Thursday, August 19, 2010

Doctors, doctors and more doctors

Before we moved, we tried to squeeze in as many doctor appointments as possible. We figured that would buy us some time with getting doctors here. It also made the last few weeks really, really crazy! At long last, I figured I should share some of the updates we received from our docs...

We saw the orthopedic surgeon, Dr. J. She took an x-ray of Emily's back and hips and said both looked great. I was thankful to hear that since I thought I had noticed a slight curve in Emily's back. Dr. J said she could see that on the x-ray, but didn't think it was cause for concern. She wants us to continue doing what we are doing. Emily has started to outgrow her turtle shell (TLSO), so we got a new prescription for that. We also showed her the AFO's that Emily has been wiggling out of. She said she thought they were a good fit and that the issue was her spasticity. She recommended that we increase her Baclofen to double the current dose. The funny thing is, she does not write the prescription for that, she just makes her recommendations and the neurologist writes the script. Good thing, we had an appointment with neuro the next day! The only other thing that Dr. J mentioned was botox for the tightness in Emily's legs. She didn't push the issue, but said that we should discuss it with our new doc (once we get one). Side note: Emily's AFO's are fitting somewhat better. She isn't able to get them completely off, but is still able to wiggle her foot a bit more than she should.

The appointment with the neurologist went pretty well. To be honest, we have not been super thrilled with this new neurologist. This was only the 2nd appointment with him. He just doesn't offer a lot of info. You have to know the right questions to ask to get any info from him. He did write the script for the Baclofen and gave us a schedule for the increase (it has to be done gradually). There was nothing else about the appointment that seems noteworthy. At this point, we have increased Emily's Baclofen by half. We are actually going slower than the doctor suggested because we wanted to give her time to get used to the increase. One thing we have noticed is that she drools a lot more now (the doc mentioned that would happen). We also wonder if it is affecting her head control (which seems a bit worse now). Time will tell.

Mike also took Emily to the pediatrician (we were trying to get everything squared away for school). That was pretty uneventful. Our appointments with her usually consist of Mike filling her in on all that goes on with Emily. She is a great doctor, but I have always felt like we were a little out of her league. Mike has never had that impression, but I just felt like we must be the only special needs kid she worked with and at times, she wasn't sure what to make of us.

The final appointment was the cardiologist. She had an ECHO and an EEG. She was previously diagnosed with a patent foramen ovale and a patent ductus arteriosus (both are openings in the heart that exist in the womb, but usually close after birth). The doc said that the first one has closed, but the PDA is still there. There is surgery to fix it, but he said the risk of complications is higher with the surgery than without. So we will continue to follow up with a cardio here just to keep an eye on things (she typically went once a year).

The one doctor that we really wanted to see was the eye doctor. We would like to have a clear diagnosis of Emily's vision issues so we can be prepared for school. Unfortunately, he did not have any openings. Hopefully we can get established with a doc here and get the answers that we need.

The good thing about all of these appointments, was that we were able to request Emily's records while we were there. She has some pretty large files! Now we just have to figure out who to see here...that should be fun!


Anonymous said...

Glad for the update but hope things continue to improve with your comfort/choice of physicians. Praying God will guide you to the physician's, therapists, etc, that will bring maximum care for Little Em. It kind of freaks me out to think of her already being old enough to begin prep to attend school-crazy. I'm sure I am joining you in the struggle to "let go", but then how neat too to think of watching her learn and blossom-as she has in the past.


Stephanie's Mommy Brain said...

Whew! That's a lot of doctors! I'm sure I'll be doing the same thing when our house sells - only most of the docs will be for me.

So do you know what services Emily is eligible in the new county? Will she still be going to school this fall? How are you adjusting to not having her in your bedroom? Hearing less grinding?

Sarah said...

I've had a few of those weeks myself. It's good to get it all done at once but it can be so triring. While I was reading this I had a thought. Have you considered seeing a physiatrist? (for Emily). That's who I get most of my medications and such from so one person isn't suggesting but has someone else write the order for it. They're also good at looking at the whole picture and weighting different options, like the classic surgery vs some-other-treatment debate. Just a thought I'd put out there.

Anonymous said...

Looks like mostly good news, eh?

Baclofen does that, yea.

Here's to a neuro doc who makes a better match with y'all!