Writing

Today was amazing! As the photos shows Maddi wrote her name and got busy drawing hearts and smiley faces! This was one area that I underestimated Maddi. According to what I was told about brain injury I didn't think that the fine motor/cognitive connection would come for a little while. When the OT guy named Dave brought out the white board I was thinking "OK????" I was literally blown away.

He asked her to take the marker and she was a little hesitant. But once she took it she twirled in in her fingers and stopped dead in a perfect writing grip! Just that alone was a sight to see. She even used both hands to take the top off! The first thing he asked for her to write a "M" for Maddi. She didn't even hesitate. She started on the bottom right and wrote from right to left. As a first grade teacher that is the opposite direction we are looking for but Maddi wrote a perfect capital M. I was impressed at the "M" but she kept on going

Then he asked her to write the rest of her name. It took some waiting but after he reminded her that the "A" was next she wrote a beautiful lowercase printer "A" just like she always does with her name and continued on with the double d's and the "i". She was a little frustrated with the marker because it was old and dry so her lines were not as precise as she liked. So, true to Maddi form she went back over the light parts to make the lines look the same. Her handwriting hasn't changed! It looks the same as before the accident. Personality is shown in handwriting and of course, she is still left handed!

After that Dave asked her to write "I love Mom". She wrote her "I" and then proceeded to draw a heart for the word love. She kind of got stuck there drawing so many hearts! I like to think she was just trying to show me how much she loves me! After that Dave asked her to write a "L". She drew two lowercase L's side by side and then turned it into a smiley face. She got stuck there too for a little while. AMAZING!!!

I will be bringing a white board and "new" markers tomorrow for our "quiet times". The happy dance is not even enough to convey my elation! I have always thought she knew what was going on but I had no proof. It was just my mommy gut talking. Now, I know for sure that she is as aware as I thought and she is the same sweet thing as before.

Attitude

The title alludes to the fact that we have seen a little attitude with Maddi today. Under normal circumstances I might be complaining about her orneriness but I was kind of doing a happy dance again. She is asserting herself in what she wants.

She actually picked up a DVD and handed it to us to tell us which movie she wanted to see. She is definitely getting better at letting us know what she wants.

The best news ever is that the insurance has approved one hour per day for PT and OT. That is amazing! One more step till we get to the three hour mark, Today she did 75 minutes without a break! Maddi is almost half way there. I have always known that she is a hard worker but she is showing Olympic Strength and Determination!

Watching Maddi walk was awesome again today. She even did some stairs without any trouble. It was kind of a funny story. Maddi was walking with Matt the PT guy, he was curious about her balance. She saw a door and walked over to it, used her hand and opened the door. Behind the door was a set of stairs that they use to help patients master that skill.

She didn't even hesitate, up the stairs she went and then she turned around and went right back down them. An amazing sight to see! This skill of walking up stairs can take a long time to master but Maddi just did it, without any kind of practice. Matt was blown away!

The OT is going a little slower more out of motivation than anything. They are asking her to pick things up and put them in different places. Now, Maddi and cleaning up has always been a little iffy but this activity seems to drive her crazy! It seems like she is bored. They asked us to find other objects that she might want to pick up.

I thought she might like some Littlest Pet Shop or Club Penguin dudes. We picked up a couple of those, I think they are pretty cool. I don't know about Maddi's opinion so we will see. She is doing better using her right hand though!

Anyway, everyday there is something new that she does, the newest thing with me is that she will put both of her hands in mine and then pull herself up from a sitting position. I have been practicing this with her for a couple of days. Now she is doing it without me initiating the action for her. It is so exciting to see her doing so many things.

Tomorrow will be another great day!

Sitting and Walking

We really take for granted how much work is involved in just the restful position of sitting. It is something we do without thinking. I wish I had asked the Physical Therapist how many muscles it takes to do the simple task of sitting on the edge of the bed without assistance.

That is the new skill I saw Maddi do today. She sat on the edge of the therapy mat all by herself. She sat with her trunk upright and even tried to bring her legs up to sit with crossed legs. Gaining trunk control is huge! The therapist was thrilled with her performance. She maintained that upright positioning on the mat for at least 15 minutes! Amazing for the first attempt. She even had her head upright for most of that time too.

She repeated her walking performance with the walker only she held her core body much better today and she used that walker to go up an incline as well. She is one strong cookie! I was really excited to see her repeat the walking thing. It takes a little coordination to maneuver the walker. Both yesterday and today she used different walkers. She holds her head at a funny angle when she walks but we are wondering about her vision. Time will tell on that topic as well. Little by little.

I jokingly call yesterday's walker the front wheel drive model and today's walker was a quad control model. She made the transition so well between the two of them. That is considered amazing adaptability for the amount of injury she has endured and the fact that she has only had the two exposures to the walkers. It also indicates cognition and problem solving skills. The fact that the wheels maneuver differently is pretty significant in how her brain is doing things. She did fantastic!

Overall she did fabulous! One would think that rewiring your brain would take more time than doing the paperwork required for this situation. Based on Maddi's progress compared to our paperwork progress, rewiring must be easier.

Oranges and Walkers

I am hoping that with the Holidays mostly over I will get back into the swing of things. It has been a struggle to balance things and to keep our spirits up. We made it through the Christmas parties and family events. Each one helped raise our spirits but was also somewhat bittersweet. It was fun to laugh and visit but there was and is a deep longing and desire to have all of my family in the same place laughing and talking too.

That being said, I am sure you are wondering about the title of this post. Let's talk oranges first. Today, I was sitting next to Maddi and I was peeling an orange. Of course, I put some under her nose to stimulate smell. She was very interested. When I was at Primary's they told me to rub different tastes on her lips so today it was oranges. She definitely began using her mouth in an eating way. I told her to open her mouth and pushed down her chin just a little to facilitate that action. She not only opened but pushed her tongue forward a little bit. It was slight but I noticed.

