If I only paid attention in Molecular Biology....

Oh wait, I didn't take molecular biology. Well that would explain why I am at a loss looking at Jackson's lab results. Earlier this week it occurred to me that it might be helpful to have a copy of his testing. Helpful if I was a molecular biologist.

Don't get me wrong, I can interpret the report fine, it is interpreting the interpretation I am having trouble with. Our dear Pediatrician warned me "don't freak out" and "don't over analyze them" when she gave them to me. She knew well enough that as soon as I got the chance I'd be all over the internet trying to put the pieces together. (I can't help it.)

And that's precisely what I did. After scouring the internet for information regarding any results reported at abnormal levels, I am even more confused than I was before. But what was I supposed to do? Just wait? No way. It is not in my nature to just sit back and wait for someone else to solve my problem. Not happening. Especially when the doctors all told me all results were normal. That's the part that really makes me flip out. No one, not one of the doctors, mentioned anything about any results being reported as abnormal. Now, I can understand not thinking it necessary to go over every little result reported, but it might be wise to disclose those results which are questionable. I don't think any of the doctors were negligent in this case, however why not disclose abnormal results? It doesn't mean there is a diagnosis, it just means there is something else to watch for. Maybe repeat the testing in 3 - 6 months. I don't know. But I don't know because no one has informed me. And that's the part that makes me want to scream.

On another battlefront, our therapists from the Infants and Toddlers program have disagreed with Dr. Lipkin's recommendation for weekly physical and speech therapy. Not to discount any one's input, but now what? During my conversation with our Pediatrician Dr. M, I spoke of this and she was adamant that he receives the weekly therapy as suggested. Physical challenges and learning disabilities abound, the severity of both yet to be determined. Both Dr. M and Dr. Lipkin have made it clear that Jackson will struggle with these difficulties throughout his life. A revelation that has suddenly become difficult for me to bear.

A long visit with Kennedy Krieger

So it seems that the long wait we encountered for Jackson's appointment at Kennedy Krieger was just a preview of the long visit we were to have. Friday, July 6th we saw Dr. Lipkin, a Developmental Pediatrician at the Kennedy Krieger Institute. Five long hours of questions and answers and loads of developmental testing ensued. After quietly deliberating with several colleagues, the diagnosis was Hypotonia and a Speech and Language Impairment. Yes, five hours later and two somewhat insignificant conclusions.

The difference is now there are official diagnosis, albeit vague and still inconclusive. There is still a great deal of questions as to whether or not there is a bigger issues, most suspect there is, and what exactly that bigger issue is exactly. (The thought is a Neuro-Musclar disorder?) In the meanwhile, Dr. Lipkin has called for more intensive Physical Therapy as well as Speech and Language Therapy. Once a week each. Preferably at KKI. Hmmm. That makes for a few more trips downtown.

Sorry to be so brief, but we are on vacation in Colorado and that's really what I want do. Be on vacation. Lots to be dealt with when we return, but until then, it can wait.

To read more about Hypotonia visit: http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm