Thursday, October 21, 2010

Updates on Baby

I forgot to mention that we had baby's evaluation with occupational therapy (i.e. fine motor skill therapy) on Friday. It was done by an excellent therapist at our house. Baby (who is now almost 14 mos.) measured, by ability/mobility/etc. to be in the 4-5 mos. category, which is where he has been rated by his other therapy and medical evaluations.

The recommendation was made that we begin OT with baby, but after discussing the issue with our DDD coordinator, we have decided to hold off on that, simply because we just can't take too much more! We're already slated for physical therapy and DSI therapy (I can never remember what that stands for), not to mention oodles of more specialist appointments - so we've agreed that we'll reevaluate at the beginning of the year. I'm so thankful - I'm pretty much at my limit for appointments and such.

On Monday we see our pediatrician for baby's check-up - thank goodness! I have half a million questions to ask him, the most important of which are his opinion on the advisability of the GI test and/or the brain MRI. We have a really good working relationship with our pediatrician - he is super-non-interventionist, and prefers to let nature take its course, so if he thinks that these tests are necessary, I will feel completely reassured that they are necessary and that we should go ahead with them. It's great to have a trust relationship with care providers! It's kind of like the relationship we have with our midwife. If she said "You need a c-section!", I would say "Hand me a knife!" - because we have such a strong bond of trust and friendship, and I have seen her be so honest and respectful of my decisions, that when she gives advice in an emergency, I don't need to question it. It's pretty much the same with our pediatrician! So I'm hoping he'll be brimming over with advice on Monday, because we can sure use it!

Right now, besides therapy, baby is scheduled in November for an ophthalmological (eye) evaluation, a physical therapy evaluation, and a GI consult (preparatory to the reflux test, if we go ahead with that), and we'll also be doing the micro-array blood test as soon as paperwork for that arrives. It's going to be a busy month - hopefully a productive one!

I have to admit to feeling somewhat frustrated over this whole thing.... Over the past two months, we have met with something like six or seven (or eight or nine) caregivers, had countless evaluations/exams, done two blood draws, an EKG and an ultrasound, spent several hundred dollars in co-pays, and run all over the Phoenix valley.... and it seems that no one really knows what is going on, nor are we much closer to a diagnosis. Or rather, it's not quite that bad. We have gained a lot of fragmented information, seen a lot of people and forged a lot of good working relationships, checked a lot of specialists off of our to-do list, and ruled out a lot of possibilities - it's just that we are lacking any sort of final diagnosis or coherent direction with regards to treatment.

One thing that bothers me about the medical scene is that it is so fragmented. Each doctor gives you his/her opinion, but each doctor is working in a vacuum, so it's impossible to draw all the cords together. What we really need is all of those doctors together with us in one room for a few hours so that they could bounce ideas off of each other and argue up a storm while they discussed ideas. I think that would be much more helpful than trying to network all of these individual doctors and practices together long-distance via faxed reports. I also see why working the medical system takes so long - with delays and long time spans between contact and actual appointments, it could easily be another 4-6 months before we have anything concrete. Yikes!

Okay, off to do something more concrete! I'll update after Monday's appointment.

1 comment:

  1. Argh! How frustrating to still not have answers!!! My guess is that the unknown is worse than any answer could be. I wish we could lock them all in a room together and tell them that they can't come out until they've made a decision!

    Continuing to pray with you.

    The blog my friend Jess linked me to is


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