#drappts

Update on Yesterday'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...