Primary Songs and Acceptance

Maddi said the funniest thing today during Speech Therapy. We were singing Primary songs to work on breath and pitch in her voice. We sang Jesus Wants Me For a Sunbeam and Popcorn Popping. When we do anything in Speech it is always about understanding. So Maddi, as the over achiever she is decided to volunteer the specifics on the meaning of the song.

For Popcorn Popping,
She said "It was about a boy who was hallucinating when he looked out his window."
Dad said, "That the boy must have had his letters mixed up, LSD instead of LDS."

It was hilarious! She has made comments about sarcasm being used and has been pretty funny. I am so glad she is happy for the most part. I need to be careful because if we laugh at her she might be afraid that she is saying the wrong thing so she will begin to retreat. We don't want her laughing "with" us because she doesn't understand. That would be detrimental to her overall brain development at this time. But sometimes what she says is so funny I can't help myself. I really need to work on that!

It isn't that she doesn't get mad or sad but she says that she doesn't like to be mad or sad so she tries to be something else. She has been working on facial expression and that has been fun too. She has a great wink and a brow wiggle that is so nice to see.

Sometimes TBI kids have a flat "affect" as they call it. That means that regardless of how they are feeling their faces look the same. Often they have to be taught the correct expression and how to apply them. Maddi not only understands facial expressions well but is starting to use them in her own speech. All of which is a critical part of her healing.

Maddi has improved so much over the last few days. We are now up to a 25 piece puzzled with a little guidance. We started with a 10 piece puzzle with heavy prompting. It really has little to do with her ability to do a puzzle but more about the initiation of a task.

There is the visual perception part of a puzzle and she does struggle with that a little bit as well. I see the frustration in her as she is doing these tasks. We do a lot of puzzles as a family so using the same puzzles I have in my first grade classroom feels a little insulting compared to her previous abilities.

Today while doing a "worksheet" with sentence completion she did fabulous. It was the same format we have done before. In the past her impulsive behavior really got in the way of her responding correctly. Today she didn't hesitate, nor did she need the intensive prompting that she has needed in the past.

For me, that was great to see that she could sustain her attention to an academic task and be so accurate. Just to give you a great numerical assessment, before today while working on this type of task she could do only 2 or 3 without losing focus and resorting to impulsively responding instead of answering correctly. Today she did all 12 without any trouble at all. That is a huge improvement!

They also did sentence unscrambling, where they tell her a sentence and she was asked to put them in order. She did amazing at this skill. She did six word sentences without any trouble. The Speech Therapist named LeeAnn mentioned that she doesn't usually get to work on the six word unscrambles with her patients. That was very encouraging. It doesn't mean she is ready for a 45 minute lecture without any organization like she would find at South Cache but her language skills are very well developed.

We had her eyes checked and all was well there. She needs glasses but we knew that already. We were planning to have her fitted for contacts as part of Christmas but that will need to be on hold for a little while.

Maddi also had the scope done on her vocal chords. Everything looks OK. Her vocal chords are bowing a little bit. Think about a muscle that is really weak. She also has a nodule on the back but he isn't too worried about it. He recommends that his colleague come and take a look because his specialty is more about the vocalization rather than the mechanics for an ENT. However, nothing to worry about we are just checking to make sure we are doing everything possible.

Maddi is also not repeating everything people say to her all the time either. That is a good sign as well. She is being more deliberate in her speech and is giving more voluntary information. Talking is not the problem but the appropriateness and the context is one of the things we are working on with her.

We are given homework assignments every night to complete, sometimes it is a worksheet for task completion, it may be a game we have play, or counting money and making change. You tack that on top of having to count how many ounces of liquid she gets in a day that is a full time job right there.

