Wednesday, August 4, 2010

Update on the Doodlebug

So we had our 18 month well visit to the pediatrician. I had a page long list of questions for him, almost all of them about Doodlebug's development and if he feels like we can still postpone all the genetic/metabolic testing and MRI.

Right now we really want to wait and see if Doodlebug's able to catch up with therapy and some time. We are also trying to get into another pediatric neurologist for a second opinion. The doc we see now won't give us a clear answer on why she is ordering all of these tests other than he is delayed. Both my husband and I have spoken with her and feel like there is something she is not telling us. Bottom line, we don't really trust her. She knows way more about neurology than I ever will, but I know way more about this little boy than she ever will. We have to work together on this, and if she won't work with us, then we will find someone who will.

We have picked a new neurologist after talking with several moms who have children with special needs. Our referral information was sent over a month ago. Just last week we got several forms to fill out and mail back in, which we did. But still, no appointment date. And from what we understand, it will be early 2011 before we can see this doc. But this also gives us the time we want to see how much progress Doodlebug can make with therapy over the next six months.

One thing I love about our pediatrician is that he tells us like it is. This is a double-edged sword though because when I have hard questions to ask I get really nervous about going to see him because I know he will tell me the truth. So here it is...

  • as long as he's making progress it's okay to put off the genetic and metabolic testing
  • keep the appointment in October with the geneticist, since we made it in February and October was the first available appointment
  • go see the other neuro for the second opinion and then decide how to proceed
  • it's still possible that Doodlebug is still just a "late bloomer"
  • all bets are off if he starts stops progressing or starts regressing

Our physical therapist says he is catching up. His skills are not age appropriate yet, but he is not as far behind as he was when we started. Go Doodlebug!

As for his speech, it's a little harder to tell if he's catching up. He is making progress but at this point we are not sure if he's getting closer to catching up with other kids his age or if he's still just as far behind. The good news is that shortly after kids learn to walk they typically have a language explosion where they progress very quickly in a short amount of time. We are almost at that point with Doodlebug. I have to say, I can't wait to be able to have a conversation with my boy.

So we are still waiting and still hoping. I was really hoping to be done with all the waiting and worrying by the time he turned 18 months, but that's just not how it turned out. It's been bittersweet watching him hit the milestone of being one and a half and knowing he is much more like a one year old than a child his age.

Looking ahead is still hard. Doodlebug is a very unusual child. In a lot of ways this makes him very easy. But then I wonder if that's just a quirk of who he is, or are we missing important signs of a bigger problem? And I just don't know.

So for now I'm just trying to enjoy my silly boy


  1. He's absolutely beautiful! I know I shouldn't say that about a boy, but he really is! He will do what he's ready to do in his own time. You are moving forward with everything you can do and now it's time to just enjoy him. As a mother, I've been where you are and I know the worry can consume you. I look back and think of all the things I missed out on because I was worried they weren't being done when they were suppose to. Fast forward 5 years later and everything is 100% perfect. Our son just progressed in his own time and he is now in an advanced class for his pre-k group! God has a plan for all of them and it will be done in His time, which is perfect timing!! You hang in there, you are an awesome momma!

  2. Amy, did you know I am a preK speech pathologist (most of my caseload this past year averaged 2 years in age)? If there is any way I can help or questions I can answer for you, I will be more than glad to talk to you about this. If you want, you can find me on Facebook through Andrea's page, and I will email you my phone number. You are being saavy - the typical "wait and see" attitude of many medical professionals is a concern to me in general. That preK time span is a child's "sponge-y" time when they soak up everything. Would love to talk to you about this, but in the meantime, I wish you the very best. Will stay tuned in to your blog!


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