another visit to Boston

Today Vivienne met with the geneticist at Boston Children’s.

Again.

Not a whole lot was learned, though. Other than confirming that our girl is growing, along her own sweet little curve, and her legs actually look quite, well… normal.

WOOT!

And that, because of the discrepancy between her relatively normal legs, and her not-so-normal arms, our girl is quite possibly one of a kind.

So much so, that they are going to have an expert in skeletal dysplaysia contact us, to learn more about her.

She truly seems to be a conundrum to all the specialists that she has yet to meet.

We think she’s pretty awesome, too.

The downside of the day was that not only did they try to draw some blood, but they had no success.

The battle ended with no blood,

and one very upset little girl.

But we’re working hard to help her get over it.

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Comments

  1. Poor baby girl. That poking stuff stinks. :( She is a precious gem! :)

  2. My oldest was terrified of needles and then we discovered a spray that numbs the skin and he doesn't even feel it. You might ask your Dr. to order it for you for next time. It has saved us a lot lately with Jack's surgery.

  3. Such a bummer when that happens with the blood draws. That happened to Summer after her heart surgery…when she was already terrified of any medical personnel…it was very tramatic.

  4. Sweet dolly, drawing blood from a child is certainly a frightening experience. When our daughter had blood drawn she screamed hysterically and after what seemed like close to 20 vials I had to tell them to stop.

    She looks like she's doing better though.

  5. I'm very curious to hear what the other dr. thinks about her legs and arms not really following the same path. That's really interesting. Good luck with all of it!

  6. China Dreams says:

    Sounds strangely familiar. Our first daughter had a leg growth problem and when she had orthopaedic surgery at 13, the doc told us that she was missing a vein in her leg! They used to pepper that child's feet with needles trying to get blood from her, to no avail. I think she's missing some blood vessels in other places, too, but decided against any exploratory surgery to find out :-)

    Ruby

  7. clearness says:

    dysplaysia …..my son has sphenoid wing dysplasia…which basically means the bones behind his eye is messed up. Might need surgery one day but right now…it's a wait and see…..

  8. Oh man…I so dread those blood draws on tiny veins. And then after all that to get no blood…ugh. BTDT. Hope you get some answers about her arms. She is such a cutie-pie!

  9. Stefanie, when Lizzie went for an all day endo test, they used a numbing patch for her blood draw and it worked great!!!! I have a feeling your sweet Vivi will keep those doctors hopping and make them earn their keep!!! LOL!

  10. What a sweetie! Better luck next time on the blood draw, I am not looking forward to our first visit to the doctor, yikes.

  11. Poor little sweetie having to get her blood drawn. Sometimes I think it's worse for the mom to have to watch or even participate . I hope she got over it now!

  12. Vivi looks pretty comfy in that photo…like she's recovered quite well from her little blood test trauma. Josie hates shots and blood tests soooo much that she freaks out completely when she even sees the long silver thermometer come at her at every visit; she's sure it is another enormous needle.

    Glad to hear that Vivi's legs look good and that she is growing well! She sure is a beautiful child…she glows!

  13. Kolton's Mama says:

    Getting blood drawn is no fun and hard to watch your child go through a bit of pain. When kolton was born we got sick of the doctors constantly poking him. And his first shots I cried more then he did.

    I hope you het some answers for your little one she certainly looks like a very beautiful and special girl!

  14. Blood draws are one of the worst forms of torture. I'm so sorry that sweet Vivi had to endure it.
    Praying for you all as you await further diagnosis.

  15. Such a sweet, sweet baby!

  16. Nicole A. says:

    One of a kind – not a bad thing, I think! What a sweet girlie!

    We have had great luck with ice packs (nothing fancy, regular old ice) for numbing the area for both blood draws and shots. Of course, the cold can make the veins a little harder to find, but the numbing of the area has worked wonders for our kids!

    Have a great week!

    All the best,
    Nicole A., now in LA

  17. All the poking well and truely sucks – but – she's looking no worse for the wear! "…we think she's awesome too" – well said dear lady – well said!

    hugs – aus and co.

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