6/12/13

We had an appointment today – our third. But Luke had a bit of a fever and a cold, and it was pouring outside. So Paul, who had Luke the night before, called me to get IBR's number to cancel. I gave him Dr Porto's phone number as well as the general number and told him that I would email Dr Gonzalez to cancel. Then I went to physical therapy because I had severely injured my back.

When I got back, there were 2 messages from Dr Gonzalez on my answering machine – are you coming today? – and a confusing email.

Paul, evidently, never called and she didn't get my email until she arrived at the Institute. Her email described a specific cognitive test that only 1 person could administer, Dr Porto. The only problem was that Dr Porto had quit his job 5 weeks previously and no one had been trained to administer this test!!! She was actually calling to cancel our appointment. Are you kidding? 5 weeks to get someone to get qualified and no one bothered to inform us????

Well, another appointment was made, the test given, blood, urine taken, ECG given and we all survived.

And now, Dr Gonzalez is leaving the IBR and we don't know who's taking over. Fragile X children need routine. They need to know what comes next. This revolving door of researchers helps no one.

On Mother's Day, Luke called me 'mommy' for the first time. Not 'mamamamamy', or simply the last syllable, 'me', but mommy. He wanted his DVD, so the sentence was, "Mommy, D?". That's gotta be the drug.

He's calmer, more communicative, and listens to instructions better. He also is expressing more spontaneous speech. I'll admit that most of it takes place in front of Elmo or Barney, but it is quantitatively more speech! I'll take it.

He also is pronouncing words better – beginning and final sounds. He used to just utter the final sound, so 'cat' was 't'. Now it's 'cat'.

It must be the drug.

4th visit coming up. Blood draw, urine, and ECG – the works. I am sidelined with a herniated disc, so Paul will bring him.