Home Sweet Home

Sorry about the cliche post title, but I just had to do it.  Yes, we are home!  We arrived home yesterday morning after our very first ambulance ride.  Luckily, the lights did not need to be on for the trip.

Samantha is very, VERY excited to be home.  She has been moving around more than she has in months (even pre-hospital admission). So far, she seems to be handling the nursing situation ok. Strangely, the home nurses are doing more than we were letting the CHOP nurses do (meds/feeds etc).  Val and I really wanted to make sure we were able to do everything relating to Samantha's care before we were discharged, and so we did the majority of her care towards the end of our stay.  But, within the last day or so we've had to organize a hospital's worth of supplies in our house and also unpack three months worth of things that we accumulated at the hospital.  Needless to say, we have been busy.  Really busy.  I am so grateful when I hear the nurse say, "Oh, it's six o'clock, time for her feed. I'll get it."  In addition, Val and I were able to take a trip to Target (to buy things to store all of Sam's supplies) all by ourselves today.

Now that we are home, we need to start packing. We were able to sell our house and will be buying a one floor condo in the city.  We will be moving mid-June, so we have lots to do between now and then. We are all very happy that we will be so close to Val's work, family, and CHOP.

I know my recent posts have been brief, but as I mentioned earlier we have been oh so busy, but I did want to update and let everyone know we were home.  Thank you so much for all of your kind words, support and prayers.  We are also very grateful to the Progressive Care Unit at CHOP who were so amazing with our sweetie.  

Until next time,

Monica