Time to add a new specialist

Your dad and I have been ignoring something for a few months.  Not really ignoring, but just not quite ready to take care of it.  But, it’s time.  Oh, if you’re reading this and are NOT already a parent, beware – you have no idea how often you will discuss your child’s bowl movements in the future.

So, Miss M has a chronic problem with constipation.  It began as soon as I stopped supplying breastmilk, when you were around 8 months old.  We tried cutting out everything but formula, prune juice, and pureed prunes, and you were still constipated.  So, reluctantly, we started giving you Miralax.  Through a lot of trial and error, we figured out that you needed a dose every 5-7 days.  Over the past months, we’ve seen the craziest things – I won’t give details here, but let’s just say you have a serious issue and it causes you a lot of pain and frustration at times, and it can go on for days.  And you don’t eat very well when you are constipated, and weight gain has always been an issue for you, so this is another serious side effect.

Now, you are drinking whole milk, eating a few more solids, and your constipation is even worse.  We’re still working through the trial and error process, to figure out what dose you need now, but I’m guessing we’re going to be giving you Miralax every day, or at least every other day.

And, we know it is time to start seeing a GI specialist.  Just to rule everything else out, see if the specialist has any other feeding or diet modifications that we might be able to implement to make things a little easier for you.  We haven’t heard of any GI abnormalities being associated with KFS, but who knows.  I think this is the last major organ system that we haven’t had checked by a specialist yet, so it is time.  As the nurse for our pediatrician said on the phone last week, when I called to talk with her about it, it’s probably a good idea to establish a relationship with the doctor, so when future problems come up, we have a baseline.  It’s funny, how we naturally assume we will have to see a GI specialist, at some point.

Your current specialist log, as of August 2012:

1. Craniofacial surgeon (every 6 months, between surgeries)
2. Neurosurgeon (every 6 months, between surgeries)
3. ENT (every 3 months)
4. Orthopedist (every 6 months)
5. Cardiologist (every year – yeah! used to be every 3 months)
6. Geneticist (every 6 months)
7. Craniofacial orthodontist (saw regularly during your first 5 months before your lip surgery, now we won’t see her again until you’re school-aged)
8. Opthamologist (saw once, no followup!)
9. Dentist (technically, everyone should see a dentist every 6 months; Miss M’s is part of her cleft team and specially trained to work with kids with craniofacial differences)
10. GI specialist (to be added – hopefully we won’t be on a regular follow up…)
11. Physical therapist (weekly)
12. Speech therapist (2x a month)

If you are counting, that is 16 specialist appointments during this coming year, not including therapy visits or standard well-checks at your pediatrician.  I haven’t counted the number of appointments you had during your first year, though I’m tempted to.  Just as a “Wow, we did that, that is where our year went”, kind of thing.  But, nah, I’m just going to keep looking forward.  Year Two, surgery-free, but lots of people still want to keep their eyes on you.

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