With Trepidation

On Tuesday, December 20th, 2011, I had to attend a contempt hearing because my ex-husband was, again, not paying shared expenses or half of the medical expenses per court order incurred for Lacey.

The news that is very troubling for not only me and Jerry, Lacey’s step-father, but for Lacey as well, is that her father is pursuing to claim that her Hyperbaric Oxygen Therapy (HBOT) is not a qualified medical expense because our health insurance, Highmark PPO Blue, does not cover any of the cost. According to the definition from the IRS, HBOT should be qualified because it is for medical reasons that she is receiving this form of therapy. I have been told that the reason HBOT is not yet covered is because there has not been enough research to prove the benefit. I have learned of several providers that indeed do provide coverage for HBOT in Pennsylvania. If you refer to Hair Tonic Turns Girl’s Hair Green you can get a little history on this predicament we have been forced into. At the time I wrote that post, he had admitted that Lacey appeared to be doing better, yet he still would rather pay a lawyer to not have to pay for Lacey’s care.

HBOT can provide safe and efficient treatment to improve the functional recovery of TBI survivors. With TBI, brain areas that are injured are not receiving enough blood flow as a result of the trauma. Tissue might get enough oxygen to survive but not enough to be functional. Hyperbaric Oxygen Treatment can heal TBI patients by regenerating, repairing and generating new blood vessels to the injured parts of the brain. Recent research also indicates that Hyperbaric Oxygen Therapy (HBOT) can improve spatial learning and memory in those with chronic traumatic brain injuries.

Lacey’s symptoms she suffered with from her Traumatic Brain Injury on June 6, 2010, included:

• headache

• nausea

• migraine

• balance problems

• dizziness

• light-headedness

• fatigue

• trouble falling asleep

• sleeping more than usual

• difficulty staying asleep

• drowsiness

• sensitivity to light

• sensitivity to noise

• irritability

• sadness

• nervous/anxious

• feeling more emotional

• numbness or tingling

• feeling slowed down

• feeling like “in a fog”

• difficulty concentrating

• difficulty remembering

• visual problems

The essence of who Lacey was, was lost. Lacey’s stress level surged when the school was non-compliant with the physician accommodations and recommendations. She had to start taking various medications to provide energy and focus and medications to help her fall asleep and stay asleep. Eventually, her doctors ordered her to be tutored at home because the stress at school was surmounting and the stress was so that Lacey’s brain didn’t have the proper time to rest and heal. The severity of her symptoms decreased significantly after she came home but the variety remained the same.

Conventional treatments were not proving to be successful. That is when we were sent to Dr. Joseph Maroon, to seek his level of expertise. He told us at that he believed that “there are 3 things I believe will bring your daughter back. They are Hyperbaric Oxygen Treatments, a brain supplement, and prayer.” Hence, our journey with HBOT began.

After 5 hours of treatment, Lacey huffed at me! I nearly cried. It was an amazing moment when Lacey, 15 years old at the time, huffed at me like a normal teenage daughter. That was one of the first glimmers of hope to getting Lacey back. After her initial 30 hours of treatments, her symptoms were reduced to:

• headache

• migraine with sensitivity to light/noise

• fatigue

• occasional difficulty falling asleep/staying asleep

• occasional feeling more emotional/irritable/nervous/anxious

Receiving 2 hours of HBOT every 2 weeks significantly kept the above symptoms manageable and at times, symptom free.

At this time, we are at a stand still in Lacey’s HBOT. She cannot have more treatments until we finish paying her bill. Lacey has been dependent upon the benefits  HBOT provides. I am tracking her symptoms daily and keeping communication open between her and I. She is very good at letting me know what is happening in her life and how she is feeling, noting any symptoms that need to be cared for.

On February 10th, we go to court again. Hopefully all of the information I am gathering will lead to a positive judgement for Lacey.

All we can do now is wait and pray, to see how she handles the stress of the school day and its impact on her brain.

2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,600 times in 2011. If it were a cable car, it would take about 27 trips to carry that many people.

Click here to see the complete report.

Repercussions

On October 27, 2011, Lacey took a form to all of her teachers to sign because we were going to California to visit her brother Adam. He serves our country in the United States Army and he has been very ill for a long time.

