1/30 - OT exercises

We had an OT session today, and practiced reaching for toys hanging from the fancy canopy that her daddy made for her!  Annelise started to be more wiggly and kick both of her legs in the last couple days! 😁👍
I took some photos of a sequence that happens quite often around here... so we are working with this baby on reaching for items because she doesn't use her hands intentionally.... but then I watch her take off the O2 ring and she looks like she knows what she's doing!😆

1/25 - update on the past few days

I've been sleeping instead of daily updating, but want to share some of the cute Annelise pictures with you all from the past couple days!  We had another OT session, and Annelise's goals are holding onto little toys in her hand for as long as possible, and practicing sitting up and getting control of that noggin and neck.  The OT was impressed with her eye contact.  She loves looking at faces😍 and lights.
This girl picked up drooling as a skill this week.  We are so blessed to get hand me downs from our friends right when we need them.  We have plenty of adorable bibs from our big girl twinsie friends who don't need them anymore!
Our daytime nurse will be out for the next 6 weeks.  We are hopefully getting a long term replacement... but time will tell if that will pan out.  In the meantime, Annelise has a wonderful village of people willing to sacrifice their time to get her to her appointments.  It is humbling and beautiful how our church family and friends love and show up for our girl🥰
She is thriving at home.  Her health is so fragile in nature, that I know this won't be how it is for all time, but we are determined to get as much joy as possible from these times of wellness.  God has gifted us big time with His baby Annelise.

1/19/2020 - Not so lazy Sunday

My husband is amazing!  I asked for something with pvc pipe to hang things over Annelise's crib so she can work on reaching for stuff.... and the project quickly morphed to a full canopy to keep the recessed lighting out of her eyes.  (You think recessed lighting is so wonderful until you have a baby staring up at multiple spotlights in the evenings!)  He is so handy, he just went to home depot and then whipped this up in no time! I am so impressed with the outcome and love that we have a place for her star lights that were with her in the NICU.
❤😍❤

Q

1/18/20- Saturday and a new G-button at home

This girl has me speechless.  Can't believe how much love she has in her and how much love I have for her!  We are so lucky to have her sweet soul home with us. 
Today her g-button came loose, but the back-up button that we had at home was too big for her.  Well, we already had some friends stopping by who have a big bad 4-year-old who also has Trisomy 18 and a gbutton.  They gave us a more appropriately sized hand-me-down brand new g-button that their son has outgrown!  Also got some pro tips that made us feel more confident to change her g button at home, instead of waiting for Monday so the doctor could do it. We put in the new one, and it is working perfectly!  Thank you Lord for orchestrating this morning's g-button coaching.  Always an adventure with this girl!

I have no idea what the date is today! Annelise had her first OT session

Annelise had her first OT session today!  I was excited, but didn't take any photos because I was too busy hovering wondering all of the things relevant and then some....if the OT took me seriously when I said Annelise is at risk for brittle bones so please be gentle with those fingers.... gentle!  And she's so close to her face checking out her eye tracking... I asked if anyone around her was sick... but didn't ask if she had her flu shot, shoot!  Where have those toys been...can I wash those toys for her please before you use them?  Oh my... new mom meets new mom just home from a month in the hospital.  I am glad I let her in the door, and she was a great sport. 
We got some homework to work on holding items and different textures.  This is the fun part!  The goal is for her to use her hands on purpose.  She doesn't quite know what they are there for yet... but a new thing she had started to do this week is move her hand to feel textures.  She loves her soft blankets, and also the shaved hair growing on the side of her head is a favorite she keeps exploring.😊
I haven't decided if I'm going to geek out and make a data sheet for her to track her progress.😆

1/14/20 happy to be home

1/13/20 homeward bound!

Getting ready to go home!!