Sunday, January 30, 2011

Maddi's Song

Maddi's Song...


video
Here is the song that Maddi wrote with Carrissa during music therapy. It isn't the best recording but it is such a beautiful heart felt song. There is nothing I can say that would add to this post. It would only detract from the simple beauty of her feelings.
Here are the words:
MADDI'S SONG
Having to relearn everything,
Is hard and kind of frustrating.
It makes me sad when things are really hard.
I'm worried about going home,
About my health and if I'll feel alone.
Remembering my life before that day.
CHORUS
I'm happy that I get to see my family,
I am happy that I finally have a voice.
I'm happy that I'm making lots of progress.
Thanks to Mom and Dad,
Primary Children's,
Heavenly Father,
For the miracles.
Having to relearn everything,
Is hard and kind of frustrating.
Getting through the day without forgetting things.
I was proud when I could scratch and move.
I feel like I have things to prove,
That I can do the things I used to do.
CHORUS
But it makes you grateful,
For the things you have.
Though it's hard trials happen for a reason.
CHORUS

Thursday, January 27, 2011

Party- Homeward Bound!

Maddi again:

Party Time!!!

Remember the song I wrote with Carrissa? Well, I am singing it at my party tomorrow. I am excited! We are having Moose Tracks Ice Cream with mint chocolate chip ice cream and peanut butter rice crispy treats. My dad made a CD with the songs that I picked today and we will play them at my party.

JAIL BREAK!!
Today I got to go to lunch with my Aunt Donna and my mom. In the middle of the week. That's a first! We had dessert because I had already had lunch. Can you say "Paradise Pie!"
My mom got to eat lunch for the first time for a lot of days at the right time. It was super fun! Love you Aunt Donna!

It has been a long journey but we made it through. It has been a hard road. It has been really hard to learn everything again but I still have more learning to do at home. I will have more therapies to do.

I will be going back to South Davis Hospital to visit Matt and Stormy and to visit some of my friends there, on our way home tomorrow. Dr. Murphy came and ate a "star crunch" with me yesterday. Mason ate all the other ones my friend Sam gave to me when I was still in a coma. Mason you owe me! Coma, I am sure glad that you are over!

I am happy that I am going home!

I will be able to call Jacob on Monday!! Yay!!!! He hasn't heard me talk yet. He will be excited and I am excited too! Yippee!!!

I am thankful for Heavenly Father and Jesus Christ. I am grateful for my parents and my family. Brooke won't be home when I get home tomorrow but she will be home the day after though.

I know that lots of you have prayed for me. Thanks to all of those that did. I sure needed all the prayers I could get.

I am grateful for all of your love and support.
Maddi, over and out.

A Billion Dollar Baby

First, please be sure to read the blog post One More Day. Now you can view these images.

Maddi's television interview on KSL's Studio 5



Every parent tries to instill in their children thay they are valuble and important. Bev and I have proof, in the form of a bill, regarding Maddi's importance. If Maddi's value is based on this bill, and we only have 13 years invested in here, then just image the worh of Mason, Brooke, or Jacob.



Yes, that is $1,248,478,441.74, One Billion Two Hundred Forty Eight Million Four Hundred Seventy Eight Thousand Four Hundred Forty One Dollars and Seventy Four Cents. I think they may have a small bug in their billing software. Oh, and that is only for the admittance process of 11/26/2010 and 11/27/2010.

Here are a couple of writing assignments Maddi has completed.


Appoximately 1/19/2011




1/24/2011


Wednesday, January 26, 2011

One Day More

I haven't blogged much this week. I have been distracted by parent conferences and lots of exhaustion. I don't know if I am just saving it all up for a avalanche or if this kind of tired is just a permanent fixture on my life.

I am sure part of the "dragg-in' butt" is seeing the end of this one chapter. The fact that home is so close to being a place I actually get to be, is something euphoric and soothing to my soul.

Our days here are very regimented so the "what are you doing" of being here has been answered many times; Physical Therapy, Occupational Therapy, Speech Therapy, Music Therapy and Integrated Medicine are the appointments we keep through out the day.

We are working on reasoning skills, strategy, problem solving, safety issues and just basic cognition. Just to name a few. All of those skills will need continued growth and development once we get home. The journey is definitely not over but just beginning. I am just glad to be starting with a known location................HOME!


Today Maddi worked with the Music Therapist, Carrissa on her feelings song. Carrissa asked Maddi to write down how she felt about this experience and her feelings in general. I have to say it is the most beautiful song I have ever heard. Maddi and I sat down together, she told me what to write and I wrote exactly what she said. It was too difficult of a task to ask Maddi to physically write as much as she was feeling. Then Carrissa and Maddi wrote the rest. I cannot begin to explain the simple beauty of that song. They will be singing her song at her Graduation from Rehab party on Friday! I will record it and post it here is I can figure out how to do it.

I am not one to cry to much but I got pretty choked. It was beautiful. Music can get me to cry faster than anything else on the planet anyway but having my Maddi singing is enough to get me to puddle. Maddi and I have been working on her voice by singing her favorite songs. How grateful I am to hear her voice singing or not!

The nurses know when we are heading towards the shower because "Defying Gravity" is our walking song. It has to be "Kurt" from Glee singing it though. After multiple playings of "Defying Gravity" we have to go to Beautiful as sung by the character "Mercedes" also from glee. We find "Rehab" an appropriate song, "Hello, I love you" is another favorite. We love "Bad Romance" but there are some lyrics that prevent repeated listening.

Thanks to Maddi's cousin, Casey, who provided all the Glee songs. The have become integrated parts of her day and her voice therapy. We haven't watched this show, as of late, because they were venturing into some fairly controversial topics that I don't think are appropriate for Maddi's age group. I don't want to encourage a show that would be questionable.Parents check it out before letting your kids watch. I don't want to be responsible. That being said the music is AWESOME!

Maddi's voice is so much stronger! By the end of the day the whisper is back but not nearly like is was before. Not only is her voice stronger but her ability to focus and attend to a task has increased a lot. From the outside most people wouldn't see the difference but if you were working on a task with her, it would be obvious! She is improving every day!

