Thursday, May 27, 2010

What are the Frickin' Chances?!

As I mentioned before, Elizabeth is back at school in her new wheelchair.  Only her second day and she is outside at recess.  She decides to drive by a group of kids playing tether ball when the rope snaps the hook goes flying and hits her in the head.

The odd of this have to be astronomical as this smooth hook with no sharp edges hits her hard enough to leave her with a significant gash in her forehead. 

In disbelief, the nurse calls and said that Elizabeth was hurt, but it was not due to her EDS.  Remember, she was taken home from school just last week because she sprained her foot in her chair, now she has a gash in her head that requires stitches!

Chuck could not believe it.  "Next they are going to call and say that a rabid squirrel got loose in the school and only attacked one kid, yours."

She told us that a friend of hers said that all of the tether balls were off limits because of the incident.  If the school is going to base what is safe and not safe upon our kids, everyone will be wrapped in bubble wrap and placed in padded rooms.

All I know is that the name of this blog might be a self-fulfilling prophesy; both good and bad.

Tuesday, May 25, 2010

Activity Pacing

"Activity pacing" is what people with chronic pain are supposed to do.  You are supposed to do a little bit, rest, then a little bit more.  By doing this, activities are less painful and theoretically more can be accomplished.  I have not learned this lesson.

My model has always been work until completely exhausted and in pain.  If I feel good one day, I try to do as much as I can because I don't know how good I will feel the next day.  This puts me in a cycle in which I over do activities, need to rest a lot because I cannot move for a couple of days, then I start it again.

As I have gotten older, it is more and more difficult to push through the pain.  Take, for instance, my arms right now.  Both arms are swollen because I have tendinitis in both.  I wear wrist braces to keep me from overworking these tendons and muscles.  However, I still need to care for the house and the kids.  This means that I cannot rest the arms as much as I should.  So after a day of picking up in the house, laundry and light shopping, my arms ache.

I have started to go back to PT just for the arm issue.  Some of the pain has decreased, but I am still impatient.  You would think that I would learn that pacing myself really does pay off, but I am not that smart.  I pray today that I will learn my lesson, because I am in pain today.  I know I will really need to pray for tomorrow or the day after that to really get the hang of this.

Monday, May 24, 2010

Why My Daughter is My Hero

Elizabeth returned to school full time last week.  This might not seem like a big deal in the world, but I think it huge.  It was not just amazing for Elizabeth in her conquering her pain and fear with unbelievable faith and joy.  But it was big for everyone around her.

When she entered that classroom for the first time she was showing her classmates, teachers, family and friends that it is never okay to give up.  She showed that nothing is so big that cannot be overcome with God's help.

Think of all she had to deal with in coming back.  You all might have to overcome obstacles at some point, but I challenge you to do them all at once like Elizabeth.  

First, she had unbelievable pain.  She still suffers from hip pain and her leg gives out because it is so unstable.  Her neck is still sore from her fall.  The rest of her joints (shoulders, elbows knee, ankle, etc) continue to dislocate and cause pain. 

Next, she had to overcome the unknown about her own body.  Still doctors cannot decide if her head is safely attached her spine.  She went through puberty at this time.  Her body has changed quite a bit in the last 6 months.  She went from looking like a little girl to looking like a young woman.  She grew almost 3 inches since September. 

To go along with the physical changes during puberty, she also had the emotional side to deal with, but alone.  She has two great friends that supported her during her stay at home, but little other contact.  She had to go into class dealing with many people with many questions and sit next to BOYS!  She was not even used to being with big groups of people

When she returned, she went into a different class.  She knew only a few people.  Being 12 and going to school every day with the people you know is hard enough.  But coming back with your body different, in a wheelchair and with an adult (a very nice one) is just crazy.

The wheelchair issue alone would have thrown me into a tailspin, let alone everything else.  She does not seem to care much about it.  She is very practical and sees it as something that helps her do what she wants.

Now, she did all of this with a smile and loved going back.  She said that her reception from her friends at school was wonderful.  We are so blessed to have a daughter like her!

Sunday, May 23, 2010

How Can a Loving God Let This Happen?

Have you asked this question?  I know I have many times.  If there is supposed to be a "loving God" why do babies die?  Why do children commit suicide?  Why is there war, sickness and evil?

The answer is both simple and complex.  First, let me tell you some of the books that I have gone to to help with this answer.  The Bible, of course, gives much of the answer.  Two other books I have read recently by Ravi Zacherius and C.L. Lewis.  I think Lewis was easier to understand in Mere Christianity.  Again, I am greatly paraphrasing here.

Lewis and Zacherius both point to the fact that there is good in the world.  We know that there is good in the world because it lies in stark contrast to the evil.  How would we know that good was good if there was not something in which to compare?  If there is good, where does it come from?  The source is God and He places a little of Himself in all of us.

