- RT @elonphoenixclub: The Elon community came together on Friday to raise over $215,000 for student-athlete scholarships at Night of the Pho… 5 hours ago
- Nothing like dropping five 10 foot boards on your foot to get the heart pumping. #ouch 1 day ago
- Rallying neighborhood support for @elonphoenix. Tough sledding today. #flamingo #snow #mdwx… instagram.com/p/BfUnbNDB7Kd/ 2 days ago
- RT @Kara_Nunnally: Happy Night of the Phoenix day!! 💛❤️ Don’t forget to check out the silent auction site here: qtego.net/qlink/elonuniv… bid… 3 days ago
- RT @elonphoenixclub: Guess what? This year's Night of the Phoenix silent auction is now LIVE online! Bid and be happy: https://t.co/PiInS… 1 week ago
- RT @littlerpund: Battle of Terra Firma. #funwithdad #adaptiveseat #dinosaurs #littlelion instagram.com/p/BfENBG3lQ3G/ 1 week ago
- When you’ve had one of those days (weeks) and you look through your photos and find this one.… instagram.com/p/BfCbfDBB6Xu/ 1 week ago
- #tbt Since we got married in 2010, this card has been in my wallet for at least 8 years. For… instagram.com/p/Be9UQBOBvyE/ 1 week ago
a collection of random thoughts and ideas from me, her, and sometimes us
all the updating I have.
February 23, 2017Posted by on
PT: we are making some progress and, most notably, now have a second stander in the hopes that we can get him upright at school more. He is able to prop himself up on his forearms and engage from the floor more.
EIS: eye gaze is an amazing thing. He continues to prove that he knows what is going on around him and that he is able to make choices. We continue to find ways to acknowledge those choices.
OT: whole milk!! He continues to just eat purées, but we have increased quantity and variety, now including chicken, turkey, and mac and cheese. If anyone has a recipe for puréed pizza, please send it our way.
Neurology: we finally got a complete breakdown of our September MRI, pieced together more fully with the genetic results. BBA is making progress developmentally, but at a slower pace than his peers. He is now 20 months (19 corrected for prematurity) and hitting developmental stages of a six month old. The MRI shows, as we have known, a symmetrical white matter volume loss. The symmetry is good; it leads to one assumption of cause and path forward: a post-birth injury/event directly linked to his plummeting blood sugar and the attempts to address it. This would mean that he would continue to progress on his own pace, not less than at a third the pace of his peers (longitudinally, for example, when he was 9, he would act as a 3 year old). Only time will tell if he would gain independence or develop more quickly than that pace. Option two would be a leukodystrophy which would be catastrophic. We aren’t going down this path of thinking because he continues to develop; it makes this option even less likely than before. We will do a repeat MRI in September and see from there what the answer is.
BBB: he is fearless and fast! BBB loves wrestling, much to the annoyance of his sister. He is continuing to learn how to communicate and can say, “more,” “all done,” and “ball.” For a kid who loves food, most specifically gold fish, what more does he need to say?!? He is the sweetest of our kiddos…quiet and calm when no one else is. He falls asleep on his own. He loves hugs.
@littlepund: she is smart. Too smart. And she pays too much attention. She has discovered bows (BIG hair bows) and jeans (and belts…let’s talk about how much additional time this has added to the morning routine). She never tires of coloring or reading books. And if you let her outside she won’t ever want to come back in. Oh, and she’s fast. She continues to practice listening and tries her very best.