So being the risk taker I am, I put the orange segment on her tongue. She really liked it! She began sucking the juice out of the piece. She did eventually take a bite out of it but I had to fish it out of her mouth. She isn't "certified" to take food in by mouth. Some of you might be wondering why I couldn't just let her eat it. Well, we have to be careful that she doesn't end up with food in her lungs. If her muscles aren't strong enough then it could cause an aspiration in the lungs and it can be a very serious thing. It was encouraging to see her use the sucking reflex to take in the juice though.

I have known her ability to swallow is good, while brushing her teeth she swallows the toothpaste instead of spitting in out. She loves to suck the water off the toothbrush as well. So, yes, I am willing to try new things but I already knew she could handle it. Now, you have the oranges side of things.

As for the walkers;
PT/OT went well today. I was a little disappointed because she seemed very sleepy. She is fidgeting all the time now and I think it is interfering with her sleep. It takes so much energy for her to do all that moving. I am not a Neuro Doctor but that is what seems to be happening right now. All of her moving and shaking makes her tired. So, she wasn't as responsive with the smaller movements they were asking from her. She was stuck in her right eye gaze most of the time too. I get discouraged when she doesn't track as well with her eyes. I see the eyes as the window to the soul and it is hard when her soul seems stuck!

Well, when they got to the walking part she was all over it! She was so confident and standing tall. She is still struggling with keeping her head upright when she is doing something else. She did so well though that the Physical Therapist (Matthew) got out a walker for her to use. She did great! She grabbed onto the walker without any prompting and just started walking. We were still providing support to her trunk so this wasn't a solo event.

As we were walking across the room for the second time to go back to her chair she took a detour. She decided she wanted to go out of the gym and walk down the hall! She was completely purposeful while doing that. Even when she hit the wall with the walker she would adjust and move forward. She needed some resting throughout the therapy time but I felt like it was very productive even if she didn't repeat some of the things she had done before. Just to see my beautiful girl walking using her best runway walk with her head up for a while was fabulous!

I guess we will take a lesson from Maddi today. As we are walking down this detour in life even when we hit the wall even with our support, we can always adjust and move forward.

The Newest

I have had a difficult time writing these last few days. The transition to the new facility has been really rough and I only want to write about the happy things. I know that every good story has its element of drama and opposition but I don't want to burden those who are following with the details.

Suffice it to say that, I am deeply committed to helping Maddi get whatever she needs to have a great recovery! Insurance companies reluctantly pay for life saving needs and pretty much deny any quality of life recovery needs. I had to let this facility know that the insurance will not be dictating what her recovery looks like. This has been a three day affair and it will be an ongoing battle for me. Being able to control your own muscles is not a luxury!

On to the happy news; Maddi walked across the room today. Of course, we were supporting her trunk but she picked up her feet and moved each leg all on her own! This impressed the Physical Therapists. Prior to my setting the ground rules, I felt like they had the mistaken impression that Maddi only needed basic range of motion therapy.

Today, she also threw a ball and handed a tennis ball to the therapists many times in the same way. That may not sound like much but when you consider that she had to hold the ball with a good grip and turn her hand over to hand it to the therapists, that makes it a pretty complicated move! She is doing so well! She also sat completely upright for more than 15 minutes in her chair with pretty good head and neck control. She is making her desires known and they make a lot of sense as well.

Needless to say, the fight we are fighting is now quality of life. According to her diagnosis she shouldn't be able to do most of what she is doing. I know the reason for her great responses; the prayers and faith of the many, many people praying on her behalf. Thank you! We know that her rapid relearning is a direct relationship to a loving Heavenly Father and loving caring people.

We are also so amazed at the generosity shown to us right now. The windows of heaven have been pouring down on us during this time. That has helped me in my fight for the therapy Maddison needs. It felt so good to say to this facility that if the insurance won't pay for enough physical therapy, we would write out a check for the additional time. I could only say that because of the generosity shown by all of you! Every minute of therapy is more recovery she is able to have, so metaphorically every penny counts as one of those minutes!

Please know of our gratitude and desire to "pay this forward" for someone else in need! Words alone cannot even express how we feel in our hearts, hopefully our actions can be a reflection of that gratitude each day as we try to make a difference with others around us.

Better and Brighter!

I figured I better at least get a quick update out today just because I didn't want the blog to get stuck on a not so happy note.

I don't know if we have adjusted to them or if they have adjusted to us but things were so much better today. Yesterday they took care of the major hiccups and so today it was great to have things quiet and Maddi perked right up again! I can breath a little easier now. I really am trying to have a good attitude and that helps Maddi keep a positive outlook too.

We are still waiting on a wheelchair but that will come!

She was orienting to her surroundings and was at least responding today! The therapists came in and evaluated Maddi and they at least seemed to know her abilities a little bit. They were amazed at what she is doing. I feel better now that they have a picture of my girl as someone who "needs" and will benefit greatly from rehabilitative physical therapy.

She was taking steps with her legs and putting weight on legs and arms and was following commands pretty well. It was great to see the therapists excited to see her responses. I think they caught the vision.

Maddi is working hard and really trying to figure things out. We are starting to see emotional responses now; sadness, frustration, anger and irritation. I look forward to the next couple of stages of healing with deep trepidation. We have been warned that it isn't pretty and can be a little terrifying but I guess it is like the last stages of labor when a baby is born. Nobody wants to do it but there is only one way to be delivered. That is how I am seeing these next two stages of healing. I just pray she gets in and gets out and then moves on!

Anyway, I am feeling much better and Maddi did so much better today than yesterday! So with that said, we are looking forward to better and brighter things to come, even if they are a little uncomfortable.

Moving Day

Today, Tuesday we moved to South Davis Medical Center is Bountiful. She just wasn’t quite ready to engage in 3 hours of intense therapy yet. This is place to wait for Maddi to go to the next level and to get stronger. I have been dreading the move. I was hoping that she would be ready. I have never been patient when I have a road to walk. I am “a put the soles to the pavement and make some tread” kind of person. Waiting is not my strongest suit but we will get there.

South Davis is so different from Primary’s in that patients have shared rooms and most of the time it is for long term/permanent care. This is the only facility in the state that has a pediatric unit in transitional care. The staff was telling us that usually they have 2/3 permanent patients with 1/3 being kids just “passing through”, healing from trauma like Maddi. Right now there is only one other patient like Maddi.

