September 22, 2011

Speech Part Deux

After our speech session at innovative, Dan went strait to management at Rady's asking why we weren't getting appropriate care. Long story short, we have a new ST and are combining ST and OT for a one hour session. The plan is to have one hour a week to start, then move to two sessions a week.

We had our first session this week. I wasn't too very impressed. I'm hoping things will take off as we get more familiar with both therapists working together. In the meantime, I have weekly appointments made at innovative for the next few weeks. I'm really looking forward to those appointments and hope to see some positive changes!

September 13, 2011

Speech Apraxia

So a month or so back, our Rady's Speech therapist mentioned Jayden is now old enough to be diagnosed with Apraxia. This didn't really surprise me, I figured it was just a matter of time but this made it more "official".

We have been very discouraged with Jayden's progress in speech and have found his current therapy isn't very effective. We decided to get a second opinion and go outside our insurance to another therapy group I think VERY highly of: Innovative Therapy for Kids in Carlsbad.

During our 1 hour session, we worked with two therapists, one of which is a specialist in augmentative technology. The therapists felt it was clear Jayden has apraxia, as well as sensory integration issues. Watching them work with him was amazing, they were getting him to really show off all his vocalizations (which is rare, usually he shuts down in a new setting). They spun him in a desk chair to give him vestibular stimulation and his articulation was amazing afterwards! They gave him prompts with a sucker looking stick, they massaged his arms and gave joint compressions. All these techniques WORKED! I would love to go to this therapist regularly but our insurance will not cover them :(

So here is the kicker..... we currently have speech once a week for 30 minutes. With a diagnosis of apraxia we should be getting a minimum of 3-5 sessions a week, 45 minutes per session. Why did my Rady's therapist not tell me this when she "diagnosed" him with apraxia???? I specifically asked what this diagnosis meant for his treatment and she shrugged her shoulders and said it didn't change anything! Nothing about the need for increased visits! Nothing about an extended session time!

I hate Rady Children's Hospital therapists!!!

September 2, 2011

Calorie Counting

Ahhhh.....Its been so long! I used to question why people couldn't keep up better on their blogs. Now I know!! Much has happened since my last post and I will not even try to fill in the blanks.

Jayden checked in with the San Deigo PWS clinic a few months ago - we go once a year just to make sure we aren't missing anything. Both the nutritionist and geneticist recommended I lower his calories to 970/day and not let him gain wait over the next year. Jayden is currently at the 75th percentile for weight....I think he is about average for height. If you look at him, however, he doesn't look overweight. My only "weight" concern is his heavy middle. Most of the time he looks a bit bloated, like he just drank a gallon of water.

Well, I counted calories, tried to cut back to 970 and just didn't feel right about it. This isn't the first time I have counted calories. I have calorie counted on and off since he was just over a year old. What I didn't like was feeling that he might need more to eat and I wasn't giving it to him.

So I asked Melanie Silverman to take a look at Jayden's physique before our annual nutrition consultation. She agreed with me that he looked great and we shouldn't limit his calories just yet. I love having a professional to consult with. My gut was telling me not to restrict him just yet and she was able to confirm. I haven't counted calories in a few weeks now. I do, however, weigh him frequently and so far, so good.

Yesterday Jayden ate 2 trader joe sausages (120 calories each) for lunch in addition to some fruit and yogurt. Of course I freaked out about this but for now, I am going with the flow.