9 Months! September 20

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!

Oh you know, just hanging out in the chair

"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!

Lazy Day Make Up - August 18

Today we successfully made up our lazy day! With the exception of speech and occupational therapy, we did absolutely nothing productive today...well, Mama did laundry and dishes and cooked and went grocery shopping...but other than that...

Today you did some great exercises on your tummy - lots of push ups and head lifts. As soon as you got over on your knees and elbow you started rocking back and forth like you were going to take off! Won't be long now!

We had a fairly uneventful weekend as well. Daddy had to work Saturday and Sunday for dorm move-in so we just hung out around the house. Sunday you got to meet Cousin S! She was visiting Aunt C and stopped by on her way out of town to meet you.

That was about it for the weekend - nothing exciting since Thursday's appointment. This weekend should be much more adventurous - it's Big Big's birthday party!

Thanks for the lazy day Baby Girl :)

Speaking Valve - August 15

So a few weeks ago I posted about your new tricky whiny face that you employ whenever you don't get what you want...

Today, you had your speaking valve on when you started pitching a fit...which makes you look AND sound even more pitiful whenever you are pitching a fit.

You've done super well the last few days with your speaking valve - before it was always touch and go.  One day you'd do fine and keep it on for 20-30 minutes and the next it would barely be on for 15 seconds before you'd start crying. Tuesday, you kept it on for an hour and ten minutes and today you had it on for one hour and 45 minutes! Hopefully this continues :)

You're also doing so well with your puree feedings that the speech therapist wants us to start doing them twice a day! AND (as you can see in the video) you can now roll over onto your right side just as well as your left side.

Keep working hard Baby Girl!

ENT Follow Up - August 14

"So you're not going to like this..." is the worst possible way ever to start when delivering test results. Unfortunately, I've heard it enough that I knew what was next. "There's absolutely nothing to indicate that the problems you had on Friday occurred."

Thanks Baby Girl.

We went in today for your follow up with ENT after last Friday's excitement. We were running a little bit late because traffic was awful. You were already tired from waking up early and the appointment being right at about the time that you usually eat breakfast and take a morning nap. And you didn't sleep as well as usually last night. Three strikes against us going in to the appointment.

All week, you've been back and forth. Mostly over your cold (about 85% I'd say...) but still a random runny nose or cough here and there. Your secretions have been perfectly thin and clear one day, and ridiculously thick and gross the next. When we suction, we're supposed to go down to 9.5 and you start gagging and coughing at 8. You haven't wanted us to do any cleaning around your trach site, and will start pushing away my hands anytime I get even close to it.

When we got to the office, they took us to get your vitals and you starting crying as soon as they picked up the blood pressure cuff....you really don't like those things, but you've never reacted that way before! Naturally, your BP reading was high. They put us in the room and you calmed down some...until you heard Dr. B's voice. You knew what was coming next and started really crying - pretty sure you hurt her feelings...y'all used to be buddies! So she looked at the outside of the trach, made a comment about the granuloma tissue still being there but not as much (but went ahead and treated it with silver nitrate anyway - strike 4!). Then she changed the trach out without any problems whatsoever. Awesome. No resistance. No fussing. No problem.

So I'm trying to explain everything that's been going on in the last week and she says, ok - we'll scope her and see what we can see. <Insert more tears and crying> We started to load you back up in your stroller and she says: "just turn the vent off and carry her down there. We know she obviously doesn't need it." Awesome. Once we get to the scope room you were so sleepy and unhappy that it didn't matter anymore - you were going to cry no matter what. She was able to get the scope in your trach pretty quickly and then looks at me and says "You're not going to want to hear this..."

Sigh.

She went all the way down to carina (part that makes you cough) - nothing.
Back up to the end of the trach - nothing.
No scar tissue. No granuloma that has retracted. No blood or scabs. Not even any irritation to indicate that something might possibly have been bothering you.
Nothing.

There is no logical reason why the trach wouldn't go back in; why it's been bothering you all week; why you've been coughing when we suction you. No evidence of any problems.

I love you Baby Girl but you are one medical mystery away from giving me an brain aneurysm.