It is really noisy here with all the trachs, vents and alarms going off! At first, we were paired with the other transitional patient but her needs and Maddi’s are complete opposites. Maddi needs specific and productive stimulation. The roomie needs loud distracting noise to help her. We weren’t there but two hours and Maddi already started to neurologically retreat meaning she became completely nonresponsive again. That was so hard to watch.

When they finally tracked down a chair for her, I was a little unsure what to think. The only way to describe it was a classic Wal-mart courtesy chair. I did not fit her in the least. Her feet didn’t come anywhere near the rests, in fact we used the calf bar as her foot rests and had to stuff pillows on both sides of her to get her secure. The chair didn’t come with a belt we had to use a restrain belt that we tied on. At Primary's it was mandatory that Maddi get out of bed four times a day. Here we could barely get her out once because we didn't have a chair. So after the noise trauma, the chair almost put me over the edge.

After spending 24 days trying to bring her out, seeing Maddi going the opposite way actually created a state of panic for me! I was highly agitated and it took serious self- control, I felt a little bi-polar in my response. I couldn’t decide whether to go ballistic or go into the fetal position and cry. They just weren’t quite ready for her specific neurological needs; maybe it was me who was not ready for the drastic change. I like to think that it was a bit of both.

At around 6pm they moved the roomie and now Maddi has her own room. My need for Valium has been abated. It took her more than three hours to get the peace back in her eyes where terror was before. I think it took me that long as well, maybe even longer. I know that all will work out fine and it is just a transition but I am not a sit on the sidelines kind of mom either. I need to understand the protocols and what is going on. I expect and look forward to the terror and agitation during the next two phases of recovery but only when it means progress not regression.

Anyway, we lived through day one! I am totally impressed with Doctor Murphy and her plan for Maddi. I think there was just a little disconnect between what we were told would be a seamless transition from Primary’s to South Davis Medical Center. I look forward to tomorrow and moving forward yet again.

Sunday and Monday, December 19th and 20th

Sunday and Monday were crazy busy days for us, not just at the hospital but for the family and Christmas season. We had a family party thrown in the mix of all the miles and hours driving, Traumatic Brain Injury Teaching, range of motion, G-tube and other miscellaneous things we were required to do.

So let’s start with Sunday! We started with getting dressed and doing hair. Sounds normal enough and that is entirely the point. We are working on getting her on a schedule. With Brain Injury Kids it is important that each day look more or less the same because repetition will be critical the relearning of all her basic skills.

After the morning routine, we went to the branch sacrament meeting held at Primary Children’s Hospital. It was the best Christmas program ever. The read the Luke 2 telling of the Christmas Story with Christmas hymns between the different parts. The best part was the hymns were sung by the members in the audience. There wasn’t even one talk at all. I think every ward should go with that set up!

After that there was more TBI (traumatic brain injury) teaching. We average at least an hour every day in, what I call, “workshop”, learning the ins and outs of TBI. Of course, that was in addition to our regular regime of meds and feedings.

John and I left early for the Scott Family Party! It was a great party, we were missing Maddi for sure but in Maddi style we were laughing and joking with great food and family. It was sobering if I thought about it too long but Maddi would have wanted us to have a great time so we did.

Monday was all about getting ready to move. Paperwork, Paperwork and more Paperwork! We spent more than 2 hours in “workshop” that day as well as going to the new facility to get a glimpse of what we are in for. The new facility is considered transitional for Maddi but is called home for most of the patients there. It was a bit shocking for me because I didn’t see any parents and all of the patients that day were long term, multi-need, patients. I was worried that Maddi would see herself as the same and lose motivation to work hard. She is resilient and will do just fine; it is just the “momma” worry that had me concerned.

Therapy was great on Monday! She initiated and advanced 6 steps with her legs in the standing position with the PT/OT people supporting her trunk! That is huge. The speech therapist also confirmed the yes blink that I was seeing! Talk about validation! I love it when I am truly seeing what I am seeing. In this situation there is a certain amount of “hopeful thinking” that can come into play when you are looking for purposeful movement. Here again, envision that happy dance!

Maddi is doing so much better holding her head back. She is an overachiever in holding her head forward but needs to gain better control of her head. I figured having a pillow behind her head for 24 days would make anyone get stuck in that position so I put a stop to the pillows all the time. It has made a huge difference!

Anyway, now you have the most recent update.

Friday and Saturday!

Yesterday was so busy that I didn't have ten minutes to do and update. We had a class on the G-tube, a meeting with insurance people and the social worker who helps you with all the paperwork that it takes to be here! It is amazing how exhausted I am just from the day to day stuff.

I am now in the routine of braiding Maddi's hair when I first get to the hospital. It is getting faster but it still takes almost an hour to get that job done. It is so much easier to do in the chair than in the bed! I usually play Christmas music and sing while I am braiding. Yesterday, it seemed to irritate her so today we didn't play the music. She was much more cooperative.

As for the good news in therapy, I didn't witness anything grand because I didn't get to be there. That makes for a bit of a boring post because I can't describe any new motor skills that Maddi is working on.

Speech therapy did come in and work with her and recommended the "Lip Smackers" lip balm to try and stimulate taste and her mouth. We bought her a bunch of flavors to help with that. I got a good response from the watermelon flavor but not so much from Dr. Pepper flavor. Mason says that the Dr. Pepper flavor smelled more like cherry and that is why she didn't recognize it.

The speech lady asked us to be working on yes/no responses using eye blinks. One blink for yes and two for no. It is kind of strange to try that but it really does work with Maddi. I was going to put on music for her and asked her if she wanted Christmas Music. She didn't blink at all. I asked her if she wanted piano music like Jacob and Brooke play and she did a long sustained blink. She did the same thing when I asked her if she wanted to see the playroom. Which she did. She played with some playdough while there. She squeezed it for me and let go of it when I asked her to. So fun to see her doing things!

John and I spent some time asking yes/no questions like; do you like spaghetti? She did a long blink. Do you like Owl City? Long blink. Does Mason like Owl City, no blink at all. That is pretty impressive! First off she had to remember what Owl City and Mason and then decide if he liked it or not. That was pretty complex. I am sure there is some scientist out there dismissing our report just on the variability factor but it seemed pretty deliberate to both John and I.

