Bailey and the Band

Salutations Everyone!

As you may know, the Richfield High School Band went on a trip to New Orleans last week. Although I was not there, I was thrilled to hear of the wondrous occasion. They did way more than just play multiple concert. There was plenty of sight seeing and food eating. Bailey and all of her close friend had a chance to do things that many have not done.

On there trip home their flight was canceled, due to horrific weather, and the group was split up. Half of them ended up taking a bus all the way back to Minnesota, and the others were stuck in Atlanta, GA, while there instruments and personal effects were being transported via rental truck. The whole ordeal did not go unnoticed. Fox news did a segment about the group while they were on the subject of the Airport dilemma.

I am happy to say that everyone made it back, safe and sound. However, all of the travel took a toll on Bailey. She was so tired that she missed the next day of school.

All in all, it was a rather successful adventure. :)

What's wrong with your face?

Our routine started out as usual Wednesday morning and was moving along as scheduled until Paul walked into the kitchen, took a look at Bay and asked "What's wrong with your face?"

I hadn't noticed but her left eye and the left side of her mouth were visibly drooping. Her dads way of approaching it made her freak out immediately and made me kick into "it's alright mode." We took a closer look and asked her if she had felt anything different recently and she told us that Tuesday morning while she was crying at school (a whole different story) her face was tingly. Since tingling is on the long line of things to watch out for, the decision was made for us - we were headed to the emergency room.

We arrived at the E.R. at about 7:30. They got her into a room in about 2 minutes, which was a nice change from our last experience, and the doctor was there in about 10. He asked a few questions, took a glance at her medical records and ordered an MRI. I was amazed at the efficiency with which they handled our concerns. This felt more like what one would expect when their child had a possible stroke - not at all like the last time.

They took her to MRI at about 10 and from there admitted her to a holding room on the 4th floor. There were no "real" rooms available because the hospital was full so this is where we were to stay until they found us a place.

Her Neurologist, Dr. Dove, came in to see her at about 11:00. He said that the MRI was negative and that there was no new stroke. He also said that the original stroke had "evolved as expected." He basically told us that there was no explanation for the drooping on her left side and since it was mostly gone now that she could either stay overnight for observation or she could go home. This, of course, was very frustrating for us. How can a doctor look you in the eye and say "well, I just don't know" and then let you decide if you stay or if you go. The lack of urgency or apparent concern just made us more uncomfortable. Here we were waiting for these professionals to tell us what was wrong and how they were going to resolve it and we got nothing.

After about six seconds of discussion it was decided that Bailey would go home. We figured that we could watch her at home as well as they could watch her at the hospital and since staying in the hospital meant that she would miss another day of school she was completely against that idea.

We are dealing with sort of a double edged sword when it comes to Bay and stress. When she is stressed she has symptoms that are obvious and for all we knew the drooping could have been directly caused by her crying the day before. She gets stressed when she can't go to school. So, we keep her in the hospital, she misses school, she gets stressed and she has symptoms. What the hell are we supposed to do?

I tried to tell her that she needs to quit getting so stressed out and her response was "well quit putting me in a position to be stressed." I was so angry with her. Lately I do everything I can to hide my irritation when she is being irrational but I couldn't let this go. Paul and I have NEVER pushed her at school. We would be proud of her if she pulled in C's in the regular classes and here she was getting A's and B's in AP, Honors and CIS classes. These classes have always been her choice. We have just sat back and watched her succeed. Now I wish we would have reigned her in a bit, maybe encouraged her to relax a little bit.

I explained to her, in my calmest voice, that I have never put her in a position to be stressed out. Her stress about school is self imposed. Her teachers are working with us and being very understanding and there was really no reason for her to be freaking out about missing a few days. She apologized to me for blaming me for her freak out.

I realize that this whole situation is very stressful for her, more then I will probably ever understand. In fact the best words we have found to describe it are simply "it sucks." This being said, it is hard to be caretaker, chauffeur, wardrobe assistant, stylist, laundress, transcriptionist, cook, manicurist and all things in between and also carry the title of Scapegoat. I couldn't let her statement go. It hurt too much to carry that one with me a long with everything else.

So, we are home now. We have discussed our new roles - hers as child and mine as parent - and how she will have to slow down and I will have to enforce it and how she will not be mad at me for it. In an early blog post I asked the question of whether a sniffle will every be just a sniffle again and now I have my answer - no, it will not. It is hard enough to swallow that but to know that my concern will be seen as a cause of stress is even worse.

