19 Months Old! - July 31

I held off on this post so that I could include the update after your Shriner appointment...at least that's the excuse I'm going to use!

You have grown so much this month - every day you look more and more like a little girl and less and less like my little baby :(

Your hip joints are stretching out really nicely - nice enough for you to finally be able to get your toes into your mouth! You take every opportunity to try to bite your own toes, but have also figured out that it works better when you're laying down than sitting up. Gravity has taken over a couple of times now - including this morning in the Shriner lobby...their industrial carpet isn't quite as soft as our living room carpet is so you've got a nice red spot on your head now :(

You're also flexible enough to almost lay flat on the ground when you pitch your fits...

(In this one you weren't pitching a fit as much as trying to get away from Grandpa, but you do the same thing before a fit starts)

We got some letters, numbers and shapes for you to use with your flannel board and you love taking them on and off! I'm hoping to start working on learning colors and shapes pretty soon - you pick up on things so quickly I don't think it will take long!

You continue to love reading books and singing songs. Your favorites right now are "My God is So Big" "5 Little Monkeys" and "The Wheels on the Bus". We read a few books (or the same book a few times) each night and you usually end up taking a book with you to bed to keep looking at.

You love asking "what/where" with people and things - anytime someone walks out of the room (or you throw something off your table or from your chair) you hold your hands up like you're asking "where did they go?" Or "what happened?" 

You have really started to enjoy brushing your hair and teeth each night. Your hair is long enough that we have to fix it every day (which you are NOT a fan of) or I have to cut it...and we're not going there yet!!! Your back molars have started coming in so we've had a couple of days of crankiness the last week or so. That is, a few days of crankiness on top of the extreme srubborn streak that has made its appearance this month :)

You continue to love the water and have really enjoyed the few times you've gotten to go "swimming" this summer. Bath time is your favorite and you will often ask for a bath any time we walk past the bathroom.

No new signs this month, but you're saying Mamamamamama all the time now and we've gotten a few rounds of bababababa also! Your facial expressions continue to impress everyone - we can tell exactly what you're thinking or what you want just from your expressions! You've started giving "real" kisses this month, as opposed to just blowing kisses at people, and using your arms to give hugs, instead of just leaning your head toward the person you're hugging. You've also gotten a lot more cuddly, which I absolutely love :)

Bible Class is one of your favorite times of the week now - you are usually really excited on Sunday mornings and chatter excitedly all the way to the church building. You've started interacting with the teacher, and sometimes the other kids, more and more over the last couple of weeks.

Your appointment at Shriner went MUCH more quickly than last time! They fitted you for some new AFOs (ankle and foot orthotics - aka: your boots) and are glad to see that the last ones have stretched your foot downward (plantar flexion) really quickly. They will be adding a plastic piece to the front of your new ones to give them an even deeper stretch when you've got them on to push the progress along. The doctor also ordered a pair of shoes that will allow you stand as flat footed as possible (the sole will be wedged since you're mostly standing on your toes) to help encourage you to put more weight on your heels and start pushing through your legs to your heels more. Other than that, the lower extremities are moving along and doing really well. They were glad to hear you're doing so well in the stander and that we're in the process of getting the gait trainer. Hopefully the shoes will help make rapid progress on that!

The other doctor said your upper extremities look beautiful! She was so impressed watching you improvise and "make do" as you were manipulating the blocks and toys they had. She was thrilled that you have already figured out how to work around your fingers not extending all the way. She said they are the opposite of the lower extemities - they're not as concerned with positioning, bracing, etc. because it's more important for you to discover, explore and learn for yourself to help develop your fine motor skills.

The next steps with Shriner will continuing the AFO work on your feet until we are ready to look into the surgery to correct your vertical talus. Unfortunately, they're wanting to wait until your "pulminary issues" are cleared up before they look at any surgeries. In other words, your sleep study in September needs to go REALLY well so we can make steps toward getting your trach out before they'll look at foot surgery =/

Overall, really good appointment - we'll go back in late November and continue making progress! You did really well in the car also, but were WORN OUT by the time we got home!

