Happy 13 Months - Jan 26

So I know I'm almost a week behind on this post, but hey, at least it's just a week!

You had such an awesome month since your birthday - lots of Christmas fun, lots of family time and finally all settled down and back in our school and work routine. We took some great one year old pictures with Aunt C. You wowed the doctors at your developmental appointment and have continued to learn even more since then!

We had an Orthopedic appointment January 16. He took some x-rays to make sure your hips are still in place (they are) and said next time we'll take spinal x-rays because you are at an elevated risk for scoliosis. He didn't want to make any more changes to your treatment until we can get in for a full evaluation at the Arthrogryposis Clinic at the Shriner Hospital in Houston.

Your arms (shoulders, elbows and wrists) have gotten full range of motion back but your PT is still concerned about your hip and knee joints. Those are still not fully straightening out and that is what is preventing you from being able to stand by yourself - your bent over at the hips and knees. So we asked the Orthopedic Dr (at the PTs request) about some hip and knee braces that you could wear at night to help stretch those joints and muscles more. His response was that he would rather have a full evaluation so that we don't risk messing up anything in those joints. Since they haven't straightened out as much as the arms with the stretching and exercise, his concern is that it's not a joint issue (the contractors) but that it has more to do with the arthrogryposis side of the issue (the skin being stretched too tight). If it is the arthrogryposis then the solution will involve surgery - whenever the skin forms across a joint all of the muscles, blood vessels, arteries, etc. follow the skin, so we would need to have a team of people involved to look at all aspects of the surgery (ortho, neuro, etc.) to make sure that nothing is compromised. They will also look at your ankle bones because you have what's called a vertical talus that will require surgery to fix, but it's a really painful surgery so if there isn't much chance of a solution for the hips and knees (meaning you won't walk) then there isn't a point in putting you through the pain of fixing your feet.

ANYWAY - all of these if/ then scenarios that will all depend on getting an appointment in Houston for a full evaluation. They sent in the request paperwork so now we wait until we hear back from them.

Aside from those things, it has been a great month.

You still love butternut squash most, but will still eat apple sauce, avocado, sweet potatoes, mashed potatoes, peas. You aren't as big of a fan of bananas anymore, and do NOT like ice cream or most sweet things that you've tried (which I guess is a good thing). The ST is working on having you feed yourself, which you sometimes are ok with but mostly just like opening your mouth for someone else to put the food in.

You are signing SO much more now! You sign up, Mama, eat, finished, more, open, bye-bye, please, thank you, sometimes Daddy, and we're working on bath. You are doing much better with your speaking valve - when we put it on your have a constant stream of noise coming out that sounds like a whine, but is the equivalent of when babies first figure out they can make noise and just constantly babble. When we say "use your voice" you will actually push the air over your vocal chords and talk. It doesn't bother you near as much when you cough or cry with the valve on either. You are still very expressive with your facial expressions and definitely have no problem communicating!

PT and OT are both going well. You continue to push yourself across the floor, but don't like using your arms still...although you will tolerate it for a few more seconds than before. OT is especially working with you on putting objects in a bowl or bucket or something else and rolling balls back and forth. You still love doing things at your desk!

You are fine being on your knees now, especially in front of your kneeling toy from Uncle B and Aunt K.

You love playing with the phone part of the toy and use it to call people all the time - and have since decided that anything can be a phone. Or you just put your hand up to your face with nothing in it.

Talking on your spoon phone...

Bath time is still one of your favorite times of the day, but you have also discovered that you like water just about anywhere! You love splashing your fish, frogs and ducks the bowl in Bible class when we talk about all the water animals and you recently had a fun experience with Nanny learning how the bathroom sink works!

You are such an amazing fighter and continue to surprise us everyday with the things that you are learning!

We love you Baby Girl!

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!

Lots of Learning - January 15

We have had a super busy and exciting week!

Our therapy schedule has been messed up but you have done great adjusting to a few different times. Your naps have been really long this week and you've been eating a lot more, which makes me think you're having a growth spurt...which I'm not ok with! :)

Last week you started signing "open" with one of your toys. Without being asked or prompted. We had never used that sign before and you just started doing it! It was pretty awesome - the nurse was playing with you and the toy in the video below and when she closed it back you just started signing open. Amazing!

