Quick update

Maddi is moving back to Primary Children's Hospital today. Just a reminder this is a planned move. More details to follow.

Primary's, Food and Math

Best News First: The recommendation of the Doctors are that Maddi should move back to Primary Children's on Friday! This marks the beginning of the end of the hospital stays! That means be could be home before Maddi's Birthday! That will be such a happy day! It doesn't mean the work part is over but the leaving her alone every night will be over. We won't be torn between two worlds. We will have the option to just hang out together watching "The Big Bang Theory", "Bones" and "NCIS" in our own living room. Hopefully we still have new episodes by that time.

She has started crying when we leave. It tears my heart out to leave her but the balance must be levied to keep the family intact and strong. Brooke and Mason are every bit as important as Maddi. Their needs just don't scream at us. It doesn't make them less of a need.

Maddi understands and knows that we have to leave just like Brooke and Mason understand that life is crazy right now. We have asked her about it and she understands but it doesn't make it an easier. We read the Book Of Mormon and pray with her every night before we leave and in every prayer is included the petition for Maddi to be comforted, to feel loved and not alone.

Today started out with Key Lime Pie! Yogurt that is. When we got to the hospital early this morning Maddi was already out of bed and sitting up just waiting for us. She looked so good. We had stopped at the market to get a few foods for her. We picked up Key Lime Pie Yogurt and Spaghettios.

She was really excited about the yogurt. We didn't show her the spaghetti until lunch time or that is all she would have wanted. She ate the entire container of yogurt and did a great job with it! At lunch time she ate the entire amount of spaghettios without any trouble. She was so happy!!!

After the morning food happiness, we went on to coloring. That skill is coming back so quickly! She gets bored easily but we just move from one activity to another. We turned the paper over and she used gel pens to write and draw. She, of course drew smiley faces and hearts. She then wrote the word Math. I asked her if she wanted to do some math and she indicated yes.

Not knowing where to start I chose basic addition. She was amazing with no hesitation, she answered all the doubles 1-10. I wrote the problem she wrote the answer. She seemed a little insulted by my early first grade math so I tried an early algebra equation; x+4=9 and asked her to solve for x. She immediately wrote 5.

I was impressed with the amount of logic going on in her brain. We tried an equation with division and she didn't attempt it but we had been doing the math skills for a while. So we moved to writing words. I asked her if she had any other words in her brain. She wrote Hell, hello, smile and math. That is pretty amazing. This was all before lunch!

PT and OT are both working on lots of different skills. Maddi zipped up her coat today and learned to drop a ball from a two handed, arm extended grip. That sounds easy but it is actually quite advanced in terms of skills. She also lifted weights with her arms and tried some running. She is basically walking unassisted but she is a little unpredictable. You never know where she might go.

One of the things I have been working on with her is washing her hands and brushing her teeth. She is doing great in both ways! Obviously, brushing her teeth is more of a challenge for her.

Today, she spent a great deal of time going over the sign language alphabet with her hands. She also was repeating all the signs we have been using over and over again too. We are still having a little trouble with the directionality and I am not fluent with signing "Maddisized" so I am missing some cues but time will work that out. I am just amazed at how much she remembers and can tell us. We couldn't remember the sign for her name and we asked her and she didn't hesitate to show us.

Maddi went to music therapy with the rest of the kids on the floor. It was kind of fun but part way through she was done and let me know about that for sure! They played drums, shakers and worked on making sounds with her mouth. She made the sign for friend to one of the girls named Laura. Laura is a remarkable young girl! She takes care of those kids on the floor. I have watched her ask about the other kids and try to help them. She may be disabled but she knows how to "bloom where she is planted". She is serving in her little world. I am so awestruck by the brilliance of her spirit! I have talked about how sad it is for these kids not to have people to love them. Well, they do and her name is Laura. I know that isn't the same as family but what a testament to the pervading need to love and be loved and the strength of the soul to shine through the disabilities of mortality!

Laura is always asking about Maddi and comes to visit her. She really is interested in Maddi getting better. Laura lives full time at South Davis but she is pretty verbal. When Maddi came into Music, Laura and Caroline had to move to sit by her. Both Laura and Caroline were so excited that Maddi was there! Laura asked me to ask if Maddi could be her roommate. She was so sad to know that Maddi would be leaving and not staying at South Davis.

Her direct quote was: "I don't want her to go. She is my friend. I want her to be my roommate."

After I told her Maddi was going to be leaving she asked why and I told her so Maddi could get strong enough to go home.

Laura said; "Home is better. She is doing good. Maddi needs to be home".

Now, I know that Maddi is still learning and so our Laura and Caroline but it is interesting to note that when the "Spirit" of the person is in charge kindness is the result. Contrast that to when the "Natural Man" takes over.