The kindness of others

While my daughter having a stroke may be a devastating event in our lives I have every reason to believe that with time she will be fine. In recent years I have had brief moments of emotional devastation on a daily basis in the form of an overall lack of common courtesy and general consideration that people in public give to each other. It seems like the whole world has become caught up in their own little lives and no longer notices or cares about the people around them. We (I, even though I try not to, have been guilty of this at times) go through our lives talking on our phones, reading emails or checking text messages and just don't notice anything outside our LCD screens. This lack of awareness makes simple everyday interaction with others painful and confusing. People are rude, inconsiderate, impatient and just don't seem to hold themselves accountable for their actions.

There is not a day that goes by when I don't think about what is happening. I have worried for several years that humanity as a whole was going downhill. I often wonder if people ever even think about the strangers they pass on a daily basis. What will life be like for my children's children if this doesn't change? Will all social skills simply become extinct?

Well, while I still worry about these things I have recently, due entirely to my daughters stroke, had the opportunity to witness humanity at its finest. Kindness, generosity, and well wishes seem to be coming out of the woodwork. We have had more friends, family, acquaintances and complete strangers reach out to our family then I would have ever thought possible. I can't even express how much this has done to lesson my worries. It is wonderful to know that there are so many caring people in our lives and in our community. It is terrific.

So, to those of you have reached out to our family - Thank you. You have not only helped to lesson our stress regarding Bailey's stroke, you have also helped to lesson my cynicism towards mankind as a whole and this is no small feat.

Exhaustion

We have been trying to not push the limits of Bailey's physical abilities but it is becoming more and more difficult to talk her out of doing things. She wants life to be normal and she wants to do all the things she used to do. Well, unfortunately she used to be busier then the average teen and pretty much never sat still. Her body just can't handle this type of things anymore.

Today was proof of that. She had a very busy weekend with lots of socializing and lots of sort of "catch up" sleep. We all know that you can't catch up on sleep once you have missed out on it so no matter how much she rested her body just didn't recover. Today we had an 8:30 appointment with her primary doctor and then the plan was to go to lunch and head to Sister Kenny for rehab. We made it to lunch and on the way to SKI she asked if we could call in sick to therapy today. Of course I said no, that therapy was necessary and that we needed to go. She managed to hold it together through OT and then about 25 minutes of PT before she broke into tears and said "I just can't. Take me home, please." When I looked at her and saw that the right side of her face was showing a slight droop and then watched her walk like she had no balance I knew that home was where we were headed.

So off we went. We walked in the door at about 2:45 and she was asleep by 3. She slept all the way through until dinner at 7 and then took a shower and got back into bed. She is just drained. I wonder how tomorrow will be.

Making LokoMat Smile

Many of the more advanced technological devices that they use during PT and OT have settings that give you instant feedback or in the very least after you have completed the exercise will give you basic stats on how you did. There is the robotic arm that tells you how much help the machine gave you, how jerky or smooth your movements are and then there is the LokoMat...

This machine has some cool bar graphs that tell you much of your body weight was supported during your walk (they actually make you lighter!), how much you are moving your limbs or how much the machine is doing but the part I like is a simple smiley face. The more effort you put into the walking the more smiley he gets. If you stop helping he full on frowns at you. It is truly awesome how simple and yet how effective the smiley is in giving feedback.

Winter fun.

Today we had our first snow in Minneapolis. We got somewhere between 4 and 8 inches - who really knows - anything over 2 inches is hard to shovel anyway! It was rather pretty but also very wet and heavy. Bailey and I decided to venture out into the winter wonderland and do some shopping. This seemed like a good idea until we got to the store and realized that there isn't any skid proofing on the bottom of a cane. She was slipping and sliding all over the parking lot!!

Anyone with any good ideas for this?

Running or having a seizure?

I used to watch my daughter run and think "wow, she has no coordination at all." It was like watching that old Friends episode where Phoebe teaches Rachel to let loose and run like her. It was equal parts funny, embarrassing and endearing to watch.

This morning as I sat in the car watching Bailey hobble towards the school door, struggle to open it and then wobble in, I missed that uncoordinated run. I used to have to tell her to slow down because she was so prone to knocking things over. She was, as the saying goes, a bull in the china shop. Nowadays every movement is an effort, every step is well thought out, every narrow passageway another hurtle to overcome.

While it is heartbreaking for her mother it doesn't seem to phase her. When I picked her up yesterday afternoon I kept staring at her and she wanted to know why. I told her that I was having a hard time with watching her struggling. She looked at me, smiled, and said "Ah, it's OK. It is what it is and I will run again. Don't you worry."

