"Mommy, I am WAY under dressed for this funeral!"

Do you every get to a place and think to yourself, "How in the world did I get here?"  I found myself asking that question as I was standing at my grandmother's funeral service rocking my mom jeans and trying to answer Erica's question as she was taking off the ER bracelet off of her wrist.

We had another one of those days a couple of weeks ago.  My son had hurt his hand on the first day of fall baseball practice.  Ball against finger- ball won.  He broke it right on the growth plate, of course, and had to go in for a cast.  This was scheduled for the morning of my grandmother's funeral.  She had died the weekend before, peacefully.  It was very hard on the kids as she lived close and they saw her quite a bit.  This was their first funeral that they lost someone so close.

Anyway, I was driving CJ back to school and heading home when I got a call from Chuck that Erica's school called and said that her arm was hurting, had electric shocks down to her fingers and she could not put her shoulder back in on her own.  I told him that I was close to the school and I would drop by to "pop her back in place."  (Why do I think it will be just and easy fix?)  I got to the school and realized that I could slide her shoulder back in place easily, however, it would not stay in place.  So I called the orthopedic surgeon and said, "I can get her shoulder to slide back in place, but it will not stay there."  (Remember these words, you will see them again.  It is called foreshadowing, I think, in literary terms).  I was told to bring her down to the ER to the main campus right away.

Okay, so we are off to the worst place we can think of in a 300 mile radius, the emergency room.  Not that this particular ER is bad, it is just all ERs are stressful for everyone, but especially hard for kids with a rare orthopedic syndrome.  We call it the "Horse and Pony Show" because the residents, med students and such want to come in and see the cool party tricks she can do because of  the EDS.

Erica endures the poking, prodding, questioning and x-ray pretty well.  The chief of the ER comes in who happens to be a friend of our regular pediatrician.  He takes one look at her and we were shown the forms for permission for sedation so they can put her shoulder back in place.  The next minute this very young ortho resident comes in and says that she needs another x-ray.

The x-ray he orders is one that required her to put her shoulder in a position that she thought would hurt her.  The x-ray techs did not help by pushing her and yelling in her ear.  I stopped the whole thing saying that her pain was not addressed and until she got something for her pain, we would not proceed.  The medical student was trying to hurry her along so she would not miss her great-grandmother's funeral so he runs out of the room to tell the head of the ER about the resident.  I guess they have a big fight over what to do, but the ortho resident is now calling the shots.  I just love it when a resident pokes his nose in where a 40 yr vet of the ER has it under control!

The doctors give Erica her medicine and the ortho resident comes back in to explain that the x-ray is not that big of a deal.  He promised that he would go in and talk to the x-ray techs on how to do it.  Well, he lied, of course, and she and the techs screamed at each other until the pictures were taken. 

After 6 HOURS this is what the orthopedic resident said to me, "I can get her shoulder to slide back in place, but it will not stay there."  REALLY?  "What are you going to do about it?"  "Nothing, I can't do anything in the ER."  You mean to tell me that after 6 hours, potentially missing my grandmother's funeral, painful x-rays, screaming and all the other fun we have had and this is all you can offer her?  I told you this hours ago!!!  I thought the top of my head was going to come off!!!

"Can't you even tape the shoulder in place so she can get out of pain at least temporarily?"  He said he didn't know how to do that.  Don't they have guys without med school educations that do that next to the football field every Sunday?  "Yeah, but I don't know how."

Fabulous!!! Out the door with a girl that wants to rip off her arm it hurts so badly to try to make it to at least a little of the funeral.  I was supposed to read one of the scripture verses during the service for her and I am in jeans, no make-up and I was pretty sure I remembered to brush my hair this morning...not so sure about my teeth.  I can't remember the last time I took a shower because of course I would have time before the funeral. 


We get there at least 15 minutes into the service.  "Mommy, I am WAY under dressed for this funeral!" says Erica as we take our seats.  "I know Sweetie, so am I, but Nana doesn't care anymore."

