Friday, June 10, 2011

How's Deacon?

We get this question pretty often from our wonderful friends and family, and still haven't figured out how to answer it.

I've been waiting to give an update on here of Deacon's progress. Waiting on what, I'm not sure... Maybe for a professional to tell us he is cured? Or for him to hit every milestone that his peers have?

There is no algorithm for predicting his future, only time will tell. So more wait and see? You got it.

But, I can share Deacon's accomplishments and things we are still working on, along with feedback from his therapists (doctor appointments are later in the month). The gals, aka his therapists, say that as long as he continues to show improvement, they are optimistic, it is when his development plateaus that they get concerned.

Fine Motor:

  • Deacon is holding his bottle while in an upright position much more often! We have found that he can hold on to the smaller bottles much easier, so while in his high chair or car seat he is rockin' it by himself! Therapists introduced a sippie cup with straw this week to start working on.

  • Mealtime has been more fun too, now that he isn't such a picky eater! After getting over a 3 week stomach bug (which may be an allergy to bananas, but I am scared to test) Deacon has started to really get into trying new food. His pincer grasp (thumb and pointer finger) has improved, but he is more successful with larger snacks like fish sticks, cookies, corn on the cob, or french toast sticks, all of which he loves!

  • I don't know if this should go under fine motor or social, but Deacon is starting to PLAY with toys!! His therapists are so impressed that he doesn't just put toys in his mouth now, he shakes rattles, pushes buttons for lights and music, and as you have seen from a previous post, pulls off his diaper!


  • This is what gets me so excited! Deacon's demeanor has changed so much since the seizures stopped! He laughs all the time now, especially when being tickled, bouncing, playing in the bath tub, or just watching other kids.

  • He also makes lots of eye contact and smiles so much! His face will light up when he recognizes someone, and he has gotten very interested in observing people around him. He still doesn't have stranger or separation anxiety, but he does seem to notice when he is left alone, especially at bedtime.

  • Deacon gets enjoyment out of so many more activities! He loves music, making his favorite show The Fresh Beat Band, which he watches while clapping and dancing. He also found a love for sprinklers just in time for summer!

Gross Motor:

  • Deacon has never had a problem in this area, but he continues to excel! He is quite the adventurer and has moved on to climbing on any and everything. He loves the trampoline he received for his birthday and spends most of his time climbing on and off, hanging from the side, flipping it over, and every once in a while, actually using it for its intended purpose: to bounce. Our little explorer has also discovered how to climb in and out of the bathtub and onto the couch.

  • At the suggestion of his vision therapist, last week we signed Deacon up for Little Gym, where he is learning to climb stairs, roll, walk on balance beams, run, throw and jump! He LOVED his first class.

  • Lots of sounds and words are coming back now, and Deacon practices making new noises every day! He says "mama" constantly, but will also say "dada" and "bubba" and is more verbal around us, instead of just when he is alone.

  • His favorite place to practice talking is in our bathrooms! You can hear him on the other side of the house yelling from the bathroom, and the only reason we can think is that it kind of echos in the open space.


  • Okay, well I said Deacon's social abilities are the most exciting, but I'm thinking medical trumps it! Deacon's days of seizures stopped on April 4th, since then Brian and I haven't seen a single one, while his daycare reported seeing around 5 or so total during the past two months and that was during the time that he had the stomach junk and wasn't able to take/keep down his medicine! We are elated!! No more bruises on his head or need for helmet consideration!!

  • Vision. In the midst of all the diagnosis and mis-diagnosis we received, I realized that I never really spelled it out for y'all on the blog: with his CVI, Deacon is diagnosed LEGALLY BLIND. Looking back, it reminds me what state of mind we were in. Our child being diagnosed BLIND wasn't even a glitch on the radar with all the other battles we were dealing with. I remember Brian and I thinking early on that with all of horrific prognosis given for other diagnosis, him being blind was one of the best-case-scenario explanations. His doctor did say his vision would improve significantly when the seizures stopped, and we have seen that, but we are interested to hear how much improvement there has been during his appointment on the 24th.
Have I mentioned how grateful we are?? We have not taken a single accomplishment for granted and praise God every day for the miracles He has given our family. I am thankful to have the summer off to help Deacon meet his potential, whatever that may be. Our main goals are responding to directives, like coming to us when called, more fine motor skills to help him eat independently and drink from a cup, and initiating contact with others.

Whew, I guess I won't wait so long next time to update; I had lots to say and still have much more to share!

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