Thanks. Here is another one from that day, prior to sedation and in one of his more content moments. I love his face. I think he’s gorgeous, of course.
Somebody today was like "… but he looks so NORMAL. " I’m not really sure what that’s supposed to mean but it made me feel bad. I’m not sure why, it just did. Somebody else asked “Doesn’t [spina bifida; I don’t think she understood/was paying attention to what I was actually saying] cause, like, Down Syndrome?” These were both friends of siblings. I just don’t want people anymore. My sister posted something on Facebook, a prayer request or whatever which is fine, but I almost immediately got friend requests from extended family members I haven’t spoken to in years and maybe didn’t even know I’d had another baby. It feels like they’re rubber necking, sort of, because they haven’t actually said anything to me.
Just a little venting. This thread could probably be moved to MPSIMS now, if any mods happen to stop by.
I won’t go into details, but as the spouse of a disabled person I get weird reactions like that all the time. There are a lot of ignorant people is how I explain it, with a sprinkling of stupid.
I’m hoping all things are normal for your little tyke and any anomalies are just curiosities and nothing important or worrisome.
Nothing noteworthy found on the images of his brain and his spinal cord is where it should be. He does have an extra vertebra, which I’m told is a normal variation, and another one that was described as “less dense”. Our only follow up instruction is to have an xray of his spine between 6 and 12 months.
No further speculation regarding his muscle tone and other symptoms. If he misses any developmental milestones we’ll take him back but they are for now unconcerned.
(hugs) Been there- when I was pregnant with my daughter there were some serious questions about her health. When we got positive test results back, it was an incredible and bizarre mix of emotions.
I’m sort of having a hard time believing it. Like, what if they’re wrong somehow, too? He still has the increased muscle tone, exaggerated reflexes, etc whether they saw anything or not.
Maybe I’ll feel better once I get a good night’s sleep.
I am also very happy to hear it was fine. Despite the fact these dimples up that high don’t show up all that often I coincidentally just had a 2 monther last week with two dimples in a horizontal line up above the line and just got the ultrasound back today. His was okay too. Mostly they are and I am sorry about having provoked so much worry for you.
I see your most recent post. The MRI is pretty unlikely to be wrong. His tone is something you’ll follow but let’s face it, tone at this age is pretty variable and it probably would not have been noted if not for the heightened concern based on the dimples. Over the next month he should be starting to reach and working on rolling; just watch for those things and enjoy him!
No, don’t be. I’m really happy you did. I was a wreck but it was potentially way more serious than we were led to believe and I am so grateful for all the information you gave to me.
He does reach. He has an activity mat with dangly guys and he reaches for them, hands and feet, all the time. He’s also rolled tummy to back a couple times. But he’s stiff as a board when you pick him, stands in his car seat and then kind of slides into a sitting position, and arches away from us rather than cuddling into us when we hold him chest to chest. But he sits by himself with only the support of the back of the couch and can stay like that for minutes before leaning and eventually falling over. So I had it in my head that whatever it was would probably be fairly mild. Aside from his weight (took until two months to get back to birth and only weighs six pounds more than 4 months ago) he hasn’t missed any milestones yet.
I’m not entirely sure which reflexes were observed and how they were abnormal. He didn’t “walk” when the doctor stood him up on the exam table, just stiff-legged and stood there. And when he tested the Babinski reflex, Orwin’s toes flared but he jerked his entire leg away too and that was when he suggested checking out Orwin’s brain. I’m not sure if he noticed anything else.
They’re going to email his records to me so I can obsess over them for a minute.
Yes, reassuring that he hits all his milestones. And yes you and his docs will be watching him closely and probably will have a low threshold for further other evaluation if it comes to that. Is he following his own growth curve now? Pretty well matched height for weight?
Meanwhile I stand by my current diagnosis - that is a cute kid.
He’s in the 15th % for both height and weight. I think he’s in the 29th-ish for height:weight. His head is in the 90th because I have big-headed babies; my toddler has been in the upper 90s from birth. His BMI is 16.
Okay. So he was a biggish baby who found his curve and is following it with a family tradition big head. That’s fine. The issue now is the arching and apparent high tone but so far milestones are all on track or ahead. Enough to move off the high worry list. Stick with the doc you trust more, keep an eye on it, and enjoy!
" I’m not really sure what that’s supposed to mean but it made me feel bad. I’m not sure why, it just did. Somebody else asked “Doesn’t [spina bifida; I don’t think she understood/was paying attention to what I was actually saying] cause, like, Down Syndrome?” These were both friends of siblings. I just don’t want people anymore. My sister posted something on Facebook, a prayer request or whatever which is fine, but I almost immediately got friend requests from extended family members I haven’t spoken to in years and maybe didn’t even know I’d had another baby. It feels like they’re rubber necking, sort of, because they haven’t actually said anything to me.