"Hope is a Dangerous Thing"

Elizabeth made it through the surgery and is recovering well.  She is less than 2 weeks out and already running!  Her pain level is much lower than before the surgery.  We saw pictures of what her hip looked like inside and it was a mess.  The area that was filled with nerve endings was inflamed and frayed.  The surgeon cauterized and shaved the tendon thus destroying the painful area. 

All of this occurred up at the Cleveland Clinic.  This place is huge!  There are 3 hotels on the at least 29 block campus.  In one area it looked like a mall with shops and restaurants.  The day before surgery I think we walked the entire place trying to get all the tests completed so she could be cleared for surgery.

Elizabeth did stay over night after the surgery and I am very happy she did so.  She spent most of the day after the surgery sick to her stomach.  The surgeon said that he could not remember the last time he had an arthroscopic patient stay over the night, but it would have been a nightmare with 3 kids in the car and a 6 hour drive and having to stop while she got sick on the way.

The best thing about the surgery is that it has given Elizabeth hope.  She now understands that pain is not a permanent part of her life.  Sure, there will probably be times that she has pain, but it is not a constant.  "Hope is a very dangerous thing!" (I can't remember the movie, but I like the quote)

Elizabeth is Human

We are now a week away from Elizabeth's hip surgery.  She is very afraid and is having difficulty expressing it.  I think she thinks that she needs to be strong all of the time.  We compliment her on how strong she is and even said that she was, "freakishly sane" for a 13 year old.  She apparently is so upset by her surgery that she developed a "conversion disorder".  This disorder is apparently common amongst people that have chronic illness.  When the heart cannot express what it is feeling, those feelings are converted into a physical symptom, such as numbness, inability to talk or hear that otherwise has no physical reason for the symptom.  The people with conversion disorders are unaware that the symptoms are not real.

Elizabeth is so strong and does not show her emotions freely to anyone.  I think she is afraid to let herself go because she worries about everyone.  She told us that she was afraid to express her sadness or fear because it would "make everyone feel badly." 

I feel so badly for her right now that we have such an atmosphere in our family.  I feel mostly to blame as it was my inherited disease and I am the one that I think she wants to protect the most.  I also proclaim my faith and I think she needs to do the same.  But her faith is different than mine and it needs to be developed over time.  We reminded her that she is human and it is okay to cry and be scared.  I think I cried every day when I was 13 and I didn't have nearly the stuff going on that she does!

It is really hard to know what to do in this situation so we are turning to a psychologist for this one.  Of course the really good doctors do not accept insurance.  Not that money should deter us from helping her, but it is a big pill to swallow.

I do hope that she is able to find some peace through this process and maybe everyone could be helped. 

Also, this is a very sensitive subject, so please do not mention it in front of the kids. Thanks!

Erica is Doing Better

Erica is doing a little better.  I don't think she realizes it, but she is not complaining as much and she is not so dramatic at bed time.  She is also doing more for a long time.  I think this is directly linked to prayer.  I thank everyone who prayed for her.  I just have to convince her that she is doing better and to remember this time.  Do I believe this is a complete healing? No.  I had to come into her bedroom last night because she was in pain.  She does not even remember me rubbing her back.  I hope this is the start of a good period for her.

My Yoke is Easy...

When is this all going to end?!  We have lived in crisis mode for so long, almost 3 years, and I cannot take it!  Right now my grandma is in the hospital with staff and MRSA. She had to have emergency surgery a couple of days ago to get the infection out of her knee.  Being 91 with diabetes, I do wonder what God's will is for her.

My mom has not felt well enough to leave the house lately because of a major headache and sinus infection.  She does not feel well enough to even go to the grocery store.

Elizabeth is unable to walk because her hip is "out" again.  The doctors think that the tendon in her hip that is torn gets caught between the bones.  It usually takes a couple of days for this to resolve for her.  To top it off, she broke her ankle on that side.  She is going to have surgery at the Cleveland Clinic at the end of July for her hip.  Hopefully this will be the beginning of the end of her hip problems.

