Disappointment.

February 14, 2011
I sat here trying to decide what to title this post, and that was the best I could come up with. I usually try to make things well-written here on the blog, but right now I just need to write - and vent.

To catch friends up to date - last Spring, we were thrown into an emotional whirlwind, as we were told that Alexa has Congenital Scoliosis, due to malformed vertebrae - or hemi-vertebrae - or half vertebrae. You can see our last updated medical post from last summer here. Our Orthopedic Surgeon we saw had basically said that we should return in 6 months to see how fast her two curves were progressing.

Fast forward to today, Valentine's Day, 2011.

Alexa could not have been better behaved - she knew she was going to the doctor, and with the help of our phones and her obsession with Mary Poppins, she was fairly entertained and occupied. We arrived at their office and there was some confusion. Since our Doctor had just moved to this new location (now at Cedar Sinai) we were marked as a 'new patient' - which meant there were no prior notes in Alexa's file. Ok fine. He told us this was the case, and I filled him in with what we had discussed last summer. Then he looked at and felt her back and says he didn't feel anything too terrible or protruding outward, and that she looked good from an outward appearance.

At this point he ordered us to go across the hall and get a standing x-ray. Well, Alexa wasn't having ANY of it. And there were 2 technicians who are basically looking at us to tell them the best way to deal with her and take the x-ray. I wanted someone there to take charge and say "Look - this isn't working. So instead we are going to do THIS." Well, instead it was me saying - "Can we hold her there somehow, or strap her in - whatever we need to do!" (I mean, we have waited 7 months for this new x-ray)

So they took it anyway with her screaming and squirming out of our hands on each of her wrists, trying to get to Daddy.  They show it to our doctor, without telling him that she was totally moving during it, and we go back to talk with him. He puts up this x-ray on the lightbox. It's terrible, and the spine is curved up to one side. Now, I realize I don't know how bad her spine really is, but it seems to us, she looks halfway straight, and this could not be at all accurate.  He says -

"Well, we have two options. We can do surgery or we can wait another 4 months or so."

Ummmm.... Are telling me we might be doing SURGERY based on THAT x-ray?? So then we talk about how much she was struggling during it, and he says "Oh, she was?". And even after that, he is marking angles and measurements on the x-ray. So he looks at her a bit again and says that we should come back again in 4 months and we should "prepare" her for doing x-ray this time.

Right. So I say "OK. I'm gonna go out on a limb and say she will be doing the exact same thing again. So what then??" I mean - if there is one thing I know, it is my daughter's temperament. At this point he is either laughing at my question, or laughing at my spirited child talking loudly, climbing off the table, hitting me, climbing on daddy (it is also smack in the middle of naptime, mind you). So he finally says "Well, we can lay her down if we can't do it standing". I'll write that in my notes, and you remember too. So he asked if we had any questions and he was gone. Why he didn't suggest we go back down the hall and get another x-ray, I don't know.

Now, don't get me wrong - I was NOT hoping to get bad news today - in fact I was hoping to be told that she is still balanced, don't do anything and come back in 6 months. But instead I feel like we did not get the correct information to make any informed decision. And I do like this Doctor - in fact we loved him last time, in addition to his wonderful assistant (who was not there this time).. So maybe that's why I was disappointed with the appointment - I just wanted more. I would like to feel as if our Dr. has taken us under his wing as we moved forward, to make us feel like Alexa is safe.

It's been a while since I have dove into all this again, but I am starting to remember all the members of the support group who said how proactive we will have to be with all this. That no one will provide all the answers (remember I discovered that her other anomalies, plus this, meant that she has VATERS association? - and thus went on a slew of doctors appts to cover our basis? Well, no one told us to do that except my own research and the group's suggestions. Turned out they were right about it).

Our next steps - making that next appt. in 4 months.
Make appt with Pulmonologist to check her lung functionality.
Bring her back to her pediatrician in March to check her weight at 2.5 (she is still below 0% for her age).

Thank you to everyone who has emailed and checked in with us to find out the update.
We love you and appreciate the concern - and I love that I can lean on our best friends and family.
I can only hope this process goes smoother, and Alexa can stay calm and feel our love, not stress.

xoxo