When I was getting her dressed after her bath today I told her to help me with her legs and she did. She lifted and bent her legs and then straightened them when I told her to. It takes her a while to respond but she did it. Most of the time I just don't give her enough time to think about and then move. The nurse tech also said that Maddi squeezed her hand when she asked her. She hasn't responded to much to all the other nurses and techs. I think she is becoming more and more aware of what is going on.

All of that is so encouraging! I totally believe in miracles. One family we have come to know well in the hospital have had a true miracle. The two year old had brain cancer and most of the doctors had given up hope for him. He and his family left the hospital yesterday. They have been here since May! They have to stay in Utah for 100 days but Cashy looked so good yesterday! He looked like an average two year old! They firmly believe that prayer is the vehicle used to bring about his great miracle. I believe that too!

I believe that Maddi will recover and will have a great life! It will take some work but I have never shied away from a challenge before and this is no different.

I know that there is a loving Heavenly Father that knows who I am and knows Maddi by name. He hears every prayer regardless of age, gender, religion and lifestyle without exception. God listens to every prayer whispered in passing and those spoken though grief and tears on aching knees.

We need every prayer offered and are so grateful for all those whispered and spoken in our behalf! We are truly amazed and overwhelmed by the goodness and kindness of people caring so much about us. Thank you!

Jazz Day

Yesterday was a busy day! It is funny how much has to be done while at the hospital. I keep thinking that I will have a moment to get some details taken care of but that never happens.

We had some fun visitors yesterday. A couple of Jazz players and dancers came to spread some Christmas cheer! We had just taken Maddi's braids out to wash her hair when they came in and asked if we would allow them to come visit. I was wishing I had finished with her hair already but we opted for the "crimped" look. I hear we made the Channel 5 news.

We had another meeting today about Maddi's care and things we need to get into place while she recovers. That meeting happened to be at the same time as therapy. We hate to miss therapy. A good day with OT/PT is the equivalent to a good report card. She did some great standing with their help and got up on her hands and knees and used her arms to hold herself up. We are still working on holding her head on her own. She is getting stronger but just isn't there yet. It will come. It take more than one muscle to hold your head up so that makes it a tricky skill.

We also had some good visitors today as well and she did awesome. Unless you understand that at one point just moving Maddi from side to side brought on a storm, you might think that is no big deal. The fact that she is getting out of bed at least 4 times a day and is handling music therapy, speech therapy and PT/OT as well all of my range of motion stretches in a day is amazing! She get tired and needs a lot of rests but she is doing so much more now than she did 7 days ago. We are excited and encouraged with the progress.

Today, when I came through her doorway she immediately recognized me from across the room. That is the first time from a distance I have gotten a response from her. Yeah!

She is moving to shift her position in bed and in the chair. That is great news in terms of pressure points and skin breakdown. The fact that she is aware that she is uncomfortable and that she will use her body to make a change is so encouraging.

So one more day and we will be on day 21 at Primary Children's Hospital. We feel like we have lived three years in those three weeks but we also feel like time is going by so fast. John has yet to get back to work. Everyday there is something new for us to learn and it is important that he learn it too. Next week is what we are thinking for now, just in time for Christmas!

A Band Aid Will Fix It...

The title for this posting has two origins.
First:

Everyone know that band-aids fix everything. No one believed this more than Maddi's big sister Brooke. Band-aids fixed everything from scratches to bug bites to headaches. If Brooke ever got a headache then she needed a band-aid on her forehead. So, here's hoping this shiny band-aid helps fix Maddi's big "Headache" (owie).


Second:

Brooke really likes (or liked when she was younger) this song by "Trout Fishing In America" called "I Think I'll Need a Band-Aid". And, since Maddi addores Brooke and Band-Aids fix everything...

There's a scratch on my finger from the cat.
I was only petting him, who'd have thought he'd do that?
And it doesn't feel good, and there's a sliver of wood
From the bench in the park where I sat.

Chorus:
So I think I'll need a bandaid (need a bandaid),
Or maybe three or four (or five or six or more)
And a bottle of that spray stuff we just got at the store.
Some sticky tape, a roll of gauze, and if you'd be so kind,
A washcloth and a piece of ice, but not the iodine.
No iodine.

There's a bump on my head from the wall.
I hit it when I was playing with the beachball.
I was climbing in a tree when I fell and skinned by knee.
It hurt, but I didn't cry at all.

Chorus

There's a hole in the sleeve of my shirt
On my arm there's a scrape and some dirt.
My friends were very sad, but I said it's not too bad.
As a matter of fact it doesn't even hurt yet.

Chorus (twice)

What Not To Wear and Big Firsts

Maddi loves this show! I think she just knows that I can"t help her with any sort of fashion sense. I have none. Today, Maddi was allowed the option to wear "civilian" clothing. We are not talking about skinny jeans and jackets but anything is better than a hospital gown sized for a large sized teen.

John and I raided Maddi's room for anything meeting the specification given by the OT and PT people. They actually do have names; Lisa and Tara. They are fabulous! I found only 2 things that would slightly pass the test if I bent it a bit. Levi's and trendy tops don't fit the description.

So, I actually entered the stored loved and hated by most Americans, Walmart. We found T-shirts with a little attitude for $3.00. Can you say score?! For the bottoms we found some great lounging pants that will work for therapy. Now, she has a few options. I really didn't find something cheap enough that she would hate so I will keep looking! I am not about to spend hard earned cash on something expensive. I like to think of myself as frugal not cheap!

So, first thing on the agenda for today was to get Maddi dressed and ready for the day. A T-shirt that has a large pencil on it with the saying,"What's Your Point!" I thought that was perfect for our little budding novelist. Day One in regular clothes. It felt so good to see her in something cute! It was encouraging.

The second thing on the agenda was a little "work" in the form of botox injections. They put two shots in each leg to help loosen the ankles preparing for when she will walk again. Without doing those shots her ankle could drop and her foot could get stuck in the pointing position.

