Monday, February 9, 2009


Today, AJ's SLP and I discussed what our ultimate goal is for AJ in feeding therapy. We placed his current "age" in regards to feeding at around 12 months. Think of a typical 1 year old she said. Is he eating like a typical 1 year old? Ok, I can't think of how a typical 1 year old eats...due to training my brain to not think about what other "normal" children are doing and when they are doing it.

Ultimately, our goal is to have him eating at the level of his chronological age-32 months. We need to get him chewing and biting foods consistently. He needs to have better control of the sippy cup or a regular cup. He needs to move his food from side to side in his mouth and chew to create a bolus to swallow.

I wanted to touch base with his SLP because all of a sudden I had two thoughts:

1)How on earth are we going to fit 7+ sessions of therapy in per week post-implant?

2)Duh. He won't need feeding therapy when will he be discharged?

I found myself so wrapped up in his current schedule, I didn't stop to think that maybe he may not need feeding therapy, or at least not as often, post-implant. I also wanted to know what his therapy schedule would be like if we choose to go to Children's for his speech therapy post-implant. As I suspected...they would like him to have speech 3x week. Often insurance won't cover 3x week, but we'd shoot for as much as possible. In addition, it will also require us to do lots of therapy at home with him. His SLP said that maybe at that point, if AJ was not discharged from feeding therapy yet, we'd cut down to maybe twice a month.

Our other option is to have AJ receive speech therapy from CDHH. Their approach is more parent-centered. He would have therapy once, maybe twice per week, of course with lots of work on our part at home. I keep saying that we need to make this decision, and we really do. SOON.

AJ's transition meeting with Bto3, our school district representative, and his therapy team will be on St. Patty's Day, 3/17. At this meeting we will voice our wants, needs, etc. for AJ and what our ultimate goal is for him at this point. The school district will explain our options, what is available, etc., and his therapy team will give mini reports on his services/gains. Following the transition meeting, evaluations will be done by the school district staff and an IEP will be schduled. That is THE meeting that is most important.

We need to figure out what we will do with the gap between AJ's birthday (6/28) and the beginning of the school year September. As a child who will be newly implanted, skipping therapy for a few months is-NOT GOING TO HAPPEN. We must also figure out what the school district is willing to provide as far as PT and OT. Will he need additional PT and OT outside of school?

On Saturday, our weather was ridiculous. It was 50 some degrees out! My mom came out, we spent some time outside, and then took a AJ's school. I wanted to show her where it was and drive around the area a bit. For those who live in WI, I didn't get lost in Waukesha-YET! The words "This is AJ's school" sounded absolutely foreign coming out of my mouth. We drove back just in time for naptime. When I put AJ in his toddler bed, it dawned on me he had been in it for a week already. A transition I was afraid of and never thought would happen...did...and was now old hat.

Transitions can be positive, even if they are a bit scary.

1 comment:

  1. ok, so i read this whole post, but about 2 paragraphs in i read about "chewing food"..... i then had to stop from smiling so much thinking of AJ sneezing and shooting that chuck of ham onto my forhead...... well it was chewed.... her chews fine to me.:-)

    p.s. love the bob marley playing...
    check out what we use for bedtime:

    love ya guys!


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