Wednesday, September 22, 2010

The Questions: Part 2


Sweet baby Lamp

Today's questions come from Chelsea, Mojo and Likely:    

Chelsea:  How has Beanie responded to having a sister with special needs? How did you explain to her before the birth what Lamp would be like?

Mojo:  How has development been coming along outside the physical limitations?

Likely:  Here is a real question I have been wondering about Lamp --- how are her legs? I know you were unsure about them in the womb, just wondering if they are moving well for her.


Good questions.  First, regarding Beanie.   It was a slow process...and little by little she started to get the picture.  As you can probably understand there's only so much a 3 year old can grasp.  We waited to tell her about Lamp until we had as much information as we knew we were going to get.  Then we started by talking about bodies during Family Home Evening.  We talked about how some peoples' bodies work and look differently than other peoples' bodies.  We proceeded to tell her that Lamp would have a different body than her and we described some of the limbs.  The thing that seemed to stick with her the most was that Lamp would have a missing arm.  After our first conversation she was more or less unaffected and was like,  OK.  So do you wanna play princesses with me?  And that was that.  As we had more conversations about Lamp and bodies she had different reactions.  At the beginning she seemed OK with it all.  And then one day, I'll never forget, we were driving around and she said Mom, I'm going to find Lamp's missing arm.  B and I looked at each other and just about melted.  In her mind it was a no-brainer solution.  But it also let us know it was bothering her a little.  And one day she said, I don't want Lamp to have a missing arm.  And we'd let her know it was OK to be sad and we would just talk to her about it and how we were going to love Lamp no matter what, etc.  And I'm really not sure in what way it bothered her that Lamp was going to have a missing arm.  I don't know if she felt bad for Lamp, or simply didn't want to have a sister that was going to be different.  Overall though, it didn't really seem to bother her.  The times that she would talk about not wanting Lamp's arm to be missing were few and far between.  But when she finally got to meet her little sister, it was almost a holy experience.  I don't think I've ever seen Beanie act the way she did.  She was glowing and there was a blissful but reverent manner about her when she got to hold her baby sister for the first time.  It brought tears to our eyes.  That was a great moment.  And pretty much ever since Lamp was born Beanie has just loved her and has hardly mentioned her limbs at all.  I'm sure they'll be many more conversations about Lamp's body and I'm sure Beanie will have various feelings on the subject as she gets older, but for now she's just in love with her baby sister.     

As for Lamp's development outside of her limbs, she's doing great.  She seems to be on track.  She smiles a lot and she loves to talk.  She loves to have conversations with me in her little baby way.  Since Beanie was not like this at all, I find it absolutely amazing.  I coo at her, and she coo's back.  And we'll do that for a long time.  She has pretty good head strength, but lifting her head at tummy time is different... since she doesn't have the limbs to help weigh her down and stabilize her, her little legs often go in the air while her head is on the ground.  It's pretty cute.  But she does her best to wiggle around and make the most of the dreaded tummy time.    

And this sorta begs the question of what are her legs like?  I think I mentioned before that all 4 of her limbs are affected and they're all doing something different--which is what makes her condition so rare and so hard to diagnosis (there is no diagnosis at this point FYI).  So her legs...as you can see in the picture above they've got their own things going on.  Both legs have extremely short femurs (thigh bones).  The left leg is normal from the knee down with a normal foot.  The bottom portion of the right leg is also shorted, with only one bone in the lower portion (instead of 2) which causes her foot to flip up to one side...and that cute little foot only has 4 toes.  Although the foot sort of flips out to one side, it can be moved to a normal position without causing her any pain.  So she's actually going to be fitted for a brace soon that will help keep her foot at a downward position which will allow her to wear shoes and hopefully assist her ability to walk.  The doctors are sure she'll figure out a way to walk, but since her legs are different lengths she'll probably need to have special shoes with a thick sole on the shorter leg.  I have to say, B and I have had our concerns about her walking since her femurs are so, so short.  In fact in the beginning it was hard to tell her knee's from her hip bones...but again, the doctors have been very positive about the probability of her walking, so that's good.  There are also possibilities of fitting her with a prosthetic leg or the use of a wheelchair.  There is also the possibility of surgeries on both the upper and lower limbs to help assist in functionality.  However, these are all things that are on a wait and see basis.  Depending on what she does and figures out on her own, that will point us in the direction of what sort of additional help/therapy/surgery etc. that she may have.  So there she is...pretty much the cutest baby on earth.  

Thanks again for the great questions!  

  

11 comments:

  1. Thanks for answering our questions. She is so stinking cute, and you can tell she is going to be an inquisitive one!

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  2. Wow, the answer to number one was just so sweet. I'm definitely teary now. She IS the cutest little thing. It will probably be interesting to watch her grow and figure things out on her own. She sounds like she's going to be one smart little lady.

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  3. Thanks for answering questions - I pray for your sweet family often! And you're right - she is pretty dang cute!

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  4. Oh my gosh she is so CUTE! Fun to hear the answers to these questions.

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  5. Beanie made me teary.

    I'm so happy to see the whole Lamp, she's so beautiful! I'm excited that she has so many options, what a great time to be born.

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  6. Oh gosh, I cannot wait to squeeze and kiss some little Lampy limbs. And I am super excited to see that sweet Beanie princess too! And you and B of course! :)

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  7. Oh man! She sounds very aware of you and her surroundings. Sounds smart. Thank you.

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  8. This picture is magic. The look on her little face is so sweet and so familiar- she reminds me of Lucie in it- so inquisitive and dear. I love that our girls are the same age- My sister is still in Ohio and one of these days we'll make it out there and we'll tag on a visit to your place so our girls can meet. We need to set up a long distance friendship between them! NYC misses you guys.

    xo

    p.s. I am loving these questions. As always, I feel so touched and inspired by your words. Thank you for your example and friendship- I'm in constant awe.

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  9. i'm new to this blog-saw your interviews on Reagan's Blob. I have to say that if it wasn't against the law and wouldn't cause any health issues i'd kidnap that Pip-now it looks as if i might have to have Lamb so they won't be alone!

    limbs aside-if that girl is talking already look out! from a mom who raised 4 perfectly healthy girls (and one prince which allowed us all to breathe since the kingdom was safe!) constant talking is the Worst!

    what a lucky girl to have been born into your family-and what a lucky family

    i wish you all the best

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  10. Marti McDowell1:48 AM

    My 16 year old son was sitting on the couch by me, glanced at my laptop as I was reading this post, and said, "Whacha lookin' at?" I showed him the photo of Lamp, and he said, " 'He' (a natural assumption for a teenage boy) looks happy".

    That's what he saw in Lovely Lamp, and that's what will make people radiate to her :)

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