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!
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.
Here's my favorite picture of the tiny wonder so far! Tiny being her word for the day, at every appointment she measures a week behind but today/yesterday (its 1:48am!) she measured almost three weeks behind. They're not concerned yet, mainly because hubby and I are not very big people, but we will be starting our weekly appointments sooner to keep an eye on her. Of course whenever we have any worries about our little peanut it always makes me think of Psalm 139: 13-16. How He is creating her innermost being, He knows the day she will come and all of her days before she is even born! She is and will be exactly how He has purposed her to be so there is no need to worry He is in control of her tiny life.