We've had some exciting new things this week that I couldn't wait until Monday to share.
One that I forgot in my last update: You now have FOUR teeth! The top two finally pushed through, after giving you so much trouble for weeks!
Second, we have some awesome nurses and one of them brought you a new toy! You weren't at all thrilled about this thing at first...
But you started to like it after the first few minutes...
And by the end of the day, you had figured out how to turn yourself in circles, were starting to kick your feet to try to make it bounce, and figured out that you could see all the way down the stairs when people were walking up and down!
Other big news, we've had to move into the big bathtub! You LOVE bath time soooo much, but the amount of water that gets splashed onto the carpet is starting to exceed what's left in the bathtub. You weren't thrilled initially, the tub was a little too cold and the water scared you a little. But once you got settled in you were super excited about all of the splashing you could do.
You were super cute once you got ahold of your toys :)
Time has flown by so fast this last year, but it really feels like just yesterday that we were talking about how exciting it was for you to be 9 months old...and now another month has already past! This month is the big one for us - you have now been home just as long as you were in the hospital!!!
You have learned and grown SO much this month, and I've tried over the last week to collect videos of everything new that's going on.
Last Wednesday you all of a sudden (and I mean, really - Tuesday was completely different!) decided that tummy time wasn't that bad! You did a 9 minute session and then a 4 minute session that day. Since then, every day you've been perfectly content for 5-10 minutes at a time and when you're done, you just roll right over!
The speech therapist has been working hard with you this month and you are responding so well!!! One of the biggest things we're still working on is moving your tongue from side to side and you're starting to do that a little more...mostly when I can't get to my camera, but we were able to catch a little bit of it here.
You also LOVE using the mesh feeder and have started grabbing at it as soon as she sits down with it to get the food in your mouth:
If you finish all of the food in the bowl, you get to play with the bowl and spoon. Lately, you've been acting like you are going to feed yourself, other times you just go crazy banging them together (another skill you've mastered this month!)
This was a pretty exciting month for traveling too - you got to go with Mama and Grandpa on a quick weekend trip for the EYL Planning Retreat and see some friends from this summer:
Shopping with Grandpa - and no vent!
You were a little cranky when we got there :)
But the rest of the weekend you were happy!
And loved being outside!
You also got to spend some time with Nanny when they came to visit. You love riding the pony with Nanny, but only Nanny. I tried to do it with you once and looked at me like I was crazy.
You are ask doing really well with your PT and OT. Your favorite thing to do is still play at your desk, usually just banging on the box but this month you learned how to bang the blocks against it with both hands, how to bang the blocks together on the desk and in the air and how to move things forward and back as well as side to side. The PT found some new toys for you to play with while we work on kneeling - you mastered those in about 5 minutes each :)
On this one, you only wanted to play with the book -
And on this one, only the laptop part - open and close and open and close and open and close -
You've been playing more in your standing / sitting toy thing (I have no idea what it's called!) and for some reason are terrified of the little smiling lion toy. Grandpa fixed that for you by putting a sock over it's head...
Other big milestones this month:
You are doing up to three hours a day now off of the ventilator and handling it just fine! We tried the trach collar twice and you were not thrilled each time. It doesn't connect to anything, just hangs around your neck, so it makes moving around really difficult because every time you move it pushed itself up into your face. So we stopped using it...don't tell Dr. M :)
We had an ENT check up last week and she said everything looked great! AND moved us to an every six month rotation instead of every three! She said the trach size looks good so we will plan on leaving you in this size for a while, and that you've actually grown into it some so you have less of a leak around it and shouldn't be able to get any sound out because there is no air going over your vocal chords...I just laughed and said someone must have forgotten to tell you that because you talk ALL THE TIME! She just laughed.
You got to meet one of Mama's really good friends last Friday (finally!) and were happy to have attention from some new people!
