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Alden had his neurodevelopmental screen at Seattle Children's… - Kathryn
September 12th, 2012
09:18 am


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Alden had his neurodevelopmental screen at Seattle Children's yesterday. The reason for the screen is because of his poor muscle tone, poor core strength, inability to reach across midline at 10 months, delayed crawling (not until 13 months), delayed walking (not until 19 months), and croup history (4 ER visits, one admission). Put together, it was enough to make my doctor say "you know, I really want to rule out anything that would benefit from early help or treatment." So off we went.

The good news is, everyone we saw agrees with the overall assessment that he's almost certainly just fine. He had a Bayley assessment, and his cognitive and fine motor skills both tested out at or above baseline, and the OT said that she has no concerns about those areas at ALL. Gross motor, however, he is delayed; enough to qualify for birth-3 services. The OT said that she would recommend that we get those, though not particularly strongly. "He could probably benefit just as much from swimming lessons or time in a toddler gym," she said. "But, you know, it's available."

Then we had an hour to kill in the outpatient waiting room before the neurodevelopmental assessment. Which was very hard. First of all, that was at naptime, and Alden was all amped up and hyper, he basically just did laps around the reception area for an hour. (Which caused a lot of disbelieving looks when I told the receptionist we were here for a motor delay!) But also, there were a lot of very sick kids there, kids with a lot of challenges, babies with NG tubes and central lines, children with profound disabilities, and my heart breaks for everyone in that waiting room but also I know that when you ARE that person with the profoundly disabled child that the pity of strangers wears on you like a hair shirt, so I was trying to focus on my happy laughing running child, which then also makes me feel like a heel. Big feelings. I came home and cried for an hour.

The ND screen was great. After establishing that Lillian is also not particularly muscular and was kind of slow to walk, and that I and my brother were both skinny, and that I'm dyspraxic and needed OT, she says the chances are extremely high that his muscle tone is just the way he is and there's no particular cause for concern. But she is doing a creatinine kinase test for Muscular Dystrophy, just because it's cheap and it would be good to have that box ticked. She said she'd be shocked if it came back anything other than normal, but I of course will not fully exhale until I get the results. She wants to see us in 4 months to make sure he's still making progress and agrees that EI is a good idea if it's easy for us to do, but apart from that we are o-kay.

Current Mood: anxiousanxious

(6 comments | Leave a comment)

[User Picture]
Date:September 12th, 2012 05:30 pm (UTC)
Hey. I have no useful comment, but I wanted you to know I read this and I'm thinking of you.
[User Picture]
Date:September 13th, 2012 05:08 am (UTC)
[User Picture]
Date:September 12th, 2012 06:48 pm (UTC)
I think it is great that they did the tests, but that they also looked at them with an eye to both you and your daughter being similar. I am glad you are getting wisdom and advice from someone who obvsly looks at the big picture. :D Also so glad to hear your voice on here. I've missed it!
[User Picture]
Date:September 14th, 2012 02:58 am (UTC)
Well, I hope you get the results soon - not being able to exhale fully must be hell on the voice :-). More seriously, I understand the anxiety, and hope you have good news in the very near future.
Date:September 14th, 2012 04:05 am (UTC)
Oof, scary. I'm glad his doctors seem to be largely unworried, and also glad that they're treating this seriously anyway. Best wishes to all of you.
[User Picture]
Date:September 14th, 2012 07:13 am (UTC)
I don't really have a useful comment to add either. i'd just like +1 this, but it's the wrong platform. But still, consider your status +1'd. (you're strong, you'll deal with it. ;) )
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