as soon as I can.

As we were dashing off to not be late to one of Parker's therapy this week, Devin taught me a great lesson.  "Mom! You forgot to smell the roses!!!" So we stopped and did.  There is so much to be grateful for in our lives. I had not realized just how hard and stressful these last 7 weeks have been (since his surgery to put the bone back in) until now that we are out of it. But because of the incredible stress and fear then, I can now feel the blessed peace and joy.  You never are so grateful for feeling healthy as right after an awful sickness.  And man it feels good to have things going so well right now.  I am sooo soooo grateful.