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)

Friday, May 9, 2014

Now officially one punching bag!

Luke just got out of 4 hours of surgery! This kid got the work up again and rocked it! 

He had an ABR that showed normal hearing in one ear and slightly under normal in the other. We will continue to watch his hearing and he may end up having him wear a Soft Baha band -

at some point to help his hearing in the short term, until the fluid in his ears stops. We will follow up every 3 months for a year with our U of M audiologist.

He had a tube replaced in one ear - they put in a titanium tube, pretty cool! Apparently they work better sometimes!

They put a steroid shot in his lip to reduce scar tissue. I think his lip will look better and perhaps this is something we can do at home in the future.

They repaired his soft palate completely. He now has  one 'punching bag' uvula - instead of the two split uvulas he had this morning. 

His hard palate closed 40 percent in 3 months. Amazing!! We will be back in December for the final palate repair. 

He is in some pain but we are staying on top of the medicine! Our nurse in fantastic. 

Thx for the prayers!


1 hr post surgery

Immediately post surgery. Kinda a sad pic, he really is doing well, all things considered! 

Thursday, January 30, 2014

Luke at 14 days post surgery / jake 11 mos

14 days post surgery ...Amazing, right?!
14 days

7 days

4 days

Here is my other cutie yesterday .. He is now officially 11 mos!!

I just love my boys !!!

Saturday, January 25, 2014

10 days post surgery

We are 10 days post surgery and Luke's nasal stents have fallen out. :-(He was playing and bumped his nose and broke the stitch that was supposed to last a month. Clearly that didn't happen.

Given the early fall out, his nose will more then likely not be perfect after everything heals up.  He is definitely going to need to have a nose job when he is 5. Not a huge deal and we will be able to do it before kindergarten.

He is getting back to his normal happy camper self. See a few pics below!!

Tuesday, January 21, 2014

1 week post cleft lip surgery

We are 1 week post surgery and things are going well. Like has these crazy looking nose Stints in his nose that will be there for the next 3 weeks. They ensure he can breathe, even if he swells. They also catch a lot of snot (and food) from a 2 year old. 

We just weaned him off the narcotics and he is pretty good with Tylenol, so long as we stay on too of it.

The doctor was unable to close Luke's soft palate so he still has a home between his mouth and his nasal cavity. We go back in July for another surgery where they will close the soft palate. Then in January of 2015 they will remove the prosthesis and close the palate. So 3 surgeries in one year. Not ideal but it needs to happen. We think he will then have further surgeries when he is 4 (nose),  7 (alveolar bone graph), and hopefully that is it. Elective rhinoplasty seems to always be an option at 16, if needed.

Speech evaluation is this week so we are moving right along!! 

Here are a few pics from this's pretty rough going!! Hopefully this week we get to see more if his new smile!!

4 days post surgery - beuising gets worse before better 

                       In hospital