Emmett’s last surgery…and then this post gets depressing

…(at least for the time being) will be tomorrow, as he undergoes the second stage of his hypospadias repair.

By now Emmett is pretty old hat at general anesthesia. Still, we’d appreciate your prayers that things will go smoothly, and that if possible, he might be able to actually come home tomorrow, and spare Mike and him having to spend the night in the hospital.

We are so not looking forward to the aftercare for this surgery – the catheter that will stay in for a week, the double diapering, the medications. I mean, really not. But we are looking forward to being done with surgeries for a while. At the peg tube surgeon’s office last week, he told me that he’ll probably have to have his tube replaced every year or so, and at some point in his teens, he may need valve surgery for his heart, but really, his medical problems will be totally fixed after tomorrow.

Now if only they had surgeries to fix all the non-medical stuff – that would be awesome.

We don’t do developmental updates for Emmett on this blog very often because its really depressing, and Mike and I just try not to think about his mental and developmental disabilities as much as possible. But here’s where he’s at (he is 17 months old, and it has been a year since we met him (well, a year and 5 days):

  • he is working on sitting – he can totally do it, until he forgets what he’s doing or gets upset, and then falls over backwards
  • if he is placed on his tummy, he can get up on all 4’s and rock back and forth
  • he will reach for things, although he still doesn’t really grasp objects
  • he is actually interested in baby toys
  • he will usually take a few bites of baby food at a sitting – and will sometimes eat half a jar
  • he doesn’t drink any liquids – he has lost the ability to suck a bottle, and won’t take a cup. All liquids go through his tube
  • he doesn’t seem to understand anything we say, or respond to different facial expressions or tones of voice…well, I take that back. If you smile at him, he’ll smile back if he’s in a good mood. But if you try to get him to NOT do something by telling him NO! in a stern voice with a mad face, he doesn’t even react. He will turn to you if you say his name, but then he’ll do that if you call out another random name too.
  • he still scratches himself incessently, and will totally mutilate himself if given the chance. He has to either wear long pants, socks, and a onesie (so he cant get to his abdomen), or wear socks on his hands. Part of his problem seems to be actual itchiness, and part seems to be habit or something neurological – he’ll scratch whoever is holding him too. This will obviously be a bigger problem at our next assignment than here in England, where long pants in the summer are the norm. Also, what to do after he grows out of 18-24 month clothes? Isn’t that the end of the onesies?
  • he still has no self soothing skills, so its really hard for him to calm down if he gets upset, and usually requires intervention on our part
  • on most nights, he will wake up at some point and become hysterical. Because he can’t calm himself, this is particularly not fun, and usually requires hours of work to put him back to sleep.
  • he doesn’t sleep as much as most children – he is awake at least some portion of every night, and doesn’t nap consistently during the day
  • he spends most of the time he’s in his crib beating his legs on the crib mattress. He does this awake and asleep.

Thats about it. He does make progress developmentally – just not at anything approaching a normal pace. And I think I’ve said this before, but all of his issues don’t bother me nearly as much as the lack of an emotional attachment he has towards us. I really believe that we could bring him to total strangers, and as long as we told them what he likes and dislikes, and how to take care of him, he would not even notice our absence. In fact, he has stayed with friends overnight early this spring while Mike and I went to London, with no complaints from him. As long as people are nice to him, hold him when he’s upset and meet his physical needs, he’s good to go.

Of course this does have some upside: my mom has been doing the lion’s share of taking care of him this summer while she’s been here, especially since we’ve had Silas but also in the beginning of the summer when Mike and I were completely burned out, and he adjusted to that immediately; he also does great at the child-minders and has done since day 1. And in fact, its probably made this summer a whole lot easier, because how would we manage with Silas if Emmett only wanted me, all the time? Umm, because Silas? Silas would nurse 24 hours a day if my, ahem, ladies could handle it.

But its hard knowing that your son doesn’t prefer you to anyone else.

Ok, I warned you it would be depressing, didn’t I? Lets not do another developmental update for a good long while, hmmm?



Filed under adoption, attachment/babywearing, health issues

7 responses to “Emmett’s last surgery…and then this post gets depressing

  1. Jeannie

    Oh man, Lauren, that is just beyond my comprehension. I don’t have any words other than I love you and miss you and cannot wait to see you.

    Are you getting my emails?

  2. Lauren,
    I just can’t imagine what you are going through. It must be so hard. I think about you often. There is a caringbridge that I read about a little girl named Lauren Wentz. Maybe I told you before. Can’t remember. But she is working on eating and sitting as well. They are about the same age. You might check it out in all your spare time. 😉

  3. Beth

    I know all of that developmental stuff is extremely depressing. Thanks for letting us know though. I’ll send out all the prayers and good thoughts that I can. One silver lining is he is developing some, even though it’s excruciatingly slow.

    Steve just mentioned that he has a client that owns a hyperbaric chamber…..have you ever heard of it??? Could this be an option for Emmett?

    I can’t wait to see you! Please, please, please, let me know if there’s anything I can do for you on your way to FL! You know y’all are welcome to stay with us if you need to. And I’ll help out with watching the kids or whatever if you need to look for houses.

    Hang in there, sweetie.

  4. charityfaithrose

    I just want to say again that we love you! You, Mike, they boys – you have all done such an amazing job with the challenge God has handed to you. Emmett is a sweet special boy, and I’m sure he realizes how lucky he is to have y’all and one day hopefully he’ll be able to express that to you.
    Now, to practical matters :). They have extenders out there for onesies that add 3-4 inches in length. One Step Ahead carries a 10 pk for $10.95 and they have good reviews. The link is http://www.onestepahead.com/catalog/product.jsp?productId=484759&cmSource=Search

    We love you guys and are so proud of all that you have managed!

  5. So this post earns both a “Hooray! Last surgery for a while!” and an “I’m so sorry to hear about his troubles.” I’m sure it’s heartbreaking for you all. But, from my perspective here in California, you must be doing an amazing job. I’ll be sure to send up some extra prayers for you all and Emmett this week.

  6. Wow, Lucy’s relatively mild developmental delays are tough for me sometimes; I can’t imagine how hard it must be to feel he hasn’t attached firmly with you guys on top of it. I’m really sorry to hear this, and at the same time so happy for Emmett that despite everything, he has you to help him through life.

  7. nora

    We love you! Hang in there-the “ladies” too 😉

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