The books go into detail about the ideas of what is good and how we define good.  I will let you read for yourself.  The idea that we know that good is good because it is not evil like we know that light is light because it is not dark.

This is the easy answer.  But then again, it is very complicated as well.

The other answer has to do with if God is good and is love, then we have to understand love.  Love is only true if there is a choice.  If we were to love God, then we have to decide to love Him.  The flip side of that is that we can decide not to love Him. 

He loves us so much that He does not want there to be any barriers to our relationship.  For this reason, He sent His Son to pay the penalty for our straying from Him.

The biggest thing that I have to remember is that He never promised us an easy life down here.  If fact, He promised the opposite.  He said that we would be hated, the road long and the education tough.  He also promised that the end of the race would be all worth it.  We are promised an eternity of joy, peace and love with every tear wiped away.

When I see the girls in pain or when I see that CJ is struggling it is difficult to put this in perspective.  I want all pain gone.  I want all the tears to stop.

I am writing this more for me than for all of you.  This blog has always been self-serving.  I do not have all of the answers.  I do know that God does.  This is my eternal hope.

Friday, May 21, 2010

Trip to the Mall

Yesterday after Erica's eye doctor appointment I promised to take her to the Lego store in the mall.  As we were walking through the mall, Erica put grew more and more excited about everything she was seeing hearing and smelling. Each store had a "more beautifulier" smell than the next. She would comment on the outputs as we walked by saying, "This outfit is very fashionable." Walking by Victoria" Secret, she exclaimed, "OH! She has big boobs!"  And as she passed Ambecrome and Fitch she saw a half naked man and stated, "That's just disturbing."

It took me a while to figure out why she was so excited. Then I realized, I had not taken her to the mall since she had an out of her stroller. Fashion expert of our family, has never really gone shopping.  The physical strain on both her and me proves to be so great that we target only certain activities as to decrease the amount of pain we have later.

At the end of the trip Erica said that the mall was not for me. She said, "You're too slow and old for the mall."  Of course someone overheard it and I had to agree with her.

Thank God for the Ramp!

The strength that my children have because of all they have been through is amazing. I think it impossible to ignore the special training they are receiving at such a young age.

Wednesday, Elizabeth was at school and hurt her ankle while she shifted her weight in her wheelchair. She felt a pop in her foot swelled immediately. We had already discussed plans for her to stay at school all day the following day.

Here lies yet another bump in the road. After four hours spent at Children's, it was determined that she sprained her foot while in her chair. There was some question as to whether or not her tendon had actually said snapped off part of her bone.  But the doctors agreed it was best for her to keep moving it and keep walking on it. 

The next day she did return to school all day braces and all. She was in a lot of pain but the welcome she received from her classmates really lifted her spirits She said that everyone was very welcoming and warm to her. 

Last night I told her how proud I was of her.  I told her that she was a symbol of persistence and strength. She has an amazing ability to keep on keeping on. This is a strength that people can see in her and one that God is developing in her so that God can use it to further His Kingdom.

We hope this sprain is nearly a small nuisance and that she would be able to be walking with little pain soon.

I spoke to one of Elizabeth's teachers yesterday explaining our hopes and Elizabeth will not require a wheelchair at school next year. After I said this was a long pause in our conversation. I realize that it sounded ridiculous that I would hope that she would be able to walk at school without much trouble as she had just injure her ankle while sitting in a wheelchair. Maybe this is part of the grieving process or maybe I'm just fooling myself.  I cannot bring myself to believe that Elizabeth will have to stay in a chair for the rest of her life or even in the short term.

Elizabeth's power chair should be delivered on Tuesday We still do not have a vehicle to transport any of the power chairs, however, we are in the process of trying to solve that problem.

Erica, on the other hand, is struggling with much pain and many dislocations. We are noticing that she's not playing with her friends as much preferring to lie down or to sleep for many hours at a time. I think this is because she is in so much pain and her body is just not quite sure how to handle it. She's relying on her wheelchair more and more.

Thank God the ramp is in because it has been extremely useful for the last few weeks.

Erica is supposed to be in the water working on her aquatic therapy exercises. However both of my arms are in braces due to tendinitis and swelling in my wrists and arms. It will be another four weeks before I am able to help the girls with any of the work they are exercises This is frustrating as they cannot go for weeks without doing their exercises. Help will be arriving soon and way of the caregiver that will come in twice a week but I fear it will take too long to get everything started.

I took Erica back to the ophthalmologist yesterday. They are still finding it difficult to test Erica and her vision because she becomes very upset during the testing.  The doctor did say that there is some correlation between her vision problems EDS. She's not able to focus adequately with her near vision. We will experiment with set of reading glasses for her at the beginning of the next school  year.

It is more of an experiment that it then it is a definite diagnosis of eye problems. We hope that the glasses will help her with her reading and her school performance. It's just a bummer that she has one more barrier one more thing to overcome.

