18 Months and Test Results - June 21

First off, how is it possible you're already 18 months old?!?!?! I feel like I start all of your monthly updates with that statement, but each month it is even more true - where does the time go???

I've been putting off writing this post 1) because I'm in denial that you're actually 18 months old and 2) because sharing the test results from the last couple of days makes them even more real and I'm still not ready to acknowledge that. So here we go...

Your sleep study results were not good. And they weren't bad. They were "really awful" as the pulminologist said. She felt a little better after we had explained that you had been sick for a couple weeks with allergies / a cold (no one will agree what to call it but anytime a storm comes through you start coughing, sneezing, congestion sets in, etc. and you got suck right after Memorial Day....) and that you were still super congested. BUT, she said that even if we repeated the study while you were feeling perfectly fine and you got great results, knowing that a simple cold gave you such awful results, she wasn't comfortable with the trach coming out yet.

Here are the "highlights":
- You slept for 400.5 minutes out of the 462.5 minutes recorded;
- You never reached REM sleep; most of the time (49%) you were in the second level of sleep;
- You had a total of 35 obstructive apneas, 492 hypopnea episodes and 417 desaturations.

Her recommendation was for you to move back up to a size 4.0 trach so that you could go back on the vent at night. Needless to say, I was extremely disappointed. And I cried. On and off for most of the afternoon. The pulminologist is going to visit with the geneticist to see if there is any research linking sleep issues with Escobar Syndrome, but since there is so VERY little information about Escobar to start with I'm not anticipating that being very helpful. The main problem is that they still aren't sure what is causing the apnea events to occur, so they don't know how best to go about fixing it. So the trach stays.

We got back home and I had to go dust off the ventilator and hook it back up. You kept looking at me and the machine like "why is that on!?". 

Friday morning when I got you out of bed I noticed that your trach wasn't sitting quite right. It was off to the side from the vent pulling on it, but it had also come out about 1/8 of an inch...and wouldn't go back in. So I pulles it out to try to put a new one in - wouldn't go. So I tried a smaller one. Nope. So we loaded up early and headed to the ENT office. 

First thing she said: So Lexi didn't agree with the test results, huh?

It took a little while, but she was able to get a 3.0 in, and then a 3.5 (which is what you'e had in). We'll go back next Monday to upsize you to the 4.0 - she didn't want to push any further with upsizing you that day. Needless to say, that's not how I planned on starting the day - but just like last August, you didn't seem one bit bothered by the fact that your trach was out. Sigh.

We finally got things calmed down from that appointment in time to get you a quick nap and then heas to your pediatrician's office for that appointment. The pulminologist wanted us to visit with her about some of the medications and doses you were on. That appointment led us to a clinic to get blood drawn for allergy testing. Hopefully this will help solve the you have allergies vs not old enough to have allergies debate so we can get what you need to get rid of the allergies/non-allergies.

Whew!

So it has taken me four days to write this post because we left Saturday for EYLCamp and have only had about 5 minutes at a time to write little snippets at a time. You've done so good so far at camp this week - you've mostly been pretty happy with all of the new people and loud noises so far. You have a new friend that you have been SO SWEET playing with! You have started signing "baby" every time she gets brought into the room and reaching for her because you want to hug her or play with her.

You've also gotten to play a lot with Nanny and have just about mastered your shape sorter without even looking at the blocks. You've also learned the hand motions to all of The Wheels on the Bus - but you refuse to do most of them for anyone but Nanny. You have shown off most of your other skills depending on how many people are in the room :)

On the 18 month update side of things:

You've learned a couple more signs this month (baby and help) and can now point out your mouth (separate from teeth and tongue), knees and we're working on elbows. You've also started pointing to things on other people too and learning the difference between "your" or "Lexi's" eyes/nose/ears and "Mama's" or "my" eyes/nose/ears.

You've also started really clinging to Daddy a lot more and absolutely LOVED your shirt for Father's Day - anytime you saw me or Little Big you got SUPER excited and started signing DADDY!!! When you first saw your shirt you grabbed it and gave it a HUGE hug :)

You are doing so well Baby Girl - we'll keep doing things on your time and Mama will starting working on that patience and expectations thing again.