Friday, March 14, 2008

Emma's first ped appt

We had Emma's first ped appointment today and although I like the new doctor, I still miss Dr. Acevedo!! Dr. Vargus is a very nice woman who seems to be very soft spoken but also very thorough. I kindof feel like I intimidated her since I knew everything I wanted her to check and had a few requests on top of that :) Not to mention that my mom was with me and I had Micah there too. 4 against 1. We won :)

Kidding, of course. She is very gentle, kind, and seems to know her stuff so I am pleased to be going back to her next week with Micah.

As for the actual appointment, Emma weighed in at 18lbs, 10.25oz. No, she isn't losing weight. On Monday her cardiologist said she was 18lbs, 2oz. Our bathroom scale is not nearly as precise as the doc's scales are. Not only that, one scale to another may weigh several ounces differently. Anyway, she is 32.5" long which is the same as they measured Monday so I'm fairly certain that's accurate.

No real 'news' about her. I actually told the doctor more about Emma than she did me. I guess that's just how it is for the first trip in though.

We received referrals for a slew of specialists: opthalmologist, orthopedist, developmental pediatrician, ENT, and of course cardiology to continue as we've already set up.

We also got orders for blood tests for her. We considered waiting until pre-op in a few weeks and doing it all at once but when I brought up testing to see if her immunizations are up to date she said she wants to check on the tetanus before surgery is too close. So we'll go ahead and do the whole slew now. Thyroid, CBC, immunization checks, and maybe something else. I don't remember :). Bria's due for her thyroid screening too so both girls will get to visit the lab next week sometime.

The only thing I forgot to really get an answer about (although I did bring it up, just never got an answer :0) is whether Emma needs AAI screening done before surgery. I guess I'll either call back on Monday and ask them or if it'll wait until Friday I'll be back down there with Micah anyway. For those that are following and aren't familiar with AAI it is basically an instability of the upper vertebrae that is not a common thing in kids w/ Ds, but it is something that all of our kids are screened for. It is a very dangerous thing if left untreated as the instability could cause damage to the spinal cord. The solution is fusing the skull and C1 vertebrae and the C1 and C2 vertebrae together. The reason that I want it checked before surgery is because they fully extend the neck and head for intubation and this could cause damage if there is in fact AAI. Chances are pretty good that the actual doctors will have the same concerns and take care of it. The screening is a simple x-ray followed by an MRI or CT scan if there is anything questionable.

Anyone have any knowledge about whether AAI needs to be checked before surgery? I know most kids are screened at 3 so it's usually not an unknown issue at 5 yrs old. Hmm...


  1. Actually, the skull to C1 fusion only happens with AOI... AAI is just C1 to C2. Emma most definitely will need the c-spine xrays done before surgery. If she does happen to have AAI the intubation during surgery could injure her greatly. That being said, Kennedy's been sedated about 15 times with AOI and AAI and she's fine... thank GOD! But they said it could have been a "catastrophic event" each time she went under. I would definitely push for those x-rays!
    Glad the ped appt went well!

  2. If you don't get her checked before surgery, make sure they assume she does have AAI and treat her that way. I would probably want that anyway since she is so tiny. We had to do that with Carson's last surgery since he has not been checked yet and we didn't have time to get it done.


  3. It is important to know before surgery so that they don't manipulate the neck in ways that might injure it. Gunnar does have it and when he is sedated, they just know that they need to be more careful with the things that are needed. That being said, I guess if you weren't able to get a definite answer about the AAI, they could just treat her as if she had it...but our docs wouldn't even put him under until they looked at X rays..

  4. Yeah what Renee said LOL....The X ray isn't actually that simple cause they have to sit still in these positions to get an accurate reading. I was finally able to get one done good at 7 for Kallie before her leg surgery.

    It sounds like she is doing great! Prayers that everything comes back good with the blood work(for Emma and Brianna)

  5. I would wonder if they can't tell anyway about the AAI due to her size. Don't they sort of arbitrarily say to screen starting at age 3 because they are big enough to see if there is a space between where it shouldn't be? Our docs have said it might be a few more years yet before they can even get a good screen, Wes is 4 inches taller than Emma.

  6. They screened Xander before they'd put him to sleep for his foot reconstruction. But it was the ortho doctor, not the ped, that ordered it since he was the one doing the surgery.

  7. Another thing to keep in the back of your head is that when your kids with DS are 10 or 12 years old you need to re-check for AAI. My daughter was cleared at age 2.5 before her heart surgery, but we just had her x-rays done again before her tonsillectomy (age 10) and she is now borderline AAI. So even if they are clear as young kids, they still might develop it. It is still rare for AAI to develop into AOI though.

  8. Hey Meredith, I would absolutely get the xray before surgery. That way you can put your mind at ease about it. Good luck with all the specialists!