I know she is a dancer but we don't want her walking on her toes unless it is on purpose. I kept joking with the doctors that they could just pop a couple of those between my eyebrow to take care of my worry lines. They didn't take me serious!

She gave the dude giving her the shots the best "junior high crusty" look ever! I loved it. Now, under normal circumstances I would have to correct that type of behavior but I wanted to do the happy dance again.

The third thing on the list was a cast to be put on her left leg. That will stay on until next week when her splints come for her feet to prevent that foot drop. All of this is standard with brain injury kids with Maddi's type of injury. The brain is still working out the details and it tends to misfire with those ankles and calf muscles.

The fourth thing was Speech Therapy. They are working on stimulating her mouth and getting her ready to learn to eat and talk. They start by having her smell it and then they put some on her lips. Today it was Cheetos and a Reese's Peanut Butter Cup. She really wanted the the Cheetos! She moved her mouth and jaw in just the right way. Of course, these are just indicators and not the actual movements they are wanting but it feels good that they are even trying it out on her right now!

The OT/PT people, Lisa and Tara decided to let Maddi have a day to rest after getting the new button put in. Maddi was kind of sleepy today but the anesthesiologist said expect her to sleep most of the day after her surgery. She was actually really alert compared to what I was told to expect.

Seriously a big day! Now to spend some time with my other kids! Going back and forth everyday from Cache Valley to Salt Lake City is tiresome and leaving Maddi is so hard but this is the best compromise we can come up with.

Slowly but surely!

CNA 101

Today was all about training! We spent the whole day learning about transportation and G-tubes and everything that goes along with it. John and I were given specific training on the "correct and safest" way to move Maddi from place to place. In this situation being vertically challenged is an asset! It is harder for people who have height on their side.

She is spending more and more time up and about. We have been given the green light for regular clothing now. Specifically clothing that will work well during therapy!

Yeah! Now Maddi can get her stylin' mojo back on! We plan to choose two outfits one that is really cute that we know Maddi will like and one that is stinking ugly. That way it gives Maddi an incentive to make a choice in the morning. I have never been a parent to provoke my kids but this is an exception. I guess I will have to go into a store this December after all.

Maddi now has her second belly button. They did her surgery at about 4:00. We were glad they had a cancellation, otherwise she would have had to wait until 7:00pm or 1900. She looks great without the tube going down her nose. This will make it easier for her to learn to eat on her own again and will allow for better speech as well. Little by Little

Maddi was really "quiet" today. I know she isn't speaking yet but for those of us with her everyday we have become really good at reading her moods. She worked really hard with the PT and OT today. She was actually using her whole body to try and scoot across the table today. That was really exciting. The PT/OT team want to put her on her hands and knees tomorrow!

They said that sometimes with TBI (Traumatic Brain Injury) kids, they do have a real "quiet" day after a really busy one. The theory is that they are still processing the information from the day before. I would agree with that assessment. She had a lot of visitors yesterday and she did fabulously well with all of that stimulation!

Anyway, I was joking with one of the nurses that I should go take my CNA test after all of this. The nurse replied, "Well, really you should go after the RN since you have way more clinical hours than the CNA requires."

Maddi has lots to learn and so far to go but she will get the job done. She is a worker!

I know I have said it before but thanks for all of your support through prayers,thoughts and just good KARMA coming our way! I hope that all of that positive energy is returned to all of you a hundred fold!

Quiet Sunday

It is only 10:20 so there is always time for change.

I didn't post yesterday because we took a break in the afternoon to spend some time with Mason and Brooke. It was so fun to ride "the train" with them and have normal meal at Applebee's. It was an hour wait to get that table but laughing and talking with those two kids was worth the wait. We meant to do some shopping but really didn't have the chance. I guess that will mean another outing.

If felt good to feel a little "normal" for a minute. I love those kids! I have missed their humor and their little conversations. It is amazing how much I have missed them! I am amazed at their strength and ability to cope with this situation. I have always known them to be amazing and strong but sometimes in the face of difficult things it is hard to rise up. They have done so well! I am proud of who they are and how well they are taking care of each other.

As for Maddi, she is doing pretty well. It has been a full week without any "Storms". That is reason to celebrate! Visualize me doing the happy dance in her tiny hospital room. I would have to be on the ceiling from lack of floor space but I would be doing it!

She has a good day at therapy yesterday, Sunday is the day of rest in that regard. I think it helped that one of the regular people was working with Maddi. She seemed to recognize her voice and they used the same procedure as before and she responded much better with that. She used her legs to help get them on the therapy table and she moved her arms off of the ball just like she did on Thursday. It was so encouraging!

The pet therapy people came by with a do that looks just like Josie. A black standard poodle named Elliott. Maddi got really excited with him. She started moving her mouth and even put some air through her vocal chords. It was so fun to see her have such a great response to something familiar.

She is working hard and is starting to hold her head up better too. I know that these things seem tiny to the outside world but for us here, those are the steps that keep us hopeful and positive. We have started stimulating her with smells and she is responding very well. Chocolate pudding created a great response in Maddi. The smell of cinnamon also brought a great response. I knew that smells were working while still in the PICU. Aunt Julie gave us some hand lotion and she loves it! I put it on her hands and feet and I definitely get a great response.

She is on the schedule for Monday to have a second belly button put in. It will be used for the same purpose as the first one......feeding. Right now the tube is going down through her nose and most people don't like that. The OT also says that most of the time the swallow and the ability to eat doesn't come back until that tube is out of the way.

It will make therapy so much easier and the risk of Maddi becoming disgruntled and pulling the tube out on her own is so much less. It has to stay in place for at least six weeks. That doesn't mean she has to eat that way. Hopefully she will be able to eat via regular food soon.

The stimulant seems to be working, she seems more aware of her surroundings and is responding to things more consistently as well. She has handled the extra visitors well and is getting out of bed at least three times every day. That seems like a little thing but before just changing positions in bed threatened to bring on a storm so this is fabulous news!

When they said to measure progress in weeks and months they were completely serious. So after reflecting back to last Sunday still in the PICU and not responding to much of anything, things are going really well.

