Here are some pictures we didn't have time to post yesterday. We were having too much fun being together.
Just enjoying her room for the last time
one of many loads
Empty spaces can be so fun
Having everyone under one roof has been wonderful. I feel such a relief knowing that all my energy can be spent in one place, I don't have to wonder what is going on at the hospital or at home at the same time. It still has not sunk in yet for me. I guess after 80 plus days in the hospital I will have to remind myself that we are stationary now-and together.
We were so excited to take Alice home. We will miss many things about the hospital. We have become so comfortable there and will truly miss all the people who we have come to know so well. It is a wonderful place.
Many visits in clinic yet to come...possible short stays in the future, hopefully not.
Last night after we had dinner and settled down for a second, we had a couple hours before the nurse came to the house to sort out all Alice's meds. We let the kids just gather around Alice on the floor and adore her. She was laughing at everything, soon we all were laughing. It felt strange to look around and count five children in one spot. I remember looking at Tyler across the way on the opposite couch and thinking to myself...this is Heaven. It was a peaceful happy feeling, until of course nobody could agree on the same game to play, and that peaceful heavenly feeling sort of slipped away ;)...well it was still lovely, just louder.
Three hours after the nurse came we finally had everything organized. Alice has almost double the amount of medications as Natalie. It will be a circus around here keeping track of the medications and infusions. We need at least a dozen timers to keep us on track. Each week maybe we will drop a medication and eventually we will have a bit more freedom.
Matthew had been planning a giant family slumber/movie party to celebrate Alice's return. To say the least it was a very sleepless night for everyone. Between three medication pumps running, Evie wanting to teeth all night, and everyone thinking they had to use the bathroom every hour, just didn't amount to much rest. We will always remember it though, and be reminded not to have another giant sleepover until everyone is at least 10 years old! And best of all Alice woke as usually at 4:00 am requesting the Backyardigans. However, as terrible as that sounds it's not so bad, because she is content to watch it with no volume. It made sleeping more feasible for the rest of us.
Alice has eaten better since she came home, she still crawls everywhere. It seems so strange to see her crawl. It won't be long before she is walking again.
Most of the pictures below are from yesterday.
A well anticipated bowl of cereal
A welcome home hug from Matthew
Happy to be home
Just a portion of our pharmacy chaos
What? Watching another movie!