2 Years Old! - December 20

You might notice that the date in the title does NOT match the date that this is being posted... that's kind of the bad thing about having a December birthday: it gets swept up in the Christmas stuff. Sorry. Welcome to the club!

We had such a fun time at your birthday party! I think you realized a little more that the day was all about you (more than last year at least) and were super excited about that! Unfortunately, being the awesome mom that I am, I only took pictures of the decorations before the party. Sigh. Nanny and Grandpa got a few videos, and posted a few pictures that I swiped, so they helped out with those below but if anyone else took any - PLEASE SHARE!

You started getting really into watching Curious George around the beginning of Thanksgiving so I thought that would be a perfect party theme...but you dropped him just as quickly when we found another show you liked better. You still liked the monkey stuff, (which is good because you got three different monkeys for your birthday and one for Christmas...) but it was more of a joke for me since you hadn't watched George in about 3 weeks at this point. Oh well :)

You still weren't overly excited about the cake part of it all though...maybe the third time we'll get a little more smashing in. I'm still hopeful :)

In other "now you're two" news:

We have new goals for PT - pulling to stand, sitting down safely (not just plopping down), working on going up the stairs (since you've mastered coming down...) 

and cruising along the furniture more fluidly being the biggest ones. You decided to work on the pulling to stand part on your own. the same day your PT mentioned you needed to work on it. We were pretty excited. You've also decided that a great time to work on standing up is during worship - the pew backs are just the right height! (Sorry to anyone sitting behind us who might be a little distracted by the head popping up every few seconds...)

You continue to be obsessed with cars - in fact you got quite a few of them for your birthday and Christmas and insist on playing with every single one of them whenever we play cars. We can't just get out one or two of them. Your favorite new ones are the train from Grammie and the police car from Uncle D and Aunt C that makes all sorts of siren noises (thanks...) You've finally figured out how the ramp works that the PT brought for you to work on standing with so it gets used quite often!

You are vocalizing SO much more now! You've got a handful of words that you say consistently and clearly and are reaching the point of babbling all day long - most of it sounds REALLY important and if we don't understand you, you will find a way to make us figure it out! You also do really well with mixing your words / sounds and signs to help clarify what you want / need. Words you are saying: Mama, Dada (sometimes Daddy), bubu (bye-bye or bubbles), upa (up with heavy emphasis on the p), Lala (Lila), Sisa (Sister...Lainey is a little difficult), Apa (usually means Grandpa), nana (Nanny), Anana (banana), da (yes, this or that), and shishi (chicken). Most importantly: vi-ta which means FRITOS.

You are working on puppy (you can say it but usually don't with much confidence) and we are starting to work on animal sounds. You've got sheep down and I really need to work on getting it recorded when you're in a good mood because it is hilarious. You make a noise in the back of your throat when we ask what a cow makes that probably is more accurate than moo.

You continue to grow and learn more and more things each day - and pull things out of the past that we had completely forgotten about! You not only used your first three word/sign phrase (Sisa, eat, cracker), but you used a sign (cracker) that we haven't worked on in about 6 months - in fact, your nurse and I didn't even realize what you were saying at first because we had forgotten the sign! You have used it daily since then.

The most fun thing about this month was the two days that you carried this box around looking for Daddy. We have no idea how you knew that this box was Daddy's or why you thought he needed it back, but you were insistent!

Your favorite thing to watch right now is the Mother Goose Club and we often catch you making the signs or doing the motions to the songs throughout the day, whether the show is on or not. You've recently figured out Itsy Bitsy Spider and I caught you signing it the other day in the middle of announcements at worship. The best part was at the end when you clapped for yourself and smiled at me because you realized I was watching :)

Big things are happening starting tomorrow that require their own post, but I'll wrap this one up by saying that 2016 is going to be a great year of progress for you!!! Keep fighting and keep working!