I call the following event the "In and Out Burger" based on where it took place. So if you ever hear me say they just pulled an "In and Out Burger" you will know what I mean. We have all made a bad choice at one time or another and I am not attempting to pass judgement on these specific girls but it illustrates well the point that though Laura will never achieve the things or have the life that these girls will but she has learned and implements naturally an eternal skill that esteems her in the eyes of her Savior.

Here is the story:

John and I were at a fast food place right before Christmas and a youth group was there either coming from or going to Temple Square to see the lights. I was appalled at the mean, unbecoming nature of the behavior of some of those girls. A particular group was intentionally leaving out and mistreating this one girl. They were really good at it. They were all syrup and sugar when the adults were around but were vinegar and brine when out of earshot.

They were whispering and talking badly about this one young lady. They made sure she didn't have any way to sit by "them". I am sure those girls either didn't care if anyone noticed or felt completely justified in their behavior. I am sure that this other girl had her quirks but.......... really........... does that make it OK?

This is not to say that we have to like and hang out with everyone but honestly would it have killed those girls to be kind. I have seen this same experience recreated with first graders over an over again. It isn't that parents haven't taught civility, teaching has been there but the long term practice in every setting hasn't happened. The Natural Man is a strong willed and difficult to tame. I have always had little toleration for that type of pettiness and have always policed this stringently, but this experience has given me a new perspective.

Maddi is still in there! She is the same as she has always been. Her spirit hasn't dimmed in any way. Mortality has given her a ride she would never have chosen but she is standing tall and doing her best! How many times do we feel like we should be more or better. Maybe that is our spirit trying to call the shots and asking the "natural man" to take the second chair. Maybe we should listen to that call a bit more.

Maybe, when we are irritated beyond belief by that less than favorite person we should look beyond the hair color, designer apparel and achievements and look inward to the soul. The brilliance of a soul can be easily overlooked if you are distracted by the world. Maybe if we can see the brilliance of others, maybe we will be convinced of our own brilliance in the reflection. If we could only see our selves from the eyes of our Savior who loves and knows us more than we know of ourselves. We would see what we are meant to be!

Anyway, I digress again. I have mentioned that this experience has so many more elements than just Maddi's recovery. I am a people watcher by nature, as a way to collect stories and see human behavior at its best! Every now and then, an "In and Out Burger" creeps up on me but for the most part, I see Brilliant Laura-s in many places. This experience has shown me many examples of amazing people doing their best everyday to make a difference in their small little circles. I hope I can do the same.

Pictures instead of a 1000 words. :)

Shopping at Wal*Mart.

Leisure time, coloring.

Ready for bed.

Making a heart.

Trading places.

Santa's Helpers

Santa's Helpers pause for a photo shoot.

44 Steps, a Shower and a Spoon

Today started out like most days do with the 75 mile journey to the hospital. I usually do OK once I get there but right now I am having such a hard time wanting to leave my bed in the mornings. I think it has a lot to do with........ maybe............. stress and not being home much. I am having to literally drag myself out of bed!

I know that Maddi is working so much harder than I am but she is young and I am feeling as old as the dirt at the bottom of the compost pile not the top. The constant driving makes me weary but I will do it until Maddi can come home!

44 Steps

There are 44 steps from the main floor up the the third floor where Maddi's room is at that hospital. PT and OT are done on the main floor. I have felt the compulsion to take Maddi on the stairs just out of sheer curiosity but I haven't dared to try it. Matt the PT guy did take the dare and Maddi walked up and down ALL 44 steps alternating feet on each step just like any other 13 year old girl would do. That shows incredible stamina and focus for her to maintain that walking rhythm on the stairs. Matt declared a "no elevator" policy for Maddi as part of her everyday tasks.

Flashback to when we were having to put check boxes on the white board to indicate the number of times Maddi just got out of bed! Amazing!

A Shower

Usually our day begins with a shower using a shower chair for Maddi to sit on. Today, however, Maddi wasn't having anything to do with the shower chair! Having Maddi communicate with sign language is such a blessing except for when our ideas don't match (envision a sly, sneaky smile on both our faces). Maddi hasn't been "safety certified" to stand in the shower yet but she refused to use the chair. I am all about rewarding agency and self awareness.

So, being the mom that has always cheered on every new step, I set up the rules of engagement. I told Maddi that she would have to hold onto the bar and stand there until we were completely finished. I put the chair in the shower area as a precaution and a consequence for not following the rules. Well, Maddi followed all my safety rules and she did fabulous in the shower.

She stood the whole time and held onto the bar except when she stepped away from the water when it randomly went from warm to cold. She enjoyed that so much more that using the shower chair! I was excited because I didn't have to pound on the wall to get her out of the shower like we have to at home. I am sure the shower dawdling will return just like everything else but for now I will enjoy her quick ones.

