- Have never really gotten into St. Patrick’s Day but I did buy green mint Oreos at the food store today 👍🏼. 21 hours ago
- Some little people were very excited to get mail! #postcards instagram.com/p/BvFsJfHlU5B/… 1 day ago
- Cruisin’ into the weekend! #powerwheels #jeep #friyay instagram.com/p/BvDI_boFZnF/… 2 days ago
- While struggling through reading Fox in Socks with the kids, my daughter politely reminds me that Dr. Seuss uses words that rhyme. #dadlife 1 week ago
- #Terps seniors throwing up threes at the end of the game to get in the record book on senior night. I’m not even mad. 🤣 1 week ago
- Back over the summer, someone quit their job and went out on their own. It was a monumental decision. Leaving a car… twitter.com/i/web/status/1… 1 week ago
- Happy Anniversary @brittenpund! 9 years later and you still make every day better. You make us all better, day afte… twitter.com/i/web/status/1… 1 week ago
- Elon friends, hope you will join our family and support #ElonDay! We supported the @ElonPhoenixClub but there are m… twitter.com/i/web/status/1… 1 week ago
- Guess I’m Coach Zack now. #teeballseason instagram.com/p/BujomLvhdFg/… 2 weeks ago
- Great win by @elonmenshoops today! Future Phoenix really enjoyed it. #phoenixrising #caasports #familyouting @ SECU… twitter.com/i/web/status/1… 2 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.