If there's some funky spelling will or words in this entry please excuse me. We purchased a voice recognition software program so that I'm able to type without pain. I think it works pretty well but I will let yet You be the judge.

Friday, May 14, 2010

Divine Providence

A minor victory for the Schulze family as the decision was made to have Elizabeth return to school for a full day.  She began attending school for 1/2 days a couple of weeks ago.  Her pain levels have come down and she has more endurance and has stopped falling.  It will be a great way to end the school year that has been very difficult for her.  Elizabeth had to be taught at home at the end of September because she tore her hip tendon sitting in science class.  She worked hard and was even hospitalized for a week to get her up and moving again.

She was scheduled to return after Christmas break but she fell down the stairs on January 1.  This re injured her hip and hurt her neck.  She was in the neck collar until late April.  There was questions about the severity of the injury and the pain and if it had to do with possible instability of the C1-C2 tendon like Erica and me.   One CT scan showed a very scary picture of her neck.  It showed that has she turned her neck, her head was coming off her spine.  This image was very disturbing and so was the message that she would need surgery.  If you have read any of my entries about the C1-C2 fusion, you will know that this was the worst news.

Other doctors were not convinced that this instability was leading to any real problems.  Then she began to fall and not use her arms to stop her.  She sustained a spinal chord concussion and a head concussion.  No one, even the doctor that suspected the instability could explain the falling.

We struggled to get answers and figure out what to do. What do you do when doctors do not agree? Who do you ask? Where do you go to get a second opinion if you are already seeing the best doctors? How could we get the images and suggestion that a simple fall could permanently damage her spinal chord?

Most did not want to give us advice that could lead to any question of malpractice.  Their advice was simply no advice.  Some doctors would vacillate opinions from one appointment to another, some during one appointment and others during a single sentence!

Ultimately the decision was left up to us.  Gradually the fear of what if has to pass it to what will be.  We pray that we make the right choice.  We pray for guidance.  What we get is what we are willing to put in trust of divine providence.

Monday, May 10, 2010

Mommy's Special Drink

I should have known that leaving Erica with the news man from Channel 9 would be a bad idea. Never knowing what Erica will say,when we realized that Erica was alone when the cameraman Chuck rushed in to hear Erica say to the reporter, "The last time I broke my ankle mommy could not take me to the hospital because she had a special drink."  Chuck and the cameraman had fun making believe that it was recorded. It was not until I saw it on television that Chuck told me the camera was off when she made the comment.

You have to understand that I rarely drink and when she broke her ankle it was my birthday. Usually I take the children to the emergency room when they get hurt and I wanted to spend some more time with my mother so we said that so I could stay home.

I don't think I will ever live this one down. Every time I am tempted to have a glass of wine or enjoy an adult beverage I am reminded of this events and politely decline.

Saturday, May 1, 2010

Wanna Race?

So we were so incredibly blessed with the construction of the ramp.  How do we celebrate that?  A race, of course!

While the TV guy was at the house, Erica twisted her ankle.  It swelled almost immediately.  This is the place on the ankle that she has broken twice within the last year.  Not wanting to go the ER, I asked our doctor to postpone a visit until Monday so she could see her regular ortho.  Any time we take the girls to the ER down at Children's it is more like a side show because all of the med students, residents and even a few regular doctors will find a reason to come in the room and see the girls because EDS is rare.  I understand that it is a learning experience, but it can be very exhausting and stressful for all of us.  The doctor agreed to the delay only if she stayed off her ankle completely.

Anyway, after the ramp was completed on Saturday, Chuck took CJ to his baseball game and I stayed at home with the girls to rest.  I had Erica inside with me for the majority of the time, but she wanted to go outside to play.  I asked her to stay in the wheelchair, to which she agreed.  Are you already guessing the end of the story?

After only 10 minutes, Elizabeth came running in to say that Erica fell.  When I got outside, some of the neighbors had already come out to help.  Erica had challenged the little boy next door to a race down the driveway, not the ramp.  He was on a bike, she was in her manual chair.

The little boy won.  Erica had a fantastic finish with a face plant at the end of the driveway.  She flipped the chair and landed on her head.  Thank God she had her headrest on the chair!

Now bloody, and potentially dangerously hurt, I called the doctor again.  He sent us to the ER.  Upon arriving, the ER doctor recognized Erica.  She commented that even though she has a syndrome, she is still 7 years old. 

The x-rays showed no broken bones, including her ankle.  We could not put band aides on the wounds because of the reaction she has to the adhesive.  She blackened one eye and almost knocked out 3 teeth, but she survived.

At first, I think she was more worried that she would be in trouble than about her injuries.  I considered this a natural consequence and asked her if she would do this again.  "No way!"  So I told her that she already paid the price for her little stunt.

The next day we went to church.  We think that many people thought that Erica went down the ramp and was injured.  We told them that it was the driveway, not the ramp.  I know that the changes to our house will make a big difference in our lives, but Erica needs to be convinced that she is not a stunt driver first.