We are getting ready for the trek home. I have decided I can live in a very small place and I need very little. We have been blessed by so many people and are so grateful! Thank you!

The worries of life are filtering to the top as we look to the future. We will get through it and the Lord will provide for us as he has so far. They say that all struggle includes opening and closing of the doors. I hope that as the doors open I will see them as opening instead of shutting. I have decided that it all depends on perspective.

I have always felt like happiness has more to do with perspective and faith than anything tangible. I know that even when it is hard I can do only all I can and let God do the rest! My part as piddly as it is, has to be enough. That doesn't mean that I will have all the material things in this world but I will have enough. Even when it isn't enough we will make it through. I could include all the worries here but what will that accomplish. Money is just the scraps of stuff that has no eternal value.

I had a dear friend speak in church one Sunday long ago. Their last name could have been Job from the Bible. I had asked them many times prior to this talk how they were able to move forward and we had talked about a lot of things like; faith, prayer, hope, fasting, obedience.................... you fill in the blanks. As he was speaking that Sunday, his talk was titled, Consider the Lilies.

I have often seen this title since then in conference but never before had I heard it explained the way he did that day. I had always loved that part of the scriptures just for the imagery that it evoked in my brain. The thing that has impacted me and stayed with me for more than 13 years is that the seeds, flowers and birds were all DESIGNED to succeed.

The seeds and the flower were innately given all of the building blocks for beauty, inspiration and contribution. They didn't have to "work" to become what they were meant to be. They just had to weather every storm and reach for the sun when the clouds left.

This situation with Maddi is a; hurricane, tsunami, tornado, avalanche and tropical storm all rolled up into one, but if we can just hold out till the sun comes, We will make it too. That doesn't mean that it is easy. All of this recovery takes serious work but we are endowed with the ability to weather this storm.

Anyway, one more sleep as my little ones used to say!
Homeward Bound!

Monday, January 24, 2011

I'm A Survivor


This is Maddi again...

I survived 24 hours with just my Dad, the nurses and my therapists to watch over me, but I did OK.  Dad could only do my hair in a simple pony tail, but he did a good job.  He had to get help with my earrings because he couldn't get them in.  He even got me up on time and to all my therapy sessions without being late, and helped me eat breakfast in record time.  Way to go Dad.

My Mom spent all day at Parent Teacher Conferences, but I know that she would rather be here with me – She told me so.   She will be back with me tomorrow, to save me from my Dad.  Mom you are B-awesome.  As said by the over-fat rodent in the movie Bolt.

My favorite sister Brooke, who is B-awesome, is going on tour with the USU Ballroom Dance Team.  She will not be there when I get home Friday; I will wait for her there.  She will be doing something she loves and I am so proud to have a sister on the USU Ballroom Dance Team.  I love you Brookeeee. 

Mason has been at home keeping the world safe from alien invaders.  Way to go Mason.

My second cousin and her children and my great aunt came to visit today.  It was fun.  My cousin gave me a framed picture of me and some of my girl cousins, taken at my great aunts birthday party.  Don't ask; I won't tell you how old she is. :)

Today they took out my G-Tube.  The G-Tube is where I was fed when I was unable to eat.  My Dad held my hand when they took it out so I would not deflate.  I say that, because the outside part of the G-Tube looks kind of like the plug on a beach ball or air mattress, where you put air in or take air out.  It's a good thing I'm not full of hot air, or I would be a "Flat Maddi" kind of like "Flat Stanley".  For those of you who don't know, "Flat Stanley' is a main character in a book.  When the G-Tube came out it made an embarrassing sound, and I said "excuse me".

Saturday, January 22, 2011

The Best Day Ever as told by Maddi

Hi, my name is Maddi.
I just had a Traumatic Brain Injury in November. The day after Thanksgiving to be exact. But you probably already know that considering you are following my blog. My mom is typing this but I am telling her what to type.

I got to go home today for a few hours. It was the first time I have been home since "Black Friday". Now that name means more than just a good sale! My dad says that next year on Black Friday, no one get to leave the house no matter how good the sale is.

Here are the four things that were good about the trip:
1. I got to be with my sibling, Mason and Brooke
I love them and they are very special. I have missed them a lot.
2. I got to be with dogs.
Fionn licked me to death and Josie was just dying for attention. I loved it!
3. I got to lay down and snuggle with my mom on dad's side of the bed.
I never get lay down on dad's side of the bed because he is usually in it. It felt like I was loved!
4. I got to go to Texas Roadhouse for the first time with my friend Sophie.
I got to visit with a friend that I don't get to see very often. The rolls were also very good!

Here are four not so good things about the trip:
1. I threw up twice because I got car sick.
How gross!! I threw up! It was "busgusting" (as said by Hunter)
2. I only got to stay for a couple of hours.
I was sad about leaving! Oh "sad face" (as said by Brooke)
3. When we went to Texas Roadhouse, my voice was so soft no one could hear me.
I had to repeat myself a lot. It was insanely busy!
4. Having to come back to the hospital.
Makes me sad because I had to leave my dogs and my siblings. BooHOO, sniff, sniff.

When I was in my coma, I remember Jesus came to me and told me to come back to my parents because it was not my time. He told me that he loved me and he wanted me home but it was not my time. He said he wanted me to succeed as well. If you ever have doubts that Heavenly Father loves us, think of this. He knows me so he must know you!

Keep the Faith - as said by Billy Joel!

Friday, January 21, 2011

One Week and Counting

Today was a bit out of the "normal" for me. I started my day at the school where I have spent most mornings Monday through Friday for more than 10 years. Parent Conferences are on Monday of this next week. It always seems like everything converges on conference weeks and this year is no different.

I felt so good to be in that place and to see those sweet first graders and all the staff that have become more family than friend through the years. I have known that they have been following this blog and I so glad! I haven't had time to be much of a friend to anyone throughout this time. I count myself so truly blessed to be surrounded by such loving supportive people and this is just one group. Love you guys!

