Help Me Lord, For Your Mercy is Great!

I spent the last week feeling sorry for myself and for my kids.  Monday I went in for another epidural shot in my neck to relieve the pain.  I am due for yet another neck surgery in May.  The last part of the fusion is pushing against my spinal chord at the base of my neck.  I saw the MRI and it looked horrible.  It scares me actually.  The pain is really bad in my neck, shoulders arms and fingers.  Sometimes my fingers don't work the way I want.  I am losing feeling in them.  It is difficult to type.  My arms do not have strength all of the time.  Because it is inconsistent, I drop things and cooking is very painful and difficult.  I feel like I am worse than I was before the other surgeries.  Not only is my neck bad, but my shoulders are an absolute mess.  The tendons are frayed and I wake up every night with my shoulder out of socket.  It is really bad when both shoulders are out because then I cannot get out of bed!  To extend my arm out for any length of time is almost impossible.  Cleaning is hard and laundry makes me cry.  I AM A MESS!

Currently I am applying for disability.  I am doing this so that if Chuck needs to change jobs, hopefully I will have health insurance in the gap.  I do not know if I will ever be insured by another health company again.  To think about it makes me panic, so I am not going to dwell on it, but just complete the paperwork.  I am only in my 40s and I am not sure that I will ever be physically able to return to work again.  What is going on? 
This is not the way it was supposed to be.  When Chuck and I got married the plan was that I would stay home with the kids until the last one was in 1st grade, then I would return to teaching.  I received my Master's degree right before having Wizzy.  Our finances would improve and I would have the same days off as the kids.  Because of not only my physical problems, but my kid's limitations, that dream has gone away.  I have to grieve this dream because I had it so long.  It is hard to think that  I am no longer a viable worker.  My nephew, that claims he is an atheist, said that basically I am a drain on society and should not share in the resources of the economy.  He is young and and idiot, but it cuts to the heart of what people think.  Why should your tax dollars support me?  Why should you work hard and I don't? 

I have to redefine what it means to be viable.  I have to restructure my dream.  I have just been surviving for so long that I have forgotten to dream.  What is my dream of the future?  Why had God put me and my family through all of this?  I know there is a purpose, but what is it?  Am I ready to understand or are there more trails and heartaches?  Where do I go from here?  How long will Chuck be able to take the burden of taking care of all of us and work?  How many surgeries will I have to endure?  How will I be able to take care of the kids?  When do I accept help and when am I accepting too much help?  There is not a rule book for this or a "How to Accept Being Useless in 5 Easy Steps." 

I don't process pain normally.  It takes over my thoughts and my spirit.  I had a blissful 3 hours when the medicine used to relax me for the shot took away pain that I did not realize I even had. Not that I want to take drugs like that all of the time, but man it was amazing!  I did not hurt anywhere for the first time since I could remember.  This feeling made it all the more difficult to deal with the next few days.  As soon as the medicine wore off I went into a spinal headache.  The pain knocked me back.  I could not concentrate or even walk straight.  It took at least 3 days for me to begin to recover.  A spinal headache happens when too much cerebral spinal fluid is in the system and it pushes against the brain.  It is horrible!

On Thursday, I was beginning to recover.  Erica had hurt her ankle the day before just getting out of bed.  The ankle was swollen and for a second day in a row, she wanted to go to school in her "stinking wheelchair."  She HATES her chair, but she could not put any pressure on her ankle.  She has broken her ankle at least 4 times before and she would walk on it for days.  She even would jump off of the x-ray table.  This time was different.  She was in a lot of pain.  So I called her orthopedic surgeon about it.  This was the second day and it was not getting better.  They could not see her, but sent her to the fracture clinic.  The fracture clinic is a group of orthopedic surgeons that sees a bunch of kids that might have breaks in the bones.  These doctors do not understand EDS and it can be a long nightmare of an experience. 

I was preparing to leave to get Erica to the doctor when Elizabeth told me about how she was feeling. Elizabeth feel at the conference she attended in Pittsburgh because she did not take all of her heart meds.  She received a concussion.  We took her into the doctor earlier in the week because of a constant headache and they told us to call back if she felt worse in the head, dizzy or nausea.  When she got home from school she felt all of those things.  I was going to leave CJ and Elizabeth alone just for a little until Chuck could get home. I called the school and talked to the nurse. She did not know about the concussion. She told me to talk to her doctor. I finally talked to the doctor and they told me to bring her into the ER for a CT scan of her head. Well I was already in the car trying to get Erica to the fracture clinic.