You're doing so well and continuing to impress us all! Love you Baby Girl!

Slightly Delayed - July 18

As predicted, the orthopedic appointment last Thursday (the 9th) was completely uneventful. He said he didn't need to see us back until Shriner decided to do something, then he would be more than happy to take over any follow-ups/ post-surgical appointments needed so that we don't gave to drive back to Houston every time. Our next appointment with Shriner is the 27th so we'll go from there!

Your new favorite game has become Toe Grab...which is fine for everyone except Mama who can't stand to have her feet touched. So you try for stealth; waiting until I'm distracted and scooching over to try to grab them. This is usually the look on your face when you get caught:

Speaking of scooting, you are ALL over the place these days! You've discovered the CD and DVD shelves and love pulling those off. The other day we put you in the middle of the living room, you made your way to the shelves and pulled all of those off, worked you way to the back door to play with the blinds and a tub of balls, headed for the front door to get those blinds and then back to the living room to play with your blocks! It was pretty entertaining to watch!

You have thrown a few full blown fits over the last few weeks - one of them lasting almost 10 minutes because I didn't pick you up quickly enough. As entertaining as you are pitching a fit, we've had to learn to not laugh as you try your best to turn away or scoot away from us! You actually have a pose that you go into when we tell you to do something you don't want to - after you glare at us and turn your back you do this:

It's like you're physically "digging in" and not going to give up and do what we ask!

Here's another fit you were pitching - you didn't want to change into your shorts so we could go outside, so you refused to give me the shorts back...

In more exciting news, we had a family reunion last weekend (part of the reason for this delayed post) and got to see sisters!!! You were SO excited when they got home Friday!!! You did really well with all of the "new" people that you don't remember meeting last year.

Giving Papa kisses

Breakfast with Granny - you helped yourself to her toast

Boxes are the best!

Swimming!!!

Playing with cousins :)

We've been working on a couple of Bible Class songs and this one is your favorite so far - you just started doing some of the hand motions in the last two days and I'm so glad you let me record it because it's too cute not to share!

In other cute, exciting video news, watch this and try not to grin - ignore the video angle, I was being sneaky so you wouldn't see the phone...it's a bit slow to start with, but keep watching:

:D

The After-Shock of Camp - July 6

We had a crazy busy week after we got back from EYL Camp! In addition to getting everyone home, laundry done and sister's repacked for church camp, we also had to get ready for Big Sisters to be gone for a month to their mother's house. Our house has been way too quiet and every time we go up or down the stairs you look into their rooms and then ask "Where are they?"

You've also been COMPLETELY obsessed with babies - you've played with your baby doll every day and when we go out you are constantly pointing at babies and signing "baby" and then smiling REALLY big. You had a great time playing with your third cousin (I think that's what she is anyway...) on the 4th of July...until she tried to take your water cup :)

On Monday when we got back we had another trip to the ENT to get your trach upsized back to a 4.0. You've had some trouble adjusting to that - you won't tolerate your cap anymore because there isn't enough room to breathe around the trach; you are ok with your speaking valve for short amounts of time - but not if you're coughing or eating; you've had some blood in your secretions because it's so tight it's irritating the inside of your stoma. Other than that. you've readjusted to being back on the vent at night and we've finally gotten a good setting with the humidity that isn't causing you to drown in your secretions at night! The first few days were pretty rough nights :( We've got another sleep study scheduled for September 10 so hopefully we'll get everything figured out by then and can get some results that don't completely baffle everyone that looks at them.

Here are a few videos to get us through the rest of the week since the only thing to update on this Thursday will be a trip to the orthopedic specialist which should't have anything out of the ordinary to report...

You have become quite the little giggler - which is awesome to hear after having to work so hard to get it out of you!

You also got your first experience with swimming on July 4th - you weren't sure about the water at first but once you started splashing you were good to go! Today, every time you passed by the bathroom you would point and ask for a bath so we finally stuck you in a plastic tub of water in the kitchen to play - and you loved it! You played for about 30 minutes each time and were not ready to get out!

You were getting a little brave in the tub and tried standing -

Keep growing and loving and giving hugs and kisses and being you :)