By this time in one week from today, we will be home! I am so excited! Here is my list of happy dance reasons why I want to be home besides it meaning Maddi is doing fabulous:
1. HEARING THE SWEET SOUND OF MASON AND BROOKE DEBATING SOMETHING I KNOW NOTHING ABOUT!!!!!!
2. Sleeping in my own bed with my husband as my personal heater.
3. Not having to count input and output fluids all day long.
4. Being able to sit at my table for six and have most of the chairs filled.
5. Not having to wait for the washing machine or shower.
6. Being able to sleep through an entire night without disturbances.
7. Not having to get into a car if I don't want to.
8. Not having to wear wrinkled clothing.
9. Snuggling my dogs when ever I want.
10. Family Prayer together for real.
11. Sitting in my green chair where my feet touch the ground. There aren't any appropriately sized chairs for my legs except up in the children's playroom. I wanted to steal one!

Just as coming home has so many benefits and longed for perks, the law of opposition requires there to be a conflicting set of reasons for trepidation:
1. Knowing the harder work begins without all the experts.
2. Having to go grocery shopping again. I think I have forgotten how to do that.
3. Thinking of dinner without ever being hungry and ahead of time.
4. Introducing myself again to my kids at home.
5. Feeling rude when we can't see everyone who wants to visit.
6. Worried that people will not understand that Maddi isn't finished healing. She is just starting the next step on a long road.
7. Maddi" looking" so good that people will forget how fragile she still is.


I totally think the perks of going home are so much greater than any worries! I have had a lot of people mentioning that they want to come visit. We appreciate your support so much! Just remember that initially we were hoping Maddi would be home by March. One of the reasons she is able to come home is that she is handling stimulation so well.

That being said, being home is a whole new set of stimulation patterns. There is this feeling of complete relief that says," she has made it and she is home.". We feel that but we have spent so many hours learning about Brain Injury and what Maddi needs, that it is hard to forget the long road ahead. We would love to educate every one about Traumatic Brain Injuries but I am sure the following of the blog would completely drop off. There are so many aspects of healing and recovery that we are just beginning.

There are so many things that can contribute to over stimulation and other cognitive issues that we still have to limit things a lot. Please do not feel overlooked, disliked or unappreciated if you can't come see her. It is necessary for her to gain the best outcome in healing.

Here is how We decide who can come and visit:
  • If you are family or really close friends.
  • If you know Maddi personally and you were a part of her day to day life or spent a lot of time with her before.
  • If you held a special place in Maddi life in the past (special teachers or leaders).
We are not trying to limit her friends, we know she has many friends at school that we don't really know. Please, don't think you are not Maddi's friend if you can't come right now, just know that she is still healing and needs some time.

Maddi's injuries were and are so severe that it was not expected that she would ever wake up, speak, be able to think, move, or learn. Let me say that again...  "She was was not expected to wake up!"  Well, she showed medical science didn't she.  The fact that she is doing all of these things is TRULY MIRACULOUS. Just know that we are walking down an unknown trail. This kind of recovery rarely ever happens and knowing her needs and what she will be able to do are all completely unknown right now.

Please be patient with us as we figure it out. Obviously Maddi isn't going anywhere and she will only continue to improve, if we are careful. She is rebuilding her memories and skills. Having too many vaguely familiar people coming to see her before she has cemented the most familiar in her mind her will cause confusion.

We have used photos to help remind Maddi of family members that she doesn't see very often. She has remembered and is even able to tell about specific events they have shared. This is a slow process! It isn't like they show on TV where people just wake up from a coma and are the same as before.

I am sure you can tell my biggest concern for coming home. We are so appreciative of all of the support and love that has been sent our direction. We would not have made it this far without all the prayers and support. Coming home feels like I now have to say NO to our cheering squad. That feels icky to me! I want to embrace each one of you in the deepest hug of gratitude. I am sure that time will come but it won't be next week and perhaps not for a bit longer.

Anyway, it is one week and counting! I don't have adequate moves to do the happy dance justice at all! I guess the most appropriate move would be one that includes a bended knee and a bowed head in humble gratitude for the mercy and miracles granted by a loving God.

Thursday, January 20, 2011

Newspaper Realization

As I was going to the cafeteria this afternoon for the one meal I thought to engage in for myself. I noticed the newspaper stand. I have only walked this path more than 100 times but I had never noticed the stands holding the Salt Lake Tribune and the Deseret News. As I caught a glimpse of the newsprint the realization hit me.........I haven't read a newspaper since before Thanksgiving, looking at the ads for black Friday doesn't count.

As my children can attest I am a bit of a newspaper junkie. I don't know why I care. Most of what is written is propaganda anyway and the stories are twisted to show the bias of the writer. Even knowing that ahead of time I read every word.

As I was contemplating this situation it occurred to me that sometimes we focus on the least important things in life because they are easier to tackle than the critical things. This journey with Maddi has really brought home what really matters. A simple four letter word, LOVE.

It is about family and those that are family without the blood to bind them to us. It is amazing how quickly those connections come into focus when something like this happens. It is easy during the every day to let those relationships drift out of distance, difficulty, lack of time or energy or just out of difference of opinion. I feel deep gratitude for the large circle of support that has been around us. An experience like this defines those relationships in such a clear way.

It is about the sweet interactions between people that have no reason to care about each other. We have been witness to "Stranger Love" through out the world and here at Primary Children's Hospital. We printed a report of where people are that log on to this blog. We have people on every continent except Antarctica praying for us or at least interested in our story. We have been blessed with a great miracle in Maddi's recovery but also we have been witnesses to the goodness of people everywhere regardless of religion, geography, philosophy and status.

Here at Primary Children's Hospital people are thrown in together from different walks of life and from contrasting points of view. Somehow in the "thick" of things those other people's outcomes become as important as my own. There is a kindred desire to uplift and help share the burden of heartaches, struggles and joys. I am so grateful for those that helped carry us. I feel privileged to return those blessings for others. I think that is what the Master meant when he asked us to carry one an others burdens and mourn with those who mourn.

We have watched many people go home while we have been here. I cannot explain how excited I get when someone else gets their discharge date. Some of those people we haven't even spoken to but others we have become connected for life. There are also those times that I have been able to shoulder part of the heartache connected with this place as well. While at other times someone else has carried part of my burden until I was strong enough to pick it up again. It is impossible to share how these events have changed me.

