Friday, February 26, 2010

Another Week (I'm at a loss for an exciting title!)

I don't know if I've mentioned it or not but Amber LOVES bath time now :) She tries to swim away from us and is all smiles! She only cries when we take her out now, it's so cute! 
"what do you mean I don't see well!" ~ yes it was surprising to all of us....I guess this explains why she makes lovey eyes, smiles and talks to lamps :)
Thursday was Amber's eye appointment. Her eye Dr was great and she did really well through the whole thing. The good news is she does not have any of the eye problems that are linked to Beals or Marfan syndrome! I think it will officially rule out both of the syndromes for her. This does mean we're back to square one. What they did find out is she's extremely farsighted. I guess all babies are borne somewhat farsighted and as they grow the eye elongates and they grow out of being farsighted. This could happen with her it might take longer because she is such a slow grower. The Dr made it sound like she'll probably have to have glasses (that will be interesting) I guess we'll find out when we go back in 4 months.

Holding her own bottle!!
This is from Valentine's day! She is starting to do a really good job of holding her own bottle, with no help from us or a burp cloth! You can see from the picture she still keeps that left hand in a fist but she'll open the right to hold it. She can open the left now! Not all the way but enough that she can grab and let go of her toys without us opening her hand for her! She still holds her thumbs in but she's been holding them out and using them more! This is AMAZING and after only 2 weeks of the splints!!

"mom I can't move my legs!"
She has a size 1-2 diaper on :) it funny to think that most babies her age are already in this size or bigger! It's almost time to move her out of newborn size diapers :( The size 1's are still big on her but the newborns are definitely starting to get to snug. Its such a bittersweet thing. I'm so happy she's getting bigger but I love her being so tiny!!

Our baby bunny
I'm not too sure if she liked this or not but I could resist snapping a shot of her in bunny ears! We had so much fun walking around the craft store the other day looking at all the pretty things. (she is easily distracted just like her mother!)
Unfortunately I don't have a good caption for this picture. Her face just cracks me up! I think she was very interested in her hands and didn't want her picture taken. The hubby says she's being "gangster"....I don't know. But she's got her boots on and she's already to go play in the snow! I guess you could say she's upset because I won't let her. Wednesday we got a ton of snow, it was up over my knees! Thursday we got a ton of rain, so most of the snow melted...and ended up in our cellar. And today we've had snow flurries and we've been told we won't see the sun till Tuesday. How sad. Amber and I are ready for some sun and warm weather so we can go play outside!!

I can hardly remember these days
(no I am NOT pining for a tiny one again!) I love to look back and see how far she's come! Yes she is small for her age but look how big she's now! Someone recently said to me "why would God give such a small problematic baby to young, first time parents it doesn't seem fair shouldn't those babies go to older parents who've had other babies?" My answer; because all we know is how to deal with a small baby, we have nothing to compare her too so she seems easy. I was never overly concerned about her until I found out it wasn't "normal" to have a baby like ours. God gives you what He knows you can handle. I think that's pretty great :)
I would also like to say Thank You! For the supportive comments and a much needed sermon and bible study lesson. I'm now back on track (more like refreshed) to where I need to be spiritually to take care of Amber and help her with the journey He has for her.

By the way next week we'll be seeing the geneticist on Tuesday and the endocrinologist on Friday.


  1. Thank you for the update Skye..its great to rad your blog, then I dont have to bug you all the time for details!! The pictures are so precious to me, especially to see her holding a bottle! Way to go Amber! God is good, and the splints are working!
    I miss you all very much. It has been only about a month since you have been here, but it seems so long between visits.
    Whisper in sweet Amber's ear and tell her how very much Gramma loves her and misses her!
    Love you all!
    Mom A

  2. So happy to see the splints working, so glad to hear that you are back on track as well. You are so right this is your normal and I think you have done a good job.



  3. I love your reply to what someone recently said to you :) LOVE IT.

    and those bunny ears... How cute is that?! She should wear those the day we perform Arkeology :) I think one or two other moms might dress up their babies as baby animals too :) Imagine the potential kodak moments!

  4. Has anyone suggested Kabuki Syndrome? Some symptoms do involve slow growth w/feeding problems, hypotonic mobility, heart, eye, muscle/skeletal.

  5. what a great entry to read! I can't believe Amber is holding her own bottle!