Friday, July 31, 2009

Three Doctors Appointments

It was a difficult day today. A nurse called me for my medical history and the list of what is wrong with me coupled with the number of medication I am allergic to depressed me. I am not quite sure why other than I had never heard it all in one sentence.

We had a total of 3 separate doctor appointments as well. We met with the geneticist for our oldest daughter. We have been concerned about her sleeping and her hips. There was no good answer for her hips. Even if she does have hip damage, there is little the doctors can do. Hip replacements do not go well with hyper mobile joints. The hips become damaged because the sockets are formed from pressure on the head of the leg bone and the hip socket. With use, the hip socket becomes deeper and smooth. Because our ligaments do not supply adequate pressure, the socket is shallow and can become "uneven." He did not agree with the chorodolysis diagnosis either.

Her sleep problems are something that we can continue to address. She has had problems sleeping for over a year. We have tried addressing it through bio-feedback, sleep hygiene, melatonin, Benadryl, progressive muscle relaxation and so forth, but falling asleep and staying asleep are still giving her problems. The geneticist will refer her to a sleep clinic where they will hopefully send her to a sleep behaviorist.

The difficult part of this appointment is the lack of solutions. Really, there is little we can do to keep traumatic events such as dislocations and broken bones from happening. Each time we go to a doctor appointment it is a reminder that what we had expected of our life, is no longer possible. This is not entirely bad, just different. We are still grieving our expectations. Today, along with getting ready for surgery and our other daughters broken ankle, it felt like a slap in the face.

Our youngest daughter had to go back to the orthopedist because her heel was giving her pain. She woke us up in the middle of the night, complaining of pain. They took the waterproof, walking cast and put on a cotton cast with the heel cut out. This means that she must stay off her foot. She has to use her chair or be carried.

More and more we are confronted with the fact that a 2 story house is not meeting our needs. I am not sure what we are going to do about it now, but we did discuss the possibility of moving her bedroom to the dining room area. We would still need to carry her to the bathroom to take a shower, however.

I know what will happen if we modify the house or move. The traumatic event will stop and we will wonder why we made such a big move. We shall see...

Wednesday, July 29, 2009

I visited my surgeon today for my preop appointment. It was re-scheduled from Friday, so I had to go alone. Things were not too bad, but I started a migraine headache in the office and I am still in the throws of it now. I think it was because I could not take any pain medications all day. I couldn't read the list of questions or even dial the phone so I could have my husband in on the conversation.

There was good news from the visit, however. My surgeon explained that he would only fuse 3 vertebrae to correct the position of the neck so it is not pushing against my throat. This will hopefully elevate the unending pain in my arms. Swallowing will probably be worse for a while due to movement of throat during the surgery. He is also hopeful that some of the migraines will be reduced. The nerve pain will need a long time to recover, but he is hopeful that this will also improve.

The surgery is scheduled for only 2 hours and he said that I will only need to spend one night in the hospital. The recovery should be quick as well. He said that recovery from my C1-C2 fusion would take a year (I am only 6 months out from that surgery) but this one is only one month.

He is going to do the whole surgery from the front and will not cut any muscle. I should not need to wear a hard collar either.

This is great news on all fronts. I had heard from my pain doctor that this surgery would be more invasive than my C1-C2. I could not imagine anything being more painful than the recovery from that procedure, so naturally I was very nervous. I do hope and pray that all the surgeon said today will be correct. I knew that the C1-C2 fusion would not get me out of pain. It was a procedure to help save my life. This surgery is different in that it is not life-threatening, but pain relief.

There is other good news. I finally made contact with a social worker. She is in a new position at Children's. She covers families with chronic illnesses. Within a couple of days of our first phone call, she had tracked down a clinic at Children's that specializes in treating children with special needs. This clinic's website description was a list of everything that I had been praying for during the last year and a half. This center looks at the whole child and the whole family. I had been saying all along that the 13 different doctors and therapists that we see only address one aspect of our children. Too many times the advice we would get would be contrary to what a different department would say. This led to confusion and frustration on our part. With the help of this clinic and it's resources, appointments could be coordinated so that we don't need to go to Children's multiple times a week. They could set up a "care conference" between all of the doctors so that there is consistency in their care. This clinic also has social workers that help the families with organizations that can help the family as well as dealing with insurance companies.