The one constant in the lives of every human on the planet is the need to be loved and to have some one to love. The one big message that has emerged from Maddi's "still" time is LOVE. She describes what it feels like on the other side as love and home. She describes being with Jesus as feeling so very loved. Every word spoken to her by family members who, long ago found rest in that beautiful place, was about how loved she is and how she can help others feel hope.

If love is the main ingredient, wouldn't it be an amazing thing if we could create that feeling each time we talk to someone. To make sure that when they part from us they are convinced of their ability to BE loved.

So headlines are so impersonal. They don't tell the real stories. Stories happen between hearts. The better part is always about how to love more and completely!

Wednesday, January 19, 2011

Homeward Bound

We have been given the official departure date, in the afternoon of;

January 28th.
We will have been away from home for 64 days.

It has been a long road but that day just marks the end of one part of this journey for us. We will still have therapies everyday and more healing to work through once we get home. The story isn't over for sure. The brain continues to dramatically heal for more than a year. We are still hopeful for a complete recovery. That day is still in the distant future but we are so thrilled with her progress so far. She has recovered more than we dared hope for, so long ago in those dark days in the PICU.

We are ecstatic about the prospects of being home. She has improved so much quicker than anyone ever thought possible. When we returned to Primary Children's Hospital it was with the hope of getting home by March!

We are thrilled! Thanks for all of your support. We have been overwhelmed by the extension of love sent our direction. There are not words to express our appreciation. All we can hope to do is in some small way find a way to pay is forward and give back all the support that has been given to us.

Stay tuned. WE ARE HOMEWARD BOUND!

Tuesday, January 18, 2011

Things are moving so quickly right now. I feel like I haven't taken a breath. Obviously I have or I would have a TBI based on oxygen deprivation. Maddi has improved so much in the last week. Her attention and initiation of tasks has increased by at least 50%.

Today in Speech we did a task that we had worked on last week. Last week it took two separate times and lots of prompting to complete the 12 choose the right word problems. Today, Maddi picked up the pencil and just went to town and completed the entire worksheet in such a short time. She didn't even need us to use another sheet of paper to cover those questions we were not working on yet.

Her rate of speech has slowed down and her voice tone is improving. She has an appointment to see another ENT guy who specializes in vocalization issues on Thursday. We have also been working on theoretical scenarios for safety to make sure her reasoning and solutions to problems are appropriate for the situation. It is amazing how many things we take for granted in just average childhood development. She really is improving!

In OT we are working on problem solving and reasoning skills using games needing strategy to win. They are specific for what Maddi needs. I don't want people to get the idea that we are just playing games because that is not the case but we are using games to facilitate those skills we need to develop.

On the PT shoreline it is still all about core muscles! She is doing fabulous in motor navigation but she is masking or hiding those weak areas by compensating with the stronger muscles. The idea of getting Maddi into a Yoga or Pilates class was discussed and recommended as part of our getting home plan. I am pretty sure in my neck of the woods there aren't any of those classes specific for kids. I think this will be a joint operation for Maddi and I.

Music Therapy has kind of turned Maddi into a star. They did an interview with her and filmed her interacting with the music therapist today. It is scheduled to air on KSL next Wednesday at 11:00, I am assuming in the morning. Music Therapy is often seen as an unessential part of her type of healing so the funding is always being cut. With Brain Injury, music interacts neurologically differently than any other learning. It is stored differently and is accessed at a different level. It highly effective for memory retrieval and to cement new learning.

Maddi's focus has been about helping people and giving them hope. When she was asked if she would talk to them she saw it as a way to help people. John and I had to give consent and of course we did. I just wished we had been given more notice. I would have done something better with my hair. It was a ponytail day. I decided that it was an "Oh, well" moment. We can't all have a good hair day. I guess mine was just captured on TV for everyone to see. If anything this situation has taught me that my needs are generally insignificant. Hopefully they will edit John and I out and just have the focus be on Maddi!

I am feeling weary of not being home. So is Maddi. We had great outing over the weekend that helped us feel more normal but it still isn't being home! I miss my other kids, my dogs and my first graders. I miss feeling like I have any say in things at all. This experience is not for those people who want to control every aspect of their lives. I gave up on that a long time ago but I sure under appreciated those areas that I did have choice like being able to decide on things like, shower time, clothing ( living out of a suitcase limits your choices), bedtime, mealtime, recreation time and place. Having all my kids in one place doing what we want without a curfew.

I don't mean to complain. The blessing have been overwhelming! Maddi is doing so much better than anyone ever thought she could do. I have said it before but.................
Remarkable
Miraculous
Amazing
Unbelievable
...........are all words used to describe her recovery by the doctors who knew and understood more about her injuries than John and I could begin to learn. I am so grateful for a merciful God in Heaven that allowed Maddi this miracle. I knew that God wired her brain the first time so he COULD wire her again. That being said I knew that it had to be HIS will not mine for that to happen.

I don't know why Maddi has been granted this miracle when so many other people haven't. It is hard for me to watch others around us having different outcomes and not feel unworthy of such a beautiful blessing given to Maddi. I know that I am just the mom and this journey is hers but I have been walking beside her with every step.

Early on in this journey I mentioned that I am Forever Altered. When you take a garment in to the tailor it is always to get a better fit. As I have thought about that title I feel it has deeper significance than I originally realized. My seams, cuffs, hems and sleeves have been Altered to allow for space and trimmed where it is needed. A little tuck here and a hem there is creating a better fit for a better outlook on life and a deeper appreciate for those tender mercies and gifts of God that are all around us. The fabric is sound and of good quality, it just needs a bit of work.

Anyway, I tend to turn my experiences in to parables so I apologize.
Gratitude is overflowing in my heart for great friends, family, doctors and strangers who have prayed on our behalf. I have the deepest heartfelt testimony that there is a God in Heaven, who knows us by name! He knows the desires of our hearts and supports us in those times of deepest sorrow. He has a plan for us though we may not understand his will, it ALL has purpose. Even those outcomes that are not what we desire there is a reason. That doesn't mean that I haven't had my days. I have but it is all about coming over to the Lord's side.

