Thursday, August 6, 2015

Finding Our Normal

It has been a few weeks since we've updated the blog so I thought I would give our loyal blog followers a brief update on Miss Emma.  First and foremost, Emma is really enjoying being at home. It does our hearts good to see the joy on her face from doing normal run-of-the-mill activities that she has missed so much in the past seven months.   

Emma has officially started physical therapy, occupational therapy, and speech therapy.  She has thoroughly enjoyed getting to see each of her therapist that she is not been able to see in a long time. She is working very hard for each one of the ladies and they are very impressed with the progress they are already seeing. As we all know, Emma is constantly surprising us with her ability to reach beyond the limits that so many medical professionals put on her early on in life.  

Physical Therapy: 
The physical therapist is working with Emma to increase her stamina post op. She is also working on getting Emma to learn how to do transitions to get herself up and out of bed.  Once her stamina improves for standing. We will begin working with Emma in her kid walk to get her to use to the walker in order to maneuver herself downstairs. Pic of Emma standing at window looking for flying pigs: 🐷

Occupational Therapy:
The occupational therapist has been working primarily to get Emma to be not so sensitive to certain textures. After all the hospital stays and surgery Emma is having a difficult time handling different textures.  Her sensory issues have progressively worsened;however, we have all been pleasantly surprised with her willingness to try new textures at home.   So, this picture of Emma touching sand is a HUGE deal:

Speech Therapy:
In speech, we are working on teaching Emma how to use an augmentative device on an iPad to help further her communication needs.  We are starting very basic, but she seems to be picking up on how to ask for things that she wants.  You see, Emma has a huge understanding of the world around her, but cannot express her needs...imagine how frustrating that is for her.  We are hoping this will open doors for her in the communication department.  I don't have a picture of her using this, but she is always communicating through signs and drawings.  She drew a picture for her friend Smith. 

Medical Update:
Emma is still struggling quite a bit with fluid balance issues. We are getting labs at least twice a week to monitor her fluid balance. In true Emma fashion, when she looked her best, her numbers were not good. We had to back way off of her diuretics and increase her feeds in order to make her kidneys happier; however, this did not help her abdominal ascites at all. So, here we go again...increase diuretics and check labs on Friday. We know this will be an ongoing battle....but at least we're home.  Her last echo was stable so we continue day at a time.  

Overall, we are loving the process of finding our normal again.  We have found a couple of wonderful nurses who are helping us get back into a routine conducive of our crazy individual schedules.  

God is good!  All the time!  God is good! God's goodness is not dependent on how smooth or fair our lives are.  God is faithful....even during the storms...he is waiting....waiting on us to choose to either turn our backs or trust in his plan.  Scott and I are choosing to trust...even when it is hard.   

Once again, we can't thank you enough for the prayers, cards, encouragement, love, and support you all have shown us in so many ways.