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:
Happy 9 Months Baby Girl! You have had such a fantastic month - constantly growing, learning, and still impressing everyone!
You are spending a lot of time each day sitting and playing at your "desk". You've started working with blocks and learning how to stack things. Your reach is getting better and better, as is your grasp. We tried working on holding crayons, and got these great crayons thinking that they would be ok if you stuck the end in your mouth...but you ended up turning it around and sticking the crayon end in your mouth so we're holding off a little on that! They're a little bit of a softer crayon so you ended up with a lot of blue in your mouth.
You are still doing SO well with eating foods - the amount that you're eating is increasing and you are handling the foods much better in your mouth. You still have a little bit of work to do with your tongue movements but there's already been a lot of improvement since our visit to the clinic a few weeks ago. We did learn that you're not too crazy about pickles. Either that or you just really weren't sure what to think about something so different than what you've been eating! (And thank you Little Big for that nice ending...)
This week has been an up and down week. You had a low grade fever all last weekend, and we thought it was just some teeth coming in....but they haven't shown up yet. You were really fussy Monday and Tuesday and just wanted to be held and cuddled (which I was perfectly happy to do!) but started developing a cough Monday night. We did a few breathing treatments over the week but it didn't seem to help any so we actually spent your 9 month birthday at the doctors office. You were almost back to yourself Thursday and Friday and spent a lot of time playing with your new toys - you mastered getting the rings off of this toy in about 15 minutes!
Anyway, it turns out your have a slight ear infection so you're back on antibiotics; and they renewed your albuterol prescription so we can add that to your breathing treatments as needed. Also, happy day, Mama got a flu shot while we were there. Joy. Not quite how we planned to spend our day, but we survived it.
You are growing up so fast I don't even know what to do! There are days when I feel like things are going so fast that you'll be off to school with your sisters tomorrow and then we have weeks like this week where you just want to be held and rocked that remind me that you're still my Baby Girl. I love you so much and am so proud of you and how hard you're working! Keep fighting and keep growing!
This is the every Monday update that I promised...and didn't do last week. I knew we had an appointment yesterday at the feeding clinic so I told myself on Monday that I would write it on Tuesday. And then we had Big Big's open house and it never happened. SO...
You've done a lot of new things in the last week - the biggest one being bench sitting! You were sitting up nice and straight on my lap one day without any support when the PT came in and she got REALLY excited... and so this is what we worked on that day:
You looked SO grown up sitting there all by yourself!!! You sat there for almost 30 minutes and didn't come close to falling! You were shifting your weight and keeping control of your balance the whole time! We put one of the portable DVD players in front of you to encourage you to reach and stretch up and it looked like you were sitting at a little computer:
The PT suggested getting you some shoes that had traction on the bottom because you were trying to pull yourself up with your hands, but the bottom of your boots are too slippery, so I found these beauties (just for you Uncle J!)
SLOW DOWN!!!
So you've had a lot of fun with your bench sitting the last few days and then yesterday the PT brought you a desk (aka: cardboard box from Costco with a cut out that your legs fit under)! Our next steps will be to work on reaching for things in front of you and COLORING!!! Time to start working on your grasp with smaller objects! Little Big is especially excited to help out with that one!
Yesterday, we went to the Therapeutic Feeding Clinic for a follow up and they were THRILLED with your progress! They went over each of the concerns from the swallow study we had at the end of June and then fed you some food (which you showed off nicely with!) and checked off all of the concerns! Your swallow is now strong and intentional; you're able to get all of the food off of the spoon by closing your lips completely; little to none of the food is coming back out of your mouth. The only concern they still had for us to work on is your tongue movement. Your tongue usually hangs out of your mouth, but you've gotten much better about keeping it in your mouth, and you're also much better and moving it up and down (which is the motion most needed for swallowing) but still need some work on the side to side movement which will help transfer food from one side to the other, control larger portions, etc. Other than that, you were a doll - you did your happy food dance, ate beautifully and behaved wonderfully as usual! After the appointment we went and visited all of your friends in the NICU. They could not believe how big you've gotten! The last time we were able to stop by was in early June so no one had seen you in about three months - now you have teeth, a mess of hair and your new chair. But you were still the same smiling baby girl they know you to be. All of the nurses that came to say hi just talked and smiled and laughed with you, but your PT and OT were there and I'm pretty sure you got an informal evaluation as they started stretching your arms, looking at your boots, playing with your hands - but they were also extremely impressed with the progress you've made at home. I had texted Dr. G to make sure she was going to be there when we came by so we got to see her and Dr. H as well :)
You have settled in to eating downstairs with us and love getting to spend time with your sisters and Daddy. You still like to help feed yourself (another thing they were impressed with) which is usually ok, but always messy! Mostly, you just like playing with the spoon or bowl, getting the food on your hands, and then trying to figure out how to get it off.