"He leadeth my soul where the still waters flow"
"He maketh me lie down in green pastures."
Only HE knows where the still waters are and where the green pastures can be found.

The grass is truly greener on the Lord's side.

Monday, January 17, 2011

FYI

If you are interested in seeing photos of Maddi, we went back through the past posts and added them in the appropriate places according to the date. We purposely didn't include photos until we had the opportunity to show Maddi first. Some people may say it wouldn't have mattered but it does. Now that Maddi has seen all of these photos I can make them available to all of you.
Also if you have photos that you have taken while visiting please send them to me. I am trying to keep an accurate record of this adventure. Send them to bevsanders217@gmail.com as an attachment. The photos are really helping Maddi right now, as she pieces together the time since Thanksgiving. Please send them!
I know it is a pain to go back and look at each of the posts to see the photos but we wanted them to correspond.
It is amazing to see the difference just a few days can make.
This picture was taken December 30, 2010








This one was taken Jan. 15, 2011


I chose these photos because they were so similar. Amazing! Looking at the photos will also give you a better idea where we have been. I have tried to describe things well but like the old adage says; "a picture is worth a thousand words."

Saturday, January 15, 2011

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!

Friday, January 14, 2011

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."

Wednesday, January 12, 2011

Attitude, Gratitude and Knowledge

Maddi is doing awesome! It is amazing to watch her determination and persistence to learning something new. I know some of you are thinking but you were saying that her attention is a problem. Both of these statements are true. Attention is definitely a problem, she is easily distracted moment to moment. However, once she knows what "we" are working on she will continue to work on that skill all night long to the point of exhaustion.

Lisa (PT) mentioned that she wanted to hear Maddi laugh, over and over again that night she was working on her laugh. She now has a nice, soft little giggle going on. She is still distracted but she always come back to the particular skill we are working on.

It is interesting to hear her internal dialog. Everyone has one, it is all the things we say to ourselves when no one is listening and no one is there to rescue us from our own self. It dictates our perceptions of who we are. I call it the "shoulds person". The part of our internal state that determines our success on a checklist we have created. You all know the voice; " I should be skinny, smarter, kinder, more organized, service oriented, driven................." you fill in the blank. It is the sister we embrace as correct without providing a check and balance system for her. She is the most dangerous person in the world and usually women have difficulty navigating this relationship.

Right now Maddi is having that dialog aloud. I am seeing parts of her that she would have kept so private before just like any teen. I am grateful to hear her talk. I am more grateful to hear how compassionate and kind she is to herself. I always knew she was kind and compassionate to others and I hoped that she would be so with herself. From her dialog, I would say my hope has met fruition.

Women seemed to error on the side of critical judgment when dealing with ourselves. I liked how Brother Uchdorf said, "Some people don't get along with themselves." Luckily for Maddi she either doesn't have that problem or hasn't reached that stage of recovery. So far she is really positive with herself. Today she was doing something and had said the right answer but wrote it incorrectly. Instead of saying mean things to herself she said,

"I am just impulsive right now. I am working on impulsivity. I will get better".

I am so pleased to see that optimism and hope for better things to come. They have told us that depression is a common side effect of her type of injury. So far it seems that she is doing pretty well. I am so grateful, I can only imagine how this would be if she were saying mean things to herself and berating herself for those things that she "should" be able to do. What a tender mercy! It gives reason for pause to assess if we are treating ourselves with the same kindness.

Tonight, she did say she remembers being able to do all of these things without any help. I reassured her that needing help doesn't mean she isn't great! We also talked about how she will learn to do these things by herself again and even if she doesn't it is OK. We talked about how when bad things happen we have to look for ways to be happy even when it is hard. She talked about not wanting to forget things. She wants to remember this day forever.

She said, "It is easier to be happy"
I said , "You are right but sometimes it is OK to be sad, mad and angry. We just don't get to stay there forever."
She said, " Being sad and mad forever would be miserable." What an insight!
She said, " I want to help people have hope and be happy."
I told her she already has.

She talked a lot about frustration and worry. She is really processing a lot of things. She has been worried that if she didn't work hard enough she couldn't go home. But she is also tired a lot. We are trying to help her learn to pace herself. She needs lots of "Brain Breaks" and the rest is just as important as the work.

We are so grateful that her memory is intact but the Law of Opposition is in play in this situation just like every other thing in the universe. Her memory makes the recovery so much easier but the emotional side of accepting her limitations is actually really hard to help her through.

Often times TBI people don't remember what it was like to do all of the things they used to do. In that ignorance there isn't any loss. Maddi remembers everything and so right now she has to come to terms with not being able to do what she remembers. Her attitude right now is remarkable. Gratitude is her most frequently used word with Blessed tied for that rank. I am so grateful that she has that internal hope, gratitude and optimism without that this rehab would be so much more difficult.

I am sure we will hit some rocky patches but overall she has inspired me in her ability to find happiness.

We have had a hearing test -All is perfect there.

We had an X-ray to see what is going on with her diaphragm. It really isn't moving or changing when she is inhaling or exhaling. We need to determine if she just hasn't found the muscles or if this is one area that the damage could be permanent. Only time will tell.

Friday we do the vision screening. We think we will see somethings there but don't really know what to expect.

She will also be having a scope done to look at what her vocal cords are actually doing. That will be sometime this week also.

Cognitively Maddi is doing so well but doesn't have the stamina for long term thinking or attention. All of the things we are working on are buried deep inside the brain and we just need to "tease" out the quirks and make sure her skills are well developed and that we know what to do to help her rebuild those pathways correctly.

If she practices a skill incorrectly because of the impulsive behavior or lack of attention, right now it has a huge possibility that those errors will become permanent. So it is about making sure we do the right things. When I said that learning to walk and getting her "speech" back was the easy part, I wasn't kidding.

The Speech and Language things that we are doing are so critical and so sensitive. Rewiring is more difficult and easier for someone like Maddi. She remembers, so she overestimates her abilities so errors happen, but at least she isn't starting without any prior knowledge. This factor is why it is so important for someone to be with her always during this stage of relearning.

