- Birds traded Bundy but I see Kyle Brnovich is in the return. Multiple @ElonBaseball members in the farm system now… twitter.com/i/web/status/1… 1 day ago
- RT @ElonPhoenixClub: Join us tomorrow on #ElonGivingTuesday and help us support our student-athletes! bit.ly/34HRmMB #phoenixrisi… 3 days ago
- RT @Ravens: Day 1: a signed @Lj_era8 helmet❗️ RT to win and #ProBowlVote for Lamar❗️ Win-win 😄 https://t.co/9eoSGM7HUz 4 days ago
- Doing Christmas things. 🌲. @ TLV Tree Farm instagram.com/p/B5gD1pTloML/… 5 days ago
- Working on our 🥇 backstroke. @ Goldfish Swim School - Columbia instagram.com/p/B5YqR_VFODP/… 1 week ago
- Just casually strolling through Michael’s, waving a flag and yelling “Go Elon”! instagram.com/p/B5P8cK_lA44/… 1 week ago
- Way to comeback and close out the season with a W! Great win boys! twitter.com/ElonFootball/s… 1 week ago
- That’s what I’m talking about! Let’s go boys! twitter.com/ElonMBasketbal… 2 weeks ago
- Recovery aided by a sweet card from his Great Aunt and Uncle! Thanks to all our family and friends who have checked… twitter.com/i/web/status/1… 2 weeks ago
- “Does this foam wedge make me heavy?” - @littlerpund. Now 24 hours post surgery. Lots of love, screaming, intense m… twitter.com/i/web/status/1… 3 weeks 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.