Wednesday, August 21, 2013
Monday, January 28, 2013
Natasha (left) has a shrug on backwards over her shirt with pajama shorts where she has stepped through only one leg. Its a little hard to see through the apron that completes her outfit. Abigail (right) is wearing an old slip over her pajama bottoms, her older brother's socks, and a shrug that is only half-way inside out. It's a lot less funny when you see the bedroom when they are done dressing themselves!
Sunday, January 27, 2013
Monday, January 21, 2013
Tuesday, October 9, 2012
We are still not on oxygen!! This is exciting as Abigail has struggled so much in the past with her lungs due to a bout of RSV when she was only 8 months old. The down side is that her immunity is diminishing so she could take a turn for the worse at any time. She wouldn't eat this morning, but I'm hoping I just ordered the wrong thing.
It's been hard to adjust to a new hospital and all the policies and rules that come with any new change. Some things I totally hate, but others make a lot of sense. I just hate feeling like a rookie at this stage of the game. On the 22nd of this month a new children's hospital will open here in Orlando and then we will go there instead. Crazy that it will be almost an hour away but we are anxious to see it. Especially after what I've seen here. There are advantages in living so close to magic kingdom. I know the picture quality stinks, but I thought I would upload these photos anyway. I was so impressed with this castle and beanstock room in the hospital, I had to share. Plus, Abigail is asleep so I am trying to find something quiet to keep me busy;)
Monday, October 8, 2012
As they accessed her port (stick a big needle through her skin) this time with her screaming and saying "no more!", I thought to myself, "don't they have enough strikes against them? Do they really need this extra suffering on top of everything else?" It is hard to watch them go through this month after month and realize they still have a long road to slog down. I know we need to be positive about things but, sometimes it is just too much for too long. Yet as much as I wish and pray for it to be different, we are helpless to take this away from them. We must go through it with them. I have wondered about the purpose of suffering in our lives. It is awful to go through or watch. In the past my first reaction when seeing someone suffer was to look away, try to ignore it, or somehow try not to think about. Now when I hear about someone's tough situation or see them go through something difficult, my heart goes out to them and I want to run and help but, many times I find myself unable to help because of my current limitations/situation. And so, I feel helpless but, in a way, I know what they are going through. There are many out there that may appear to have it easy or that things are not too hard for them. I don't believe that it is easy for anyone. Through the things which I have suffered, I have tried to become more accepting and patient of people's "bad days" because I don't how deep some of their struggles really are and I don't want to be the person that adds more weight to their heavy burden.
Sorry, for the side bar....back to Abigail - I stayed with her last night and Kim is taking the shift tonight. Abigail's culture came back that she has RSV, which scares me. The last time the twinnies had it, their lungs partially collapsed and they required heavy intervention at the hospital. They have permanent scaring from that run in with it. We pray that she will get better soon and be able to come home.
We feel blessed that our family has the health that it does. We were brought back to reality yesterday by the story of a family that has had a sad turn of events. The family had been getting chemo for their 10 or 11 year old son and then just recently had to start treatment up again when the cancer came roaring back. The 11 year old was going through a rough patch when the mom, from dealing with the stress of everything her son was going through had a heart attack and died. The father decided to keep it from his son (he had two other kids - one had died when she was younger and the other child is fine.) until the son was through this tough part in his treatment. The doctors ran some tests over the next couple of days and realized that the son's cancer was terminal and that he didn't have much time to live. The father, after just losing his wife a few days earlier, sat down with the son and told him that mom would be waiting for him on the other side and that he didn't have much time to go.....I don't personally know the family but, my heart goes out to them. What a difficult situation to go through. I hope my girls make it, though I don't if they will. I pray for peace to be with that family - they need it! There is much to be grateful for!
Friday, August 31, 2012
Anyway, they were both extremely excited about school. They want to be like their older siblings when they head off to school in the morning. They are supposed to take the bus everyday but, it has not come yet. The school said it will take a little time to get them on the schedule. In the meantime, they wait every morning to go to school and call out for the bus to come get them.