Originally, I was just going to visit him but caring for Lacey has been a priority since her injury. I waited to see how everything would progress with Lacey re-entering school this year. Over all, this school year has been a much more positive experience. Most of the teachers have been very caring and supportive. But enough has happened that I did not feel that Lacey would be safe. My husband works a lot and we have no family here to help out if Lacey was in need of care. As I was delaying my visit again, my son offered to pay for Lacey’s trip so that she could be with me. Lacey has very good grades in all of her subjects and she and Adam have a very close relationship.

When Lacey showed her chemistry teacher, Mrs. C. the letter, Mrs. C. lost her composure as well as her respect for Lacey, me, and my husband. She became outraged. Her face was red, her lips were tight, her body was rigid, and her hands were clenched. This was happening in front of an entire classroom of students. She told Lacey that she was “outraged that your parents would take you out of school when you are just beginning” to feel comfortable. She said a few more things that eventually brought Lacey to tears, in front of the class. Lacey did explain again that it was to see her brother, “But he is sick.”

Lacey asked to be excused. She went to the bathroom and another student who had been standing with Mrs. C. and Lacey when the above took place, was also in the bathroom. She asked Lacey if she was okay when she saw her crying and she gave Lacey a hug.

Later in the day Mrs. C. did apologize to Lacey. “I’m sorry for what happened earlier.”

We arrived home last night. Lacey worked on some of her Chemistry homework. It was at that time that the stress of the above experience, the stress of not having her Chemistry homework completed (she has through this weekend to complete it, but Lacey wanted to have it all done for today.), and the stress of Lacey’s imagination mixed with experience overwhelmed her.

She cried several times last night. And vomited once.

I provided comfort and support and tried to keep Lacey grounded with what we knew. We knew Mrs. C. acted inappropriately and unprofessional. We knew that Mrs. C. apologized. We also knew the work didn’t have to be completed yet. We also know that at any time Lacey needs to escape a situation, she has her guidance counselor, Mrs. G., to go to for support.

I finally left a message for Mrs. G., so that she might be aware and have a better understanding of what Lacey is experiencing.

I have been nauseous all day myself, hoping that Lacey is doing well. My reason for writing this post is us to remember how important our words and our actions are. Mrs. C. was very unkind in her behavior, but she apologized. Does that apology erase the havoc and fear created within another? No. It does not. When you are healthy, this kind of experience may or may not be short-lived in its consequences produced. When you are injured and living with Post Concussion Syndrome, chances are that the repercussions of someone’s words and actions may linger well into the night, attempting to consume that of which it has no right to own.

Sweet 16!

October, 2011

October 1

Lacey turned a beautiful Sweet 16! Her birthday dinner wish was Roasted Chicken served with homemade Blueberry Ketchup, Buttered Egg Noodles & Roasted Broccoli. Lacey made Christian (her boyfriend) eat big bites of blueberry ketchup with his chicken so that his teeth would turn blue. It worked and he smiled and plowed in for more chicken and blueberries. Lacey’s birthday cake was Chocolate Mousse from Jean-Marc Chatellier’s French Bakery.

We celebrated her birthday last night because today she played her tenor with the band for a football game and then a band festival.

We had 10 dozen cupcakes of red velvet, chocolate, and vanilla to celebrate with the band and there were enough for the football team. Lacey’s birthday cupcake was Pumpkin from the Oakmont Bakery.

October 8

Today was Homecoming! Lacey got her hair done at J.E.T. Salon.

All ready for a big night out…

Christian & Lacey

Christian & Lacey, along with another couple, went out for dinner at a Mediterranean restaurant along the Allegheny River. They went to the dance and Lacey had the most fun she has had in a very long time. She danced all night except when they played club songs and she would go and sit down if the lights hit her wrong in her eyes. So she took occasional breaks  and danced the night away.

Lacey having fun came along with a price. She was so physically exhausted that she slept a total of 24 hours over the next two days. When she was awake, she was very fatigued and was only able to lay around. I kept her home from school on Monday because of the fatigue. On Tuesday, she was still very tired and had cried at school. When she came home, she asked when her next Hyperbaric Oxygen Treatment was scheduled. It wasn’t scheduled so I called Dr. Morganti and he was able to give her 2 hours on Wednesday. She was still very tired until Friday, October 14th, but since then, she has been doing fantastic.

