Wow... it's been a while!

Sorry I left things hanging. :o)

The appointment with neuro was a bit of a waste. As we expected (since Mackenzie didn't act up), the sleep study and EEG didn't reveal anything neurologically. We're back to a wait and see game. If the seizure-like episodes happen again, then we'll take her back to UNC have an ambulatory EEG placed before bringing Mackenzie home again. The neurologist questions if it may have been an autonomic event (comparable to a spasm caused by the autonomic system). So far she hasn't displayed any symptoms remotely similar to those she had in the past which is obviously a great thing.

On the bright side, Mackenzie lasted the entire sleep study on just her trach collar - without any assistance from the vent. Later that night (the night after the sleep study), Mackenzie was getting worn out - requiring a liter of 02 and had an increase work of breathing. BUT... it shows that if Mackenzie didn't have the apnea issues, she'd be ready to wean off the CPAP at night. It's great to see her lungs make such great progress. :oD

Mackenzie still manages to keep us on our toes. In one day her g-tube fell out twice and her trach came out as well. Of course, between the g-tube and the trach I freaked out more about the g-tube. ;o)

From a developmental standpoint, Mac's doing great. She's taken to crawling and attempting to follow me around the house. If she's in her room and I leave, she'll crawl to the baby gate and cry and if she's in the living room she'll cry and crawl to wherever she saw me go. And so the separation anxiety begins. :o)

Mackenzie has also started clapping. It's absolutely adorable. I must say, she has Daddy wrapped around her little pinky. When putting her to bed one night, Mackenzie started clapping and "talking" to Andy... so he let her stay up an extra half hour chatting back and forth. She's a smart cookie.

We're really pushing her with signing right now. She had her first language evaluation a couple weeks ago. The speech therapist preformed a nonspeech test (NST) and a receptive-expressive language test (REEL). The NST showed that she was about 66% delayed from her adjusted age and had the equivalency of a 2-3 month old for expressive communication, but for receptive she scored 0% delay with an age equivalency of 11-14 months. The REEL test showed a 100% delay (equivalent of 0 months) for expressive communication and 45% (5 month equivalency) for receptive language. We expected the "delay" in expressive since Mackenzie can't vocalize well with her trach, and most of the expressive questions related solely to babbling. While it looks bad on paper, it's completely expected and not a worrisome problem in the least. From my understanding, once she gets to the point of being able to sign (which would be right about now) then she'll be tested on her signs instead of vocalization. So I'm sure her next test in December will be a bit more easy on the eyes. ;o)

We cut back her speech/feeding therapy to once a month. We (myself, Andy, her case manager, and speech therapist) agree there's not much to be done on a weekly basis. Mackenzie's feeding progress depends on her GI status, which the ST can't control. We feel Mac has overcome her oral aversion and is refusing/limiting because of her reflux. From a speech standpoint, Mackenzie needs daily signing and an appointment once a week really won't help much. When Mac is able to tolerate a speaking valve, then we can increase the ST sessions.