"Monday" Update - Sept 10

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!

Look What I Can Do! - August 28

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...

Silly girl - I'll eventually get it on video...

8 Months...REALLY?? - August 20

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 ERs and 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!