I have been "dreaming" of going back to school and one of the areas I considered was Speech and Language Pathology but I really wanted someone to pay me to do brain research on why some brain pathways are found in kids and some are just missing. I wanted to figure out how those pathways are made and how to facilitate them in a more systematic way. That was all before this little hiccup in the road. I find it curious that here I am. Maddi's biggest need right now is Speech, OT and she is recovering from a brain injury.

I am grateful that I have been obsessed with brain research and how kids learn and adapt to learning differences for all of these years. I have felt compelled to read things that should have been the equivalent to a powerful sleep agent but I have found them fascinating. It has helped me in working with Maddi. Now that obsession has way more focus than before.

Knowledge is Power but.....
Attitude Overrides Knowledge and
Gratitude directs Attitude and Use of Knowledge.

Monday, January 10, 2011

A Three Day Cycle

It Takes About Three Days...................

We have entered a stage of continued growth but it is more subtle and internal for Maddi. We spent so many days wanting her to walk and talk. With her doing both of those things it would be easy to overlook the other things we need to work on. One of the two goals have been met for the most part in physicality and the second needs better tone and volume for this stage in the mechanics of talking. The physical stuff is the easy part. Maddi is walking very well, she still needs work on balance and stamina mainly. As for talking, that is where another long journey begins. All of that must be accessed internally through Maddi and like everything else in the brain it is as individual as each person.

Being a data driven teacher I tend to take note of little things like how many times she needs to try things before she begins to generalize the skill, how often she repeats the skills and how long it takes to master it. Maddi's pattern is about three days after introduction of the skill. That is where I get the "It Takes About Three Days".

Working with her body if she is shown what is wanted and you stimulated the correct muscles and make her do it first, she could then learn to activate that skill. It would take her three days of working on it until she could do it independently. That was the easy part. All of the other cognitive things you can't actually reach out and stimulate the muscle to create a response. It is much like entering a labyrinth and hoping you find the right pathways to follow. It is not an exact science.

In terms of Speech and Language, Maddi's work is two fold, the mechanics, and the cognition. She needs to work on the mechanics of speech to increase her volume and to lose the whisper sound that she has. Part of her whisper is rooted in the abdominal muscles needed for volume so PT is working on that with Maddi. It seems that she hasn't found those muscles yet but there is still the chance that there is actually some paralysis or damage from the breathing tube (intubation). It is too early to tell right now but it is definitely on the top of the watch and wait list.

As far as the cognition part she is doing pretty well but there is still the rate and appropriateness of speech. Right now she has no filter, meaning if she thinks it she says it. Teaching that filter is a high priority but must take an understudy role until she can slow her speech down and gain better understandability. Her brain is going so much faster than her body that the synchronization is off.

I kind of compare it to watching a YouTube video that hasn't buffered right. The sound is coming out good but the mouth is in a delay cycle. It isn't the same but she thinks it but by the time she gets it out her brain has moved on to the new topic. It makes her talk super fast and she drops words that she is thinking but hasn't spoken yet. It will come but it is a skill that she needs to work on.

We have been told so many times that Maddi's recovery is classified as miraculous. Maddi's memory and recall is pretty amazing. Her retention of previous skills and rate of recovery are remarkable That being said there is still some questions about some areas of cognition. I hate to even write about any of those deficits in question because we are too early in the recovery to really make that call.

Here is what my gut says on those skills that are lagging behind. She has really advanced skills for this early in the recovery so we want or expect to see all the connecting skills come at the same rate. I know that there is a direct correlation between skills and how they emerge but nothing Maddi has done followed an "average" trajectory so we can't assume that she will do anything by the book. So, I believe that perhaps those skills are just emerging at an average or less than average rate rather than the advanced one. I have no proof but I am also not one to solidify a deficit during a rapid growth cycle either.

We have two variables, time and injury. What we know about her injuries makes absolutely no sense in the context of what she is currently doing. So setting expectations and plans based solely on the specifics of the injury doesn't seem helpful. Time allows us to watch what Maddi IS doing and adjust the plan of care based on that. So right now time is on our side.

That is not to say that Maddi won't have deficits because I am sure there will be some however I don't think they will be insurmountable. Perhaps the cascading effect of emerging skills will follow a surprisingly different pathway. Maybe it is hopeful thinking but maybe not.

The brain is an amazing thing. The more you study it the more you understand how little you know. Based her injuries, scans and such she shouldn't be able to do most of what she is doing. I always knew she was brilliant but watching her relearn is fascinating.

As for new things is all about the subtly of the task, attention and impulse control. These are all a huge aspect of her recovery right now. She can read and comprehend but if you give her a test she will verbally answer correctly but mark something completely different. It really isn't that different from where first graders begin. She is able to count money and give change but over time becomes tired and starts making simple mistakes. Her ability to fight the impulses of just marking or answering the first thing to pop into her brain is so difficult. First graders often do that too but over time and persistence they can learn to control it and so will Maddi.

We are so hopeful but realistic about where we have been and where we are going. She describes her brain like this.

"Inside my brain feels the same but my body won't answer. My body needs to catch up."

That being said somethings may take longer than "Three Days" but as I always say in teaching. It takes as long and it takes and rushing it doesn't better the situation.

It is all about TIME and PRACTICE.

Sunday, January 9, 2011

The Synergy of LOVE

This post is from Maddi's dad. I haven't written many posts, in fact the number of posts I have written could be counted on only a few fingers. Writing is Bev's area of strength not mine. But, after scrounging up a temporary computer, my laptop should be at "Primary Computer's Medical Center" after suffering a "THDI" (Traumatic Hard Drive Injury), and reading Bev's post I have to write one of my own, just leaving a comment would be insufficient.

I cannot count how many times Bev and I have heard any of the following.

"... you make it look so easy."
"... I know that I couldn't do what the two of you are doing."
"... where do you get the strength you need to carry on?"
"... how can you possible divide your time between Maddi and Brooke and Mason back home, and make it work?"
"... the two of you are so strong, how do you do it?"

