January 16- mark it and pray!

Merry Christmas, Happy New Year!
It has been a while. Honestly, I have been in a bit of a funk. It's pretty understandable and I am starting to feel better now. I don't really want to get into that, so moving on to better and cuter things!

Brinley. She's 8 months old now. Had her first Christmas and New Year. Pictures will come shortly. Medically speaking we have a few tidbits. The biggest thing is that she has her third surgery coming up on Friday, January 16. It will be sometime in the morning. Please pray for continued health for Brin so surgery is not derailed. Also, for the Doctors and Nurses who are working with her to be on top of their game and blessed just by being on Brin's case. She is expected to be recovering in the PICU for 2-3 days. All visits from NICU friends are welcome! The big girls will be well cared for and loved on by both sets of grandparents. Please pray for peace that passes understanding as we hand over our little baby for her longest surgery yet. Pray for a very quick recovery. This is an intense orthopedic procedure (they are removing one toe from each foot, a skin graft will most likely be involved too) and we need full function and circulation! Also, our ENT will be doing an endoscopy at the same time since that also requires general anesthesia. We will finally find out what is wrong in her mouth and airway...a little nerve-wracking!

Brinley has been off of her robinol (the medicine that was helping manage her secretions) for about two months now. The first weekend she needed constant suctioning but was not aspirating, so we let her try to figure it out. At this point the amount of suctioning that she needs is about the same as it was before we stopped the meds. Her eye movements have slowed down considerably but
are not completely gone- please pray that they stop completely! Because her eye function is so much better she's starting to catch up with physical and mental milestones. The physical and mental are so closely linked that it is still to hard to tell if she has any developmental delays. A special education therapist has just started working with Brinley and she's great! We are very hopeful that Brinley will continue to develop as she has a LOT of feist and personality! Our latest nickname for her is Squidge. When she's particularly rambunctious we'll say she's very "Squidgey." Lil girl is so strong and squidgy tonight that I just saw Peter giving her a ride in the air with just one hand under her bum! Her strength is fairly dependent on how healthy and rested she is (a low tone thing).

Merry Christmas- she's sitting! 

Staring at hands is still one of her favorite games

Jamming out to "Jingle Bells, Cailyn smells, Lessa laid an egg, Brinley lost her chimney top (Alessa's term for her HME) and Raina took ballet!"

Sleepy girl

She found her toes! 

I promise we will do an update after Brin is awake again and we have talked to Dr M about the endoscopy findings. We will do more post-op updates as well. We are very excited that our isolation is coming to a close. That has been really hard. On all of us. We are planning to give Brinley a week or two of post op recovery and then we will be back at church and a little more social. We can not wait! 

One last thing. A little video clip of Brinley with her passy muire valve on. Worth a minute or two, I promise!

Thank you all for your prayers! We serve a mighty God and I can tell you that we would not be anywhere near as functional and sane as we are without Him!