You've started really enjoying your time at Grammie's house - laughing and smiling and talking to her. As big as you have started looking in your chairs, you looked so tiny sitting in the high chair that she has! But you loved having the great big tray to bang on and roll your ball around!
You continue to be a happy, smiling baby! You make my day so much brighter. You have worked so hard this month and have grown so much - I can't wait to see what all happens before next month!
I know, I know - I missed Monday's post...and we had some really big news on Monday...but I'm getting to it now :)
We went to the pulminologist on Monday annnnnnnddd..... YOU GET TO START DOING SOME TIME OFF THE VENT!!!! Short amounts to start with. AND we have to use a trach collar BUT it's a small baby step in the right direction. I was a bit concerned at first because when you were on the trach collar in the hospital it was because you were still on oxygen, but now you're not. The RT explained that it will just be for humidification, and that she has to show me how to set it up and use it, but that if I feel like you can handle not having the humidity for the short amounts of time that you will be off the ventilator, well she can't control what I do :) So, for now, we are trading one machine and big long tube for another machine and big long tube, which means I have to do some rearranging in your room (again), but it will hopefully be a temporary measure until we can show them that you do fine without it. The trial periods will only be while you are awake. Eventually, we'll have to address your apnea issue (yay for another sleep study) so that we can move in that direction.
I told the doctor about your fun non-lazy day Friday story and she seemed REALLY surprised that you did so well without a trach or ventilation for more than four hours. I don't think she really believed me at first when I said you kept your oxygen levels up and weren't fussing until they tried to put the trach back in. She seemed to be waiting for the bad part of the story when something went horribly wrong...but it didn't. She said she'd be talking to the ENT about what they think the next step should be with your trach.
Here's what the trach collar looks like - it just sits on top of the trach and pumps humidified air, which means we'll be soaking through the bibs as we give it a sufficient trial run:
Yes, you've really grown that much since April!
In other, more exciting news: we had a super busy weekend - with no nurse! Our Thursday nurse called in sick, we knew we wouldn't have a nurse Friday or Saturday and then our Sunday nurse called in sick also (lots of bugs going around!) so we didn't have a day nurse at all from Thursday until Monday....and we survived! Thursday was a pretty lazy day; we tried to get caught up on everything because of the busy weekend. Friday we had an early morning dropping off sisters for the County Fair Parade, then we went and picked a spot to watch and you fell asleep. And stayed asleep. Through the sirens, bands, horns, yelling, clapping...you snoozed.
And then you woke up and were not all amused by all the noise and people and excitement...
Later that afternoon we went and took family pictures with all five of us - FINALLY! We had gotten some of you and Sisters when you were five months old, and some of you, Daddy and me, but we still hadn't had the opportunity to get some of all of us together. I am SO excited to get some these printed to add to our photo wall. Right now you've only got one picture up there! Here's the teaser Aunt C put up until we get the disc with the rest of them:
(For those on Facebook you can see more of the pictures here - I'll post the others once we get the disc with final copies!)
Saturday was another busy day - we all went to help out at the 4H booth at the Fair, where you refused to take a nap! Then we hung out for a little bit with GiGi and Other Grandpa/ Blue Eyes/ Pops (Little Big keeps changing his name...), Nanny, Uncle B and Aunt K while Daddy and Sisters played around and rode the rides. Then we all went to dinner (and you still refused to take a nap) and then Uncle B and Aunt K came to the house for a little bit and you FINALLY crashed for the night!
You didn't want to miss anything but were SO tired!
In addition to the appointment on Monday, ST introduced a mesh feeder to you that morning to help you start strengthening your jaw muscles and learn how to chew up your food. You did awesome at getting the food out of it! (Same for this morning!) There was no hesitation at all - you knew there was food in there and you were going to get it out! You're doing so awesome with all of your feedings and she was so excited about how quickly you figured out the feeder!
That's all the updates for now, so I'll leave you with a cute video of you and Little Big playing in the kitchen while I was finishing up dinner:
