Pulmonologist Yesterday

Yesterday was a LOOOONG day.  Eli had his EEG first thing.  He was exhausted.  He couldn't physically keep his eyes open and stay awake and she was rushing to get everything hooked up before he was completely out.  Such a cruel thing to make a Mito kid go without sleep, it's definitely asking alot!  He did well for the EEG and slept thru the whole thing, until the end.  She had to wake him and do the strobe lights 10 times.  He hates light and was soooo unhappy with it.  When we left he fell right to sleep.
When we got home he took a 5 hr nap.  He kept dropping his O2 and was having very strange things occur while he was sleeping.  He was having strange eye movements, he was retracting and his nostrils were clamping CLOSED.  His nurse took a 5 minute video of it all.
Then in the afternoon he had his new pulmonologist appt, the doc is also the head of the sleep studies team.  He went over all Eli's info and past tests, as well as asked us alot of questions and watched the video from the earlier nap.  He immediately was concerned.  He said that it appears like seizures that are causing diaphragmatic spasms.  The seizure is basically causing his diaphragm to clamp shut and it's causing so much air to suck in that it's literally causing his nostrils to suck in and the major retractions.  Then if he goes without O2 to long that can obviously cause another seizure.  He is concerned with the number of sleep occurances he is having.  He is concerned as well that the reason Eli is such a mouth breather is because of undervelopment in the external nose and mouth area.   Right in the room he picked up the phone and called the main hospitals sleep study unit.  He told them he wanted him fitted for a full face CPAP mask and wanted his pressures increased and O2 added onto the CPAP.  He wants Eli using it ANY time he's sleeping, be it naps or overnights. 
He has also scheduled an emergency 2 Tier sleep study.  They have that scheduled for the 31st unless they get a cancel.  So we headed over and they got him fit with a mask.  At first he was trying to rip it off, so they left it at the lowest setting of 4.  As he got used to it they were able to ramp the setting up.  He did great and seemed to be very calm and playful while it was on.  They are getting his ordered and it will be here soon.
Here are a few pictures from his day.

Eli right before officially starting his EEG

Eli checking out his new CPAP mask

Eli sound asleep after dinner

Last night I took Emily to finally get her hair cut.  She has been wanting to cut it for some time and we just have never been able to get it all set up.  We are pretty open about letting our kids decide what to do with their hair and such, so this was all her choice!

Emily before her hair cut

Emily after her hair cut

the back of her hair after

Today Eli has his new appt with the renal doc.  I will try and get a quick update up this afternoon after we know more from that appt.  We won't be getting the EEG results until Monday.