Sunday, July 31, 2011

Ember update

Ember is doing very well. She is happy and enjoying any attention she gets - except from Sienna - she is still unsure of her motives! Ember has an appointment on Monday Aug. 8 at Shriner's Children's Hospital in Philadelphia. From what I hear that is THE place to take her for arthrogryposis. I am looking forward to hearing what they say about her and future treatments. She wants so badly to be able to do the things Sienna does. It is sad to see her frustrated because she can't make her arms work the way she wants. We have been trying to draw blood from her for various tests since we don't have any health history on her. I took her to 2 different hospital labs last week and after being poked countless times and looked at by "so and so who can find ANY vein.." we are headed to the Children's hospital in the morning. She will be anaesthetised and they will use an ultrasound to help find a vein if needed. She has NO visible veins - common with her condition. Poor girl. I know tomorrow will not be a good day for her. Plus she can not have food after midnight and I know she'll not be happy about that fact in the morning. I have attached a couple of videos - this first one shows how Ember plays - if you can't use your hands to play, you use your face! She pushes toys around with her face, turns book pages with her face, points to what she wants with her nose, etc. Where there is a will, there's a way.
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10 comments:

  1. Haha, I love the "Cold War Tension" picture, that is just too cute! Your girls are just beautiful :)

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  2. I laughed so hard at the cold war tension pic!! Seriously it made my day....I'm still giggling!

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  3. Ember is just beautiful. Amazing how she copes with her immobility by using different body parts. Gotta love the "Cold War Tension" :)

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  4. I've been reading your blog.. my son also has AMC and oddly enough he is also missing toes on his left foot as well :)..he's three now and walking.. I have enjoyed your blog and I have to say I loved the post on the foot sucking gave me a chuckle and was just so cute and sweet..

    Kristin

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  5. Some of the bloodwork can be taken through a heel stick. She probably doesn't have really big fingers, so you will have to be prepared to fight, sometimes, because most places have some sort of rule that heelsticks can't be done after a year old. but that's a rule that doesn't take into account individual differences, and you have to point that out. Also, a lot of labs that we were told could NOT be done through heel (or finger) stick actually could, but we had to be the ones to find that out for sure. We were always told that it "couldn't," simply because venous sticks are easier (for THEM). we were lucky because my daughter didn't feel heel sticks, but even if she had, I would have still preferred them, because I felt we needed to preserve whatever veins she might have for any IV's in the future - for surgery or hospitalizations. You know? Also, even if a child is no longer an infant, if there is a way to get an IV in the scalp, it's isn't harmful ... as a nurse, I actually love a scalp IV, but most parents don't. :) But with them, it's easy to see the site and tell if there are any problems. I'm talking in an emergency situation, for you, of course, but if they are saying there is no IV site and she is dehydrated or something ... don't forget to tell them to look at her scalp, and if the nurses don't happen to feel comfortable with a scalp IV, ask if anyone else is. Sometimes NICU nurses can come to the ER and help, or some of the braver pediatric nurses. Just because God made her limbs specially, doesn't mean there aren't lots of other options, but sadly, you'll have to fight sometimes to get people to think outside the box. She is beautiful, by the way. I know you are happy to have her, and her sister is so loveable; what great playmates they will be.

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  6. Sienna looks like pure sunshine .... never a dull moment with her, I'm sure. I love seeing them together. Couldn't get the videos to come up... would love to see her "in action". Give hugs for me... praying about Monday's trip... as well as for her blood draw. Love the picture too!! Too funny! Hugs, Grace

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  7. Oh, and ask someone to check with the lab about the minimum possible amount to get of blood for each test. Often people see 2 tests and get 2 large vials ... when they might only need 1/2 a ml of blood for each test, meaning they could use the tiny "microtainers" they use for newborns. And if you get one answer and aren't happy with it, don't be afraid to go visit the hospital lab yourself, sometime, to ask a helpful worker to look up each of the tests to see the absolute minimum needed. It's a frustrating thing ... at our local hospital, a caffeine level (that we used to get a LOT) took only a ml or so of blood and easily it could be gotten with a heel stick, in addition to any other routine work. But when we went to the larger children's hospital, that caffeine level was a send-out, meaning they didn't do it in-house ... and the minimum requirement was huge (10 ml, maybe??) So you will learn to let the fights you can't win go, but any that you CAN win, like using a lab that is willing to go with a smaller volume that can be gotten from a heel or finger stick is worth fighting. Oh, and I forgot to mention that one reason to fight for heelsticks is that she doesn't walk on her feet, so the skin on her heels should be softer, like a baby's heel skin. If the heel is warmed sufficiently, and we'd do that ourselves right away to increase the chance of success, it should be fine. At least they can try there first each time. Ask for someone who isn't "afraid" to do a heel stick. :) Or ask if someone at the local pedi unit can collect it for you, and then you bring the blood to the hospital lab. I'm sure God has some angels waiting around there just to help Ember with that stressful part of medical care. People who WILL think outside the box.

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  8. I think of you often and hope everything is going well! Your girls are so gorgeous and I too love the Cold War pic - too funny!

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  9. Remembering to pray for you all today .... praying for God's protection, the doctor's wisdom, Ember's cooperation,... and your peace of heart. Hugs, Grace

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  10. Cant wait to hear how your visit to the Shriners Hospital went.. I love whoever is posting about the needle sticks! Sounds like great advice! I know you will find a way around the obstacles! The videos are precious!
    Becky and Family

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