The social worker did warn me that there is usually a 2-3 year waiting list. She gave me the name of one of the nurses at the clinic. She would decide if we would even be eligible for the clinic services. When I spoke to her, she had already heard about our family from our new social worker. I explained more of our situation and she said that she would get back to me at the end of September or beginning of October. I thought she meant she would give me an answer as to if we would be accepted. She explained that we were already accepted and this would be the first opportunity to schedule an appointment. I asked her of which year and she replied, "This one, we can see you in a couple of months."

When I heard that, I began to cry. I felt such a weight had been lifted from my shoulders! In the last year and a half I have done nothing but work on coordinating care for our family and my mom and now I have a resource to go to for help!

It is almost like a dam breaking and we are finally going to get some rest and peace. I know that God's timing is perfect. Just when I thought I should yank the whole family out of the endless stream of medical issues and go it alone, God sends down an answer to a prayer.

Monday, July 27, 2009

Unnatural Mourning

Today was a reminder that even though we suffer with pain, there is always somone that suffers more.

I got a call from a friend of mine that knows a family that used to attend our outreach ministry on Wednesday night at church. We all loved this family and became close to the children, as well as the single mom of at least 4 children.

She and her family moved about 1 1/2 ago, but evidently moved back to the area last month. My friend called to say that this single mom had to take one of her children off of life support today.

We don't know which child or what happened, but it does not really matter? What really matters is there is a mom that has to do the unthinkable. She has to bury one of her children. This is not the natural way. This is against all that we believe to be good about this world.

The lie is that this world is good. It is not. This world is filled with sin and evil. This world is not good. We are not to be too comforatable in this world, because our real home is with God.

I had a friend of mine say, "Sometimes I think we all put too much emphasis on our comfort here on earth." These words, sadly, probably will not comfort this mom right now. I dare say that there are no words or actions that will comfort her right now.

The problem too often is that people think that they need to say the right thing, or do the right thing when people are in trouble like this. The fact is, nothing people do or say will help her right now. "I will just pray," is more than the last resort, it is the answer. I read one time that the power or the Reserection is most powerful in the graveyard.

What people need to do is surround this mom with prayer and love. To excuse her when she screams and cries. To listen to her when she wants to tell stories of her child. To look at pictures with her and to remember that child forever.

After my brother died, many people pulled away from me and our family. They said they didn't know what to say, so they said nothing. This is the worst type of offense for the grieving family. The biggest fear is that thier loved one will not be remembered.

Time will not heal this broken heart. There will be a permanent scar on this mom and her family while they dwell here on earth. Only the Savior has the healing touch that will help her.

I am asking anyone that reads this to pray for Tawana and her family. You will probably never meet her, but your prayers and love do make a difference. Pray for peace for her and all families that they never have to know this unnatural mourning.

Saturday, July 25, 2009

Are You Still There?

For the last 5 years, I went out to the Navajo Reservation to lead a vacation bible school for the children of St. Mary's of the Moonlight. The church is near Monument Valley, Utah. St. Mary's and the land it sits upon is owned by the Episcopal Dioces, a rarity on the Reservation. This honor was given to the church due to the dedication and love of an Episcopal priest that built the church. This preist was one of the first belegana (white) pastors to lead the Navajo people to Christ in thier language.

It is a half-hour drive on an unmarked dirt road and sits at the base of a large mesa. On the church grounds, there is St. Mary's a house for people who visit during the summer and other times of the year and a trailor for the sexton. Most importantly there is a hogan.

The hogan is the symbol of life for the Navajo. There are two types of hogans, one female, one male. The female hogan is the traditional home, while the male hogan is used as a temporary shelter for the men while hunting.