I called Chuck and told him that he had to take Elizabeth to the ER in Liberty. He stopped and got dinner for them. Elizabeth refused to eat. By the time she got to the ER she had a fever.

The doctors in the fracture clinic said that Erica at the very least had a broken ankle on her growth plate and probably damage to her tendons. This is her 5th ankle fracture. So she got fitted for another cast. She was crying because she knows that the cast means that she will need to use her wheelchair. She went to the spinal surgeon last week and her back continues to get worse and this was before she broke her ankle. Any change in the gait makes the pain even worse. He has warned us in the past that her mid back is so loose that she could eventually not walk because of it. He had already suggested an increase in her pain meds because of the back pain.

Anyway, she was really upset. I was driving back from downtown and talking with Chuck. He had just gotten to Liberty Children's. So I met him there and switched kids. Because of my upcoming neck surgery and constant shoulder dislocations, it makes it very painful to load and unload her wheelchair.

The ER had just evaluated her quickly her so I got her registered. It was pretty busy but eventually she was brought back. She looked terrible. It was obvious now that she had a fever, which did not follow the concussion symptoms.

We got back and talked to the doctor. I had to explain the recent diagnosis of the subluxation of her C1-2 to 70-80% but because she does not have other symptoms the decision was made not to do the fusion surgery. We also had to explain her condition that is actually worse than POTS and the hit to the head along with the EDS and other fun stuff related to it.

Anyway, she started to make calls, but we agreed that the fever did not fit the concussion. She decided to do a strep test while she was waiting to hear back from some of the other doctors about the CT. Because she had just had the rotational CTA with dye to see if her vertebral arteries were occluded when she turned her neck which was the reason she is not having the surgery, they did not want to expose her to more radiation.

When the doctor came in and said that she had strep we all let out a scream! I have never been so happy to hear that my kids was positive for anything!  After 7 straight hours in the hospital, we were finally on our way home.  Mind you, I am still in extreme pain and can barely move.

Soooo yesterday I took Erica into the doctor for a strep test and she was positive.  Now I am feeling like I have strep as well.  I will go in on Monday before I have to take Erica in for an heart echo. 

Okay, enough complaining.  Tomorrow I will hopefully feel better.  I know that God is right here and His sufficiency is boundless.  I ask for faith to understand that His timing is perfect and He will make me whole and healed in the way He sees fit.  It might not be the way I planned or expected, but He is so much more than me and knows what I need before I even ask for it.  Help me Lord, for your mercy is great!

Glory Be to God!!!!

Elizabeth will not need to go through the C1-C2 fusion surgery, right now.  I say right now, and this will sound ridiculous, the only thing wrong with her is that her head comes off her body at least 70%.  The problem is the doctors do not know what is considered normal.  We cannot risk surgery based only on that test.  The risk would be worth it if she was turning her neck and the arteries to her brain were being pinched.  She went through a series of tests to determine if this indeed was happening.  According to the tests, she is okay.  She is not having numbness and tingling or severe headaches or neck pain.  She is also not having any changes in her brain or spinal tissue. Given all of these factors as well as the fact that she is still falling and this could be deadly while recovering from the fusion surgery, we all decided that she is okay for right now.

That CTA that was created for her turned out to be a huge blessing.  We did not need to guess or try to figure out on the operating table if the arteries were being compromised.  Praise God!

While preparing for the CTA, the decision was made to take her off of some of the medications that she takes to control her blood pressure and heart rhythm.  She crashed pretty hard.  She had difficulty walking, paying attention and was very dizzy.  This gave us additional information that the neck is not the culprit in the blacking out episodes.

Right now she will not need to wear her neck brace which is such a blessing for Elizabeth.  This is the part that I cannot explain to the doctors.  Before we went into the appointment, Chuck, Elizabeth and I all decided to place the final decision in God's hands.  We asked God to speak through Dr. Durrani.  God is the one to be praised here.  It was our willingness to let go of control of the situation and allow God to direct our path.

