Jan 15th

Today started early. We had to move rooms before 7am. We had been given the option to move the night before but we figured why move her so late in the evening when she was getting ready to sleep. If we had been told that the move would have to occur before 7 am perhaps we would have chosen differently.

Therapies started at 8am as well so we had to hustle to get everything done before that time. Dressing, Breakfast, Teeth, you know all those ADL's (activities of daily living). When you consider that eating alone takes about 45 minutes that didn't leave much time for anything else.

It was great to see Maddi in action this morning. During her OT time, Dr. Niedzwecki (Nedzwicky) came in and did rounds. Maddi was working on a coloring picture. As we were talking she just kept on working and stayed completely on task. She was listening to the conversation as well but was able to stay focused too. You and I do that everyday all day long but a TBI kid generally can't, especially one with such a recent injury. It was another one of those miracles that you would miss if you didn't know what to look for.

During Speech, Maddi also did better with initiating and attention to task. The therapist put a crossword puzzle on the table and before receiving any instructions Maddi completed the first clue on the Across column and answered correctly. She needed a little guidance in how to proceed in an organized fashion but she was able to complete the task easily. We also did some vocalization work with tone and pitch. Yesterday, she was completely monotone during this activity but today she went from low to high and high to low and you could actually tell which direction she was going. Again, for an average person fluctuation in speech tone is as natural as breathing but for Maddi this is something she is working on.

During PT, Maddi is working on running. Before the accident she wasn't really a fan of this activity but her gratitude for her mobility is giving her reason to enjoy it. She is even running up stairs at this point. She no longer requires the use of railing for support while going up and down the stairs. I think her balance is actually better than my own. I think I might need some PT help as well.

Today we were given another ride pass. The idea is to work her up to tolerating the stress of the environment outside of the hospital. This really isn't a problem for her. She is craving social contact with friends and normal life just like the rest of us. We went to the Gateway and of course had to linger and buy at Build-A-Bear. We ate at Rumbi Island Grill and she ate us all under the table. She said that the food was so much better than hospital food! I would have to agree. She did fabulous and it was great to be out and in a normal place.

We really want to go home at some point but the time allowed isn't long enough to make it worth the trip. We also have to resolve the motion sickness issue with Maddi as well. We will start a patch next week and see how she responds. We just don't want a problem with her other medicines. So until we have that problem resolved we are kind of stuck in Salt Lake City.

We don't want to give up our ride pass because she is puking in the car. That would count as too much stimulation. Our first time out we went to both Grandparents homes but that was long before she was as alert as she is now. We will figure it out and that will broaden our options a bit.

OK, I have to humiliate myself at this point in the post. If you are a frequent reader you will remember the sentence scrambles from yesterdays Speech session. Well, today as we were getting ready this morning. I said something and in my sleep deprived state I often say things backwards and upside down. Maddi so politely explained that my tendency for scrambling up sentences is the reason she did so well on the task in Speech.

She said, "I unscramble sentences so well because my mom talks like that sometimes. She is a little crazy."

I think she was just playing with my head but as I have been looking over some of my past posts perhaps she really isn't that far off target.

I noticed as we were walking to the bookstore Maddi had a sad look on her face. I asked her about it and she said, " I feel sad that my brothers and sister can't be with me. I want to be together. I want to go home." I knew exactly what she meant!

As we were sitting in Barnes and Noble Bookstore a little while later, Maddi was taking a brain break. She all of the sudden sat up right and said;

"My braces hurt (the inside of her mouth has been one big canker sore). It isn't fair, I have a brain injury and I am TBI and I have braces that hurt."

Then she promptly proceeded to say," I guess I can handle it, Heavenly Father won't give me more than I can take."

What complete faith. I never, ever thought I could handle it. I just figured I needed to pray continuously and diligently to make it through and work as though I could handle it, hoping I would rise to the challenge.

The emotional healing that has to happen for Maddi with this injury is probably just as huge as the physical or cognitive healing. I would actually say that it has the most determinate effect on her life in the long run. So far she is handling it so much better than most adults handle everyday disappointments so I am not too worried.

I also know that children often put on a brave, strong front because they don't want to disappoint their parents or loved ones. I want to support her in accepting what is without pretending that it is OK. It really isn't OK to have to start over like a baby and relearn everything you ever knew. It really sucks! There have been blessing without a doubt. We have been cradled in the arms of our Savior for sure but that doesn't make it OK. It just gives you the strength to keep moving forward when you would rather quit and give up.

Letting go is a huge step in mourning and opens the door to moving forward. Maddi is amazing in her acceptance so far. I hope her positive attitude continues. I am praying for continued physical/cognitive healing but also I am praying for her emotional healing too. I pray that her optimism won't dim through the work of healing and that she won't forget the miraculous things she has told us about. I pray that she will have all the opportunities that life has to offer and that she will always be surrounded by wonderful, loving people.

Yes, we have been witness to a miracle but the work isn't done. I know that it has been more than 2 months and life has moved on for most everyone else but please remember us in your prayers. This is a long term healing for Maddi. Next Christmas is as early as we can even look to see what the future might hold for her.

Until then it is just work, faith, prayer and more work. Thanks for your contribution to our miracle! One thought, prayer, candle or card has helped Maddi get where she is today. It is a miracle. Maybe one of these days soon I will give you a glimpse into our worst case scenario days just so you can get a clearer picture of how miraculous this really is. Thanks!