Well, let me give you a little hint. This isn't easy! For every time a comment is made like one of those listed above we often feel like we are just hanging by our finger tips, its just not obvious to the casual observer. I see things visually and Bev says I have a Cartoon Brain because of the way I try to explain thing to her, so please bear with me. Like I said, this is NOT easy, it is the hardest thing either one of us has ever done. We feel like some cartoon character that has fallen over the edge of a cliff and is hanging by the roots of some plant that is growing out of sight, hoping that there isn't a tag on that plant that reads "Acme Gardens". I can't begin to imagine what this is like for Maddi, insert here some scene from the "Road Runner" or "Bugs Bunny" where the impossible happens. I can only comment on what I know and feel.

Now let me explain why it is that we seem to make this whole experience appear easy. First, if not for our faith in GOD and his love for us things would not be as they are today; Maddi's recover would not be the same as is now, or will be, and our ability to cope would have dried up on day 2. Bev and I have what we feel is an extremely special relationship, we have learned that there is nothing that the three of us cannot accomplish. When referring to the three of us I mean Beverly, Myself and GOD. When Bev is having a moment of weakness, and for her they are very short moments, I am there for her support and for her to lean on. And, when I am having my down times and moments of weakness, of which there are many more, I have Beverly to lean on. Together we complement and complete each other in a way that provides a great deal of strength for each other, and that is before we include GOD in the equation.

Just as Maddi grows stronger every day, Beverly and I, and our relationship with each other and our relationship with God, grows stronger. Given a choice none of us would choose to go through this again. However, we don't have the option of making a choice, so we have to work hard every day to make the best of what we have.

I wish to thank everyone who has provided us with help and support. Both family and friends, though the line of distinction between the two has blurred, THANK YOU. Beyond having each other we have countless others who have been there when we've needed that little extra something. You know who you are, and if you are reading this post then you are one of our supporters. There, now you too are a statistic. These kinds of things, the accident and Maddi's injury, always seem to happen to the "other" people. And now the John and Bev Sanders family are now part of the "other" people, and so are you by being there and supporting us. THANK YOU!

On Maddi's FaceBook page here status once read; "I am an Awesome Ninja". Maddi is an Awesome Ninja and proves it everyday when she defies medical science and does what the doctors say she should be able to do. Well, even "Awesome Ninja's" need an awesome MOM and Maddi has one. Bevely has teaching in her DNA and that is just what Maddi needs. Thank you Beverly for being who you are and for being able to motivate and teach Maddi the way you do. I love you Beverly, you are an "Awesome Ninja, Mom".

I didn't know I had that many words in me.

The Future Looks Bright

Up until now I have purposefully not allowed myself to think much about the future because there were too many unknowns and fears to chase around. Today, I can truly say I can look further in the future than 4 hours. I am apologizing in advance for those who just want details about Maddi. When I started this post it developed a life of its own. If you don't want reflections from a grateful mom you might want to skip this particular post. This one is more about my internal state than anything Maddi is doing.

I am so grateful for the miracles that are happening for Maddi! I know it is from the faith and prayers of so many who love her and from the Grace and Mercy of a loving Father in Heaven. I know it has a lot to do with hard work and determination too but really only God could create such a miraculous recovery for Maddi. Nothing any of us have done would have made any difference if it wasn't HIS will.

I know that for awhile when I prayed I was afraid to ask for anything for fear I would ask for something that was against God's will. I could only pray that he would bless Maddi and that we would be strong enough to accept his will in this matter. It wasn't a matter of lack of faith that God could heal her, but not wanting to push for what I shouldn't.

I really wanted to cash in all of blessings for the whole of my life in this one place and never ask again for one single thing and beg for a miracle. Not that I didn't beg because I did, but adding the "Thy will be done." was agonizingly difficult for me. I hope that none of you reading this post ever experience this first hand. This has been the most difficult thing I have ever had to experience and that moment of not asking when I wanted to scream for his mercy for Maddi, I believe will remain undisputed forever.

I was more than desperate to have my little girl back laughing and whole, but I knew there weren't any guarantees. Not everyone gets the miracle. Sometimes the plan is about growth and endurance not full healing. I feared that road more than anything but I have never let fear stop me before so I just kept moving forward.

I also know personally people who are learning to accept what God's plan had detailed out for them and it wasn't something you would pray for. My heart aches even now for those who have lost loved ones in one way or another. I wish I could carry their burden for them just for a day but I would probably buckle and break under the weight. I know that I am not any more deserving than others who are suffering so I had to be willing to put on God's Team Jersey regardless of the personal outcome.

I know that God wired her brain the first time so he could do it again but I didn't know his plan. I also knew that many people were praying for her and exercising their faith as well. I wanted a miracle for their sakes too. I didn't want our experience to shake the faith of anyone fasting and praying for her.

The miracles have happened and I am so grateful! I know the power of God and am so humbled that he granted the desire of my heart. I know we still have such a long road ahead but at least I don't fear the road as much. My knees are no longer shaking with each step and my heart is pounding for a different reason than fear. The pounding is for gratitude and reverence for a Lord that would see my need and fill it. For a Loving Father who would grant me a miracle though I am undeserving of such an intervention.

I know it is all about Maddi and her faith, strength and abilities. It really has nothing to do with me but my journey through this has been one of monumental proportions. It has altered me forever. I felt indebted before the accident to my Savior and was dedicated to following his plan and would have never wavered. But I can never in a million lifetimes repay the gift that has been returned to me in these miracles of movement, memory, voice and love. I have nothing but what he gives me.

Even the ability to fight when the fight was needed was granted as a gift. All of the work I do with Maddi comes from a lifetime of gifts from the spirit in teaching and the divine guidance to work in the places I have worked doing the things I have done. I have been inspired and taught what is needed with Maddi. I can't explain it. I have always believed that God endows you with what you need to get through but in this experience it hasn't been some abstract concept people talk about and hope for. It has been real! Ideas have just surfaced in my mind and skills have been there to accomplish the task.

If anything I am convinced of my smallness in God's realm, while at the same time he convinces me of my importance to him.

The words to Amazing Grace pop into my mind so often. I am not much of a singer these days but I would sing this song to Maddi while she was recovering. I would lay next to her in her bed, holding her tight and sing. I don't know who it calmed more but when panic would rise in her eyes I would begin. I couldn't do much to reach her then but somehow this music did.

