Thanks for NOTHING Seattle....

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Today is Crainalfacial Clinic in Seattle ....... so off we go ....... with our cheeseburger!

We are driving along and Nathan announces "I gotta go potty!" So for the first time we had to pull over for a potty break for Nathan! Then he charms the gas station attendant out of a free "Frazil" which is like an Icee. .. this kid.

Over the bridge, by now - Nathan knows we're probably headed to the DR .....

Hello Seattle.....

Before his appointments today .....

We colored while all the different sets of DRs and people came in ....

Update on Today's Appointments: This is long....

First off.... Nathan's left tube is still blocked. First line of defense, we are doing drops for 2 weeks and if that doesn't clear his tube, he'll have to have another surgery to replace that tube. His ear drum is retracted. Not happy with this news.

Then came the speech pathologist. Air is still escaping his nose when he talks (she says - may not be exclusive to - but includes the F sound... http://www.nchn.org.au/cleft/speech_patterns/nasal_airflow_disorders.htm ) ... he also has Apraxia of Speech (http://www.asha.org/public/speech/disorders/childhoodapraxia/ ) and as if that weren't enough .... he also has: VPI - Velo-Pharyngeal Insufficiency -(http://www.lsuhscshreveport.edu/OtolaryngologyHeadandNeckSurgery/SpeechproblemduetoVPI.aspx ) ....
So what does this all mean? It means that they want to run some tests... a scope to look how his muscles move when he talks, it looks like his palate is not moving at all or very little when he talks, and also talking about getting a "moving x-ray" where they take a video x-ray while he talks. Never heard of it but that's what they said. This will most likely result in a surgery to expand his palate or do something to his palate to at least help him make contact with it and air not escape so much. We were actually told he may need that when he had his cleft palate repaired.

And then Nutrition came in.... and this is where I just want to cry. As if all of that wasn't ENOUGH .... Nathan is growing but he is still "Failure to Thrive" and they do worry about him getting proper nutrition. It's not that we are doing anything wrong and we've worked REALLY REALLY hard to avoid this. He'll still be able to orally eat, but it'll give us a chance to supplement his nutrition at night while he's sleeping. To make sure he's getting more calories - because he still burns off calories as fast as he eats them. I can agree with this move, I see how it'll be helpful, but I have to admit I feel a little bit defeated. At least now that he isn't a hit or miss eater, and he eats all day long and enjoys food - I'm more comfortable with the fact that at least I feel - or hope - he won't fall back into the lazy eating and just take what he gets in the tube. It still makes me sad because we fought so hard to avoid this... and maybe I have done him a great dis-service because i fought so hard against this. A lot of the RSS kids have G-Tubes ....

Sigh ..... so ..... that's 3 surgeries ..... three. May not end up with all of them, but two of them are pretty high possibilities ... ENT thinks the drops may work. Probably a 50/50 shot. Seriously, I'm just gonna go cry now...

Thanks for nothing Seattle......... you gave us nothing but bad news :(

The mountain on the way home makes it a little better

Traffic and Nathan don't mix well :(   Once we get to the big bridge, he starts to relax a little bit more....

"What's that?"
"Big Bridge"
"What's it mean?'
"Going home!"

And then when we get to the Dead Fleet .....

Me "what are those?"
Nate "big boats"
Me "what's that mean?"
Nate "almost home!"