Has a mother every loved her daughter this much?

The bracelets are here!

As part of our fund raising efforts it was recommended that we have Live-Strong type bracelets made. Well we did and they are now available.

You too can show your support for Bailey by sporting a lovely lime green (her favorite color) bracelet for the low, low, price of just $3.00.

Just let me know how many you want and I will find a way to get them to you!

On the front -  "Hey, Hey Bailey!" - Inspired by the Richfield High School bands performance.

On the back - www.baileybucket.com

Robo-Bailey!

One of the things they really worry about during physical rehab is the patients ability to find an easier way. The human body is adaptable and will sometimes over compensate for physical losses. These over compensations can actually hinder progress. The patient will start to walk faster and with more balance but with an unnatural gait that can actually cause more issues. In order to prevent this they use a rather monstrous machine called a Lokomat. It is super cool but definitely intimidating!

School - A week later

As it turns out my return to high school was short lived. Bailey wanted independence and the school was willing to make as many concessions on her behalf as needed in order to get it for her. She has assigned note takers, people helping carry her bag, reduced work load and any front row seat she wants. Isn't it every kids dream to be allowed to sit in the front row?

She spent all day at the school on Thursday because I had to head north to help remove a tree from the cabin roof. She said that things went really well but she was worn out. So worn out, in fact, that on Friday morning she got up, got dressed, came to the table to eat and burst into tears. I asked her what was wrong and she said "I can't do it. I am so tired I just want to go back to bed." So this is what we did - went back to bed. She had therapy Friday afternoon anyway so it was important that she be well rested.

Her therapy has been going well but it is hard to get her to do her at home stuff. She is just so tired and the lack of short term memory is definitely not helping.

Officially back to school

I am so freaking tired. High school is tedious. Day two was, however, much better for Bay then day one was.

Bailey went back to school yesterday and had about 80 panic attacks. She didn't want to go in, mainly because she didn't want to see Zach. After we made it in, we went to the band room and it took about 40 minutes of coaxing to get her through the door. After band she begged me to take her home. I said no. This was another recovery hurdle and we needed to jump it. Once she got to math she was calmer. She hasn't lost any of her mad math skillz so she was pretty excited to be there. Mr. Zoelmer helped to calm her down quite a bit. I actually got to leave and go get coffee! Yay me.

After math (ha, "aftermath"), was English. She was pretty worried about this class because the teacher had sent home a TON of homework. Bay was convinced that she would fail if she didn't do all of it. Well, I explained to Bay, the teacher doesn't know what deficits she has and what modifications to the curriculum need to be made so we just needed to calm down and take it a step at a time. It was still pretty overwhelming but she made it through.

After English was Social Studies. Another big stressor because of the ton of homework for that class. She had missed an entire unit - the teacher said it was the equivalent to an entire quarter of school. Well when we got there Mr. Fogelson said that he wasn't going to make her do that unit and that she could just start from the current one. She was elated.

So, today we had day two and since her teachers were able to alleviate some of the stress it was much smoother.

We met with the school Psychologist and the head of the Special Ed department about the mods and assistance she will need so that ball is rolling quite fast now.

Everyone has been so very nice. I really feel like we are getting a ton of support from the folks at the school. This makes it much easier.

Manic Monday

OK, so it is actually still Sunday but I can already see that tomorrow will be more of the same. Today we flipped and flopped back and forth between tears and laughter all day. It was "I am so scared to go back to school" and "I get to go trick or treating." ALL DAY LONG! She is so stressed out about school. I am trying to find ways to make it easier and also positive things to say to calm her nerves but I am not sure I am being very successful.

We will be going to school fully equipped with a digital recorder to make sure we don't miss anything. I also bought this software that transcribes your digital audio into text files for you. It seems to work pretty well with the samples I tried. We shall see how it goes once you add all the background noise of a busy high school!

Struggling with school work

Tonight we sat down to review and work on some of the school work that the teachers have sent home. Bailey quickly became very overwhelmed. One of the side effects of the stroke is some mild reading comprehension issues. She can read things to herself and answer question about it but the reading takes forever. She has to read and re-read it and it just goes slowly. She got frustrated and wanted to give up. We tried having me read it aloud to her and she just couldn't follow any of it. It was heartbreaking to watch her struggle.

We did find one assignment that went well for it. It was a Social Studies word scramble. These she can glance at and get without thought. How come she can't do that when the words are not scrambled?

A small setback

After over two years of dating Bailey and her boy have broken up. Truthfully, he broke up with her. He has assured her that it is not because of the stroke but would anyone actually admit it if it were? It has to be very stressful for him either way. He is now "the boy who broke up with the girl who had a stroke." Not a winning situation for either of them.

