So let's backtrack some...
You gave Mama a bit of a scare one day: we've figured out that you don't do well when you're off of your humidified air for more than an hour or two (so long days of appointments in San Antonio are going to be an issue). The day after, your secretions are much thicker and harder to suction out of you. One morning after we dropped the bigs off at school you started coughing when we got home. I suctioned and didn't get anything out, you were still coughing. I tried putting some saline in to loosen it up, suctioned, you were still coughing. Tried suctioning a little deeper than normal to see if it was stuck at the base of the trach tube - nothing. The one thing the trach training nurse drilled in to us was "when in doubt, change the trach out" so Mama got to do an emergency trach change....alone. We still don't have a night nurse for Monday, Tuesday, Wednesday nights and the day nurse hadn't arrived yet. I was just finishing when she got to the house so she got to walk in to all of the alarms going off but you were a happy camper! You definitely had a pretty dry plug blocking your trach though so we've had to be careful the last few times you are off the humidity for more than two hours.
May (and school!) ended quite suddenly - we took a trip up to the school for Big Big's 5th grade clap out - all of the students, teachers and parents lined the hallways and clapped them out of the elementary school building for their last day - she's officially a middle schooler now!!! Little Big's exit wasn't so glamorous...we actually had to go back to the school about 15 minutes after we got home because she realized she left her jacket and her lunch box there in her hurry to get out. You seemed to enjoy the trip (except the heat that day!) and Big Big's teachers were glad to finally get to see you.
PT has got us working on some cross body exercises (touch right hand to left knee, left hand to right shoulder, etc) and gave us a few songs we can use to do that - and you love them. Whether it's the singing or the fun gestures, you light up whenever we start! We're still working on tummy time, sometimes you are ok with it (like today!) sometimes we barely lean you forward and you know what's coming and start getting upset (usually when the PT or OT are here to work with you...I don't think they believe us that you sometimes like it!) The OT is also working on some sideline exercise - and you've figured out how to roll over so that you're back on your back. You haven't quite figured out how to get back onto your side, but you're pretty close! Her main goal right now is to work a lot on your reaching and using your individual fingers to grab things. We can always count on you reaching for Sophie!
June 1 was an exciting day - your first time in Bible class! I thought since you enjoyed the singing so much you would like the cradle roll class. I think you were too busy taking it all in to know what was going on. Everyone was so excited to see you and you looked SO precious in the red dress that Little Big picked out for you - I was just glad it still fit!!! You made it through class, slept for about 20 minutes during the sermon and then stayed awake until about 5 minutes before we finished lunch at Garcias. Then you slept all the way home and most of the afternoon.
On June 3 you got new boots! The old ones were too tight around the top and leaving red marks because of your legs grew so quickly. The PT at the hospital was pretty excited to see you and you were your usual charming, smiling self! We made a trip up to the NICU for a VISIT - got to see Dr. G. and a lot of your nurses, and Big Big got to drop off the burp clothes she helped make / collect for her 4H leadership project. She collected a total of 48 burp clothes, and some of the nurses were already eyeballing certain prints to grab for their patients as they were looking :)
We also went for your first therapeutic feeding clinic visit and met the gastroenterologist, saw the dietician, one of the speech therapist and one of the PT/OT. The gastroenterologist said everything looks great, kept the feeding amounts the same (your weight gain was still going up, but not at such a fast pace so still no fortifying!) and he and ST want us to start slowly introducing you to the spoon so you can get used to it's shape with your mouth. Once you seem comfortable with that, they want us to start dipping it in liquids for flavor so you can work on tastes, and then slowly work you up to tiny amounts of puree to see how you handle that. Their concern is that if we don't slowly introduce them to you, then we're setting you up for failure at the swallow study by trying to introduce something completely new to you and expecting you to do your best. I gave you the spoon to play with tonight and this is the first thing you did:
Needless to say, I'm not too concerned with you adjusting to the shape of it being in your mouth. You chewed on that thing for about 15 minutes!
You've got some awesome clothes that our good friend Mrs. J has been working on for you!!! She offered to work on any of the outfits you had to make them work better with your tubing and connectors and so I told her about the idea that Nanny and I had and showed her the dress we had found to use for a pattern...and how it had been sitting in your closet since Easter because let's face it: I'm not going to have the time to sit down, take it apart, make a pattern and get anything done with it! So she did. I sent it home with her after Little Big's birthday party on Saturday and she sent home a sample on Sunday - she was so excited to get to work on it and I was so excited to see it! I'll post better pictures at some point, but here is one of the outfits:
It's got buttons on the top of the sleeves so it's easier to get over your head and neck, a v-cut at the neck to give your vent tubing plenty of room, and that little pocket on the front is an access port for your g-tube. We wore one of the other ones she made to the appointments on Tuesday and it was SO nice to have direct access without having to unbuckle you fro your chair or carseat to unsnap your onesie and pull it halfway up to be able to connect your feeding extension - it was right there ready for us! I'm so excited to see the others that she makes!!!
Last bit of news: we finally got to take your "newborn" photos!!! Aunt C was so excited - she brought over her set up and we had so much fun! We got some shots with the Bigs that I can't wait to see and a lot of really good shots of you too. You weren't so sure about the whole picture thing at first, but after a little while you started sharing your sweet smile. Here's a quick sample - once they are ready, I'll post a link to the site to see more. I'm super excited to see the rest of them and get some prints to add you to our photo wall!!!
Aunt C had this sign made for you, and made you a cape, bow and skirt to go with the pink and purple superman outfit! Can't wait for the other pictures to show off the rest of the outfit! We wore you out pretty good with all the pictures and you took a nice, long afternoon nap. After bath time you were playing with Sophie while I went downstairs to wash some dishes and when I came back up, this is what I saw:
Goodnight sweet girl!
What a blessed life the Moseleys live; everybody working together to create a safe haven for three of the most precious girls. Thank you for sharing your adventures with us ... When you can ♡
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