Thursday, December 6, 2012

Charleston Day 3

First things first, let's all wish Brinkley a happy 3 month birthday! 
3 months old

To celebrate, some hospital volunteers came by with a cart and let me choose a toy for him.  
Bryan dropped me off at the hospital this morning and he headed home to spend some time with Reese.  (I'll take my turn next weekend.)  The doctors made rounds this morning and gave me an update from last night.  He had a couple more tet spells during the night, but otherwise had an uneventful night.  (We like uneventful!)  The nurse practitioner for the surgery team made rounds with the doctors and talked with me a little about meeting with their team.  Both surgeons have been in surgery this morning, so I have not seen them yet.  I expect them anytime now.  
While we are here, I am taking advantage of our time and having all of my questions and concerns addressed.  I just spoke with the nurse practitioner for another surgical team about Brinkley's g-tube.  There have been some issues with leakage and irritation.  She has made a plan for us and is taking care of it.  Yesterday I talked with the dietician about some concerns with the formula and we are making some progress on that as well.  
We have also seen OT and PT and they were familiar with our therapy center at home and talked about how wonderful they are!  They evaluated Brinkley and said that he is in the 50th percentile for his skills according to his real age.  If you are familiar with preemies you know that medically they are evaluated based on their adujusted age (this is the age they would be had they come on their due date).  To have Down's generally also puts children behind on these scales.  Our little red-headed wonder is showing everyone what he is made of!  He is not letting Down's or prematurity hold him back!  He is continuing to amaze me and his care givers.  
I have been so overwhelmed with the love and support that we have gotten through this journey.  I am so blessed and thankful!  It has amazed me to see friends from high school and college sharing our story.  Former students from ministries that we have served in, people that we have met through the hospital and total strangers are having prayer times for us and telling people about our sweet Brinkley.  Thank you, thank you, thank you!  I can not thank you enough for the prayers and the support.  Journeys like this often feel very lonley so it is nice to know that so many people are thinking of us.
Please continue to pray and I will try to update later when we have a surgery plan.

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