Thanks for all of the prayers, letters and emails. I wish I could respond to everyone to express my appreciation personally but we,as a famiy, want you to know how much your concern and prayers help us through those difficult moments when we are longing for what was! Thank you so much!

Spa Day

Well, I have deemed today as spa day. We took Maddi down to the HydroTub and had her first bath since the accident! It was fabulous for her. They have this cool appliance that helps get her into the tub. So the water was warm and we washed, rinsed and repeated. Then we got to shampoo her hair. It was so much easier this time. Her stitches are out so we didn't have to be careful around that area much either.

As we were rinsing and draining the tub Maddi kept putting her left hand back down into the water. That was purposeful for sure. She has always been my tub girl. When we were rinsing the water was a little warmer for her than she liked and she let us know about it.

After the spa time we did a nice massage as we were putting on her lotion and then the beauty parlor play began. It went much quicker this time. It only took an hour to comb and braid her beautiful hair. I still haven't figured out how to be more precise in the back but I will figure it out. Maddi looks so good all dolled up.

Therapy didn't go as well today but she was really sleepy. She did do better holding her head but we didn't get the same response as we did yesterday. We had different OT and PT people and they did thing totally different. I think she was confused as to what they were asking from her. We will just see what tomorrow will bring.

They did start her new medication this morning but they didn't give her the noon dose. This morning she was much more alert than usual but this afternoon she was really tired. We will get the timing just right and I think it will help.

So, of course little by little. The progress is being made but it is going slow but slow is better than not happening. We are watching Harry Potter right now. She is far more comfortable in the chair than laying in bed.

Keep Praying! Slow and Steady, Wins the Race.

Lunch Outing

Today has been a busy day again in the NTU. I keep thinking I will have time to do a few things but that never happens.

We came into the hospital early and spent some time with Maddi. She was sleeping soundly when we came in. It didn't take her very long to become alert after hearing our voices though. The simple things become so important in here.

We were able to take her to the cafe where John and I have been eating most regularly. She was in her chair and we just went cruising down the hall! She had her first elevator ride in the chair. She seemed interested in the new place. It was nice to be with her somewhere besides her room.
We had a meeting with the Rehab people again and were talking about options for care. They really want her to become more alert. She is stable and doing well but they are just not seeing her change in arousal. They recommend giving her some additional medication to stimulate her brain a bit more. The reasoning is that if the arousal center of the brain has been damaged then they will have to help it out just like the PT and OT are doing for the muscles. So, tomorrow they will start her on that medication in the AM. They will give it to her at 7 AM and 12 PM and then leave her alone for the night.

We are hopeful considering Maddi is the one that truly sleeps off all her aches and pains and heaven forbid you give her anything sedating because you likely won't see her for 3 days after you have walked her by the hand to bed.

PT and OT went really well today! She was using her arms to hold herself up and also used her legs to try and roll onto the therapy bed. It was awesome to see her responding to the verbal commands. She held the ball and the let it go by moving her arm. The PT and OT people were really excited about the difference between yesterday and today. That gave us hope to see her purposeful and fairly consistent movement.

Keep praying for her!

There was some talk about future needs but really it is too early to tell. The brain injury specialist is hopeful but realistic. It will be a very long road but there is always hope, faith and prayer!

We are so amazed at the support and love shown to us as a family. We have always tried to quietly go about living a good life and following the example of the Savior. I am humbled by the outpouring of love we have felt. All the meals,offers of help and the generosity of people. We will never ever be able to fully pay that forward nor offer appreciation well enough but hope to do so to the best of our abilities! Thanks so much! It truly helps us stay above the negative emotions and fears.

Keep Praying, I believe in miracles!

The Chair

Well, they got Maddi up and out of bed! The OT and PT people came in and worked with her to help her recognized the different parts of her body. That is all part of the rewiring process.

They first sat her up on the side of the bed and showed her how to use her hands and feet to help hold herself up. They were so positive and upbeat with her. They brought out a ball for her to work with as well. They were teaching her how to use her hands to hold the ball. She did pretty well. Not a basketball player yet but then she never really was one to begin with.

After the ball playing the got her up and in the wheelchair! Now, some of you may be thinking, how can I be excited about her being in a wheelchair? Well, after you have sat and watched your sweet little girl lay in bed for 11 days with out doing much of anything, you are so excited that she is able to be upright!

Nobody wants to see there once vibrant child sitting in the chair but she looks so much better and was much more aware of what was going on. She was looking at the cards and pictures on the wall. She spent quite a bit of time looking at the Christmas tree the Young Women sent for her. It sure makes the room more cheerful.

She also opened her eyes when her daddy spoke to her. She opened her eyes in response to his voice! That is a great step for her. Time will tell if she will consistently do that. Consistently is the operative word right now. We are looking for her to repeat the same actions with the same stimulation.

She had a great night last night! It has been over 24 hours since she her last storm! That means the hypothalamus is settling down! What that means is that she is less likely to become overstimulated and that the healing can progress quicker as a result.

We are so grateful to those who have helped us during this time! We have been supported in so many ways. It will be a very long road but we will get through it. It is hard to always be away from home and the rest of my family but I have great kids and they are strong. I guess we will get used to a new normal.

So now you know!

Day One NTU

Well, for the first day in the NTU it has been kind of busy. First, thing on the agenda today was to wash Maddi's hair.

As I took out the braid that was so kindly weaved in my thoughts were about dredlocks. Her hair was so crunchy and stiff! It is amazing how much a daily washing is worth. It took two hours for the nurse and I to get her hair washed, rinsed and combed out. Maddi loved it! She did really well during that time. There was some concern that it would over stimulate her but it relaxed her a lot. The mess in the back was so hard to comb out.

She looked so pretty with her hair fanned out from her head. After that it was braiding time again. I have been a fairly proficient braider but this was an exercise for me and great exercise for Maddi. We had to roll her both directions for washing, rinsing, combing and braiding. It was quite the workout for her!

She has done awesome today, her breathing is more natural and she is off the oxygen and doing great.

She has tried to sit up several times today and she actually tracked me as I walked around the bed and found me in a very purposeful way! YEAH! That felt great!

