Tuesday, August 30, 2011

Oh Hi Blog!

So it's been quite a long long time since I've blogged. So long in fact that apparently blogger has changed it's layout. I've got a lot to re-learn and I'm hoping this post comes out alright. I've got a lot to fill you in on but thankfully it's pretty much all good news! I'll focus just on Amber in this one and then finally post a bunch of half posts that I've got, yes I really had no excuse for not blogging.
I left you all in June in a rather downer of a mood. Amber had been suffering from pneumonia pretty much non stop since Easter. She would be horribly sick for a week (usually less) before we could get her on an antibiotic. Then she would stay horribly sick for another week or two before finally getting over it. She would be off of her antibiotic for a week before she was sick all over again. We felt like the cycle would never end. Pneumonia is probably one of the worst things an I-cell baby could get and unfortunately usually how they go. Thankfully as of the beginning of July Amber has been pneumonia free and we're going on two months of her being off of an antibiotic! We're praying she can continue to stay healthy.

I'm also happy to say that not only is Amber staying healthy she is doing incredibly well right now. As of right now her Dr's are not seeing any significant progression in her lungs or heart. This is great news especially after all the work the pneumonia put them through. Her gum overgrowth has progressed some but it's still not affecting her day to day quality. Her cornea clouding is a little worse but not really affecting much and her eye sight has improved some!

Physically Amber is also doing really really well! She is starting to sit unsupported for very short periods of time! Last year Amber started rolling onto her tummy but not very easily or very much. She is now rolling on to stomach a lot and twice now she's rolled herself back onto her back! She has also been trying to reach far for things while on her tummy and she's starting to lift her butt up. I wouldn't be surprised if she figures out her own way of crawling soon. Her other new thing is when she's in her walker instead of pushing back with both feet at the same time she pushes back one foot at a time, like you would to walk forward but only to move backwards. I'm also excited to say that her gait trainer has been approved by insurance and has been ordered!!

Overall Amber has really been surprising us with new things and doing so well! She's even been sleeping through the night, of course since we started night nursing! We could not be happier and we're praying she can stay like this for as long as possible!


  1. Welcome back to blogland!! Wow - look at Amber...sitting up so confidently! - and sleeping thru the night?! Hooraay! She looks like she's in her most favorite place in the whole world in that last pic ;)

  2. Diane Landon's MommyAugust 31, 2011 at 9:56 AM

    Hi. I am happy to see you posting again. I am so glad that Amber is doing well. I have followed your blog since my pregnancy last year, when we discovered that our unborn baby had health issues. He is one now, and has a muscle disorder. He too is at risk for pneumonia complications. You have been an insiration to me as I learn to face the challenges of health issues of a precious baby.

  3. Missing you posting :(