The one year medical stuff

Daniel had his one year check up Wednesday morning. It was good and bad.

The good: He is healthy. His growth continues to be right on track, and he’s big enough that we didn’t bother with the Down syndrome growth charts. He weighs 21 lbs 5.5 oz, is 29 7/8 inches tall (which, holy crap we have to buy and new car seat- the one he’s in is good to 30 inches.) and his head is 18 1/8 inches around. So that’s 51% for height, 51% for weight, and 49% for head size. He’s just an averaged sized guy!

Also good: we had his eyes rechecked on Monday because his tear ducts were blocked at 6 months, and she wanted to do some surgery to clear them if they were still blocked at a year. But! Not blocked! (She wasn’t *completely* happy with how they looked, but happy enough to leave them alone for another 6 months at which point he’ll need his vision checked again anyway.)

Okay, the bad isn’t so bad, it’s just…answering the 12 month questionnaire was a reality check. Before I elaborate, let me say that Daniel’s progress has been great. His therapist is pleased, we’re happy and so is his pediatrician. He makes progress every week. It’s visible  progress and that is FABULOUS. However. Going through 30 “can your child/does your child do this” type questions and only being able to say yes to one? Not my favorite. (The one he does do? Pushes his arm through a sleeve when I get him dressed.)

Obviously we know he’s delayed. I mean, he’s a year old and he doesn’t even crawl on his hands and knees yet. THIS IS EXPECTED. Still, to read through all those developmental questions and mark No. No. No. Was hard. ON THE OTHER HAND, part of me wants to carry this around and show it to people. Because I get people who I’m sure mean to be encouraging saying things like, “He doesn’t even seem delayed!” or “He seems totally fine!” And the reality is that he IS delayed. The reality is that he doesn’t say any words. He doesn’t even make any consonant noises. He doesn’t use a pincer grasp. At all. He can’t get into standing by himself. He can’t sit down from standing. Or cruise on furniture. Or walk, even holding someone’s hands. He is just barely starting to get into a sitting position without help. And all this is after almost A YEAR of physical/occupational therapy.

I don’t want to come across as being disappointed in where he is. I’m not! It’s just that Daniel’s world is far removed from most one-year-olds, and this was a stark reminder of that.

Anyway, let’s end on a happy note shall we? A picture of smiling, happy, wonderful baby Daniel.


(At the doctor, before the shots.)

P.S. The doctor printed out the 9 month questionnaire for me to fill out instead. (Her suggestion.) We’ll continue do that (use the one from the previous visit) at his next visits.


16 thoughts on “The one year medical stuff

  1. I love your ped — I think using the previous checkup’s questionnaire is brilliant.
    Proposed bonus question: Is your child awesome?
    Happy birthday, Daniel. (Sorry about the shots, sweetie!)

  2. That’s a good idea to look at the checklists for the appointment prior to the one you’re going to. You know he’s delayed, but that way you can still check some things off and see progress. He is making progress, I know you know that, but it’s sometimes nice to have it externally validated by a checklist, even if the age at the top of the checklist is a bit off.
    He is a damn good baby, and super cute to boot. xo

    • Yes, I was surprised at how much that external validation meant to me. I mean, I opened the checklist KNOWING he couldn’t do the stuff. And still it stung. But I can look back at older blog posts and SEE his progress! Anyway, you’re right, he is an excellent baby.

  3. Sounds like a great idea. In our world with children with Down syndrome, it’s not about where they are, it’s about how far they’ve come. Make sure you get a copy of that 9-month check list and keep them all together somewhere so when things look bleak you have something you can see with your own eyes that marks his progress. He’s one beautiful kiddo!

    • That’s a great idea! It is nice to see milestones being met, even if it’s months later than typical. (I need to do a post on that actually, because he’s done several new things in the last week!) And thank you, I like to think he’s pretty cute 🙂

  4. So this was an interesting post for me to read, because (as I think you know) the focus of my anxiety is Ruby’s development. My first thought reading this was THANK GOD we don’t have to fill out a questionnaire like that! Ours has 30ish questions too, but only like 5 tops have to do with development. The rest of them are like, “Do you leave your baby in the bathtub alone?” Uh… No.

    My next thought was, “But Daniel’s sort of supposed to have delays. No big deal.” This coming from ME. The woman who is CRAZY about developmental progress. So I get that it’s not that simple. I’m sure I would be worried about it if I was in your situation. But since I’m not, I’m able to look at it and feel confident that he’ll catch up in his own time. He’ll talk and walk and pinch and do everything and everything will be fine.

    And my last thought was, “Shit. Elsha mentioned his inability to say words as a delay. I knew it. Ruby hasn’t said any words either. She probably never will.” Because you know I always have to make everything about ME.

    • Logically I know he’ll catch up and that delays are expected. It was just so black & white there, you know?

      Also, I am guessing that Ruby says words the way this survey means. I’ll quote: “A ‘word’ is a sound or sounds your baby says consistently to mean someone or something.” So if she says “Muh” to mean milk (or whatever) that counts. I’m not worried about him not talking at a year. None of my kids talked at a year.

      It does make me laugh a little bit that you worry about Ruby never talking, while I assume Daniel will talk eventually. Especially because I know there are people with Down syndrome who DON’T talk. At all!

  5. Ugh, I really hated those moments. The nice thing is, after the first couple of years they become more and more infrequent and, well, no one really cares anymore, you know? At age 6, no one cares when Pacey walked (please don’t take this to mean milestones shouldn’t be celebrated). I do agree, though, that to have a personal record of HIS progress is so nice. I confess that I have days where I feel frustrated and a little sorry for myself, and to look back on my blog and see all the challenges we’ve overcome is really validating.

    • Oh, we’re definitely celebrating milestones! They seem even sweeter because we’ve waited for them. But yes, definitely looking forward to the time when all the big obvious milestones have been hit.

  6. I could have written this post about how I felt about Iris’ development. To the “t.”

    On one hand: T and I and her four therapists could SEE her progress. I know it existed in really tangible, incredible and hard-earned ways. I also knew that Iris was delayed.

    On the other hand: seeing her with babies/toddlers her own age. Doing those surveys (I eventually cancelled receiving them), it made me sad. The differences were large and noticeable.

    But when she finally managed a pincer grasp, I gasped and shrieked. When she walked, I cried (and can still tell you the exact date of her first steps) (I can’t do this for Ezra). Every single milestone seems that much more incredible.

    • The hard earned milestones are definitely worth celebrating! Plus I look forward to milestones that we’re waiting on- something I never really did with the other kids. For instance, I cannot wait for Daniel to start waving hello/good bye or for him to start clapping for himself. Those things are just SO cute and I am SO excited for them to happen.

  7. I have to admit, I’m one of the people who thinks, “He doesn’t even seem delayed!” But when you post the list of things he can’t do I think, “Oh right, I forgot about that, and that, and that, that most 1 year olds do.” Interesting. He’s not behind in cuteness!

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