Wednesday, December 19, 2007

My apologies.....

For many many things. I have severely neglected our poor poor blog and have received many comments regarding the lack of update. So I am sorry, truly sorry to have kept everyone in the dark for so long.

Several weeks ago we had a follow up appointment with Dr. Lipkin (Developmental Pediatrician) at the Kennedy Krieger Institute. And while he was pleasant enough, he didn't have many pleasant things to say. In a nutshell (take three hours and compress it into a few sentences): Jack has made some progress with his gross motor skills, he has made little progress with his fine motor skills, and absolutely no progress with his language skills. We originally saw Dr. Lipkin in July, at which point he gauged Jack's language skills at nine months. Apparently that is exactly where he remains today. It was a terrible disappointment. I can't even begin to tell you how I didn't want to believe what he was saying, but I knew he was right. The paperwork which documented the appointment had a diagnosis of Speech Apraxia written on it. We discussed it prior to leaving so my brain could start to process what the next steps would need to be, Dr. Lipkin strongly suggested increasing his speech therapy to twice a week. Whew. That's a lot for a little man with so much going on already.

Unfortunately, that is not where this entry ends. Shortly after the appointment I contacted Infants and Toddlers to inform them of the latest diagnosis, and to request a meeting so we could discuss a new strategy for progressing Jackson's speech. A few weeks later (hey we are talking State schedules here...) we met. The Service Coordinator (who is also the Occupational Therapist), Cognitive Therapist, Jack's regular Speech Therapist and a new Speech Therapist were all there to discuss new strategies, or so I thought. After about twenty minutes of talking about the visit to Kennedy Krieger, the new Speech Therapist piped in. She proceeded to tell me that Dr. Lipkin had no business diagnosing Jack with Speech Apraxia, and that only a trained Speech and Language Pathologist could make that diagnosis. She THEN went on to actually READ to me. Yes folks, lets gather 'round for a nice story. She read passages VERBATIM from the Asha.org website. She didn't bother to get Jack's history, didn't bother to ask the other therapists their opinion, and certainly didn't give me a chance to express my concerns. Unbelievable. Your (or at least my) tax dollars at work. Brilliant. She then went on to say that the Neuro-Linguist we consult with is just more or less a glorified Speech and Language Pathologist, who is just pushing her own services. There's one word that came to mind at the time, which I will spare you from publishing on this site, but you get the idea.

Mortified. Livid. Enraged. I, a somewhat well educated parent who takes it upon herself to seek out additional help and resources for my child am being brow beaten by a State employee. I don't think so. Fortunately for her, my proper southern upbringing would not allow me to tell her exactly what I was thinking. No I complained the proper way - several days later to her supervisor.

In the mean while, it seems Jack's Nissen has loosened. Last week he picked up a lovely bug of diarrhea and vomiting, the latter of which he shouldn't be able to do at all. Well, it was quite the surprise to wake up at 3am to the sound of Jack aspirating his own vomit. (Sorry to be so graphic but there really isn't any other way to put it.) And now he is sick. Respiratory infection. Whether or not it is a result of the GI bug remains to be seen, however this does increase the urgency for scheduling the next swallow study. We, all the therapist and most of the docs are certain he is still aspirating.

On a much more pleasant note, he is quite the little man. His personality seems to have made an appearance overnight and he is taking after his father in being the little instigator. Oh well. As long as he is not pulling his sister's hair, I am happy.