Appointment Updates - June 9-12

We've had a busy week of appointments, so here are a few highlights and updates:

1) Genetics appointment on Monday: lesson learned - call and confirm all your appointments. Apparently, we had this one on our list, but they didn't have us on their list. So we drove to San Antonio and rescheduled the appointment. Great start to the week.

2) Surgical appointment on Tuesday: called and confirmed. Glad I did because his follow up appointments aren't at the downtown, hospital office, they're on the northwest side of San Antonio! And of course as we were getting ready to walk out the door with plenty of time to get there, something happened - we're still not sure why, but you started coughing really bad and knocked some secretions loose that we weren't able to suction out so we had to do a quick emergency trach change and wait for you to calm down enough to get in the car. Fortunately, I had given us enough extra time to get there and there wasn't any traffic so we were only 15 minutes late. Dr. C said everything looks great! Your Gbutton is holding up really well, the site looks great, the scars from your diaphragm plication surgery are already starting to fade and we don't have to go back to see him for 6 months!

3) PT and OT on Wednesday were both THRILLED at how much you are progressing, especially with tummy time - we figured out how to do a modified tummy time on the hoppy pillow that you can actually stand. On Monday with the nurse you did five minutes, but on Wednesday with PT you did 10 minutes and still weren't getting upset! YAY! You are also starting to get the hang of rolling from back to side and side to back...not very fluid yet, but getting there.

4) ENT appointment on Thursday: First appointment in a long time that the doctor had to do more than look at you and say it all looks good! You still have a little bit of granuloma tissue on the outside of your trach stoma so the ENT put some more silver nitrate on it to help cauterize the tissue... and you were not happy with her at all. The silver nitrate didn't bother you too badly the first time we had to use it, but this time it did - you started crying (and set off all of your alarms) and it took quite a bit for me to get you to calm down. And then every time the ENT would say something you started crying again. You used to smile and laugh any time she came around, but today you cried every time you heard her voice after the silver nitrate. It was really sad and, as she said, a little heartbreaking to finally see something that caused you pain. You've been such a trooper with everything and haven't really ever shown any distress with anything - hopefully this is the last time we have to do that!

5) Other just for fun updates: We started putting more water in the bottom of your bathtub instead of just doing a sponge bath and you love splashing your feet! You've also started grabbing at the bowl that I use to rinse you off when we're done washing. You are a very good "helper" with your hands, unfortunately trach cleaning, bath time, suctioning and food trials aren't the best times to help. We started trying some tastes of purees like the ST suggested to get you ready for the swallow study on June 30. First, I just gave you the spoon to get used to it. You took it from me and shoved it in your mouth and didn't want to give it back - no problems there! So far we've tried apple sauce and mashed up bananas and you didn't seem to have a problem with either of them.

Over the last week or so you've started latching on to blankets, bibs, burp cloths, anything you can hold and suck on when you fall asleep (right now your favorite is the brown blanket my supervisor gave you) - but you also love playing peek-a-boo with them! It's funny to watch because if you can't pull the cloth down far enough, you'll start stretching your neck up to try and see over the top. One day, you wouldn't pull it down and then we realized you could see us out of the side of it and that was good enough for you!

Lastly, you're such a imitator! With one nurse, you started shaking your head no every time she said anything because she kept telling you "no, no" when you would play with your vent tubing. Then you started making kissy faces and noises whenever we would do it to you. Now, you've started making the most adorable squinty eye face because when your day nurse laughs her eyes squint up - and she laughs and smiles at you a lot! I tried getting a picture for the last couple of days and this is the best I could get:

That's all for now!