Wednesday, September 15, 2010

Throw Back Thursday

Did you know that on this day last year was Amber's last ultrasound. They did this ultrasound because my bump wasn't measuring the right size. This is when we found out she had stopped growing at some point and was developmentally a 34 week old baby instead of a 37 weeker. We had a faint idea (maybe a little before then) that something wasn't right with Amber. She never was a big kicker. By the way these pictures are from Amber's 20 week ultrasound when they made sure her anatomy was all right. During that ultrasound Amber never once opened her left hand, the one she never opened until she got splints at five months.

Her profile at 20 weeks and at birth. Pretty cool!

I'm at terms with everything that's going on with Amber. I'm sad with the obvious; her daily struggles and the uncertainty of her future but I'm not dwelling on these things. I'm not happy that no one ever mentioned the possibility of Amber having any issues. Even when they told me she wasn't growing properly they never hinted that it could be an actual problem. Based on the pediatricians reactions I find it hard to believe the tech did not see anything else that was not quite right about her at her last ultrasound, which was only two days before she was born. This only upsets me because I would have liked to have been able to prepare and maybe Amber would have had help/treatment sooner or we would be closer to finding things out.

Enough on that! I didn't mean to sound like a Debbie Downer! 
I am thanking God every day for her and thanking Him for everyday He gives us with her.
She really is a miracle; how far she's come and how well she's doing. I can't even begin to tell you how amazed every Dr is with her. Not only because she is so unique but the fact that she should have had a much harder year. 
At 6 weeks they found out she had extremely brittle bones. Shockingly she has never had one single broken bone. It is also very hard to get vitamin D levels up and hers shot up only a month after she started treatment for it. 
 Amber may not be as far along muscle tone wise as we were hoping she would be at this point. She has made leaps and bound though since her early days. Her head control is much better and she is really trying hard to lift her head when she is on her tummy. Even though she can't touch her toes she can really lift her legs now. The range of motion in her arms is so much better, we're almost there! Gone are my worries of whether or not she would ever be able to brush her hair! We are really starting to feel muscle working hard in her trunk these days and hoping that the chest expansion surgery will give her the boost she needs to start sitting on her own.
 It really is amazing how much she has grown and changed over the year.
Amber hands have responded so well to splints. She can now open both hands completely and has only a slight bend to her middle and ring finger on her left hand. She can hold toys and grab things like a champ all without the tendon release surgery they thought she was going to need.
Generally children with her shaped chest constantly have sever upper respiratory infections, spend months in hospitals and usually end up having a trach. Amber's first upper respiratory infection happened when she was 8 months old and now only requires very little oxygen assistance. 
Her eye sight is poor, her speech is delayed. She's still kind of skinny but gaining good weight. 
Her sleep skills are horrible they drive me insane. I think I was going somewhere with this but my brain crashed. Anyways I wouldn't change anything about her, she is so much fun and the greatest joy in my life!

I would like to thank all of you for all of your prayers and support for Amber this past year. A lot of you have been praying for her from the very, very, very beginning and we greatly appreciate it. There is no doubt in my mind she is doing so well today because of all of your prayers. 

Edit: This was supposed to be posted before midnight but it's been a rough night. Amber's unlucky day is September 15th, that's the day I'm talking about in the first section. 


  1. It's hard to believe Amber's gonna be a year old! Time flies! What an ecouraging post. I can't help but admire the positive perspective you choose to view it all through -- accepting what is & choosing to focus on what is good. No doubt Amber is doing as well as she is bc she's been faithfully wrapped in prayer - but I hafta think it also has much to do w/ the love you live out/she lives in, continually -- one of the most beautiful examples I've ever witnessed of the love spelled out in 1 Corinthians 13

    1 Cor 13:13 And now these three remain: faith, hope and love. But the greatest of these is love.

  2. Hard to believe a year has past! I remember having breakfast at the Ugly Omelet and getting your phone call that you needed an ultra sound and responding as I seem to do best - with tears. Last night was terrible and I'm amazed you had any brain left to post. God is loving and wise beyond our comprehension. When I chose your name, the meaning in the books was Fortress. It has fit you well from the very beginning and so appropriate for your role as Amber's mom. God knit Amber together perfectly for His purposes and gave her intentionally to you and Luke knowing you are the parents she needs and she is the child you need for His honor and glory.

  3. I am so proud of you and of Amber. I can't believe it has been a year already either. Its amazing what kids do to time.

  4. Skye,
    I love how you focused on the progress Amber has made during her first year instead of just the difficulties she has had! Too often, people seem to forget what children with disabilities CAN do and focus instead on what they cannot. I appreciate and embrace your perspective. You are doing an awesome job with Amber!! She is very lucky to have you. You, Luke and Amber are always in my thoughts. xoxo

  5. Skye, Your reflection on Amber's first year was done with such grace. You truly are experiencing the joys and struggles of mommyhood and doing such a great job. After almost 7 years, I still have to steer myself away from the thoughts of "if only" and "what if". I guess we just have to keep steering away and looking forward and trying to keep our heads on straight. You are a wonderful, loving, and strong mother to Amber. Love to you both! from your BF's mom :)

  6. Not much to add that others have said, You and Luke have handled everything very well.

    By the way I need a video date with Amber pretty soon

    Love DAD

  7. She has done so well! What a tough cookie, thanks for the recap in pictures. She is such a strong, beautiful little girl. You must be just bursting with pride! You're doing such a good job as a mommy too! Amber is just as lucky to have you, as you are to have her. Will keep thinking positive for all of you!