There are so many things that she is working on I could write for hours and barely scratch the surface. Here is an abridged list:
1. Path finding (getting from place to place in a familiar and non-familiar setting
2. Problem Solving in every setting plausible
3. Sequencing of events
4. Orienting to the day, date and year
5. Prioritizing a task and initiating it without prompting.
6. Slow, loud, clear speech
7. Authentic non parroting speech
8. Attention, maintaining and completing a task.
9. Asking for help
10. Knowing her schedule, getting the events and people matching up correctly. (Short Term Memory)

These are just the top few that are on the forefront of my mind right now. That doesn't include all the daily living tasks she is trying to master for independence like brushing her teeth, dressing, eating and grooming. She has come so far! She is advancing quickly through these steps but it still takes cognitive thought to do them. It hasn't become automatic which is the goal.

All in All, things are going really well. They are talking about her coming home in about three weeks and taking her G-tube out next week! We are so excited about the hope of going home. That doesn't mean she is completely healed or that she can be left alone or go back to school yet. It is just one more stage of the healing process. We are so thrilled!

When you consider the statistics on her type and seriousness of injury; 90% of these kids never "wake up" or return to full interaction with the world around them. We feel pretty blessed. Of the 10% of those who do "wake up" almost all of them have profound disability. Maddi is doing AMAZING! I am so proud of her attitude and willingness to work hard to regain her abilities.

I have purposely kept the specifics of her diagnosis out of the blog because the last thing I needed were people around us losing hope or treating Maddi like she wasn't going to get any better. Motivation is huge for TBI kids. I have never let the Doctors talk while Maddi was in the room about the worst case scenario and I have never done that either in specifics.

It has always been about she is getting better and that we will work hard and take her as far as she is capable of going. It has never been about the possible disabilities. I feel extremely blessed that most of what was discussed in those out of earshot conversations have not become a reality. Maybe some day I will write out all the could have been things but not now. The gratitude I feel for the mercy of God being granted to Maddi is overwhelming! Just an FYI, prayer without asking for one single thing is not as easy as it sounds.

I am so humbled by the support and love shown to us. I don't think I will ever be able to express my appreciation well enough. So many people have blessed our life during this trial in so many different ways; financially, emotionally, physically and spiritually. We will always be indebted. Thank you and may God return those blessings and multiply them to you, 100 fold. I could do a new post everyday just on the spiritual side of this journey.

I have often heard people say, "Well, if I had to give up what I have learned I would choose to go through that trial again."

I don't know if I will ever be in that specific place. I feel more like if I must be here then I will find joy and hope and happiness despite the hardship.

The other myth I have heard people say is,"Well, if we all had to put all our trial on the table we would pick up our own."

Mostly, I have agreed on that point but in this situation, I am 100% sure I would not pick this one up off that table, more for Maddi's sake than my own.

This is hard work for me but I have only one tiny idea of how difficult this is for her. It isn't like a child being born with a disability where they don't know anything different. Not to say that any disability is better one way or another it isn't. Neither one is considered easy.

But Maddi remembers how she was and how she was meant to be. She has that memory of life before all of these constraints placed on her brain. Now she has to learn to adapt to a new way of thinking literally. It doesn't mean it is all bad but there is loss in this experience.

Often it is explained like having a death and a birth in the same moment.

I had a deaf roommate that explained her experience to me this way. She was born deaf, she never knew what it was like to hear so she didn't miss it.She didn't have any fond emotions surrounding music or hearing her mother's voice. She never had that expectation so it wasn't a loss to her. Her frustrations were in the inability to communicate and coping with a world fixated on what she never understood (sound) in the first place.

This is an entirely different experience from what we are doing right now with Maddi. We always put this in a "We" because we don't want Maddi to feel alone in this. It is so much better for all of us to be going through this experience than just having it happen to Maddi.

We are weary and want to be home but more than that we want life to be just as it was. We know that is most likely not our option but as long as Maddi is happy and can find joy in life, so can we!

We keep referring to this as getting to know MADDI 2.0. So far she is delightful and as sweet as she can be. Just like for Maddi, mourning for what was is part of what we are all doing but learning to be excited for the new future is different but encouraging too!

Maddi's Spiritual Quotes:
"We must have FAITH to live."
"Heavenly Father loves us."
"We are loved more than we can know."
"Sometimes it is hard but we can keep on trying."
"It is OK I am just learning and even if I can't learn it, it will be OK."
"Jesus loves us so so much. He wants us to succeed. He wants us home."