The Physical Therapists and the Occupational Therapists plan to come today and work with her and even get her up and into a chair! That will be a great moment as well.

So now you know what has been going on with us today. The simplest things take so long to do.

Moving Day

Well, it is official. We have made the move across the floor over to NTU! It feels much more homey here than in the PICU. We piled all of Maddi's things onto her bad and away we rolled.

After 10 days in the PICU it feels good to be in a room with a window. Now I might be able to get my days figured out.

They showed us her MRI and now we have a picture to go with where she is at. There is definitely damage going on in there especially around the hypothalmus, think shaken baby syndrome. It isn't insurmountable but it will take some time for her brain to figure out what is going on.

She has been tracking me with her eyes today, mainly on the left side. Tonight she turned her eyes completely to the right to "find" me. That was the first time she has ever moved her eyes that direction.

She also pulled her arm away from me when I was working with her arms. It was definite that she didn't like the fingernail going across her palm. That was encouraging as well.

Not much else to report but the staff here at the NTU says this is where the miracles happen. I am happy to begin that road.

Stimulation is still agitating to her but she can take it in small amounts. We just have to pace it for her. We will give her a few days here before we open the door for visiting. Sorry for those who really would like to come. Please don't feel like we don't want you here. We do, but her brain isn't ready yet.

We switched to some Christmas music and she is doing well with the change.

Here in the NTU we don't have to have a password but the nurses at the admitting desk for the PICU said I might have to come and set them up everyday anyway!

Moving Day = Feeling Good!

Another Day

We are still in the PICU. It isn't that she needs the intensive care but it is more about the logistics of getting her where she needs to be. They switch staff on Mondays and the past Neuro Trauma Team leader wasn't as concerned about getting a MRI before she moves to the NTU but the new guy today wants that done first. So the MRI has been ordered but can't be done until 4pm. They also don't want to move her until morning because the nights are harder for her. So it could be that we wait until tomorrow.

She looks good today! When I got here she was a little agitated but all of the different teams have come into take a look at her and do their assessments. So she was poked and prodded all morning.

They lowered the bed for me! There are some disadvantages to being short and when you are doing care for someone in a tall bed it is a severe disadvantage. It is nice to be able to sit by her and hug her a bit.

A therapy dog came to visit today. It was fun to interact with a dog. I miss my puppies, not as much as I miss Maddi's laugh and smile but that will come in time!

The nurses at the admitting desk gave me the password for today: yegermiester.

I think it is a brand of whiskey. They figured it was fair game to have me saying a word that makes no sense to me since they have been doing that for the past ten days. Most of them have never read Harry Potter so it was nonsense to them too.

So still we wait. All looks promising and time will tell.

Quiet Day

Well, so far today has been quiet. It seems like all the action happens after we leave. Last night she had a bit of an asthma attack but they caught it quick and she responded well.

They took the drainage tube out of her head!!!!!YEAH!!!!! That is one more baby step towards to end result. What that means is that her head is no longer swelling and that they don't have to worry about any additional damage being done as she heals. That is great news!

Also it means that we will be able to begin more intensive physical therapy! We are excited about that

I have been playing some piano music for her and it seems to calm her. I thought she might want me to mix it up so I put on the music we always sing together in the car and she got a little upset. She seemed put out that she couldn't sing along with me.

She seems to be following me a little bit with her eyes as well. Nothing documented but it seems that way to me. We are just keeping things nice and quiet for her!

Funny thing happened today; I wasn't sure who was at the admitting desk for the Unit so I didn't use the password. The nurse was unsure what to do.

She said, "Well, what is the password?"
I said "Well, I wasn't sure if you would know the password."
She said, "I can't let you in until you tell me the password, so what is it?"
We had decided on "Fire Whiskey" so that allowed me in. It was a pretty funny turn of events.

I think people probably think we are totally crazy but it makes for a good laugh!

Thanks again for all of your support. I know it is hard not knowing what to do but know that we feel of the love and prayers coming our way. Thank you so much!

Quiet and Still, Slow and Steady, Day by Day

New and Good

Things are moving forward for Maddi right now. They are working to get her to the Neuro Trauma Unit (NTU). They didn't move her today because they need to have 24 hours with the drain clamped with her Cranial Pressure (ICP) staying below 10. They put her on her right side and her ICP went crazy. That meant that she was hurting. I am not surprised. If someone made me lay on my right side, right now I would want to get physical too!

They have her with very little sensory input. This is good news! What it means is that she is trying to make sense of her environment and any new thing creates confusion and gets her agitated. She "knows" or has a place for mom and dad's voices and it doesn't get her agitated, unless we are saying good-bye. So, they are asking to limit the visiting until she has had time to process a little bit more.

They have her on medication to help with the agitation. When she gets that way, it is like she is running a marathon and she is burning huge amounts of calories. She has already lost about 8 pounds, not that she had any to lose in the first place. So they want to prevent the long term agitation that comes from lots of new visitors.

It is better to have her stay calm without the drugs so when we have a conversation they ask us to go out of the room or to whisper. They have the lights turned off and ask us not to touch her for the time unless we are doing physical therapy stretches.

It may seem like the opposite of what you want to do. We want her brain working but working productively is different than confusion and agitation. She still likes the Harry Potter reading and the Book of Mormon still calms her. She does well with the light classical music that we are playing for her.

The not touching is really hard because it feels like that is all we can do for her right now. They say that this stage will pass and that will be one more stepping stone.

We are thinking; "fire whiskey" password for when we get to the NTU

Again, thanks to everyone who is helping and praying for us. It is so comforting to know how much Maddi is loved and cared about. Thanks to all who have brought meals and helped with the fundraiser and all the stories! There are not words to express how much your caring has helped us through so far.

New Today

Just a short update. When we got to the Unit today we were talking to the nurse and the Doctor. She is doing really well. She is coughing and taking care of the gunk on her own and doesn't need much intervention for that any more.

She tried to sit up a little bit today! YEAH!