October 12

Lacey took the PSAT today. The guidance counselors had submitted an application twice to the college board to be able to provide Lacey with some modifications for the testing but they were denied both times. So we decided that we would see how Lacey does on the exam and then submit again depending on how she does. They did move her testing area from the gym to the library. Lacey does not feel very confident in her testing in math. We will have to wait and see.

October 21

Today I had to sit down and write an email to Lacey’s History teacher. I had worked with the guidance counselor regarding all of my concerns with this teacher for two months and things were not improving. He was not following her IEP at all. Lacey would come home from school and say “He just looks at me like he doesn’t know what he is supposed to do.” They had meetings all day, which was so nice to hear. Lacey came home from school and said how he was doing everything “so much better”. He responded back to me on Monday via email and it was so full of pathetic and lame excuses that I cannot even reply. This is his statement for giving Lacey notes in font 6 instead of 14, “As for the font, I am truly sorry that the notes were too small. When I printed them, I didn’t want to waste paper but I forgot that she needed it in larger font.”

Throughout the month, Lacey continued to play her tenor with the band for the football games and festivals. She continues with vision therapy as well. Her and Christian do their homework together every night. She can handle about 3 hours of homework and then she is just done. You can see it in her face. She gets pale and very tired. She is usually able to get all of it completed every night and if not, she finishes it during home room or study hall. Her grades are very good.

Lacey was feeling guilty for having modifications to her school work. I explained to Lacey that the purpose for her to have modifications was to allow her to be successful. If she had a full work load, she would be overwhelmed and the stress would fuel her symptoms and the vicious cycle of fatigue and headaches and sleepless nights would consume her again. She hasn’t said anything about this since and when she answers questions in her class, and the answers are correct, she beams with pride.

October 31

Halloween!

Top Gun Officers

Yes, Lacey loves the camera! And they got a lot of candy. The firemen really liked their outfits and gave them extra candy bars!

Soul Shoppe

One of the saddest issues Lacey has had to deal with since her injury were her peers and many of her teachers that either didn’t understand or didn’t care to understand the effects of brain injury and post concussion syndrome.

The symptoms are many, varied, and can depend on a multitude of stressors. The symptoms may include but are not limited to headache, nausea, balance problems, dizziness, fatigue, trouble falling asleep, sleeping more or less than usual, sensitivity to light and noise, difficulty with concentrating, remembering, and memory, as well as visual problems. When these symptoms last longer than a few weeks they are then regarded as Post Concussion Syndrome.

Depending upon the amount of stress added upon the victim during their activities of daily living, then the number of symptoms may increase or  become more intense. For example, experiencing a headache and adding uncontrolled environmental stressors may elevate the headache to a migraine.  They may also experience new symptoms when their brain is taxed and has too much stimulus to allow it to rest and heal. When there have been multiple insults upon the brain, it appears that the symptoms can worsen and result in a healing time which may continue for months, years, or devastatingly, a lifetime.

I believe that the ignorance of so many who were and are influential in Lacey’s life is the root cause of the many unkind, thoughtless, and harsh whispers, comments, and gestures that were demonstrated towards her. Lacey was ignored and left out of conversations, activities, and social events. These are all types of bullying.

Be Kind, Just Because…

When you don’t understand someone, how do you attempt to gain insight, to build a bridge of respect? If you find yourself lacking knowledge, compassion, or empathy toward someone, how do you take yourself away from that place and to a place where the misunderstood, and so often innocent, can be nurtured and cared for?

A few weeks ago on Twitter I was introduced to Soul Shoppe. Soul Shoppe supports school communities by providing interactive programs and tools that teach students powerful learning and life skills. They have resources and articles available as well as websites for teachers, children, and parents to promote a safe, peaceful and caring school community.

