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