She is devastated. She has been crying for two and a half days now and can't seem to eat a full meal. She won't go in her room because there are too many memories of him in there. "Everywhere I look it is something that he gave me or a memento of us together." It is heartbreaking to watch and I can't seem to say the right words to make her feel better so I texted her friend Lindsay to come over last night and try. Lindsay brought ice cream, support and alerted a couple of other friends to come over as well. Surrounded by her friends she laughed and cried and seemed like she would be OK.

The after effects of their visit were short lived. She went back to bed and crying the minute they left. Today she woke up and the right side of her face was showing a droop that we haven't seen since three days after she had the stroke. She is exhausted and stressed and this is how her body is dealing with it.

I tried to talk to her today about the break up and it seems to be that she is less stressed about being boyfriend-less and more stressed out about losing his family. She is close to them and is now convinced that she won't ever get to see them again. I have assured her that this is not true.

Fingers crossed that this passes soon.

Thank you Nordstoms!

We finally made it out to buy shoes. We rolled into Nordstrom's with our heads held high and proudly asked for a pair of Converse - left foot size 8.5 and right foot size 11.

You can actually fit the "small" shoe inside the "big" shoe! It is awesome. Bailey calls the big one her clown shoe. She is oddly proud of it. I am so glad she is such a positive girl and can find the bright side to every bump in the road.

I would totally vote yes for socialized medicine right now

We have health insurance through the Post Office where Paul works. For the most part the coverage is great, the cost of prescriptions is OK and the copay's don't break the bank...until now.

Apparently as far as the day to day healthcare needs go we are covered but not so much when it comes to a catastrophic event (their terms not mine). Since Bailey is being seen for outpatient care at the Sister Kenny Institute and they call themselves a hospital we have to pay the copay associated with a hospital visit. It is $75 per visit. Well if you look at her twice a week visits this would be $150 a week. A high number but one that could be handled with some fancy calculator dancing and penny pinching. Well, think again. The phrase "per visit" pertains not to each time we physically visit the hospital. It refers to each therapist she sees. So, given her current schedule of going to SKI twice a week and seeing 3 separate therapists each time they calculate these as 6 visits per week. Now, let's do that math again...

Six visits each week, each with a $75 copay. That's $450 per week for her therapy. Ouch.

I will give you a minute to digest that before I continue...

So, now we understand the cost, let's look at the actual coverage. Our policy covers 50 visits per year. Apparently this is pretty standard for any health insurance policy and not really surprising to the people at the clinic but to us it was rather shocking. We were told that Bailey would likely have outpatient therapy for a year or more. So if she is scheduled for six visits a week and is limited to 50 visits per calendar year we are really only getting coverage for about 9.5 weeks a year. Excuse my language but - WTF??

I have spent many hours on the phone with both the insurance company and the rehab facility and really haven't gotten any solid answers. The benefits books reads like the three disciplines are combined into one visit if they are done in the same day so that would mean she could go for 25 weeks but why then are they telling me that I have to pay a copay for each of the 3 disciplines? The folks at Blue Cross are telling me that it is counted different for billing purposes but for coverage purposes they are combined. How does this make any sense?

I have been referred to Social Security Disability to see if she would qualify for any assistance but everything I am ready seems like she isn't.

Any suggestions would be welcome!

Thanks for listening to my rant.

Will a sniffle ever be just a sniffle again?

After our adventures today Bailey was a bit tired.  We had plans to go to Nordstroms to look at shoes but she opted for lounging on the couch in front of the Disney Channel instead.  I knew she must be tired if she gave up the opportunity to replace the running shoes that she hates so much.

After about 10 minutes of lying down she told me that she felt like she was going to vomit and that her head hurt.  She looked a bit green around the gills at this point so I began to think that it was more then just fatigue.  I tried to calm my worries by reminding myself that I have been tired to the point of exhaustion before and it made me nauseous.  It didn't work.  The more I tried to not worry the more I worried so I called one of her nurses from Sister Kenny.  She said that as long as the headache didn't get worse and she didn't start vomiting that I didn't need to worry.  If the headache got worse or she threw up I was to take her to the E.R. right away.

It turned out to be a false alarm and was just fatigue.  After lounging for several more hours she felt much better but I am quite certain that if she ever hears me say "you OK?" again her head might explode.  I felt like she was an infant again and I was a new mom.  I just sat there and watched her.  I was so scared and nervous.

