Friday April 19, 2013

Now that's what I call progress, Ella eating her own foot

This week has been a great week for our little warrior. As many of you saw earlier in the week she really took to her bouncer. She continues to love being in the bouncer and it is so good for her development. We have even noticed that she seems to be managing her secretions much better as a result of the activity. While her swallow hasn't necessarily grown any stronger, she does overall appear to sounds less junky and her breathing doesn't seem to be as labored.

 This week also featured two more follow-up appointments with her medical team. Ariella was seen by her ear, nose and throat (ent) doctor as well as her neurologist. While both appointments went well and both doctors were impressed with her growth and development what is of particular note is the results of her neurology appointment. We met with the same doctor that gave us the initial diagnosis back in January that Ella was not going to survive much longer than a couple of days or weeks at most. This doctor is a brilliant man and we never bared any resentment for his diagnosis. This is also the same doctor that advocated on our behalf to get some of the baby's genetic testing covered. I mention all this because after watching the video of Ella jumping in her bouncer and seeing her roll around and sit up during the exam, he was left with no other option than to conclude; "she is clearly telling us that she does not have the most severe form of this disease". That is an exact quote. This is an amazing realization. Immediately Rachel jumped on it and asked him if he was willing to communicate that to the rest of Ella's team. This way we get everyone on the same page and we can stop thinking about her care in terms of survival and start thinking about more long term development and growth strategies. We praise Jesus for the great work He is doing in Ariella.

What if we showed this kind of compassion

What a powerful display of affection

Ella also got a special visit this week from her cousin Audriana. It was so cool to watch these two play together. Ella would not take her eyes off of Audi while she was awake and even when Ella was waking up from her afternoon nap and treatment, Audriana was there to greet her. It is so amazing to see Ella continue to progress. She really is a living miracle.

Also Ella wants to give her Grandmabuela a special Happy Birthday shout-out. Today is Grandmabuela's birthday and she came to spend the weekend with us. Thanks Buela, happy bday, we love you.

It's playtime for the cousins