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!