Days 15-19: Home!

I have a feeling that the updates here will start to be weekly more than daily as we settle into our lives and try to balance again.   We drove home after PT on Wednesday - Ava did pretty well, actually.  I knew that stopping to use the bathroom would be a challenge, but I didn't anticipate quite how much TIME we would lose doing so.  I simply cannot get that wheelchair in and out of the car multiple times, and she really needed to stretch anyway - but parking and walking with her little walker all the way in a rest stop building and to the bathroom was tedious.  I never had occasion to wonder before, but WHY oh WHY are the handicap bathrooms at the BACK of every restroom???  Just further away for someone using assisted devices to have to get.  :/

We made it home, though and Ava has been doing pretty well.  We are still battling pin care and showers and re-application of sponges every day.  There is some scabbing and dead skin that needs to come off around the pin sites and she really fights me on that.  But I don't want there to be any chance of infection, so I feel like I need to get those things off.  She is sleeping pretty well and doesn't seem to have much pain during the day, so that is a good thing.

Up and down the stairs at home is tricky.  She does well, but it still just looks precarious and scary to me.  So we are trying to limit her to downstairs for the day and upstairs when it's bedtime.  But the shower is upstairs and she really needs to nap in the middle of the day, so it's more like twice a day.  Here is some video of the process.

We had our evaluation at CHKD PT the morning after we returned - bright and early at 7:30am (ugh!).  I really like the PT we met who will be doing land therapy 2x/week.  And we will have 1 day a week in the pool.  I feel like she should do more than 3x/week, but am going to go with it for now and then perhaps ask for more in a few weeks depending on what her numbers look like.

We had the first pool therapy on Friday and it was definitely different.  It's 1:1, which is awesome, so the therapist is 100% focused on Ava and watching when she's cheating.  LOL  The pool has a drop down floor, so Ava just walks on it and then it moves down and the water rushes in.  Very cool!

This weekend, Ryan's mom arrived to help take the burden off for the week of transition.  I have a lot of 'catch up' work to do with my photography business...clients waiting to see their images, clients waiting to get their prints/files, clients who have been waiting on me to get back to shoot their sessions, etc.  I feel totally 'out of it', but slowly making my way back to caring.  Not that I don't care about my clients, but when you are 100% focused on a child's every physical need like this, it is exhausting and leaves absolutely no room for anything else.  I thought I would have a few hours up there each day - or even every other day - to edit or something.  But I honestly did NOTHING the entire 2 weeks I was in Baltimore.  There just was not time.  The all-encompassing nature of this process is overwhelming. Thank God for my friends and all those who signed up to bring us meals.  It has been wonderful this week not to have to worry about getting to the grocery store and preparing dinner every night.  Thank you, thank you, thank you!