Let me break down the complexity of a shower for you. First you have to stand and keep your balance ( which is HUGE!). Then you add water and soap to make it slippery. Next, you add the whole body sensory part of feeling warm water all over your body with air cooling you too and in our case the random temperature change from warm to cold. Finally, you also have the sheer stamina it takes to stand long enough to get everything clean.

Most brain injury kids at this stage cannot even attempt that amount of sensory input and keep their balance without the slipping risk much less the cold water too. So here again, Maddi has always been an overachiever and this experience is not exception.

The other thing we did today was let Maddi try using the spoon herself while eating chocolate pudding. She actually did a pretty good job of it! She even took the time switch the position to lick all the pudding off the spoon before going for more.

Maddi using sign language has been wonderful! There is just one tiny drawback for us right now, directionality is a problem for Maddi still and some signs are pretty similar. Two signs look fairly similar especially when Maddi is tired.

The sign for the bathroom is formed with the "t" position; the thumb between the first and second fingers in a fist and then you twist or wiggle your wrists a bit. The sign for yes is formed by making a fist with the thumb in the "a" position and you bend your wrist up and down like shaking your head.

Well, with Maddi the "t" position is a little weak but she can do it. We were talking to Maddi asking yes/no questions and she became pretty animated and actually almost punched me in the eye with one of her hands and then proceeded to go for a double black eye. She never touched me but she was obviously trying to say something. When I took a closer look she had her thumb tucked but not in a "t". She was literally yelling at me to ask for a visit to the 'Loo". I had to laugh out loud with that one! She was talking and I was the one not "listening". We took care of business and all was well but her little personality is shining through so much more with the communication part going on.

Just an FYI a teenager can give attitude using absolutely no words using sign language. Just today I have seen an I don't really care no, an emphatic no and a whatever no! I have seen apathetic yes, absolutely yes or an if I have to yes. Pretty amazing. I guess I will have to coin the phrase, "Don't you sign in that tone with me, young lady".

It is official that Primary Children's Rehab team will be coming to evaluate Maddi tomorrow. That will be a happy day once we get rolling over there. Then we will have a tentative HOMECOMING date to look forward to! Today was great and tomorrow will be just as good.

Applesauce, Candy and Combing

Maddi ate a whole bottle of applesauce today at one sitting! She used her lips to close around the spoon. It won't be long till she is holding the spoon herself. She was pretty proud of herself. I am pretty sure that when the Speech and OT people get a glimpse of her progress on Monday, they will be so impressed. She also used the sign for "more", "done", "yes" and "no". I asked her if she wanted a blanket and she gave a resounding yes. It is amazing to be communicating with her for the first time in six weeks. It is starting slow but it is great to have her able to get her needs met.

She also spent a great deal of time grooming today. It was the first time for her using the comb on her own. It was fun to see her combing out any tangles she had. That is actually a pretty advanced OT skill. Her hair is so soft and pretty. I think she has good reason to enjoy a good combing.

Maddi, Brooke and I spent a bit of time coloring today. John and I found these cool crayons that are smooth like silk. It is a bit addicting. Maddi was very focused today while coloring and her fine motor skills are becoming more refined. She gets a little stuck on the same area and needs a little prompt to color somewhere else but she is becoming much more aware of the space around her in writing and coloring. You can see on her face her frustration when I ask her to draw something. I think she remembers how much of an artist she was before and is confused why she isn't able to do it as easily.

While writing on the white board Maddi wrote the word candy but spelled it with an "i" at the end. The Mason and Brooke were eating random candy from our basket and I think that she was feeling a bit left out. We promptly got out a candy cane and let her have a bit of a taste. The look on her face told me that it wasn't what she expected but she liked it well enough.

Maddi also went to church today at the hospital. When we arrived at the hospital she was already in the day room and they are beginning the service. We hadn't planned to have her go but I stayed with her. They brought out instruments during the songs and Maddi enjoyed shaking to the beat. The young men and young women from an outside ward were there too. I am grateful to have been a part of that service today. It was a little sad to me that those kids didn't get to go out to a home ward. I don't know all the details concerning the why's and how's but for me I want my family together during our worship. It has definitely opened my eyes to the different callings that I had no idea existed. I am sure the blessing are shared on both parties.

To be completely honest I really struggle watching these children being alone everyday except for those people who are "paid" to care for them. I believe that everyone deserves to be loved and wanted. I guess I have the Ellis Island Complex. I have change the mantra a bit for the circumstance "Give me your.........forgotten masses" I want the take the forgotten ones home with me. There are some of these kids that have been in this facility since they were babies.

I have watched the opposite choice being played out with a mom and her son. They sit in the same place everyday. The mother is hunched over with age and crowned with an aura of silver. The son is middle aged and mostly unaware but yet everyday without question that mother is there in the same chair feeding him breakfast. I doubt that she has ever heard the gratitude expressed by this man but the love shared between them is unmistakable.