This is not to say that she will never need the surgery.  She will be followed by Dr. Durrani and if and when she does develop any of the symptoms mention above, we will know the source and know what to do for her at that time. Until then, we will trust that God knows what He is doing.  It is a leap of faith to know that your daughter's head is not attached very well and be okay with that.  We cannot live in fear.

Currently she is attending a conference on leadership.  She fell last night.  I am staying the same hotel and the directors of the conference called me right away.  I took her to her room and discovered that she had missed a total of 4 of her scheduled medications.  I think we found our smoking gun!  I was able to give her her medication, some salty snacks and lots of water.  She felt so bad when she realized that her fall was due to the lack of medicine. 

After about 2 hours, she was able to return to the conference and even participate in a variety show that she had organized!  Her classmates cheered when she sang a song in Japanese.

God is so good!

Where Is the Parenting Book?

Seriously, when you think about being a parent or doing the act that could create a child, do you stop and think, "Will I have to decide to surgically attach my baby's head to his/her body?"  Where is that in the "What to Expect" book?  There are subjects not touched by that book.  Maybe there was a parenting book that was supposed to come home with us when we, blissfully unaware, took our baby home for the first time.  If there was one, I must have lost it.  I still believe there is one out there that explains the rules for talking about why kids pick on kids at school or how to explain that Mommy's time in the bathroom should be "alone" time or the number of sick days a parent should get.

Even in the best book, I am sure there is not a chapter on how to explain to your 13 year old that she will have to have her head surgically attached to her body because when she does turn her head it comes off at least 70% of the way.  Even if it had that chapter, I am pretty sure it does not explain the ins and outs of checking to see if she is hitting her vertebral artery in the process thus explaining some of the instant passing out she has done for the last year.  As far as parenting goes, I think Chuck and I are the first to have two children undergo this procedure because of EDS.

I have a choice, I can ask why my kids?  But this will do no good. (I've already tried it and it really does not do any good.)  I could get really mad at the doctors for taking so long to diagnosis this, but to be honest, they are creating a brand new test just for Elizabeth to check to see if she is hitting her vertebral artery.  I could get really scared and place her in a bubble until she has the surgery and worry every minute that if she turns her head she could have an instant stroke and die.  (This is a real possibility by the way)

OR I could trust that God has taken care of her up until now.  I can realize that we are ABUNDANTLY blessed!  We live in the city with the best doctor for the job.  If you read the previous post you will see that the modifications for the house are continuing and I am still unsure how we got all the funding we did to get this far.  She will still alive and will be after this surgery over.  I know that I know that I know it.  I have REAL peace about everything and I believe this is a result of the many, many prayer said for us over the last 3 years.  I know that it is peace from God because I am not strong enough to muster that much peace over the parking place I choose on my own, let alone a surgery that has the potential to be deadly.

There is a good amount of freaking out in my house right now and there will be more to come, but we are doing this together with God.  He created the Heavens and the Earth and that little gnat that bugs us.  He can handle attaching her head.

It Has Been 3 Years and I Want Off This Ride!

I know I have talked about changing the name of this blog, but today it is so true.  I could not make this stuff up.  I am going to start with the good, but it is very good.  It is "blessed beyond belief" good.  First, our elevator is installed and works!  We have an elevator in our house.  Do you have any idea how cool that is?  This allows my husband and I to sleep in the same bed for the first time in 1 1/2 years!  The elevator also means my daughter can move back to her room with a DOOR.  This is incredible.  God's grace is sufficient!

Work will continue to be done on the handicapped accessible bathroom tomorrow. The bathroom is drywalled and painted.  Tomorrow the floor will be tiled.  This bathroom will allow all of us to take a shower safer.  It will also have a raised toilet seat which will put less pressure on my daughters hips, therefore, reducing her pain.

Plans for the accessible kitchen are in the works.  The architects from Hearth Professionals made up some amazing changes that will hopefully allow all of us to cook in the kitchen with less pain and injuries.  This is a miracle if you think about it.  Just one year ago we were just talking about all of this stuff and now it is happening!

Just as crazy good it has been, there is another side.  I do not want to take away from the appreciation that I have or the glory to God I give in sharing all of the following, but it is what it is.

