This blog was created to document our experience dealing with Bailey, our 16 year old daughter's stroke. Until September 15th, she was a perfectly healthy, active teenage girl. She is a junior in high school this year. She has a part time job, many friends and a busy social life. She is involved with the marching band, cross country skiing and the school theater group. Her class schedule reads like that of my nightmares - Honors classes, Advanced placement classes and even a "college in school" physics class. She has a smile that shows itself with the slightest of provocation. She is happy, easy going and a bit goofy. Generally, there was no reason to expect any health issues and definitely we would not ever have even thought a stroke was a possibility.

So, this is our story. I am hoping it will help others who experience this sort of misfortune to understand they are not alone. Maybe they are feeling the way we do and will take some comfort our story.

Thursday, November 18, 2010

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.

Tuesday, November 16, 2010

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.

Monday, November 15, 2010

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.

Sunday, November 14, 2010

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.

Saturday, November 13, 2010

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?

Thursday, November 11, 2010

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?

Tuesday, November 9, 2010

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!

Saturday, November 6, 2010

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.

Tuesday, November 2, 2010

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.