We have survived the summer! I remember when we finally came home from the hospital: I was pumping 8 times a day, we were bottle and tube feeding Aerin, running off to countless doctor and therapy appointments, and my two big kids needed TONS of love and attention. I had no idea how we were going to manage with daddy working 12 hour shifts! Well, needless to say, we watched a lot of tv this summer and were very blessed by many friends who hosted all of the playdates that kept the four walls of our house from closing in on us. School started on Wednesday which provides a measure of relief from the craziness for all of us--especially since we are blessed with a wonderful school family and great teachers.
Aerin is doing so well. We haven't used her G-tube for a feeding in 21 days (and prior to that it had only been twice in 14 days--so I am totally counting those two weeks as well)! Honestly, we didn't know what to expect when we brought her home and thought it would be many, many months before we would reach this milestone. The Lord is so faithful!
She is a busy little beaver. Since my last update, she had a baseline EEG that showed some slowing of the brain waves on the back of her brain. This is the same area where she had excess fluid on her brain immediately after birth. Her neurologist opted to do a CT scan to follow up on this and the original MRI done in the NICU. The CT scan showed that Aerin has enlarged first and third ventricles, probably from that excess fluid, and we are going to just watch her carefully over her first year to make sure that it does not progress into hydrocephalus. Typically this is a symptom that is outgrown by the age of one--definitely the outcome we are praying for.
She has physical therapy 2-3 times per week and oral motor therapy every other week. We have been blessed, again, with wonderful therapists. They are all very much in Aerin's corner, pushing her towards her potential and cheering her on. Physical therapy is the hardest right now (for me) since she still has a significant delay in her gross motor skills. Never before have I realized how much I took for granted with K & A. Aerin works so hard to do the most basic things: kick her legs, raise her arms, lift her head. She has definitely gotten stronger, but she still has so far to go and I can't help but feel a little overwhelmed and discouraged at times.
One of the unfortunate side effects of her gross motor delays has been developing plagiocephaly, or flat spots, on her head. We are in the process of adding yet another doctor to our "Team Aerin"--a neurosurgeon who will evaluate her to see if she is a candidate for a helmet to help reshape her head before her skull finally fuses and hardens. In the grand scheme of things, this is relatively minor. But it feels a little like a blow to our forward progress as it is yet another issue we have to tackle.
Having Aerin is like being in an Olympic training program for mental self-discipline. I am constantly having to fix my thoughts on those things which are "...true, and honorable, and right and pure and lovely and admirable." (Philippians 4:8) All of the dark, discouraging and frightening thoughts hover perilously close to my heart and it is a constant battle to keep them at bay. I admit that this was a hard week for that and I have spent more than my fair share of time in tears.
But, I come back to the line of my favorite Matt Redman song (for now anyways):
You're rich in love and you're slow to anger
You're name is great and you're heart is kind
For all your goodness I will keep on singing
10,000 reasons for my heart to find.
(from 10,000 Reasons)
And I know that I always, ALWAYS have 10,000 reasons to rejoice.
On that note, I'll leave you with a little video of my sweet girl and her giggle...