I shared with Soul Shoppe the bullying issues Lacey has had to deal with. Their support has been amazing. They were so inspired by Lacey’s story that they added a Q&A section to their blog Soul Shoppe’s Bullying and School. Dr. Heath Wood took time to address the many facets of how bullying has impacted Lacey. He provided many ideas and suggestions to incorporate into our day to alleviate the stress and strain of dealing with others who are careless and at times reckless in regards to Lacey’s injury. Dr. Heath also addressed ways that I can help Lacey as well as myself. He so kindly acknowledged the effects of enduring such stress being inflicted upon a loved one. Soul Shoppe’s Q&A w/Dr. Heath will be a place where anyone, young or old, who needs advice regarding any type of bullying, will have a chance to receive sound and knowledgeable advice from Dr. Heath. When you visit Soul Shoppe’s Bullying and School website, please be sure to take the Stop Bullying Speak Up Pledge and join nearly 90,000 other individuals that are willing to help put an end to this uncaring, mean, and harsh way of treating others.

I hope that if you ever find yourself in a harmful situation, that you will know that you are not alone. There are others that are willing to help you and support you. I also hope that if you witness harm being influenced upon another, that you will have the character, strength, and integrity to speak up and promote peace and well-being.

Being bullied is ugly and cruel.

No one deserves to be treated this way.

You are not alone.

Please do not suffer in silence.

National Bullying Prevention Month

Realizing the effects of a Traumatic Brain Injury months, and even years after the insult, can be devastating.  Learning that your loved one may never be who they were before can be a startling jolt to every fiber in your body. A defining moment that changes life in a way you can never imagine. Yet, somehow, the spirit of humanity thrusts forward with hope.

Lacey, we learned, received her 3rd concussion on June 6, 2010, playing a basketball game for AAU. Her first two concussions were received during basketball practice at school. She didn’t have any marked symptoms after the first one except a left black eye and with the 2nd concussion she passed out for a brief period of time. The coach didn’t think anything of it. She continued practice after she sat for a few minutes. He never followed up. Lacey assured me it was “No big deal.” She laughed it off and still thinks that she passed out because she was hit in the thigh by a girl’s knee as she was defending the ball. She was hit in the thigh and her head slammed down on the gym floor resulting in concussion #2. Her 3rd hit changed her life.

After receiving Hyperbaric Oxygen Therapy that began in April, 2011, Lacey’s symptoms subsided substantially. She has been able to re-enter school this year and all is going relatively well. She is healthy enough to advocate for herself and others. Lacey has experienced how peers can be careless and harmful with their words and actions and she is right there if someone else needs help.

Lacey has experienced bullying often since her injury but so far this year, the teachers seem to understand. Often, I wonder if their ignorance regarding brain injury led to their lack of care and support last school year. I found that their lack of knowledge regarding brain injury magnified unprofessionalism in many individuals who have gone into a profession to teach children. The first few months I kept saying to myself, “What would they do if Lacey was a bad kid?” “What would happen to Lacey if I was a single mom working 2 jobs?” “What if I was on drugs and didn’t care?’ It was really very difficult for me to see how the school faculty and administration treated her last year. In general, the teachers and administration clearly conveyed that they did not care.

If the adults cannot understand brain injury, how are the students to understand?

Before her injury, Lacey played basketball year around. She loved track as well. She was an Honors student, secretary for the Builders Club, played flute and piccolo for marching band and she had 1st chair 2nd seat for concert band. Lacey volunteered for the school musical as well as other school activities. She was also very good at making people laugh. She loved accomplishing achievements. She was very competitive. She studied hard and took so much pride in whatever she was doing.

After her injury, Lacey was consumed with headaches, migraines, dizziness, weakness, fatigue, and a multitude of other symptoms. She received vestibular therapy during the summer of 2010. Most days she was curled up on the couch. She couldn’t do much. She fatigued easily. She needed time to process communication and often, she needed it said differently. She cried often. She cried because she couldn’t be a ‘normal’ teenager. She couldn’t handle a regular school day. Light, noise & motion would throw her into a migraine. She experienced great difficulty with making decisions. She would get overwhelmed easily. She missed her friends. All but one stayed in touch with her and visited her often.