Erica continues to have back pain.  At night her pain has been so bad that she begs to go to the hospital or heaven.  We are still waiting to hear about her back.  She has had testing done and a visit with the neurosurgeon and still no news on if she needs to have surgery for a tethered cord.  If she does have this condition, then she will undergo a minor surgery that could get her out of pain.

I have been in so much pain that I cry every morning getting out of bed.  My lower back is so bad that I cannot bend over for about 2 hours.  The medicine I take kicks in and I can finally get around.  The stress I am sure does not help.  I really need to get over it.

While I was praying for Erica I got so upset about the outcome that I felt convicted by God.  "I have plans to prosper you not to harm you, plans to give you hope and a future."  (Jeremiah 29:11)  God will be with us no matter what the outcome will be, surgery or no surgery. 

I praise God that he continues to bless us as we are in this storm.  Just as I feel like my strength is giving out, I am reminded that it is not my strength, but God's that gets us through.  In today's Gospel, "My yoke is easy and my burden is light."  Please help me lay down my burdens and take up the yoke of Jesus.

Give me Strength

My anxiety has been so high, sometimes I feel like it is hard to breath.  We are waiting to hear when Elizabeth's surgery will take place up at the Cleveland Clinic.  All while Erica has been going through testing to see if she has a tethered cord.  My mom has not been feeling well and my grandmother is hurt and not doing well either.  I have been in so much pain when I wake up my back hurts so bad that I have to take medicine before I can move.

Please don't take this as I am unappreciative of all the blessings that have rained down upon us.  I know that it is not right to be anxious right now as God has shown that He is right here with us, but I cannot grab a hold of that hope right now.  I am not sure why while I know things on such a high spiritual level, yet these struggles still bring me to my knees doubting everything I believe.

I guess I would love to see my kids out of pain, but I am not sure that this is God's will.  How do I deal with this reality?  Am I able to praise Him while my kids are in agony?  I do praise Him because I know that in the end all things will turn out for the best.  All things will turn out to glorify God.  Please give me the peace and strength to handle what he gives us.  Please strengthen my children and family as well.

My Fun in the PACU

I had my surgery to correct my loose screw in my spinal cord a few weeks ago.  At the last minute is was rescheduled a week before the previous date because I think God knew I could not wait.  Thank God my husband was flexible with his schedule so I could get in for some relief.

The surgery was pretty straight forward.  I have had the top two vertebrae fused (C1-2) to put my head on my body, then I had C4-6 fused just 6 months later.  The second surgery made me feel much better and I had relatively little trouble until recently.  My arms were aching so much that it was difficult to do anything with my arms.  My fine motor control was also declining because my fingers were numb and tingling.  It is really strange to stare at a book or a dish and think, "I just need to take it over there.." knowing that this simple task would be not only painful, but probably impossible.  It seemed to me that everything in my day involved my arms.  Even a hug or talking on the phone.  I knew it was time to go under the knife again.

I was more nervous about this surgery than with previous surgeries but I am not sure why.  While I was getting prepped, the anesthesiologist came in to talk to me.  She read my file very carefully and reveled many things that I did not even know about my own body.  First, she said that I have a vessel in my brain that could rupture.  She said that everything should be okay, but they have a helicopter outside in case it does during surgery.  That made me feel much more relaxed!  Then she told me that I should not have stopped taking one of my medicines because it put me at risk for a pulmonary embolism.  I was getting calmer by the minute! 

