I have been asked for more details as I said. We are also using this as a journal for Shannon. But there are so many things that happen, it is hard to record them all. And it is difficult to know just how much Shannon would want out there for everyone. Hopefully as she reads this someday and then reads your comments, she will understand.
So we are in the NTU. There Shannon has a private room and it has a couch/bed in it for one person to spend the night. Shannon is no longer in need of intensive care so the nurses come in to do their routines but not to sit and watch monitors and constantly be checking her. However, it is important that someone is always with her. So we work out our schedules so there is only one with her for the most part except when we change shifts. Because she always needs someone, the hospital has orders to give Shannon one on one attention when we leave the room for any reason and at night so we will sleep. I stayed with her the first 2 nights and it works so well. I am in the room so I am with her if she needs family but I can also sleep. Trying to be obedient to those who keep reminding us that we need to take care of ourselves, I have asked for the tech (the person who gives the one on one when we are gone) to be with Shannon from around 10:30 pm and 6:00 am and I go to the bed. Because of the sweet love of our ward, we have a care box that is filled with muffins, fruit, juices, etc and I usually eat from there for breakfast. I leave to go eat lunch and dinner but for me, I stay at the hospital to eat. So all of our needs are being meet. Primary Children's Hospital truly operates with the involvement and comfort of the family being in the best interest of the child. We feel very blessed and fortunate to be in that hospital!!
Its good to talk to people because they tell me what is missing in the blog. I wish it were my medical doctor son telling you some of these things but I will try and tell you what we are learning. This is in VERY simple language because that is how I can understand it! When a person has a traumatic brain injury, the pathways or connections that we establish as we grow from a baby on, are disrupted. Generally speaking, the severity of the injury will determine the number of pathways/connections that die, miracles notwithstanding. The types of pathways that die depend on where the injury occurred. Our brains are the most magnificent organ one can imagine. Part of the process of healing is to rebuild any pathways/connections that is possible to rebuild. Sometimes there is so much damage that it can't be done. Our pathways/connections are built upon one another and hence we see the different development stages in babies as they grow into adults. So Shannon's brain is rebuilding and reconnecting. The need for a firm foundation and not missing any steps is critical and that is why the therapists begin at such an elementary level. It will help the brain in rebuilding the pathways/connections and shoring up the foundation that is still in tact. Shannon is rebuilding her connections--it takes years for babies to build those connections. In TBIs, the brain used to know what to do and so the progression can go much faster but it still takes time. The connections that Shannon's brain still have are remarkable and are part of the miracle considering her injury. It is difficult to share with you some of the things that Shannon is working on if you don't remember this process. Please keep this in mind and we will try and continue to share our journey with you. We do that because it is your faith and prayers that we continue to see the miracles. And somehow we feel that the Lord is using this blog as a means of touching others. We owe Him so much that if in some small way this is part of His purpose, we want very much to obey regardless of how difficult it might be.
Yesterday during physical therapy and occupational therapy, they had Shannon pull colored velcro blocks off a large 30" by 40" (I am guessing) board. They would ask her to get a red block. Then they would wait for a long time in order to give her brain a chance to process. Sometimes they would tap her hand and say it again. Shan is still having problems holding up her head and is not sitting on her own but she grabbed the right block the first time. The second time (they asked for a different color) she picked the wrong one. Then the next couple were correct, then she missed one and then she got ALL the rest of them right. As you think of the brain making new connections maybe even by trial and error, this process makes so much more sense. She still struggles to open that right eye wide enough and she is still training it to look where she wants it to look and up is especially hard at this time. They did have to move the blocks a little lower so she could see them. The second activity they did was kicking a beach ball. She did super well with that and even alternated legs which is critical for the brain to reform those cross patterns necessary for reading. She did that time and she was spent! They helped her walk back to her wheelchair by being behind her, slightly kicking the foot that needed to move to get her started. Of the maybe 10 steps, she probably moved them herself 6 times and it took a good full minute. But it was more than the day before!! They like me to take her for a stroll so she can get stronger by sitting up. We didn't go far. She was just too exhausted.
We had a big misunderstanding with the speech folks. Some how I understood that they were going to give her the swallow test again. The nurse even thought that. We wanted her well rested for that. But when speech came in, we learned that they were not planning another study for probably 2 weeks. That was a tough blow. I had been telling Shannon how important this test would be because then she could start eating and when eating enough, they would take out the tube which she dislikes so much. So instead of the study being done immediately, they were talking two weeks and I am sure it showed the shock and disappointment on my face and my heart breaking for I had told Shan it was the next big step for her. It was an unfortunate turn of events that we needed to adjust to. The speech therapist explained all the things that has to happen in order for a good study and what they had done was mostly for a base line. It was a disappointment but we know that those will come. So we will plan on the two weeks and see if Shannon will let them wait that long. It will depend on how well she does with the speech therapy that they give her. (The therapist did see my face and so she said that perhaps we could try again on Tuesday after the holiday but she was saying that to comfort the disappointment. So we will plan on the 2 weeks and pray for another miracle!) The therapist then worked on Shannon using the muscles in the left side of her face and we saw more movement of the eyebrow and the smile! Such little tiny things but they become victories and progress.
The next activity was to have Shannon write her name. She put 3 marks on 3 different lines and thought she had done it. So the therapist told her that wasn't correct and she then patterned on the paper how to write Shannon. Then she gave the pencil to Shannon and she wrote her name!! It was very small and went at an angle rather than straight across but she did it! And the coolest part was that she moved to cursive and wrote the last 3 letters of her name the way she did before the accident! The therapist said that the angle was because the optic nerve in her eye is still not healed. (We are still keeping the left eye taped--it looks pretty good but we want the opthomologist to give us the go ahead sign before we leave the tape off. )
Then the therapist had Shannon match cards (4X6) that each had 1/2 a picture on it and she was to match the picture together. I think it was 6 halves that she started with. Once she figured out what she was supposed to do, it didn't take but a minute for her to match them. It is very hard for her to move and control her arms and hands just like the rest of her body but she did it! It takes time for each activity and it is again exhausting for Shannon. She was so ready to lay down and go back to sleep!
We now have a list of things (from watching the therapies) of things to work on with Shannon when she is awake! We enjoy interacting with her when she is awake. Her short term memory is still having a hard time. What I told her yesterday, she may not remember today. But it is getting better each day. Long term memory doesn't seem to be affected for as we talk of so many of you, she knows who you are and her interactions with you.
There has been no speech and only a couple of words has she tried to mouth. But Udell reports that last night they heard her make a couple of sounds. It seems that that is the beginning stages of speech returning! Yeh! Another victory.
To us, because of our family situation, each of these steps of progression is miraculous! We know what it is like for development not to progress. It makes us even more grateful to Heavenly Father for each step and being able to see His miraculous powers working on her behalf is very humbling. I know that the men and women in the medical field are amazing and they have learned so many things to help with development but ultimately, they can't MAKE it happen. That my family, friends, neighbors, loved ones, I testify is up to our Father in Heaven. We are so grateful to Him for His many tender mercies. We are grateful to Him for your love and support that helps us to "be strong and of good courage" and to recognize His presence in our lives.