Open House at school this year was very different from last year. Last year I remember explaining to the teachers the accommodations and recommendations Lacey’s doctors were requesting. The teachers were never properly notified by the administration because we were unable to agree upon the accommodations in her 504 plan. I fought for what the doctors wanted and the school resisted for months. Therefore, the doctors pulled Lacey out of school and she was tutored at home for the rest of the school year.

This year, I thanked every one of Lacey’s teachers because they are caring for her and supporting her in any way that she needs. There were a few times when the teachers heard unkind remarks and laughing because of a question or a comment Lacey spoke. The teacher gathered the class together and discussed respect for others without magnifying the episode or Lacey. Lacey is also well enough now that she can advocate for herself and I think that helps the teachers understand her better resulting in the ability to help Lacey and promote a positive educational environment for her and her peers.

October is National Bullying Prevention Month. Our school district uses the Olweus Bullying Prevention Program. I asked the school administration last year if Traumatic Brain Injury was covered in the Bullying Program. I was told that “It is not.” I asked if they would please consider taking some time to educate the faculty, staff, and students about brain injury and the changes that may occur after receiving a concussion. They declined. They did say that Highmark Insurance was working with Olweus to cover that topic in the future. I have no idea where the status of that program may be. I sent an email to the school asking if they would reconsider adding Brain Injury into their Bullying Prevention Program. I have not heard from them. I will follow-up with a phone call tomorrow.

Bullying can have the tendency to occur because of lack of knowledge. Lacey looks like Lacey has always looked. There is no cast to take off when her brain has healed. Lacey is a beautiful girl who loves life, learning,  and pursuing dreams that she will never put aside. Not being made fun of would be nice. Having a few good friends would be beautiful.

Lacey

To See or Not to See

Lacey had a dream that was very vivid. She has had quite a few vivid dreams since her injury but this was the first one for  a while and after she told it to me, I felt that there was a lot of meaning being illustrated. We had the opportunity to discuss this with someone who is qualified in the science of psychology and trauma and what she discerned from the dream was quite remarkable.

In my dream, I saw that my right arm was cut off. I don’t know how or why it was cut off. Everyone around me was worried because they could see that my arm wasn’t there and I was in an ambulance. They wanted to take me to the hospital. I was telling the paramedics “No. I am not going to the hospital. I have to get ready for Homecoming and I need to get my hair done. I should be at J.E.T. Salon to get my hair done. I am not going to the hospital.” I got out of the ambulance and started walking toward the boulevard to go to J.E.T. I could see that my arm wasn’t there but I was able to see a ghost of my arm. And I was texting you (Mom). And my right thumb was able to text. I was able to see the ghost of my arm and I was able to use my arm. It was the other people who couldn’t see my arm. I woke up when I got to J.E.T

Lacey can see who she is. Can you?

 

Our friend, Gail, did find much to talk about regarding Lacey’s dream. She said many people have dreams about first responders and being rescued after they have experienced trauma. She also said that it was very interesting that Lacey could see her arm and use it with full function and that the other people in the dream were unable to. Gail said that others aren’t able to see Lacey at her fullest potential since her injury. They see her with a disability, a handicap. But Lacey doesn’t see herself that way. Lacey sees herself as a whole person that is able to do what she wants. She is able to focus on what is important, to stay on task and to live in the moment. That is a very good perspective for Lacey to have about herself. She knows that she needs to get ready for Homecoming and she is going to get her hair done.

I liked and was comforted that Lacey had something good to look forward to and that she was planning and preparing for that good thing to happen in her life.

Stop, Drop, and Breathe

Lacey has just finished day 4 of her sophomore year and she is doing really well. The really good news is that the school, teachers and administration all appear to be putting a great amount of effort to ensure that Lacey has a positive experience this year.

The brightly colored forms that were handed out on the 1st day of school became pale colors of paper for the rest of the week, & hopefully until she is completely recovered.

Normally, you would want a child with learning difficulties to be seated at the front of the classroom but in Lacey’s case, there isn’t very much space between the first row and the smart board in several of her classrooms. Then add in a teacher that paces during lecture. Dizziness ensued. Every teacher that needed to move Lacey’s seat to the 2nd row did so without any reservation.

