Sunday, January 16, 2011

Appointment Update

Just wanted to post a quick update about our appointment yesterday.  We went in to meet with the doctors.  We first met with a doctor and a student (medical student).  I warned them right away that Eliana was fearful of doctors and might not be all that cooperative.  We'd already been in to check her vitals and managed to get height, weight (mine first and then holding her), and temperature - and that was it!  They were great with her!  The main doctor was engaging and playful with her and really did so well with her.

He asked me a lot of questions trying to get a history and an understanding of why we were there.  He also at times talking with the student - teaching her.  (He was really great!)

At one point, we were talking about Eliana's ped (who recommended the test) and I shared that she had a wonderful ped.  Shortly after that, the doctor turned to the student and said, "Do you know who the best pediatrician is for any child?  The child's mother!"  He then said the second best pediatrician was the child themselves when they reached a certain age.  I'm not sure if I should share this part, but he also said that Dad didn't make the list.  He said knowing this meant things were stacked against him and that he needed to work even harder.

Back to the mom comment.  Did you hear that?  Those of you with kids who have walked the medical route will probably cheer!  He recognizes the value and worth of a Mom's perspective.  He realizes that she knows her child best and knows when something is wrong.  He trusts the input and experience of a child's parent.  And he is teaching this to students who are learning how to be a doctor.  This was probably the most powerful and affirming statement I've heard from a doctor in a long time.  I think this doctor will go far!

We then met with the doctor that will be doing the procedure.  He told me that Eliana's numbers were "low".  I don't remember which piece of the test this measured, but perhaps the antibodies.  He thought this gave hope that perhaps she does not have celiac.  (Don't get too excited yet - there is more.)  However, another piece of the test came back with ranges that made it look more likely that she does have celiac.  So, I'm not sure where we are on the scale - but more of a hope than I had going on.

To be honest, I'm really praying that she does not have celiac's disease.  I really don't want her to have to deal with this.  In my heart though, I'm preparing for that to be the case.  I'm not sure that this will help me to be prepared for a hard answer or not. 

Eliana will go back in 2 weeks for her pre-op appointment.  We will be meeting with the anesthesiologist.  My understanding is that since she has Ds, being sedated poses greater risks for her.  I'm hoping that since she has done fine in the past with sedation, that she will again this time.  She will have the procedure done on 31 January.

I mentioned to one doctor (but not the other), the Eliana needs to have AAI x-rays done.  I was wondering if they could be done while she was sedated.  Does anyone know if this is an option?  It would really make things easier for both of us!

That's it.  It was a good visit.  Eliana did a great job.  I'm comfortable with where we are headed and the care we are receiving.  I'll post again as we get closer, but we obviously would love your prayers. 



  1. Glad you appointment went well. It's refreshing to have someone in the medical field acknowledge that mothers do know their children best. I'll pray that Eliana's procedure goes well and that you get some answers.

  2. Wow Leslie, what wonderful words from that doctor!

    My friend, I will keep praying for your precious family.

  3. Leslie I am thrilled you have great doctors. I have been blessed too with wonderful ones too - who also listen to me & have told me to go with what feels right.

    Thinking of you.

    Love Leanne

  4. What a great doctor, I love to hear that he thinks so highly of us mothers! Praying that it will go smoothly for her and that they can get the x-ray done at the same time, I love to combine sedation too.

  5. what is an AAI xray? much luck to you and Eliana on the 31st- are you having the test done at duke?
    Terri & Tyler

  6. Thanks friends! I'm excited to have good doctors!

    Terri - Its the atlantoaxial instability. All kids with T21 should be screened for it. You could ask your ped or at the DS clinic if you go there. Here is a link for more information on it.

    Unfortunately, Eliana's ped believes she needs to be alert for the test. UGH! I'm not sure that will happen!

    Yes, we are going to Duke for the testing. All of E's care is still there.

    Hugs to you friend!


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