Friday, July 19, 2013

Finding the Good in the Not So Good

This has been a long week full of appointments. At Cranial Technologies on Tuesday Drake received his new helmet. He is tolerating it quite well; although, he can still get out of it during the night. He has it on when I put him to bed, but some time during the night he works his way out of it. Our goal is to keep him in it as much as possible, so we will keep working toward full time wear.

On Wednesday we saw the neurologist. He was pleased with Drake's progress and happy with the tracking he was seeing. We work with Drake daily on tracking and visual stimulation in a darkened room with glow sticks and lighted toys (part of his Snowdrop program). We videoed an episode of eye flutters to show the neurologist because Poppy has been concerned that these could be seizures. The neurologist agreed and has scheduled an EEG on Monday at Medical City. We will check in at 10am and be there the full day and possibly the night. If they get enough readings during the day, we will be able to go home Monday night. Kennedy will be staying with Gran while we are busy at the hospital. As scary as seizures sound, we have always known this would be a possibility. If these are seizures, the good news is that once the type is identified, a treatment plan will be in place. 

Thursday's visit was with the developmental doctor and this was a follow up for both babies. Kennedy is doing great and will not go back for another 9months. She scored 11-12months in every category. Her doctor was surprised at how quickly she is catching up to her corrected age. Drake scored 3-4 months in every category, but said she sees slow and steady progress. What I hear is "progress" and yes, we would agree! His tracking did not go well with this doctor. The room was not dark like it was with the neurologist and his tracking abilities were sporadic. This leads the developmental doctor to believe that Drake has Cortical Visual Impairment (CVI). This is a common problem with brain injuries, and it is a problem in the brain rather than the eyes. It basically means that he can see but not necessarily all of time. There is a connection problem, like a short circuit, that is interfering. We will be going for further testing to determine if this is indeed the case. This is not the first time this has been mentioned to me by our doctor, and the first time I did not handle the news very well, but this time was different. Snowdrop has provided the hope we have been looking for, and I have actually spoken with parents who were told their child had total cortical blindness and are now seeing thanks to their Snowdrop programs. 

These follow-up appointments used to be quite daunting for us. It is difficult to listen to medical professionals who merely see things in black and white. We are gray...very gray. I get frustrated when I feel that they do not see the potential in Drake that we do, but they see him for an hour every few months and he doesn't exactly like to strut his stuff on cue. We, on the other hand, see the day to day improvements. 


  1. Kennedy and Drake are making great progress! Reading your blogs and looking at the pictures makes me feel like I have a connection to all of you. I pray all the time for the little ones, and I also pray that God guides you and the specialists in making the best choices for Drake and Kennedy. These first few years, while exhausting, will set up the kids for future success. You and Brian are doing an incredible job!

  2. drake continues to be my hero such a beautiful child god bless u all

  3. I am thankful to God that these two babies have the family they have to optimize their hope, potential, and growth. May God continue to bless you and your walk. I feel privileged to be able to pray for your family and hear continued progress; thank you for taking the time to share. <><

  4. miracles are happening for you and yours.