I warned her, the nurses and all of the other doctors that I dislocate very easily while under anesthesia, however, I guess the message did not get to everyone because I woke up with a dislocated shoulder.  Before I could talk I was trying to communicate that my shoulder had to be put back in, but the nurses did not understand me.  Finally, I regained my speech, and they told me that they were not allowed to reduce it!  "Well, get someone in here that can!"  They had to call in my surgeon, who is an orthopedic surgeon but specializes in spines to put it back in.  Everyone in the PACU heard it pop!  He probably had not reduced a joint since his residency.  I really do not blame anyone for the dislocation.  Before the surgery I was dislocating my shoulder multiple times a night.  I would wake up and put it back in.  But during the surgery, that lasted at least 4 hours and my time in the PACU, it was out too long.  This caused extra pain because my muscles and nerves were really ticked off.

It is bad when you are still in the PACU and you realize that you need another surgery!

This was confirmed when I went to a shoulder specialist.  He looked at the MRI I had done months before and said that I needed surgery on my shoulder.  My shoulder is much worse now.  He also told me that I needed to have the radial nerve release as soon as possible because I will lose the ability to control my hand if I leave them compressed for too long.  So if you are counting, I will need a least 2 more surgeries soon.  Great!  Are we having fun yet?!

Surgery on the House and Body

The house and the body are undergoing a radical transformation. In the last couple of weeks, our old kitchen was taken out and the process of reassembling it has begun. A wall was removed to expand the kitchen into our old dining room. This is the same dining room that housed Elizabeth for 1 1/2 years. We are all happy that this room is no more and will be much more functional in the future. Right now the ceiling of the new kitchen is gone and the skeleton of the cabinets are beginning to be installed.




Because the kitchen is in this state, we all are surviving on paper plates and the kindness of others. Our church has stepped up to bring us meals because of the difficulty of cooking any sort of meal during this time. Meals are further complicated because of the state of my health. A screw is pushing into my spinal cord at C-6 (toward the middle of the neck) and causing a lot of problems. There is pain in the neck area as well as weakness and a numb feeling in my arms and fingers. Most of the time I think it would be much better if my arms would just disappear right now because the pain is so intense.



Daily tasks such as typing, writing, making a sandwich, even turning a faucet are very difficult at this point. Still unable to take any powerful pain medication, little can be done to elevate the pain. This is why I am looking forward to my surgery. Last week I came close to going to the ER and asking them to just knock me out until the surgery.  I am nauseous because of the pain.  It is difficult to do anything!  Just think, almost everything you do involves your hands.  I am so tired too.  My shoulders dislocate while I am sleeping.  This causes me to wake up because of the pain in my shoulders as well as the numbness in my arms and fingers.  Sometimes I have a lot of trouble putting my shoulders back in and I look ridiculous rolling around my bed trying to get my arms back in place!  If it did not hurt so much it would be funny!  I try to get things done in the house and it only causes more pain.  I can't do my hair either.  The pain is so bad if I try that I end up sweating like I have run a marathon just by brushing my hair.  It is insane!  I thank God that I will eventually regain the use of my arms.  I don't think I will under appreciate them again.

Much to my surprise, God heard my cries and the doctor's office called and moved up my surgery date to Wednesday! My husband is so wonderful to change around his schedule to accommodate this curve in our lives.



So on Wednesday, a doctor will draw from my spine that which is pinching it and causing so much pain. Hopefully the relief will be immediate and permanent, but I know that given my mom's spine that is totally fused from top to bottom, my chances are slim in avoiding further surgeries. This is the nature of Ehlers-Danlos Syndrome.



Within weeks our kitchen will be fresh and new and easier for all of us to maneuver about and my neck should be fresh and new and easier to maneuver about!



We are so incredibly blessed by all that people have done for us it is difficult to express my true appreciation. Just know that God is a God of sufficiency not of insufficiency! I will praise His name forever!

Miracles on Top of Miracles

So many miracles are happening in our family’s home right now. After a year of hard work on behalf of the members of Hearth Professionals and COTF the home is almost complete. The elevator is installed and came in the nick of time as Erica broke her ankle for the 5th time just days after installation.




