A little fresh air

Such a blessing! I took our little pickle on a walk around the grounds today(sounds more like a resort than a hospital!). It was so wonderful to be outside again. The wind was blowing making it a "blustery day" like a page right out of a Pooh story book. The leaves were swirling around our feet. Ashley loved it. We spent about 30 minutes outside and tried our best to capture a few fall photographs. It was a little heart wrenching to watch the men in the garden as they hung Christmas lights all around us. I had to dodge the giant gold snowflakes that were leaned up against all the trees, but I think I managed to keep them out of some of the pictures.

When we first left our room in the stroller she began to cry. Especially as we approached the elevators. She thought we were on our way to a biopsy. It broke my heart, but once we made it to the outside world she was so content as the wind blew her little ponytails around. I love that she finally has enough hair for the wind to blow it into her eyes! She refused to make eye contact with me but, I am still pleased with the photographs. The colors of her clothes really seemed to pop next to the flowers. I'm so thankful we went out today. They are predicting snow flurries by Friday. To a Texan that just sounds so crazy!!! Thankfully I've been here a time or two and have figured out how to pack.

So many of you asked questions about the room and how we managed to get all of this stuff here with us. Well...I did not bring it all with us on the med flight. Most of it was picked up for us or sent to us. One of the biggest blessings that have come my way during our stays in Omaha are the friendships that have been formed with Ash's nurses. We truly have wonderful friends who love us and are far too generous to Ash and myself. They bring "prizes" to us(like our favorite smelling candles for us to sniff so we are reminded of home and our favorite lotions) all the time and are so willing to make Target runs for us. In addition to our nurses we have all of you who continue to bless our baby with mail and packages. Things that make our eyes sparkle. Gifts that are just "so Ashley" and I love that you know her so well. We are truly appreciative.

I generally pack three large duffel bags, my laptop, and her diaper bag when making the trip to Omaha. One of the bags contains nothing but her bedding and toys. Another is full of her clothes and hair accessories and the last bag is for me. My clothes are in it. Stuff like shampoo, soap, towels, bathroom rugs(yes, I have one in front of the shower so I don't have to step on the floors), air fresheners, those things are picked up by friends once we arrive. I try to always have pictures of the kids in my purse just in case we have to leave on a moments notice so those travel with me. The pumpkins you see sitting around were gifts from our friends once we arrived. The candles, the same. You already know the story of her rug and how we got it. The little cube chairs and table belong to the hospital, but we had recently discussed purchasing a set with our physical therapist for Ash to use at home(not that we have the room, but she needs them for therapy). We do have a private bathroom. That is such a BLESSING. Our original stay(6 months in the PICU and then another 4 last fall and 2 more at the beginning of this year) did not afford us the opportunity to have a bathroom. I had to use the one in the hall and shower in the public shower in the family room each morning. This trip our laundry is being taken home by one of our nurses. She has NO idea how much easier she has made this stay on us. I tell her everyday, but still don't know that she truly understands the blessing she is to me. Usually I have to do our laundry in the middle of the night while Ash sleeps and it takes me about 4 hours while I run back and forth across the campus, try to find an available and unlocked wash room in the hotel section, and wait for the loads to wash and dry. I would throw them in the wash, come back to Ash, go back to throw them in the dryer, come back to Ash, go back to pick them up, come back to Ash and fold them. It was an exhausting and expensive experience. This trip has been different. We do not have a car here and usually don't because these "stays" are never planned. I am dependant on the kindness of others to run errands for us and God has more than blessed us with wonderful friends in the area. Friends who stumbled across our blog in one way or another and have become cherished over the last two years. I love them and their willingness to be the hands and feet of God in our lives. Each visit to Omaha is a little easier as far as having the things to make us comfortable. We learn as we go and although I know it may not seem important to many people its the little extras that keep me sane. Like having my own towel to dry off with. It makes a world of difference. Ashley's personal sheets from her crib at home washed with yummy smelling softner as opposed to the stiff hospital sheets. I don't know how to survive this experience any other way.

Hospital life just stinks. It is hard and nothing like real living. We all have different ways of coping with it. I just do my best to make Ash feel normal in an "un normal" environment. It is so important to me that she be happy and comfortable during these times.

How do we get this stuff back home? I pack as much as I can, and mail or give away the rest. If I can be a blessing to someone else who is in a similar situation then I am more than happy to leave them any of the things that have blessed us.

Thank you for being here today. I don't know how we would have made it this far without your love, your encouragements, your prayers, and your supports. Your time here is precious to my heart and I love you guys. Goodnight, Trish