Hello Team Addy!!

WOW it's been quite a long time since our last update... We are extremely sorry for this!! A lot has been going on in the last 8 months, but we will catch you up on some of the highlights :)

First of all...Addy has been doing absolutely AMAZING!! She has grown so much this year its crazy! All her features are changing and she's turned into such a little toddler :) She has continued to stay healthy even when Chris, Aiden, or myself come down with something which is such a blessing. We have been taking her to PT/OT twice a week and she is improving and getting stronger each week. Her therapists are so pleased with how well she has progressed. She’s so close to sitting unassisted and learning that her hands can be used for balancing, she’s interacting with toys much more, bringing toys to her mouth with both hands and doing so much better with grasping. She's been tolerating sensory food tastings in OT and making good movements with her mouth and tongue, which is so encouraging.

Since the last update, we have been making huge improvements coming down on her ventilator settings… for those familiar with ventilator settings, when we came home she was on a PIP 36, PEEP 8, Pressure Support 22, Respiratory Rate 20... she is now at a PIP 24, PEEP 8, PS 10, RR 10. The next step will be sprinting off the vent!! This means that we will turn the vent completely off, and let her breathe on her own... we will start small... let her go 2-5 minutes twice a day, and then work our way up to hopefully getting her off the ventilator completely during the day and have her hooked up to the vent at night. This is so crazy to think she's actually ready for this! So exciting!!

She had blood work done a few months ago and her labs looked amazing! Best they have ever been! We have been taking away meds that she doesn't need anymore which is so great. She’s completely off valium which is huge! We are currently weaning her Clonidine patches. So far she has been tolerating it great. We can see her becoming more alert, more active, more alive every single day :)

Addy and her little brother Aiden are the absolute cutest little duo. Aiden absolutely adores his big sister. The 4 of us went to the Zoo together for the first time on Aiden's 2nd birthday and it was such a special day for Chris and I. Being in a public place with both are kids was so surreal. All Aiden wanted to do was help push Addy and show her all the waterfalls throughout the zoo lol (Aiden is obsessed with waterfalls). Now that Addy is so more stable, we are very excited to do more family outings like that. Addy LOVES car rides and being outside... its the cutest. She is such a happy girl and has the best personality… Can't believe she's going to be 4 in December!! God is so good.

I will add a few more photos from the last 8 months to the photo gallery since I can only post 5 below...