Continuing the Good News - March 26

This week has been a whirlwind trying to get everything back to normal after our quick trip last week! Saturday we had Cousin L5's birthday party, then we went and hung out with some friends and played games. Sunday you REFUSED to take a nap during services, then we went and saw Grammie for lunch and you absolutely crashed when we got home. You slept from about 2:30 until 6:15 when we woke you up just so you could be awake some before bedtime!

Monday you got to see all three of your therapists and they were thrilled with how well the Houston appointment went! Tuesday we introduced you to the swing - you got it for Christmas and Grandpa helped me hang it about three weeks ago, but we're just now having nice enough weather to use it!

You were a little unsure at first...

Slowly started to enjoy it...

Really getting the hang of this...

MOST EXCITING THING EVER!!!

I think Ms. Tab and I had more fun watching your face than you had in the actual swing. Wednesday we went back out there, but all you wanted to do was eat the swing :)

The difference in right before lunch vs after dinner

Wednesday, your ST suggested we start letting you feed yourself more because you are wanting to be in control over what goes in your mouth and when. You've started insisting again that you help when someone is feeding you and have gotten particular about what you want to eat. We tried a couple of new things this week that you weren't too fond of (snap peas being one of them) but we did learn that you absolutely enjoy chocolate...as long as it's not ice cream (still too cold for you!)

This is my "I'm so excited about how awesome this is" face

So tonight I just put some food on a plate and let you have it. This is what we ended up with:

A variety of foods we know you like. You did pretty well at first...

Note the missing plate. You wanted it to go over the side with the rest of your cookie and the yogurt bites...

Sigh. I guess we're at that stage. Time to buy a rubber mat to go under your high chair :)

This week you've started really insisting on having your books a lot. As long as we guess the right one that you want (which you will let us know with your super excited face). This evening you were so tired from not taking a nap that you were super fussy when we got back from taking family pictures (can't wait to see them!) and kept signing sleep, but every time we laid you down you just cried and cried. I rocked with you a little bit and you kept pointing at your book shelf so we got you a book and then you pointed to your bed. I laid you down in bed with your book and you were happy as could be laying there reading your book! When the night nurse got here, you had already fallen asleep and the day nurse told us that she looked over at one point and you had the book tucked up under your chin with your blanket. We couldn't find the book so we are assuming it's somewhere under the blanket with you. I wish I could have gotten a picture of you reading in bed - reminds me a little bit too much of myself :)

This was the third book you wanted to read - kept signing more when you finished each one!

We had an ENT appointment this afternoon and one of the first questions she asked was: When is the pulminologist going to let you start weaning off the vent at night? She's ready for you to be done with the vent so we can get rid of the trach! She said everything looked great as far as she could tell. We scheduled for you to have an outpatient procedure on April 8 (happy birthday Nanny!) to do an airway evaluation. It's done in the OR and you will be sedated, but as long as everything goes well you'll come home that day (but we all know how much you like surprises....) They will do a complete internal exam of everything; make sure there is no scar tissue or granuloma building up around the trach, check the size of the trach, check your lungs, make sure everything looks good and see if anything else needs to be taken care of. While you are under they are also going to clear your ears out (apparently you have extremely waxy ears) and see if there is a really bad fluid build up that keeps causing you to have ear infections (even though they are pretty infrequent for a trach baby) and if there is, how old the fluid looks to see if it's not draining at all or just on occasion. If need be, they will go ahead and put in tubes. I'm fairly optimistic that since you've only have three double ear infections over an almost seven month period that it won't be necessary.

Next week will be just as busy - we have your 15 month appointment on Monday and pulminologist on Tuesday - hopefully she'll agree that we can at least start working on a plan to get off the vent more!