Decembers Past & Present

This Christmas season has brought so many emotions. I keep finding myself tearing up or standing in awe thinking about last Christmas compared to this year. So, I thought it would be fun to walk you through a little bit of the emotional roller coaster.

December 2014-

Brinley wore her oximeter 24-7 and was using her ventilator at night and during at least some naps.

She stared at her hand constantly. At this time she could not even hold a toy.

 She was, of course, a rockstar even then!

 We went to Cailyn's school concert sans Brinley so she wouldn't be exposed to germs. I will never forget looking around the gymnasium and thinking "No one even knows we have another kid." The end of November until about mid March were spent mainly in seclusion to avoid germs pre and post-op. This was so. very. hard. It has, in several ways, left a permanent mark on me. I will never forget everyone hustling and bustling around us, concerned about how many cookies they made or if they bought enough presents or if they could do all the things they "had" to do....and we were just thinking "Can we stay out of the PICU? Will Brinley be healthy enough to have her surgery? What will they find in her mouth and airway? Will it be things they can "fix?" How will the big girls do knowing their sister is in surgery?" And so much more. I honestly don't think I can fully express any level of how things were for our family during those months.... 

 PT sessions with K involved working on head, neck and beginning trunk control.

 My grandfather passed away and I got to hang out with these crazy people 

(all the cousins minus my brother, Sam.)

Her fishy was her BFF

She needed a boppy to support her long enough to sit for this picture (she still kept flopping over)

Sisters adored her.

She found her toes just in time to say goodbye.

Months of seclusion and germophobia paid off as she was healthy going into her surgery.

December 2015- The ventilator has been collecting dust since March! We do still use the oximeter at night time, more for peace of mind than anything else. Brinley has not had any desats that she has had to be stimulated to bring her out of in a very long time!

She no longer stares at her hand but can use both of them to clap, sign and play. She's so close to crawling and is coming along well with standing/walking with support. While her motor development is still delayed, it's just amazing to see how far she has come in a year!

We are working on food to taste with Miss B. So far this has been an overall success. 

She stopped mid-way for some OT- shredding the paper that she had drawn during her session earlier that day.

More OT and Peter's new favorite game "Feed Daddy chocolate chips"

Lego time with the big kids (and Daddy, the biggest kid of all)

I'm just so in love with my girls!

Nurse C reading "Book" Brin's favorite thing ever

Not only did we have 3 out of 4 grandparents at Cailyn and Raina's school concert this year, but miss Brinley came too!

She was, of course, properly entertained, adored and snuggled.

Big sisters singing while Nammy and Lessa (can't see her) snuggle

A few prayer points as things are constantly changing around here....

1- God's grace for all of us as Nurse J has moved on and we are left with only one part time nurse! On a very related note I can't drive anywhere with Brin so if you want to hang out, you'll have to come over ;)

One of my favorite recent pictures with Nurse J
(This is every hair clip, headband and felt christmas tree ornament! She will be missed!).

2- Health for us all. Right now Peter, Brin and I are all a bit under the weather. Now that we have much less nursing coverage we will try to minimize germ exposure by not be going out as much. Taking care of all the kids/house/life is going to be hard enough without everyone being sick. Please, please pray for health for our family this winter!

 Thank you for each and every prayer, meal, babysitting session, yardwork help, nursing shift, therapy session, visit, financial gift etc. You are all such a blessing to our family and part of the story that God is writing in our family's lives!