There were a couple of issues that were presented as announcements in general but Lacey took the statements personally and thought she would fail Chemistry because we have morning appointments with her physicians and therapies. She also was worried that if she was tardy more than 10 times she would have to go to the magistrate. Lacey is well enough now that she was able to discuss everything with me without getting upset or too emotional. I was able to explain how those rules wouldn’t be applied to her because the explanations she would have for not being at school are medical reasons.

My goals for this week are to have a copy of all of Lacey’s school books at home so she doesn’t have to worry about bringing them home. I also need to get a receipt for the books we are responsible for so we can avoid paying for an unaccounted book months after we thought we returned it to the school. The teachers need to try to allow Lacey to leave their classroom when the bell rings so that she can get to the next class in time. I am checking into the reduced work load that she is supposed to have as well as the notes/outlines that are to be provided to her in a larger font. I am also really hoping that the school will give approval for Lacey to use her phone during school so that she can utilize some of the applications Brain Line Organization recommends for those with brain injury.  You can check them out here:  http://www.brainline.org/content/2011/05/23-lifechanging-iphone-ipad-apps-for-people-with-brain-injury.html

A short story regarding stress ~ Lacey and I were talking on Friday after school and she said “Mom, I have figured out what I am going to do whenever I feel stress coming on. I am going to Stop, Drop, & Breathe.” As she said this she took a nice long inhalation, closed her eyes, and slowly exhaled. Then she smiled.

Stress 201

That is what life is like now. I know we all deal with varying degrees of stress but chronic stress can be untamed and furiously wild.

Stress can be unrelenting.

We have been officially into the 2nd year post concussion since June 6th. But, last year on this Monday, Lacey’s symptoms began to creep back during band camp. This coming Thursday, last year, her English Honors teacher called her and told her she had 3 days to turn in all of her summer work. Lacey spiraled into concussion symptoms in a very terrible way, never recovering until she started Hyperbaric Oxygen treatments.

When I am under a lot of stress, I clean. My kitchen is very clean today. It was very clean today. It was clean for a few hours. Dinner was really good too. I made fish cakes from leftover grilled Red Snapper. Olivia (Lacey’s sister) made a delicious lemony mayonnaise with some hot paprika to spice it up. The kitchen has not fully recovered.

All day I kept thinking about the experiences that Lacey had to confront last year and I was anxious, nervous, nauseous, and worrying that things wouldn’t  go right for her. Will she be able to handle any new stress that might come her way?

Last year the weather was typical for August, hot and humid. This year the weather has been cooperating remarkably well with band camp last week and into this week so far.

The  school has:

Sent a letter stating that a book wasn’t returned…Biology

But

It wasn’t the Bio book, it was Modern World History. No schedule until it is returned or paid for. We paid. We have Lacey’s schedule which needs 3 classes addressed, changed, switched. I have a call into the guidance counselor.

And

Lacey is taking it all in stride! She has been handling everything just the way she used to, with her strong independent spirit.

Today, Lacey is strong. Knowing this will help me to not worry so much. I am breathing a sigh of relief this evening. Maybe this Stress 201 will be short-lived.

I forgot!

Related articles

Making An Impact

This morning on KDKA radio, I woke up to hear Lacey’s neurosurgeon, Dr. Joseph Maroon, share some really exciting news about Dick’s Sporting Goods making a commitment to provide a baseline ImPACT test for 1 million student athletes across this great land of ours.

The Program: PACE… Protecting Athletes Through Concussion Education.

The Goal: To provide a baseline ImPACT test for 1 million student athletes.

The Plan: With public support, now through September 12, 2011, Dick’s Sporting Goods will donate $1 to the PACE Program for every pair of athletic shoes purchased in any of its stores. There are 449 stores! And they will donate if you order online at DicksSportingGoods.com What great opportunities we have! Let me tell you they are going all out for our kids with even more ways to raise money for the testing. Dick’s Sporting Goods will also donate an additional $1 for consumers who:

**Post about PACE on the Dick’s Sporting Goods Facebook page

**Tweet about PACE with the #DSGPACE hashtag

**Check-in to a Dick’s Sporting Goods location on Facebook Places or Foursquare.

For more information regarding ImPACT, please visit http://www.impacttest.com/

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