Monthly Archives: November 2015

Missing, Meeting, and Managing Milestones

Standard

Lyra is now 6 months old. That means almost every doctor she sees wants to check in with her (Genetics is the only exception). At every appointment I am asked about her developmental milestones. Now, we knew from the moment we received her genetic diagnosis that there are milestones Lyra will miss, or never meet. We are okay with that. It’s not easy, but we are okay with it.

Missing: I figure I will start with the negative stuff. Lyra is behind physically. She doesn’t use her arms very much (although we had some progress today), she doesn’t bring objects to her mouth (she isn’t a fan of chewing on anything except her own fingers), and she doesn’t sit up on her own. There are other things too, but physical therapy is working with us every week. It is what it is and she will develop at her own rate. She may never “catch up”, but she will do just fine.

Managing: Okay, Lyra isn’t “managing” anything. My husband and I are. One of the biggest milestones we are managing is sleep (hers, not ours). Now, I have found many posts about 6 month sleep regression. I am not sure how much I buy into the idea, but it is a PAIN to put her down for a nap and at night. She has never been a great sleeper, but it seems to be getting harder to get her down. Now, before you comment that I need to let her fuss it out and self sooth, keep in mind that is not an option for us. If we let her fuss it out, she just pukes. All of the doctors and other professionals we work with do NOT recommend we let her fuss it out. So, I just prepare every night and have some good books on tape I listen to on headphones. Also, I have asked some other tubie mommies and they have said they do the something similar.

The other thing (not exactly a milestone) we are managing is expectation…. both ours and others. Sometimes it is hard to hear “she will do x, y and z” only to work with her for weeks and not see those things. However, it does make it that much more excited when she does meet a milestone. We also, sometimes, have to manage other people’s expectations and remind them that she is not your average child. But, like I said before, she will do just fine.

Meeting: Now for the really positive stuff. Cognitively, Lyra is right on! We are very excited about this…. Well, we are until we realize that is totally learning how to manipulate us (especially mommy). She’s learned to say “Mama”, but only when she cries. I am not totally sure it is intentional, but it really does sound like it and she pulls at my heart strings sometimes. She has also learned that, around the right people, if she fusses just a little, we will pick her up. We are learning when she is faking, but there have been a few times that we have realized she has made suckers out of us.

Lyra also has started trying solid foods! This comes with some new challenges, and she doesn’t take anywhere near enough for us to alter her tube feedings, but she is willing to put solids in her mouth. This is not always the case with tubie kids.

So, all in all, things look positive for our little one. While we still have struggles, some our totally average (like her current cold), she is growing and smiling.

 

IMG_0838

Advertisements

There has to be a better way……

Standard

Lyra is almost 6 months old!!!!!!  While I am super excited about this, I am also dreading the next 3 weeks.  6 months is a major milestone, especially for doctors. This means that EVERYONE (except Genetics) wants to see her and run additional tests.  For most kids, 6 months means a check in with the pediatrician and some shots. For Lyra is means visits with:

  • Surgery Clinic (with an ultrasound)
  • Cardiology (with an EKG and an Echocardiogram)
  • GI
  • Pediatrician (with shots)
  • Ophthalmology (no idea what tests they will want to do)
  • Urology (with an ultrasound)

Oh, and she has OT and PT appointments every week (at least these ones are at home).

Instead of having so many appointments spread over three weeks, there has to be a better way of doing this. At least they could maybe coordinate their requests for tests (I have ultrasounds on two different days). The worst part is, while I find this overwhelming, when she hits 1 year it is only going to be worse. At one year she will have all of these again plus a few more.  It’s not that she necessarily has a major issue with all of these systems, but because of her genetic diagnosis she has to monitored by a few people.

There has to be a better way.

At moments like this I wish that they could just check us into the hospital for 24-48 hours and let everyone come to her. We can run all of her tests back to back and then doctors can come to her bedside for examinations and to talk to Mark and I. She would only have to do vitals once (something she hates), we would be able to stick more closely to her feeding schedule, and we would all be able to get more sleep (messing with the nap schedule is always a BAD idea). Also, if we need to add another specialist (as often happens), she is right there! It’s not hard to get another consult when you are already in the hospital. I know that it may not be realistic, but there has to be another way to do this.

IMG_0810

Post Nap Smiles