Test Results, Costumes, and Tantrums - Nov 5

Being two years old must be much harder than any of us remember... at least that's what you need us to think right now to justify the amount of attitude and tantrums that you have been having lately. Fortunately, they are short lived and just include you screaming (for about two seconds) and crossing your arms. Usually in response to someone asking you to put your toys up or if you want to get in your stander. At this point it's still comical, but you have had a few that require you to be put in time out. You weren't a fan of that.

We got the sleep study results back from the October 14 sleep study last week, but I haven't had an opportunity to write about them yet. Bottom line: you didn't do as well as they hoped, but it wasn't awful. You had a significant enough increase in apnea episodes with your trach capped (completely blocked off) that they are concerned, but not enough that they think you need to be back on the vent at night. So, good news and bad news. You will go back to using an HME at night (a filter that allows you to breathe through your trach and provided moisture) so that you have some extra breathing room; this has proven to be a bit of a challenge because you aren't used to all of the extra moisture and haven't adjusted to that yet. The extra moisture causes secretions to increase, which means you have to be suctioned more, which also increases secretions because it irritates your airway (vicious cycle). So far, you've only had to be suctioned once because you've been able to cough and clear all of the secretions.

Right now, we've got a bronchoscope scheduled for February 16 to take an internal look and make sure there is no extra tissue growing or anything blocking your airway; the next sleep study is scheduled for March 24. My job between now and then is to get the pulminologist (who thinks the apnea is caused by your anatomical structure - which isn't likely to change between now and March) and the ENT (who says there is nothing we should be doing between now and then) to agree on SOMETHING we can do or try, otherwise the results in March will not be any different and we'll be right back in the same boat and delaying decannulation even longer. Quite a task for Mama to take on.

In other news, you were the cutest little Dorothy ever (I say that with 100% bias because I know of at least four other little girls we know who were Dorothy and I'm sure their parents said the same thing to them) and you had such a great time at the Fall Festival this year! You even let Big Big's friends take you and play with you some so Mama got a chance to take a break :)

You also had a great time watching all the kids come up to our house to get treats - although some of the costumes you were a little unsure about... You wanted some of the toys we were passing out and seemed particularly enthralled by the finger lights and glow sticks!

Last thing, we pulled out this old toy to give back to the PT who brought it to us so she could pass it along to another patient and you have played with it non-stop since we got it out! Guess we need to start doing that with some of your other toys so that they can be "new" again too :)

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 :)

One Year Pictures - January 26

Aunt C did a fantastic job getting some one year pictures of you over the Christmas break that I haven't shared yet!

Merry Christmas!

We had several different Christmas celebrations this year - Sisters were gone the first week of their school vacation so you went with Daddy and I to visit Nanny and Grandpa and spend Christmas day with Nanny's family. We got you a few small things to open on Christmas morning so you got to practice your paper pulling skills again:

We spent a lot of time in the car and you did fairly well, until it was time for the trip home. We had to stop about every two hours to get out and walk around a little bit with you - but it was worth it for you to get to meet the rest of my family and spend some time with them!

You also got to meet some of Mama's special friends!

You weren't a huge fan of meeting new people that day...

Once we got back home, we had a couple of days of resting before Sisters got home and then we had three days worth of Christmas!

Hanging out with Uncle D at the Moseley Christmas

Spending time with Mimi 

Bundled up with Big Big!

Christmas at home...round 1!

Big boxes! 

Little Big's turn!

And Big Big! 

Testing out the new swing!

Our last Christmas was actually on New Year's Day - we got to go see Uncle J and Aunt C's new house!

Playing with Nanny

Time with Aunt K 

Learning some new "LOOKS" from Uncle J

Merry Christmas sweet girl! I know your first Christmas was technically last year, but I'm so glad we got to have a "real" Christmas with you this year!

First Birthday Party - Dec 20

There aren't too many words that I can say about your first birthday party - It's still hard enough for me to accept that you're one! Here are some great shots from the party. We had a great time with family and friends - Love you Baby Girl!

So glad Aunt C remembered the Starbucks cup tradition :) 

Getting good at pulling paper out of bags!

More paper!!!

Happy Birthday Baby Girl!