The female hogan is round and made of a type of mud. Inside there are 9 cedar posts that support the structure symbolizing the 9 months of gestation. The door faces east to greet the rising sun. When walking into a hogan, you always walk in a clockwise direction as the sun shines. In the middle of the top of the hogan there is a hole and a fire is kept in the middle of the floor. The hogan is suprising cool, even when the temperature is well above 100.

The first year I was to go out on this mission trip, I cancelled at the last minute because my husband's sister had just given birth. Her son was in the PICU at Children's and the outlook at that time was grim. (It turned out that he survived and is doing quite well.)

The second year I was to go out, I had three children at home. My youngest was only 6 months old. My parents were very upset with me that I would go and leave my family for a week. When I tried to call my parents while out there because I heard that my mom had pnemonia, my dad would not return my calls. Phone reception is viturally impossible. We have to drive quite a distance in order for our cell phones to work. Obviously, I was crushed. Deep down I did not want to go either and the prospect of going into a desert with bugs and no air conditioning did not sound great to me.

The reason I went is because I believe in my heart that God gave me a direct order. Just a couple of months before this, I realized that to follow Jesus, I needed to let Him be the pilot. This is a very difficult thing to do when you are a control freak like me. (Yes, for all of you that have known me a long time, I admit it.) I also realize that when I give myself completely to the Will of God, I am not responsible for the outcome, good or bad. I prayed that dangerous prayer, "Let Your Will be done." I say it is dangerous, but in actuallity it is the safest place to be. To let go of the wheel and alow God to take you to places that He wants you to go means that He is driving and He promises to never put us to shame. He does warn us, however, that other people will not understand and some will be angry. This is a small price to pay for the immesurable blessings that flow when you do ultimately let go and let God.

Anyway, I was still a little miffed at God for "forcing" me to come to the desert. I was telling this to the resident priest, Fr. Ian, an Anglican priest from Great Britan. He asked me why I had decided to come out and I told him that it was all God's idea and I did not want to be out in the desert away from my family. He just smiled and said, "Oh, you are there are you?"

It was later in the trip that God began to rain down the blessings. I was still very upset about my family, but VBS had to go on. During VBS, we broke the children up into 3 activities: story, arts and crafts and games. I was the story teller and I used Godly Play stories.

Godly Play is a Montessori based christian education curriculum in which plain wooden figures are used to tell the story. The real difference in this method of teaching is that the story teller is not the teacher. Before the story begins, the story teller asks the Holy Spirit to take over. I pray something like this, "Let Your Will be done and let Your Words fill my mouth."

This day, the Holy Spirit did come and fill the hogan with His presence. I began telling the story after all the children were seated around the side of the hogan. I was seated on the ground facing the door. I began telling the story and using the figures. During this type of story telling, the story teller "memorizes" the story and is careful not to look at the children in the eye. Normal comprehension questions are avoided and in its place "wondering" questions are asked.

As I was saying, I began telling the story when I peeked up. When I did, I could not see the children. The sun coming in through the hole at the top of the hogan was so bright, that I could not see beyond the figures. It was a different bright. It did not hurt my eyes, but it did serve as a reminder not to look at the children.

When I finished the story and began the "wondering" questions, I was able to see. I began to also realize that the Holy Spirit was powerfully present in the hogan. I got goosebump as I looked at the children and they were fixated on the figures. They were also amazingly quite and attentive when they were not just minutes before in the church. I was overwhelmed at the thought that God was with us that morning. I went out to the desert and He showed me the way.

Upon returning home from home, I felt compeled again by God to do something. He pushed me into writing down my experience in the desert, long hand. Again, for those who know me, I am learning disabled and try to always type out anything I write so I can use spell check. He told me to write it and leave it on our church secretary's desk.

I did so and did not say anything about it because I was embarrased about my spelling. I was not home long when our home phone rang. It was the secretary and she had just read what I had written down. She said it was amazing. Just that Sunday before, one of the teens that had traveled out to the desert with me from her church stood before the congregation and said that she was in the presece of God in the hogan too. She knew she was because she said that I had disappeared during the story and reappeared during the wondering questions.

