Trach - things are looking GREAT! Your stoma hasn't quite closed up all the way, but it is getting really close. You have been so much more vocal over the last two weeks and it seems like your vocabulary has exploded - almost as if you've had all these words stuck up in your head, but they haven't been able to come out... Until now. Of course, every time we tell people that you start clamming up and refusing to talk. Like you did with your speech therapist. I was finally able to get video of a snippet of a 45-minute conversation you had about your books one day:
Your appetite has increased significantly also! We've gone from a point where I couldn't remember what you ate because you were barely even eating to I can't remember what you ate because you ate too much to keep up with. I still have to remind myself that "so much" is still barely anything compares to a non-tubie two-year-old though. I was bragging the other day that you ate four or five bites of beans and almost a whole tablespoon of rice - for you, that's monumental; for others, one mouthful. You've gotten a bit braver about trying new things also - the other night we had frito pie for dinner and you wanted to eat the chili. You took a few bites and then started dipping your fritos in it.
Foot Surgery: We made the trek to Houston for your regular check up at Shriner. The Upper Extremities doctor was not there that day, but we were able to get your hand splints adjusted. Lower Extremities were pretty happy with your progress, would like for you to spend more time in your HKFOs, and were NOT happy with the walker that our PT was able to get for us from another patient... So they sent us home with a new one! The PT knew that one wasn't in the best condition and was too big for you, but we didn't have the luxury of being picky - we'll take what we can get when it comes to not waiting for approvals! The new walker is perfectly Lexi-sized and you love it!
The downside to the appointment is that they do not want to do the surgery on your feet yet; probably not until next year. They want you to be really solid in your walking and standing so that when the time comes for recovery PT, you won't be re-learning balance, center of gravity, how to step, etc. but just remembering it from before. They said it was similar to riding a bike - once you get back on it you automatically remember how to balance and pedal. If you are stable and steady walking in your braces, after the surgery you are more likely to just pop back up. Not what we wanted to hear, but it's where we're at - so we'll keep working on standing, weight bearing and walking and hope you progress like they want you too!
Blended Diet: this is going SO well! You have so much more energy, you haven't had any major illnesses, and you bounced back from your trach removal and bronchoscopy with no issues - all of which I attribute 100% to the blended diet. I was so nervous going in about how the hospital and nurses would handle the orders, but they were great! The dietician gave them the heads up that I would be bringing in your food and the nurses more or less told me to let them know what I needed, they would let me make the calls on how much of what, and how often. We did a few days of broth and crackers; came home and slowly started adding stuff back in to the blend. We did find out that you weren't digesting the avocado as well as we thought - the day we added it back in you had really high residual amounts after each feeding (we check before each feed to see what's left in your stomach from the previous feed) and you got constipated again. Did one more day with the full amount to make sure that was the issue; then went to half the amount for a few days, problems went down slightly but didn't go away. Took the avocado out - no residual, no constipation! You have now been off Miralax for almost two weeks with no problems!
In other bathroom related news, we are slowly working on potty training. You are pretty good about going in the morning, and will tell us now when you need a diaper change. Still working on being on the before-you-go notification!
You had a playdate with Cousin L last week and you weren't too sure what to think. He gets really excited and then really loud pretty quickly and you kept looking at him like "would you just calm down..." You also weren't sure what to think about another kid playing with your toys! You guys did pretty well playing in the vicinity of one another, but didn't really play together until we went outside to play bubbles. He tried really hard to be patient and walk slowly beside you, but it didn't last for very long :)
Anyway, over all things are going fantastically well. They did finally cut down on our nursing hours so by the end of May we will be losing our night nurses. They are gradually decreasing the hours so this is our first weekend without nursing and by the end of the month we will lose Monday - Wednesday nights too. It's great that you're doing so well, but a bit nerve wracking for me to think about not having the constant help. You really don't need it at night though - no more nighttime feeds, no potential aspiration from secretions because of the trach, no need for constant monitoring!
You continue to be an extremely happy baby and love music...or just anything with a beat. This morning you were dancing to the beat as your nurse tapped out the air bubble from your feed. I must say, you do have rhythm.
You continue to be an extremely happy baby and love music...or just anything with a beat. This morning you were dancing to the beat as your nurse tapped out the air bubble from your feed. I must say, you do have rhythm.