You are doing so wonderfully well! We turned your piano around today so that you could play it with your hands and have pulled out some of the other toys that you were given that you weren't quite ready for - all of that is coming in handy now! PT wants to start working on problem solving skills (finding hidden objects, stacking blocks, etc) so that will be our next fun task!
You're still not a huge fan of pictures or videos, but I did catch you going to town with the piano a few days ago with your feet. You love pulling at the toys and making them move around and make noise and got really excited about something and just got to kicking! You've also got another cute trick: for the last three days instead of shaking your head no at everything you blow raspberries at us instead (which, of course, you didn't want to do for the camera!):
Love you so much Baby Girl! Keep working hard and we'll try to keep up!
So this week's Monday post didn't happen...but hey, it was the first day of school so I get a little bit of slack right?
We're working on getting back into a routine, especially in the mornings, and so far it's going well! You get to eat first thing in the morning while you're nice and happy so that makes it a little more fun. You're therapy sessions are right after lunch Monday - Thursday and then we have Friday off, or available for any sessions that had to be rescheduled.
This week the speech therapist said she wanted us to bump you up to three feedings each day so we get to rework that schedule again. The plan is for you to spend a little bit of time downstairs at dinner time and eat with the rest of the family. We tried it out today and it didn't go so well - there was WAY too much new stuff to look at for you to focus on eating! Hopefully that will change as you get used to having more time downstairs with us.
You've got a new trick that you were showing off really well today - but weren't too thrilled with me recording (as usual).
Here's video one of me trying to get you to do it:
In this one, you were thinking about it, but instead just got your thumbs going a little bit (you've been much more active with your thumbs, moving them individually and twirling them this week):
Then you finally decided to do it...but not if I sang...
I can't believe I'm even having to write this...but how are you already eight months old??? It doesn't seem possible! You've been home for three months now and are doing so GREAT! Your nurses and therapists are continually impressed with your progress.
You are doing so well with speech therapy - you are now eating .5-1 ounce of puree, two times a day now. And way more of it is actually staying in your mouth than getting pushed back out by your tongue. You're still touch and go as far as the speaking valve goes. Last week you had it on for a little over an hour one day and 2.5 hours the next...and then about 30 seconds the day after.
Occupation therapy is going just as well - you have FULL range of motion in your arms now, and not just when the therapist is stretching them either. You can stretch them out all the way when you reach for something - and you definitely know what you want and work hard to get to it! You love these little pool balls that I found at Dollar Tree but have just about chewed them to pieces. You've gotten really good at getting more than one of them in your mouth too :)
The PT is super excited by your progress also - you're sitting up for 3-5 minutes at a time by yourself now, still go back and forth with tummy time but getting more ok with it, and really love kicking and stomping on things with your new boots.
We didn't have any appointments scheduled this month but managed to squeeze in a trip to the pediatrician, two ERsand the ENT... Other than that it's been a nice, calm month getting settled back into the routine of having the Bigs back with us and getting them ready for school. Next week we'll be full force into the new routine and continuing to push forward. We've got appointments with the Therapeutic Feeding clinic and the Pulminologist...and hopefully no other surprise visits :)
You love spending time with your sisters still; your face lights up whenever they come into your room! It's going to be a really hard adjustment for you when they aren't here all day making noise and playing with you.
I love you Baby Girl! Daddy and I are both so proud of you and all of your hard work!