Another example of enduring to the end is a beautiful couple who were working with their middle aged son as well. They were doing range of motion and stimulation with him in one of the therapy rooms that Maddi and I were in. I ended up talking to them for a time and they told me their story. Their son went into his room one night and went into an unexplained coma. That was six years ago. They haven't given up hope for him yet. They make sure their son knows he is loved and not alone in the world.

I don't know why these people are assigned to be stuck in a broken body but their spirits aren't broken. I know that love is just as essential for life as air and food. We spent hours working with Maddi to teach her to hold up her head. Most of these kids can't do that but I wonder if they had someone to love them if there would be a reason to hold up their heads.

Maddi is doing well and it seems that she is doing something new everyday. The smile count is up to four confirmed, one with a dramatic upturn of the corners. We still have a long road but the journey is moving along. Some days the clouds of doubt and worry loom overhead, but for the most part I feel so grateful for the blessings and miracles.

The Joys of Pudding

Today was all about pudding! Maddi has been giving the indications that she might want to try some "real" food. Those indications include the intense glaring coming from her baby blues when John and I eat something in front her and the movement of her mouth and tongue. I was told by the Speech Therapist at Primary's that Maddi needs to see us eating and that we needed to exaggerate how the lips and tongue work while eating. So,true to Beverly form, I went to town on this assignment. I feel that I have the worst manners in the world just in the habitual licking of my lips and exaggerated movements of my lips and teeth.

Well, all of those unsightly movements have had their desired affect. Today when I was eating a french fry, Maddi was giving me the evil eye! Wild Child that I am I handed her one. She took it between her thumb and first finger and in one smooth motion popped it into her mouth. She didn't quite know what to do with it once there but I wasn't disappointed in the least. After the french fry scare I went with a Hershey's Kiss and just rubbed it on her tongue and let it melt. I had tried that a bit yesterday but today I was pretty aggressive. She LOVED it!

John wasn't satisfied with candy, so he went and found chocolate pudding. If you have been following the blog, that was one of the first things to spark a reaction with her, long ago at Primary Children's Hospital. At first we would wipe the pudding on her tongue and she would close her mouth and swallow. Then she would curl her tongue to get more off the spoon. It didn't take me very long to have her try to close her lips around the food. Overal,l she was quite successful. She ate half of the cup of pudding. Having the stamina to continue eating will be the most difficult hurdle to overcome. We were so excited. We can see spaghetti on the horizon soon.

She also tried and succeeded with another necessary task directly related to food today! She would be mortified if I mentioned it outright but it is such a huge milestone that I cannot leave it undocumented. Let's just say most Moms of two or three year old children are consumed with this task and are thrilled with its money saving results, as well as lessening the heaps in the landfill. I have been working with Maddi on using sign language to alert me to her needs. John noticed her hand in the correct formation with the thumb between the first and second fingers making a sign language "t" and she was drilling a hole into me with her eyes saying,
"Hey are you listening (seeing)?"
We went right in and sure enough she knew exactly what she needed. Again, I really need a larger scale happy dance.

Yesterday and today, we have busted out of the hospital for a little while! We have gone on a little walk that included a ride in the van. Yesterday, we went to Wal-Mart looking for a coat since her old coat was cut right off her body. We found little to be desired in that area. We went armed with our Yes/No paper to get Maddi's opinion on things. I can't even begin to have her eye for fashion. She chose a Hershey's Chocolate T-shirt and a nice pair of work out bottoms. She gave a resounding yes to those two items. It is so nice to have a way for her to communicate with us. We also visited both Grandparents homes. I think it blew them away to have her slouching in one of their chairs just like a regular teenager would.

Today, we went to dinner at Cafe Rio with our dear friends from Cache Valley! Maddi did great. We didn't even bring the chair with us. She just walked right in and sat in a regular chair and ate her chocolate flan with style! It was heartening for me to see her in a regular setting and to be sitting with our friends visiting and laughing together. It almost felt normal!

I always sit down to do a post with the intention of being brief but somehow it never happens. Honestly, Maddi is doing miraculous things, all of which there was no guarantee that she would be able to do. She was coloring with me today and it started out pretty scattered and disorganized and in a very short time she was coloring in the lines like a pro. She has the tenacity and determination to work through her obvious frustration with having to relearn things that were once so easy to do.

We have been blessed and we know that these miracles are no accident. Prayer is real and tangible, there is a God in Heaven who is merciful and loving and he has provided a way for us to be happy! Thanks to all of you who have and are praying for her. We know that we haven't made this journey alone! I need another whole blog to write about the other miracles that have happened as a result of this situation. This could either be a great Hallmark movie or a loved Christmas storybook, not that I ever want to relive it. I am thinking my viewing preferrences have been singularly converted to comedy!

Little by Little, Here a Little, There a Little, Things will be added upon!