to their health

If you've followed us for some time, you know that A&R have some outstanding issues related to their prematurity, and as a result are being followed by quite a few specialists.  When we first came home from the NICU, we literally had 1-2 medical appointments per boy, per week.  As they've gotten older and as some of these issues have resolved or remained stagnant, those appointments have gotten less frequent.  Today, when you look at our calendar, we can go as long as a month without having a single doctor visit to go to, and let me tell you that it feels so good.  Here is where we're at with the boys' overall health.

First and foremost we will start with their neurosurgeon.  We recently had routine 6 month follow up with him to check on A&R's shunts and their general well being.  Everything checked out fine and we were instructed to come back in one year!  At the same time the boys will have brain MRI scans done just to make sure everything is ok on the "inside", but unless there is some kind of emergency we are cleared for the 365 days!  Hallelujah.  And after that, it will be two years, and so on and so forth.

Their pediatrician has seen them a little more often than he would a full term baby.  The last time we went for a check up was their 18 month well baby visit.  Everything checked out fine except the doctor wasn't exactly thrilled with their weight gain.  I didn't argue, but I didn't worry all that much either.  After all, Aiden had surgery the month before and both boys had numerous colds and even the flu.  All of which turned them off from food for a bit.  We were instructed to start them on pediasure to aid with weight gain.  I've been giving them half milk, half pediasure and when we go back this month we will see the progress they've made.  Usually after 18 months, the next well baby visit is 2 years, but our pedi wanted to see us back at 21 months.  Which is this month.  

We've nixed the NICU follow up clinic.  They've asked to see us every 6 months or so and we opted out of our last appointment.  It's usually a three hour appointment, held during nap time (which makes for some really pissed off babies), and at the end of everything we get a score of how far behind or how caught up the boys are.  Truthfully, the doctors at the clinic change frequently and they really don't tell us anything we already don't know.  The kids have enough people following their progress so we felt comfortable closing that chapter of A&R's lives.  One step close to normalcy.

Opthamology has cleared Aiden for a whole year, but since Ryan wears glasses we go back next month to check his eyesight.  At the present time he's supposed to be wearing his glasses all day long and an eye patch on his good eye (to strengthen his weak eye) for four hours a day.  We do the best we can, but baby boy hates both with a passion.  And tears everything off his face the second we turn around.  

Aiden recently had a hearing test that showed his hearing is still improved from his original tests around a year ago.  So his diagnosis is still mild hearing loss.  He goes back in 3 months for another hearing test and we get new hearing aids in two weeks.  He needed new ear molds because he's outgrown his old pair.  Now getting him to wear them and stop eating them is another story.  For another day.

Aiden has also had a couple follow up visits with his oral surgeon after his cleft repair.  Everything healed beautifully.  We go back next week and eventually will be meeting with the cleft team again to see what our game plan is for the future.  Since Aiden's cleft reached his gum line, he will need more surgery when he is older and his permanent teeth start coming in.  

Lastly, (I think) is Aiden's pediatric surgeon.  Last May he had an inguinal hernia repair.  For a while we thought that his internal incision opened up and that the repair was not successful so we've been watching things.  We and his pediatrician agree that everything looks back to normal down there, but we are waiting on a last follow up with the pediatric surgeon to confirm things.  

Slowly but surely we are knocking specialists off our list.  Eventually Ryan will see his physiatrist again, but we're not sure when that will be.  Therapists are a daily (well almost daily, weekends are free) staple in our house.  I recently counted that we have 19 sessions per week between both boys.  Thank goodness they come to us, because if we had to travel for all those appointments there would be little time left for anything else.  

One of these days I may do a day in the life post just show you a snippet of what our lives are really like. 

And because I can never post without at least one photo, here are some recent faves:

* If you look to the right, I've added an Instagram widget to the blog.  You can click on those photos and see what we're up to almost daily.  Or you can just follow us on IG from your own account :)

1 comment:

  1. Cousin Mary6/24/2013

    I love reading these. I'm so happy that things seem so good right now and I pray they always will be. I love you guys.


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