Monday, December 14, 2009

The Grind


I love spending 2 and a half hours with my baby, except when those 2 and a half hours are from 2-4:30 in the morning. Such was the start to the week. Riding the caffeine wave long and hard today.

The Good:

Bella, Ali, mommy, and daddy rode "Small World" ride at Disneyland last night! It was Bella's first ride! Her eyes were HUGE! It was really cute. We had a really good time last night. Ali has been really good with her manners of late and was rewarded with a long overdo trip to D-Land.

Regional Center brought a Physical Therapist out on Thursday to do an eval on Bella to see if she is at-risk and eligible for services. Turns out she is. I put it in the good column, because now she will get weekly PT to help get her the physical development she needs and is avoiding due to her leg and G-Tube button.

Despite it all, Bella continues to smile, laugh, and be mostly joyful (especially when medicated).

The Bad:

Bella's foot. 'nuff said. The knee isn't much better. They go through cycles. We had quite a run where the foot was good, and it was just the knee giving us trouble. Now it's both. By the end of last week, the skin had sloughed off the foot completely and it looked pretty much the way it did the day she was born. That was frustrating. The skin just won't "stick" on the foot and knee - where it was missing at birth.

Bella is going through a period where our normal late night soothing techniques are no longer working. Having to hold your infant gently down in her crib while she tires herself out from screaming so she doesn't further injure herself is NOT FUN. Holding her in our arms is just more dangerous when she struggles and harder to protect limbs and head during her screaming fits. In addition to being freakishly big, she is freakishly STRONG as well, and when she writhes in our arms, the possibility of her skin shearing against our body is very scary.

Plus, when she spits her binky into her crib, it's easier to retrieve than when she spits it onto the ground. Never overlook the small stuff, right? :)

We are booked for Minneapolis Jan 6-8 to consult with Dr. Wagner at U of M. We will know a lot more about 2010 after that trip. Now, we just need to convince the new insurance company it is in their best interest if we decide it's in Bella's. Another battle for another day.


  1. that picture is fantastic..
    what an amazing little person she is becoming :)

  2. That is the most adorable picture in the world Tim and fam!!! :)

  3. Look at Bella sitting up!
    She is so beautiful.
    PT is good.
    Sorry about that leg and knee. I continue to hope and pray that Dr. Wagner and hold out some hope/help.
    Love to all,