Wednesday, July 23, 2014

Good news from the ENT!

I just want to take a minute to celebrate the fact that this little guy passed his first hearing test yesterday!! There were a few slight variations from ideal hearing but the audiologist said it still fell in the normalish range. The ENT confirmed that his tubes look good too! 

We are so darn excited to, hopefully, see this kiddos mood improve as his ears continue to feel better!!  

Funny enough, jake - my 16m old - is getting tubes placed tomorrow. He has had ear infections up the wazoo so hopefully this saves me from the painful ad hoc doctors visit during walk in hours with 4 kids in tow.

The good news is we love the boys ENT doctor at U of M. After seeing Luke in the afternoon yesterday, we ran into him at the pool yesterday evening. We will see him again tomorrow morning with jake. Hopefully that's the last time for a few months!

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)