Eventually, the story was printed in Episcopal Today, a national buletin for the Episocpal Church in the USA.

God took my one, pitiful offering to lay down my will and turned it into a blessing that I will always treasure. The words of Fr. Ian still ring in my ears today. "Oh, are you still there?"

The next few years I could not wait to go out and see my friends in the desert. It is an amazing place that recharges the batteries and brings me closer on my walk with Him. This year, my husband went and I stayed home for many reasons. I was so thankful that he got a chance to go and experience St. Mary's and the wonderful people of Monument Valley. He too got to sleep outside on the deck of the house and look upon the Milky Way. He got to go into the hogan and also commented that it is an amazing feeling inside that cedar hut.

It is stil difficult for me to lay down my will, but when I get the courage to do so, it is always a a wonderful adventure. Fr. Ian, I think I am not still there, but it is a long walk.

To Remeber After My Surgery

I am writing this blog entry to remind me why I am going to have my surgery. I know that I will probably be in unbelievable pain after my cervical spine surgery and question why I did it. This is to remind me why. For those who are reading this, this also might explain why I am going through this surgery when there are no guarantees that it will work.

A typical day starts with a migraine head ache also extreme lethargy and arm pain. If I am able to take pain meds in the morning, the day is much better. However, most of the time I have to wait until the evening to take the medicine because I have to drive the kids to their doctor appointments and activities. My husband tries to help, but he is extremely busy with work and does travel frequently.

For days like this one, I was not able to treat my pain until 5 PM. By then, I was ready to chew off my arms because they ached so badly. I also had such a headache that I could not see clearly. The muscles around my throat were so tight, it made it difficult to swallow and I frequently choked on my own saliva.

Today the pain was not only in my neck, arms and head, but also in my lower back and hips. I am not sure why I am in so much pain today. It was probably because I had to lift Erica yesterday when I took her to get a cast on her ankle.

I am also feeling pretty useless at this point. I cannot remember simple things or big things that are important. The other day I could not figure out which arrow to hit to rewind a movie. I am forgetting names of people and have been forgetting whole conversations that I have with people. I repeat myself or I forget to tell others what is going on.

At night when I do try to go to sleep, I am awaken because I am choking. There are times when I sleep and when I am awake that I cannot swallow. Sometimes it is due to the bones in my neck that are pushing forward making it impossible to swallow. Then there are times that my brain just cannot remember how to swallow. It is a very strange feeling. I use a C pap machine, but it does not help all of the time.

I was hospitalized for this a couple of months ago because the doctors were concerned that the lesion in my brain stem might have something to do with the swallowing issue, but the lesion is the same size as it was before my C1-C2 fusion in January.

I cannot hold my arms out for any length of time without experiencing severe pain. I also cannot lift anything heavier than a half gallon of milk to pour a glass. It is difficult to load and unload the laundry. Folding is nearly impossible as are doing the dishes.

I feel like I am pretty useless right now and I wanted to remind myself about this feeling so I can remember why I had the surgery.

I spoke to the anaesthesiologist department at The Christ Hospital and explained my condition and surgery. I wanted them to know ahead of time so there was not a repeat of what my mom went through last year. The doctor at the other end of the phone was very understanding and appreciated the advanced warning. He told me that he was going to recommend that I go to ICU at least for the first night to help me recover.

Right now I am getting a little scared and starting to second guess this surgery. I know that this is needed and it will hopefully help me with much of my pain. I also know that this puts me at greater risk of more spinal surgeries.

I don't see how I have much of a choice. I cannot sleep, eat or do daily activities as it is right now. The surgery at least offers a little hope to the situation. I believe that this is the path that God has set me to travel on and I try not to question, but I am human.

I am also motivated by the fact that the doctors said that this surgery is "inedible" for Erica down the road. If she has the surgery before the age of 13, it will be another history making surgery. It is awful to realize that your baby knows the type of extreme pain you are going through and knowing that no one wants to do anything about it because is had not been done before.