They have clamped the draining tube from her brain and her cranial pressure has stayed under 10. They will do another CT scan tomorrow and then the drain can come out

She was a little dehydrated so they gave her some more fluids. Her little mouth is all cut up from the braces. I put some salve on the inside of her mouth. It made me feel better. She wasn't as impressed for sure. I think it will help in the long run. Her lips are looking so much better after putting the Bert's Bees chap stick on them as well.

We got her some new socks from the "Nisser". I know that it isn't Sunday morning but she needed something new. With her fashion sense having the drab hospital gown would be unacceptable. Now, she at least has her mis-matched fuzzy socks.

The password is: The 3 Broomsticks. John and I think some strong butter beer sounds about right!

Fundraiser location

****The Location for the Fund Raiser****

1114 N. Main Street, Logan

in Front of Seagull book

Today 11-3

Thanks To Everyone!!!

Thanks to all who have helped and have prayed for us! Thanks to Maryanne for doing what I could never do (the fundraising).

One thing about being at Primary's is that I see so many people in need! We have been so blessed in so many ways. This is hard but we are strengthened in unseen ways.

Maddi opened her eyes today! It was great to see her "baby blues". She is working hard and responding more today. Baby Steps! She hasn't quite "found" us yet but she responds well. She keeps her eyes open unless she is asleep and she is following the sounds and is trying to figure out what is going on.

She responds well when we read to her and gets a little irritable when we leave. All of which is good news. We want her "spitting mad". Her breathing and blood pressure slows down when we read the Book of Mormon to her. It is calming to her. She is very sensitive to the light, so we keep the lights low when she is upset.

They moved her to a different room but she still is in the PICU. They are hoping for Monday to move her to the Neuro Trauma Unit (NTU). We think it sounds like she is going to MIT or something.

We had a staffing meeting with all the people involved in her care. She is definitely going to survive. Now it is time to help her rewire her brain. It was encouraging. They said to be sure to track her progress in weeks and months, not days. This is a long term recovery and it goes pretty slow but she will recover.

John's cartoon brain describes this way: You are walking up the stairs with a Yo-Yo. There will be lots of ups and downs but eventually you will be at the top.

The password was: "Nimbus 2000"

It is pretty funny to walk past the sniggering nurses as we walk past, especially the ones that have never read Harry Potter.

Now you know! Life is good! Tired is the operative word right now!

Volunteers

****The Location for the Fund Raiser****

1114 N. Main Street, Logan

in Front of Seagull book

We are looking for volunteers to help with fundraisers in Cache Valley.

We are doing the first fundraiser tomorrow Saturday December 4th between 11 am and 3 pm and would appreciate any help you can offer. Location TBA

Donations needed:

Candy Canes (Dollar stores)

Christmas pencils (Dollar Stores)

Christmas Wrapping Paper

Items needed to borrow:

10x10 or larger canopy (Something to keep us from the weather)

Extension cords

Portable CD players or iPod Speakers

Christmas Lights

Email us at maddisized@gmail.com if you wish to participate in any way. Please put Fund Raiser as the subject line.

The Latest

The Breathing tube is out! YEAH!!!! Maddi is doing well on her own. Her temperature is normal again and she looks so much like herself!

She does have pneumonia but she is so much better today than yesterday that we are excited.

They plan to move her to the Neuro Trauma Unit tomorrow. That is a good sign as well.

Maddi is doing more purposeful movement today as well. She squeezed our hand and will move her arm. Her processing time is not too bad. She was far more relaxed today too!

She enjoyed the Harry Potter reading and reading from the Book Of Mormon.

She has a great pair of shoes and is working hard.

People always ask, is she awake? No, but her brain is still healing and it just takes time. Patience is what this journey is about for us right now.

Tonight feels good and the password is "snogging"

I guess tomorrow I will have to train a whole new set of people about the passwords.

Feeling Better

The ventilator is out! That feels so much better. She looks more like herself and she is breathing easily on her own.

That being done the movement is all towards rehab. Probably tomorrow she will be moved to the NeuroTrauma Unit which means she won’t be in the PICU any more.

We really are unable to to know anything until she wakes. The waiting is hard but at least we feel like we are making progress.

The rehab team is extremely hopeful about her purposeful movements, her processing time to comply to commands and the things that she is doing. They gave us a book about Traumatic Brain Injury. It looks like a college 1010 course book.

I have been thinking about going back to school but I wasn’t thinking TBI training. I am glad I know a lot about how to access the brain so I guess the journey begins.

Stories About Maddi

Hey as part of helping her remember things they said it would be a good idea to have people write up their favorite stories about Maddi. First hand stories are the best not ones you heard from someone else. Something that you have done, somewhere you have been and things she has said. It would be great to get those together so I could be reading those to her. The more detail the better!

If you want to send one in for her, send it as an attachment to my email at

MaddiSized@gmail.com

Send it as a PDF or a Word file and I will get it together. Make sure your subject line says Maddi stories.

That will help her reconnect with her life before as she is recovering.
Thanks
Bev

Busy Day

Yesterday, was an extremely busy day for us. We had lots of people coming and going yesterday. We had the rehab people and the Occupational Therapist and the Physical Therapist come in and talk about the course of care.

They taught us some exercises that we need to do with her to help keep her limbs flexible. Lots to remember and lots of work. It felt good to be doing something and to feel like we are headed somewhere else.

We had the worst case scenario talk with the Doctors last night. It was kind of a crappy day.

Maddi is breathing on her own. They turned the ventilator off and she is working hard to breath. She also has an infection too so they put her on an antibiotic for that. She is still responding to sound and is moving the right side of her body very purposefully so it is encouraging.

They plan to take the ventilator out today so that will be a great moment. That is the last step she needs to take to get out of the PICU.

We changed the password to "chocolate frogs" we are thinking "Quiddich" next.

They told me to choose a book to read that Maddi has most recently read to help develop the connections that are not damaged in her brain. It needs to be something familiar that she has a lot of experience with. I have decided on the Book of Mormon. She personally finished that book four times already and we have read from every night before bedtime from before she was born. I think that will have the best reaction from her. It was that or Harry Potter. So that is my goal for today.

We need to get to the hospital this morning. I can only do these posts in the morning. The evening and the leaving is the most difficult.

So now you know what I know. Keep Praying. We need a miracle for Maddi!