Oops - June 15

If I had realized that it had been an entire month (instead of the couple of weeks I thought) I would have made myself post a lot sooner! We will hopefully have more exciting news this weekend - we go see the Pulminologist on Thursday and the ENT on Friday to talk about your sleep study results!

So to make up for the lack of posts, here are a lot of videos to show off what you've been working on-

We've been working a lot more with speech therapy on talking. Since your trach has been downsized and you've been wearing your cap 24/7 you are much more talkative! You're getting a lot of sound motions down (if that makes sense) but haven't put any sound with them yet. MaMaMaMa and LaLaLaLa are your favorites!

One of your latest tricks is counting your fingers and toes. We started doing this because your PT wanted you to get used to your feet so that you have more awareness of what's going on with them when it comes time to start walking. (We're still waiting on the gait trainer but are really excited to see you take off when it comes in!) It took a little bit to get used to counting all the way to five before we clapped:

Bath time is still one of your favorite times of the day. You usually don't want to get out when it's time - even when there's no water. And it's freezing. Silly Girl.

This is one of my favorites so far - we finally got your laugh on video!!!!

We had an appointment with the Developmental Center last week and you showed off brilliantly! He was very impressed by your mobility now (that was a concern last time we were here), how many words (and phrases!) you can sign now, and how smart you are! He said the main reason he wants to continue following you is to make sure once you get in school (!!!!) we are going to have a battle with the school to keep you OUT of the special needs class. He said you might need an aide because you will potentially have difficulty with writing, test taking, etc. because of your joint issues but that cognitively you are leaps and bounds ahead of "typical" kids your age!

Last one for today - we're still working on standing :)

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!

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

Seven Months!!! - July 20

How can it possibly have already been seven months?? You continue to be such a bright spot in our lives; laughing and smiling and having a great time no matter what!

This month you've learned a few new tricks - you can roll from your back to your left side (still working on the right side...); you can sit up by yourself - your record is 30 seconds; you have discovered your feet and love to bend over to look at them when you are sitting (usually why you fall over) AND have started bringing them up to reach for them whenever you are laying on your back!

You got to go "swimming" for the first time at the family reunion...you weren't all that impressed by the cold water. You also go to meet a lot of family members: Uncle J and Aunt C; Nanny's parents, sisters and brother; some of my cousins and their kids; and some friends from the church!

You got some new toys that have really been helping you with your balance, and are definitely helping keep you entertained! You are a little more high maintenance with your toys now because you've figured out that when you drop them someone will pick them up for you and talk to you...that's a fun game that I was hoping we could put off for a little longer. Fortunately, all of your new toys have playthings firmly attached. Your reaching has greatly improved and the PT wants us to have you reach up or to the side for items you really want now instead of just out front so that you can continue getting more range in your arms.

You've started showing your excitement with more forceful kicking and have twice now managed to kick your piano off of the stand! When you get going, you really get going!

You were kicking pretty hard one day when I laid you down for a nap. Daddy went to check on you at one point and came down and asked why I had put you in the crib like that...you had kicked so much when I went back downstairs that you managed to move yourself down off your head support and turned sideways! We're definitely going to have to be more watchful until you actually fall asleep from now on!

One of the biggest accomplishments this month is that you've pushed out two teeth! The second one finally came in enough that it doesn't seem to be bothering you as much as it did for a few days last week - you weren't too fussy or whiny, you just didn't want to engage in anything, especially with the speech therapist! 

Keep growing and smiling and being your happy self! We love you very much and can't wait to see what this month brings us!

Cox Family Reunion - July 12

So this is only a semi-post on the Cox Family reunion this last weekend. Uncle B & Aunt K got a new camera they've been playing with and took most of the pictures for us, but here are a few that I snapped and wanted to share!

You had a great time and were so happy, despite the heat and long day and lots of car time. Your naps were pretty much nonexistent but you did get a few quick snoozes in before someone would come by or the kids would get loud or you would get disturbed by people coming in and out of the area where we had you plugged in. You got to meet a LOT of people who have been following along and keeping up with and I am SO glad we were able to make the trip. So many people care about you that haven't even met you yet!

You and Little Big were pretty sleepy on the way there so you got a quick nap to make up for the early morning that I snapped a cute shot of - she wants your car seat to be softer so it's more comfortable for her to sleep on :)

Most important part of the day: you got to meet Papa and Granny, Nanny's parents. We pulled up about 10 minutes before they did; I don't think I've seen either of them move as fast as they did trying to get out of the car in years!

Lexi JoAnn, meet Linda JoAnn

"You're the only reason I'm here today"

They were absolutely thrilled to meet you, and by the end of the day you were grinning and smiling right back at them! I am so glad that they've gotten a chance to meet all of my girls and have wholeheartedly welcomed everyone into the family! They have been married for 54 years now and are such amazing grandparents (and great-grandparents!)

You also got to meet some of Nanny's cousins, both of her sisters and one brother, and a lot of Mama's cousins and their kids. You were so patient with everyone coming in and out and loved all of the attention you got from everyone! I'll post more pictures with family and your first time swimming when I get them from Uncle B (hint, hint :D)

We had a pretty long day on Saturday, got back late and barely made it up and out the door in time for services on Sunday morning (we weren't thinking about alarm clocks when we got home!) but I'm so glad we made it because you FINALLY got to meet Jackson!

That's all for now! More pictures to come soon :)

Happy 4th of July - July 4

We've had quite a busy week! Monday was the swallow study (still yay!!!), Tuesday sisters had dentist appointments that you got to tag along for and then we all loaded up and went to your pulminologist appointment.

Dr. M said everything looked good, to continue taking you off of the support breaths when you are awake and that we could increase the high pressure alarm so that it doesn't go off every five minutes (when you smile, laugh, nod, breathe too hard...)

We spent the afternoon hanging out as a family before sisters are gone for a couple weeks - lots of smiling and laughing!

Wednesday was a little more calm, but Thursday was even more insane! We went to see the orthopedic specialist first thing that morning. He was so much more attentive than the first Ortho we saw - he took X-rays of your spine and hips and said everything looked good. He's not concerned about your hands, but wants to see us back in 6 months to keep an eye on your feet.

We went straight from there to the geneticist's office. They mostly just wanted updates on how you're progressing but they also found a couple of new journal articles for us. Unless we have any other questions, we won't be there again.

We got home and you refused to take a nap for the longest time - which was fine because Nanny and Grandpa and cousins J and J got to see you! J has been waiting to see you for quite a while now!

Today was another busy day - breakfast at home, headed to Cedar Park for lunch and to meet Uncle J...you thoroughly enjoyed tasting the blueberry milkshake at Mighty Fine!

After that we went to plug in at Nanny and Grandpa's hotel, then met up with Uncle J and Aunt C, Uncle B and Aunt K for dinner and fireworks in Round Rock. You're a fan of Rudy's cream corn. After I pulled the spoon away you kept reaching toward me for it, so I put a little more of the sauce on the spoon and you went to town on that spoon!

You were thoroughly unimpressed by the fireworks...but that may be more because you were soooooo sleepy by that point. You took some pretty good naps today, but it was still about two and a half hours past your bedtime so not long after the show started you fell asleep in my arms, stayed asleep as we walked back to the car, barely woke up as I strapped you in and then slept all the way home.

Happy first July 4th Baby Girl!