When my daughter looks me in the eye and says that I can't do anything about her pain and that she can't wait to go to Heaven because then her pain will be over is almost more than I can bear.

I know that God's timing is perfect and His ways are not our ways. I also know He arrives right on time. So I have to trust that he will not leave my baby in pain any longer than she has to be.

As her earthly mother, it is difficult to watch your children suffer pain and have no way to get them out of it. I know their Heavenly Father sees their pain, but allows it for a purpose that is hidden from us right now. I also believe that this purpose will be reviled to us when we reach our final destination.

This is all scary as I am not sure why God allows all of this to happen to our family, but I do know that we have been richly blessed in so many ways. We have a great family and wonderful circle of friends as well as the peace in our hearts that God knew what he was doing when he gave this suffering to endure. if this brings us closer to Him and His ways, I cannot count it for bad.

I also know that He will eventually pull us out of this storm so we will be able to sing of His glory and redeeming grace for ever.

Friday, July 24, 2009

Last Year at This Time

I was with my mom this morning making cookies for the Farmer's Market in Hamilton. It is difficult to believe that Mom is able to do all she does given how bad she was last year. She was in ICU at Christ Hospital struggling on a ventilator. In the 18 days that she was in ICU they sucked out two large containers of black gunk out of her lungs. She fought so hard and each time the doctors took her off the vent, she would beg them and me not to be put back on. This happened 4 times. It was gut-wrenching to hear your mother struggling that much and pleading. Her hands were tied down so she would not try to pull out the tubes.

I tried to tell the intensivist that she has EDS and probably sleep apnea, but they would not listen. They would pull her off the vent and expect her to breath on her own, lying flat on her back. It took a call from our geneticist to convince them that she might need additional help.

Many people with EDS also have sleep apnea because the soft tissue in the back of the throat is softer than usual. Therefore, the airway collapses when we lay on our back.

God's timing is perfect, and she did get off the vent and out of the hospital. She still cannot recall many things that went on during her month long stay. I think it is her body's way of defending itself.

The worst thing I had to do was to remind her that both her son and husband were dead. I had to do this over and over because her memory was struggling. To see the look of anguish each time I told her was enough for a life time.

She always apologies for what happened last year. I don't consider it a burden as she emerged from this time a much healthier person, both physically and spiritually. Our relationship has grown enormously in this last year and I would do it over again and again if it meant we could build our relationship like we have.

A few weeks ago she stood before the bishop and re-committed herself to the Church. She did not want to stand before the bishop because she, "did not want to take away from the newly confirmed." I explained to her that many people in the church had prayed for her for many years and this public display was affirmation of their faith and prayers. It was one of the most wonderful days of my life to see her up there.

Now we can talk openly about our faith. She is drawing closer and closer to God and I am able to see the source of the wonderful qualities my mom has always had. She never doubted or turned away from God. She is just discovering how close she can come to Him now she has accepted Him as her personal savior.

Many of you that are reading this, prayed very hard for me and my mother during this time. A thank you would not suffice in expressing my gratitude for your petitions. In my mom, God made a new creation and a great source of strength for me and my family. I cannot imagine what this year would have been like had I lost her.

Looking Up

There are signs that things are looking up. Sometimes it is hard to look up when you are deep in the canyon it seems like prayers just echo and don't go anywhere. But I truly believe that all of the prayers are listen to by a loving God. Besides my daily devotionals I also read a wonderful book called God Calling. Here is one of the passages, "Rejoice indeed that you see My Hand in all the happenings and the keepings of the day. Protected, the Israelites crossed the Red Sea; so are you protected in all things."

"Rely on this and go forward. You have now entered upon the stage of success. You must not doubt this. You must see this. Beyond all doubt you must know it. It is true. It is sure."

"There is no age in Eternal Life. Have no pity for yourself, nothing but joy and gratitude."

"These last few weeks have been the submerging before the consciousness of rescue. Go forward now and conquer. Go forward unafraid."