T'was Grace that taught my heart to fear.
And Grace, my fears relieved.
How precious did that Grace appear
The hour I first believed.

I grew up in the Bible Belt in south Texas but being taught of a loving Father I didn't understand the fear talked about regarding God. I have a deep understanding of this verse in its entirety now.

The Lord has promised good to me.
His word my hope secures.
He will my shield and portion be,
As long as life endures

Not only has God been my shield but he has granted more than my portion and my hope is secured and his promises are sure.

It has been amazing to hear all the things Maddi has to say about the time that she was "still and quiet". I feel so privileged to hear them right off her lips.

One thing she wants everyone to know is:
"Jesus is my brother and he loves us. He want us home".

Saturday, January 8, 2011

Schedule and Technology

Technology is such a great tool but is so vulnerable to dead zones and dependent on cording and such. I have been without my computer for two day because my power supply was severed some how. My cell phone doesn't have service in the hospital. I don't know which addiction is worse, mine to technological devices or the devices and their need for electricity.

I mentioned that I would put up Maddi's schedule so that visiting could be addressed. Maddi is scheduled down to her potty breaks and everything takes three to four times longer to get done than before. So here is a list of the big things going on and of course it is a rough sketch that will be "tweaked" in the weeks to come. I am going from my memory which includes all the transition times moments in between. They will actually print out a schedule for me this week that will be rock solid and unbend-able!

8-9 am
OT and Daily ADL's ( basic grooming, teeth, hair, dressing etc.)
9-10
PT
10-10:45
Speech
11-1:30 pm
Rest/ Bathroom/Lunch
1:30-2:15
OT
2:15- 2:45
PT
2:45- 3:30
Speech
4-7
Quiet Recovery Time
7-8
Shower/ ADL's
8pm
Bedtime

Music Therapy is after this sometime and hasn't been rigidly scheduled, as of yet, but will be. In those times between we are drinking and taking care of other business. This doesn't include any school which will eventually be part of what she is doing too. This list doesn't include Doctor's rounds and evaluations and other things. All of which takes time!

So hopefully those of you who have expressed an interest in visiting can see my quandary. By the time she gets back to the room she is so tired and desperately needs the quiet time for her brain to continue healing. Too much stimulation is not as big a deal as before but is still something to be careful with. That being said the best time to visit would be:

Visiting Times:
Sunday anytime after 11:30. The branch meets before this time and we will be going as a family. That way we can spend Sunday all together. We do plan to go home at around 5 or 6 just to get ready for the new week.

4-7 Monday through Saturday

Saturdays can be different and really busy with all her therapies in the am and family time (passes) in the afternoon. The time spent away from the hospital on Saturday really makes her tired and stimulates her a lot and she needs her quiet even that much more. I know that these times are not the best for people but that is just the reality of our lives right now. It all depends on Maddi and what she needs.


It is imperative that you call or email before you come visit right now.

Email is the best way to contact us because cell phones don't work at Primary's. I do try to check messages on the way home but I might be staying more than coming home. Here is my email if you don't have it. I try to check it often but can't personally respond to every message. I wish I had the time to do that just out of gratitude for all of your support, prayers and love!

bevsanders217@gmail.com

We try to go home to Nibley between 4-6 depending on the day so the week nights are hard. Sorry our times are so tight but it is a crazy life we have right now.

One of the things they have cautioned us about it that there has to be the correct balance of work and rest for the healing to be lasting and most positive. If we push to hard with to little quiet then it creates more confusion and a muddled recovery for her. It is fascinating how the brain works!

After having talked for 2 hours one morning she said she had a headache. I asked her why she had a headache and she remarked that it was too much thinking. She remembers so much and the things that she doesn't are simple things like not knowing the year 2010 was over or the name of the hospitals she has been in. Well, we didn't have a big party for New Years and I didn't think to tell her the date every day, so it makes sense that she wouldn't know that. The staff here are truly amazed at her recovery. I will have to write about that for another post.

Some of you may be wondering what it is that I do all day while at the hospital. Well, I go to all of her therapies with her and they are instructing me as to how best to help Maddi to cement the learning in her brain. Retention and consistency are the key work and words here.

During the off times it is all about making sure Maddi consumes enough calories NOT to need a G-tube feeding and that she gets enough rest. That takes constant vigilance and dedication.

Trying to get Maddi to turn off her brain right now is the most difficult thing. She just wants to talk and learn and talk and learn. It is almost like her being stuck on a Manic setting. She says, "I have lots to say to make up for all my quiet." "I have to learn to go home."

She is determined to go home. She knows that she has to learn so many things and she keeps saying, "Tomorrow, they will discharge me so I can go HOME." We bought a calendar so she can mark off the days. She was a little depressed at how many days she has left. I marked it for 7 more weeks but hopefully it won't be that long. I actually depresses me if I think about it too much. She wants to go home with us right now! She is desperate to learn so she can go home. I don't know who is more desperate, Maddi or the rest of us.

We were granted a pass today and we went to Olive Garden for Spaghetti, of course. Maddi also wanted to go to a bookstore to get the next book in the series she was reading before Thanksgiving. She remembered the author and title of the book, "Seeing Redd". I figured even if I read it to her that could be fun. She found the coveted book and we found a comfy chair thanks to Mason and we started reading.

I was utterly amazed that she read it so well. It was more of a voice issue than a reading deal. She read 2 pages without any trouble. I asked Maddi when she was using sign if she could read and she said YES. I needed proof to be sure she could. Well, today I got that proof. It took her a little more time and effort but she read it without any trouble and she could tell me what was going on and what had happened in book # 1. Insert another happy dance! I need to learn some new moves.

She has this amazing linguistic mind. She has gone through the entire alphabet and compared words that sounds like letters. For example; "you sounds like the letter U, see sounds like the letter C". She also is rhyming everything. I think it is interesting to note that she did the rhyming when she first learned to talk as well. Sometimes she says crazy things that I have to figure out and then sometimes what she says is so profound that you wonder what else she experienced when she was "still and quiet" as she says.