I AM - from Oct 10, 2006

Today was the day...I am quite moody right now so I am going to let Daddy talk...
Today has been filled with highs and lows. It started this morning at 5:00, for Ginna and Grace, anyway. I was staying at a friends house because there wasn’t room for me at the hospital, so I got there around 6:15. Ginna and I were able to have some prayer time with our little one before everything began. The nurse came in and told us that our surgery time had been moved back an hour. :-( Not the words we were looking to hear. Grace was very hungry and not taking it anymore. With a deft rotation of paci, bear, and nursery rhyme machine we made it through. Both of our parents arrived and got to see Grace before they called us down. Ginna was able to carry Grace down to the waiting room and we sat with her until they were ready. They told us that if they were able to put her hips into their sockets without cutting her open, then the procedure would take about an hour. If they weren’t, it would add an hour and a half. We were given a pager and directed to the family waiting room upstairs.
About an hour into it we were paged and told to come down. They had been able to do a closed reduction, in other words, they were able to put her hips in without making an incision. They did make a small cut on her left side for a muscle biopsy. We are still trying to figure out why she is having seizures and hopefully this will help. While sitting in the recovery room I sent an email to some people letting them know about the success of everything...then, we left that room.
Grace has never been a crier. Sure she can make some noise, but never really does. She is most definitely not a screamer...that is what we used to think. When we got back to our room Grace could not quit screaming. The nurse said all kids were like that after anesthesia. Of course, Grace has been anesthetized a few times already and has never reacted like that. For Ginna and me it was very difficult to see her this way.
Around 4:15 the Doctor came in with his team to see how she was doing. He made the comment that going into the surgery he felt that there was no way he wouldn’t be doing an open reduction. From all of the information and tests he had seen he believed that the sockets would be blocked. Praise God they were not. If they had had to do an open reduction it would have meant incisions on both sides, much bigger ones too, and re-sculpting of the bones. Grace would have been in a lot more pain. However, God had cleared the way. The doctor said that we could go home that night because she seemed to be doing so well.
Around 4:30, Grace had her first seizure. 5:30, her second. These were not the small ones we had been seeing since a week or two before the surgery. These were the biggest we had seen since she went on the steroid shots and maybe the biggest ever. We called Dr T down in SA. He said to make sure the docs at the hospital knew she was having them and find out what drugs were used to put her under. Grace ended up having another one at 9:15, and we were not only asked to stay the night, they moved us to ICU. She did not have another one that night and in the morning the doctor said we were free to go. One of the great things about Scottish Rite is that they said we could stay as long as we needed . They were not forcing us out, just said we could go if we wanted...and boy did we want to go.
We left Wednesday morning and headed home. On the way Grace was pretty out of it, but we figured she was on seizure meds, pain killers, and an antihistamine, who wouldn’t be out of it? The problem was that she wasn’t eating. We called various doctors on our list and they were of a few opinions. What it eventually came down to was that if she did not have a wet diaper by 8:00 Wednesday evening we would have to take her to the hospital to be hooked up to an iv. To put a topper on all of this, she had two more seizures at 4:00 and 5:00.
Thankfully, she had a diaper before 8:00. Plus Scott came over and checked her and said that she did not look dehydrated. She still was not eating very much, but we were staying home. During the night she woke up each hour needing something. Ginna and I tuck turns giving her pain medicine, food, changing her diaper, etc...It was a long night. At 4:00, I was with her and she had another seizure. Definitely not as big as the others, but still there.
This morning (yes, I started writing this Tuesday morning, but got a little busy) we were able to see Dr. T first thing. He has changed her medicine and feels that we can control everything with less meds than we did the last time. We are praying that this will work and that we will begin to see her personality come back.
I titled this “I AM” because one thing I have learned over this situation and, truthfully, her entire life is that God is in control. Sure, there were things that have stretched Ginna and me to our ends. There are still things that are doing so. We are physically, emotionally, and spiritually exhausted. We continue to need your prayers for support, strength, patience, and endurance. Prayers that God would enable us to do all we can for her, even though we can’t do much. Prayers for healing for her body and mind. But what I have learned from this is that God is always with us and moving in our lives. To think that a few months ago doctors were saying that there was no way her hips wold go into their sockets without the major surgery and yet...To think that we were going to have to go to the hospital last night except that she had a wet diaper in time, even though she wasn’t eating or drinking near as much as she should be. I just see God moving in her life. All of the people that have prayed for her, all of the people that have heard something about the glory of God because of her is just amazing. I am somewhat tired right now and close to a babbling state, so this isn’t as eloquent as Grace is expecting. Just hear that God is great, even in these difficult days, God is great and everything we need, He is I AM.