Monday, July 7, 2014

But he is ok now, right?


These are the questions we get asked a lot. 'He's fine now, right?' Are is surgeries done?'  'Well he looks great!'
 
The reality is this:
 
  • Luke has gone under 3 times this year for  8 different procedures.  He has 2 more scheduled sedations with one extended hospital stay in November.
  • Luke has failed all of his hearing tests except for his newborn hearing screen (ABR). Meaning his permeant hearing is likely intact but his ears are so messed up all the time he can't actually hear anything. 
  • Which leads us to speech...Luke's speech is delayed behind by 15m old.  When he talks he sounds hearing impaired for sure. We have speech twice a week for an hour each.  The goal is to get him speaking but not everyone agrees on how to do that - the dr says no signing, speech pathologists say signing helps alleviate frustration. What's the 'right' answer? There prob isn't one.
  • Which leads is to frustration....Anyone who has spent time with Luke knows this, Luke is not an easy kid to parent. His anger trumps all and we run around trying to accommodate him and keep him knowing he is loved. He bites, throws, and hits all of us. Including my 15m old.  It's not always this way - We can see him changing..the more love we give the less aggressive he is but it's not easy.  We know the frustration is not his true identity and we are doing our darnedest to turn that around.
  • Luke has food pouring out of his nose all day long. The dr asked that we actually stop wiping it constantly because his upper lip was so raw it was prohibiting healing of his lip repair. So, yes, we know foods coming out of his nose. Please don't say gross or point it out. We are aware and have bigger fish to fry.

So what is next?
  • At the end of July, if lukes ears still are not functioning, they will finally fit us with a hearing aid. I am begging for it at this point. Anything that will help bring down his frustration level is welcome.
  • Luke just left the house with hubby to go to the ER. Poor kid got his third set of tubes replaced 10 days ago in a last minute surgery and, since, has had green snot spread through his nose, to one eye, then to both eyes, and now to his lungs with a seal like bark.  He screams when we try to clean his ears like they tell us to. Owie is one of 5 or 6 words he says clear as a bell.
  • In the future we have 5-7 more surgeries, at least. It's so many and it's hard to keep track. And the success rate on surgeries, specifically palate repairs, is not great.  So I would guess 5-10 more sensations before he is 16.  Here is an overview of the timeline for a kiddo with the best care born in the US.


 
In the grand scheme of things, yes he is adjusting. But this is anything but easy. His cleft is anything but cosmetic. It has caused him sickness, delays, pain, and frustration. So when you see him scream, run, throw, or hit, please don't judge him or us. He is such a lovable kid deep down. It just takes a lot if work to peel off that frustration layer to really see him. And you may only see him for a few minutes. But he is so worth it.





Holding his ear saying owie (while watching toy story on dad's phone)

3 comments:

Amy said...

We have a cleft son and live in an area with who is supposed to be the best cleft surgeon in the US. He is Chinese and has done a fabulous job with our son and others. Email me privately and I can give you more info if you like. Not sure what part of country you live in. hatcher123@comcast.net
Amy

Kerry B said...

I think about your family all the time. You guys are awesome! You made Guangzhou so much easier for me.(I was the lonely woman with the 2 girls) Has your therapist said anything about PEC's (picture exchange). We use it and it helps with frustration. We have two boys who are non-verbal. We also used it with both girls when we first got home from China. We were able to use a visual and back it up with a verbal.I know you are getting tons of advice but I needed to throw in my two cents.

Cynthia In Denver said...

You are doing amazing! There is a reason he went to you instead of us. You are doing amazing!! It is hard when those around us with bio kids only, think they can contradict your parenting based on what what they do. Don't listen to them. Or do like I do and stop sharing with them. You ARE doing amazing.