After she started feeling better I couldn't shake the feeling that this was just the beginning.  She will never have a sniffle again without me freaking out.  God forbid she ever has a fever...

Preparing to go back to school

Today Bailey and I went to the high school to speak to her counselor about her upcoming return to school. The doctor has OK'd her returning on a "part time" (3 classes a few days a week) status on November 1st so we really needed to figure out what the game plan would be. Our plan was to visit Ms. Okey and then attend "First Lunch" and see some friends. After that we would make some stops into her fourth and fifth period classes to see some friends and talk to the teachers. After that she was going to visit the principal with a few friends to ask him about the benefit/fundraiser that the kids want to have in honor of Bailey.

Well the first part of our plan didn't quite work out like we wanted. We didn't have an appointment with the counselor so we had to wait until she was done registering new students before we could see her.

Bailey decided that she really wanted to give the AP and Honors classes a try so we had her put back into her original English and Pre-Calc classes and then switched her Social Studies class from its original 5 period to one during 3rd period. I thought this was very tidy and fine. We had figured out what 3 classes she would have and it would be OK for her to attend class a few days a week. Bailey thought it sucked. Turns out none of "her group" are in the 3rd period S.S. class so this stressed her out. Also, she didn't want to drop German so we had to see if the teacher would work with us on any type of alternate scheduling. And let's not forget about band...

After the disappointed water works stopped we headed off to speak to her German teacher. I barely got the words "we were wondering" out before she said "yes, I have a plan!" So, our big plan for German is that Bay will attend class when she can and will work with her fellow students to make sure she doesn't fall behind. We were very proud of this outcome. It was almost like we thought of it!!

After our great success with the German teacher we headed off to see Mr. Hoehn. We figured it couldn't hurt to ask him if Bailey could stay in the Symphonic Winds band even though she can't play her instrument. He was more than happy to accommodate her. He said that he had been thinking about ways that she could be involved and thought that maybe there was a percussion instrument that could be played with one hand. It was awesome!

So our trip to the school to get registered for "part time" school turned into Bay being registered as a full time student! Fingers crossed that she doesn't get overwhelmed and that she can keep up. I know that she will be heart broken if she has to back off and give up some classes. She loves school so much it confuses me. I was never this dedicated to school at her age. What a nerd.

Shoe struggles

One of the more frustrating results of the stroke for Bailey is that she can no longer just throw on any old pair of shoes and go. She is now required to wear a leg brace that makes her right foot about a size bigger than her left. So far the only shoes she has that she can wear are the sneakers we bought her for PT. She hates these shoes and I don't blame her, after all she has been wearing them everyday for a month.

I had heard a few years ago that you could go to Nordstrom's and buy a pair of shoes with each one being a different size. I decided to verify this via the live online chat with one of their customer service people.

This is how it went:

Kim J: Hello Jenn, my name is Kim, and welcome to Nordstrom! I see your question: I have a 17 year old daughter who had a stroke 5 weeks ago and because of a leg brace she has to wear she now requires two different size shoes. Is it true that you will sell a pair of shoes where each shoe is a different size.

Kim J: I am sorry for this, Jenn. Yes. We do provide a Split shoe service. Could you provide the sizes that she requires?

Jenn: Her left is a nine and her right needs a 10 to fit the brace in it.

Kim J: The split shoe service is offered if the sizes are within 1.5

Jenn: They are! Can I go to the store and get the split shoe service? In order to make sure they work we have to try them on. The brace really restricts what shoes she can wear now. It is very frustrating for her!

Kim J: Yes, you are more than welcome to visit your local Nordstrom store for this service. You are also able to contact our Customer Service Line at 1.888.282.6060 to place this order. You would place an order for two pairs of shoes, one in 9 and one in 10. Once received, you would return the sizes that are not needed.

Jenn: That is fantastic. Thank you for your help!

Kim J: You are welcome, Jenn. Thank you for visiting Nordstrom today.

I have always been a huge fan of the Nordstroms shoe department and now I am even more loyal!

Thank you Nordstroms!!

"I will walk to the car"

This was the mantra we used to get us through the stress of the first few weeks of therapy.  Whenever she felt depressed or lonely I told her to close her eyes and see herself doing it in her mind.  I told her to repeat the words "I will walk to the car" and know that she would.

While the staff - Dr.'s and therapists alike - said that this was a "lofty" goal and unlikely to happen Bailey kept telling them that they were wrong.  She believed that she could and that she would walk to the car.

Well today, after just 4 weeks and 6 days in the hospital Bailey proved them wrong. 

SHE WALKED TO THE CAR!!!