Friends of ours helped take down cabinets in our home over the weekend so our new kitchen could be installed. In order to save many hundreds of dollars we had to order a new dishwasher that we knew we would not use from IKEA. It just so happened that these same friends were in need of a new dishwasher. They also needed a working microwave. We could not use the microwave that we just bought a couple of years ago so we were blessed to give them both. It is amazing how God can just see the whole of the situation and bless so many people with such small “coincidences”.



Each part of this project seems to be blessed beyond measure. For instance, one of the architects that is a part of Hearth went to discuss flooring options with an owner of a flooring company. The owner asked what the project was about during their conversation. The architect, Brian Schwiederman, explained our situation and the owner told him that he had gone through a stressful time with his son because of a brain tumor. His son is fine now, but he remembered how difficult it was to have a sick child so he offered to upgrade the flooring that they were considering at cost, minus 10% and install it for free! Brian was amazed as he did not even ask for any of it.



Another example comes from near the beginning of the project. Hearth Professionals were presenting our situation to a group of vendors and other professionals. Again, without asking, a man came forward that owns a company that does automation of switches for homes and businesses. He offered to wire the entire house so that lights would turn on automatically when someone entered the room. That doors would open and also there would be personal remotes for everyone in the house to operate most of the electronics.



When the subject of dishwashers came up, Marnie Renda, the occupational therapist that originally presented our situation to Hearth and COTF, suggested that we get a new type of dishwasher that is a single drawer. She thought two of these drawers would help then theorically we would not need to empty a dishwasher. One would be for dirty dishes and the other for clean. When the time came to order the dishwashers, Deb Witcomb, president of COTF, talked to the sales person. The salesman said that the price went up since they first discussed these dishwashers. Deb explained that the price increase put these dishwashers out of reach because of the budget. She also explained the project that she and the others were doing for our family. The salesman said that there is no negotiating room on the price as the distributer sets the price. Deb went home disappointed. Before she got home she received a call from the same salesman that said that he had called the distributer and explained our situation. The distributor not only honored the original price, but doubled the size of the dishwashers to a total of 4 drawer!



“Such light, such joy flows out from this house. It affects all who come here. You told Me it was My Home. I shall use it.” (God Calling April 18th)

The company that Hearth selected to install the tile in the bathroom also blessed us. Apparently that owner of the company had a few boxes of beautiful tile in his garage that he picked up at a low cost over 3 years ago. Hoping to use it one day, no customers wanted it. He brought it out to us and I loved it. It fit right into the color scheme of the bathroom. This is high quality tile that you would see in a 5 star hotel. This tile was installed in the house for free.



The $60,000 that needed to be raised for the project fell from the sky. Plans were made in the early stages to have a fundraiser, but they fell through. Instead, the girls were placed in a Level 1 waiver from the county that allocated funds that could be used for home accessibility. The problem was no one had ever used the funds that way. Sandy Donathan, our Support Coordinator, petitioned the state to use the money in this way. She won her case and the money was used to purchase and install the elevator and part of the kitchen. The other moneys have continued to flow in steadily over the last year.



18 months ago our family felt like it was being ripped apart. I remember vividly embracing my whole family in a circle screaming, “Satan, you will not triumph in this house! This house and the members of this house belong to the Lord! Now get!” Well, Satan continues to try. It seems with each incredible blessing some calamity comes our way like an ER visit or a broken bone, a sprained ankle or surgery. However, I still claim that we are victorious because Christ overcame the world. Now we see His victory over our circumstances in the form of this amazing transformation in our house. People who were strangers to us just 2 years ago have poured their hearts and souls into our “Extreme Home Makeover.”



I told Elizabeth and Erica that a man at church was extremely upset because, “his prayers had not worked. I wanted instant healing for your girls.” Elizabeth piped up and said, “We do have instant healing, it is just in our souls, not our bodies.” Others have suggested that maybe we are not healed from EDS because we do not want to be healed or that there is something within us that blocks our healing. What I say to that is I know that God is with us. He could not be more present to us is He were to sit in the room! I would take a lifetime of pain if it meant that God is so close to us.

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!