Last Wednesday I got a call from my mom that my grandmother was in the hospital.  She asked that I go in the next day as my mom was in a lot of pain and that day would be the 3 year anniversary of my dad's death in the same hospital.  My grandma had to go into the hospital because she fell and hit her head.  She was apparently bleeding from the rectum.  When I went in that morning I found out that she had 2 transfusions.  She was preparing to have a colonoscopy that day and the nurse asked if I would stay so that the doctor could talk to me.  I ended up staying for 10 hours changing my poor grandmothers diapers every 30 minutes.  The nurses were not able to come in quick enough and my grandmother could not make it to the bathroom.  It turned out that she had a bleeding ulcer as a complication from her last surgery when my mom was in ICU a couple of years ago.  The doctor put a clamp and medicine and she will be fine.  She is a tough old bird!  

I spent part of Friday with my grandma, but I had to go home so that I could take Elizabeth to get more imaging done of her neck.  The neurologist said that she might be hitting an artery going to her brain that is causing her to pass out suddenly.  This complication could mean that she could turn her head and have a stroke or die instantly.  We had to go back twice because the techs messed up the imaging.

Saturday I spent in the ER with my mom.  She was having such bad spasms in her back that we were unsure if she broke her back again.  It turned out that it was just spasms and no breaks.  Praise God, but she is still in a lot of pain.

All of this during the week that my dad died 3 years ago.  My grandma was in the same hospital on the same day as the anniversary of his death.  It has been 3 years, I am really tired!

Ignorance is Bliss?

Today, Erica had her yearly appointment with the neurosurgeon.  Everything looked good.  Her "hardware was in tact."  (What an awful thing to say about some one's child).

I told the nurse about my neurologist's theory about the bleeding in my brain out of earshot of Erica.  She, in turn, told the neurosurgeon.  Basically, if there are genetic factors to the bleeding in my brain, there is nothing he can do for Erica or Elizabeth for that matter.  The blood vessels in the brain are so tiny and numerous.  He said that we could do an MRA (fancy MRI) to check for bleeding, but then what?  We can do nothing to stop it, prevent it so why know? 

Okay, this is my baby's brain we are talking about.  I can barely accept there is nothing they can do for my brain, but for her?  SHE IS 7 YEARS OLD!  He told me like there was a mole on her back or and ear infection.

So, again, I have a choice.  I can live in fear of her bleeding in the brain or go on and not fear.  How much more of this will we have to take.  It is like a horror movie that does not end an gets worse with each scene. 

Theoretically it is a miracle that any of us are here, alive, functioning, moving and surviving, given the scientific odds.  God's grace gives us the chance to be on Earth so we can yearn for our real home-heaven.

She is Right in More Ways Than One!

My daughter is 7 years old. When she was 5 she had a C1-C2 fusion. She told this story: " I met a girl yesterday. I told her that I had to have my head attached to my body. The girl said 'Wow'. My daughter continued. It's okay I am screwed now!" You have to laugh every once in a while!

A Sigh is Just a Sigh...

Our family had a good Christmas.  We ate too much; stayed up too long; made a mess; went to church; made cookies; saw family and friends and generally had a normal Christmas.  It was glorious!  I rode home in the back seat of our car with my son yesterday and he put his head on my shoulder and whispered, "Merry Christmas" with a sigh.  It was the best gift ever to hear- that contented sigh.

I cherish contented sighs.  I long to hear them.  I want to create them, though I know I cannot.  I do everything I can so that my kids will have a contented sigh.  We all do if we think of it.   A contented sigh means that all their needs are meet, physically and emotionally.  The sigh means that they are met so abundantly, that satisfaction is putting them in a relaxed happy place.  This is a place free of pain or worries.  A thought that all is right with the world right now.

I just wish I could hit the pause button on that moment and others like them.  I don't think I am the only one that does not hear contented sighs from those around me or makes them myself.  Why is that?  Why do I not sigh contentedly more often?  I have many things in which to be grateful, but do I sit back and contemplate them and recognize when I am contented, satisfied, or happy? 

No, I don't.  Usually I am thinking about the next thing I need to think about or worry about.  Worrying never produced one contented sigh.