You also learned "please" and "thank you" this past Tuesday. We showed them to you a couple of times and you had them down! You also started identifying your ears when we ask - you had eyes and teeth down, so now we're working on nose. Here's a little showing off of your signs...until you decided you were done:

I'm so proud of you and how much you learned in just one short week! At speech therapy on Wednesday the therapist had just started your mouth stretches and you signed eat - not sure if you were really hungry or just wanted out of your stretches, but it worked!

Tomorrow we will go to the Orthopedic Specialist and find out how your feet are going. The PT also wants us to ask about some hip and knee braces that you would wear at night to help finish stretching out the last of the contracture that is in those joints. That will be the biggest hurdle to you finally learning how to stand on your own....and then walk!

Wrapping Up the Week - Jan 9

Just a few cute videos to kick off the weekend -

One of the new toys that the therapist has - Lexi would only drop the balls in a certain hole for about the first 5 minutes...

Learned a new sign tonight! OPEN

Have a great weekend :)

Developmental Update - January 8

Happy Birthday and Merry Christmas and welcome to the New Year! It's officially 2015 and I'm going to get things started off right by getting the blog caught up and staying caught up! So, those are links to the posts that should have been written the last two weeks - and since I didn't write them, they're mostly pictures :)

We had your one year appointment on December 29 and Dr. R said everything looks great! You have lost a TINY amount of weight, which we blame mainly on two things.

1) You have completely revised your nap schedule over the last month. You dropped your morning nap and have instead started taking a two to two and a half hour midday nap and being completely cranky and ready for bed as soon as your bath is over. Tons of fun. But that also means that you aren't awake for your lunch time feeding by mouth. In the follow up to this post that I never wrote your pulminology (everything looks good - no changes, just a goal of getting through the winter with no major illnesses) and weight check appointments went well - they adjusted your night time feeding to end sooner so that you would be hungrier in the morning and eat more at breakfast, but that hasn't worked as well as we hoped. So you've essentially cut your feedings by mouth in half.

2) We've been on the road and traveling a lot over the last few weeks in addition to being completely off schedule so there have been days when you are just not at all interested in eating because there are way more interesting things going on!

Other than your weight dropping slightly, you are doing excellently.

We had a whirlwind of two weeks of presents between your birthday and Christmas so then we had to make room for all of your new things - yay reorganizing project for Mama! We got some things moved around in your room, worked on your closet, and added a shelf to have room for all of your toys! You absolute love your new chair from Grandpa and Nanny (via Papa and Granny when I was a little girl) but you look like such a big girl in it that it breaks my heart a little bit! Aunt C got some wonderful pictures of you in it for your one year photo shoot!

Such a big girl!

Yesterday, we went to the developmental clinic for your six month evaluation. We got to see one of our favorite nurses from the NICU who moved over (she was actually your first nurse when you got admitted) and your PT from the NICU...you were a little unsure of her at first, I think you remember all the casts she put you in :)

You showed off most of your tricks brilliantly for the doctors and they were really impressed at how far you've come! You gross motor skills (sitting alone, transitioning from laying to sitting and back, starting to pull up to standing, crawling, scooting on your bottom, etc) are at about a 6-7 month age level and your fine motor skills (using your hands and fingers, picking things up, transferring hand to hand, putting things in and taking them out, bringing your hands to midline, etc) are at about a 7-8 month age level. It was kind of discouraging to hear how far behind you are when I get to see EVERY DAY how hard you work and how far you've come, especially just in the last month or two! But it also gives us a goal to get to. Your PT is 100% convinced that you have the will and determination to learn how to walk so she is working on a plan to get some special equipment to help with that - the biggest hindrance in that your hip and knee joints are still pretty tight so we will be talking to the orthopedic specialist next week at your appointment about what we can do to help straighten those out.

On the other hand, the developmental specialist said that cognitively you are AMAZING. Your receptive language skills are great - you listen and understand and know what we're asking you to do; your expressive language skills are a little bit hampered by your inability to vocalize with the trach but he was thrilled that you are so expressive about your needs / wants and that you already know so many signs and seem to be picking them up pretty quickly. He was also thrilled that you're tolerating your speaking valve so well. We will continue working on sign language as that will most likely be your primary language for a while but he has high hopes that it won't be a problem for you to communicate!

So the biggest things to work on between now and June are: transitions (laying to sitting to standing); arm strength; movement (crawling and scooting) and continuing to learn more signs and communicating.

We are so proud of you Baby Girl and can't wait to see what's next for you!

All dressed up in one of your new outfits for the appointment

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!