I am also re-reading Hines Feet in High Places another wonderful book. I think it is these difficult times that we able to see God's Hand moving in our lives. Sometimes I feel like I am blinded by the traumatic events that seem to blow up in our faces to see Him. But like a strong spot light, He is able to come rushing back into sight and I able able to hold on with praises.

I think that praise is the only way out of a valley. You can't look behind or ahead, just up. With praises you are able to crumble the sides of the valley and step out into the light. I know that I know that we are blessed beyond measure and I would be lying if I said that I don't have my really bad days. But when I look at things the way I think God wants me to see them, I realize that He is rescuing us all the time.

Please pray for me that I can keep this attitude of praise. I need all the help I can get!

Wednesday, July 22, 2009

The Toughest Little Girl in the World

Yesterday, after I brought my daughter home from physical therapy, I sat down, weary from the trip. These days the pain is constant. I do not drive when I take my pain medicine, so the pain had caught up with me. My little daughter decided that she was going to give me a massage. She ran upstairs to get her lotion. Soon after I heard a bump then a scream.

I find my daughter grabbing her ankle and saying, "It's broken! Take me to the hospital!" Not wanting to add to the drama, I got ice and gave her pain medication. I got her into my bed and she rested with me for about 45 minutes. Thinking that the pain meds had taken effect, I asked her to move her ankle. She would not. I asked her to stand on the injured foot. Again, she would not.

I then realized that I needed to make some phone calls. I started with my husband. Because my pain level was high and I still had not taken anything, my head was not clear. He suggested that I call our geneticist and ask his opinion on what to do.

The reason for the confusion is that the orthopedic surgeon that follows the kids at Children's was very rude and upset us all the last time we visited him.

Anyway, while I was still talking with the geneticist, my injured daughter bangs on the door and asked to go outside and ride her bike! I had just tried to get her to stand and now she was running outside!

I was mortified as the geneticist could hear all of this. I apologized and he just laughed. By the time I could get my daughter outside, she was already on her bike.

Angry and upset, I scolded her for "lying" to me. I made her stay in her room until my husband came home. He also yelled at her for claiming to be hurt one minute and and then running outside the next.

Later that evening, I looked at her ankle and it had swelled up like a balloon. I asked my husband to look at it and he agreed. We had to apologize to her. We also emailed the geneticist and told him it had swelled.

I called this morning to get an appointment with our regular pediatrician's office. The first available was late in the afternoon. Meanwhile, she was running through the house, dancing and carrying on like nothing was wrong. She would complain now and then, but not much. I had to force her to rest and put ice on her ankle.

When we finally got to the doctor's office, the doctor was sure it was either broken or a tendon was torn. Of course it was! We had just yelled at her for "lying" to us! You would think that after everything that she has been through, that we would believe her when she says it hurts!

The doctor sent us for an x-ray and of course it came back as a fracture. I called up the geneticist and told him and he couldn't believe it either. I asked him which doctor I should follow up with and he really didn't know. He said that almost all of the doctors at Children's do not understand the seriousness of Ehlers-Danlos.

I am not sure who we will see in the fracture clinic on Saturday, but I am sure it will be another adventure. I just hope that this adventure does not involve surgery as I am due to have surgery on August 5th.

Thursday, July 16, 2009

Things not to do at 1:00 in the morning

I think there are quite a few things that should not be done in the middle of the night in an effort to save money. Coloring your hair needs to be at the top of this list. I had been coloring my hair for quite a few years, but always professionally. As our finacial situation has changed I decided that I would attempt this on my own. In hind sight, this activity is not a great one to attempt if you cannot put your hands above your head!

Just as I attempted to save money by having our kids wash the dog, my experient in coloring my hair will require extra money and professional help. Do they sell insurnace for this type of thing?

Wednesday, July 8, 2009

Can't Lose the Hope

This is going to be a shorter post as I am not really able to see the screen. The pain and migraine are a little too much today, but I feel I need to write down the transformation that I went through in the last couple of days. I sent a simple email to a couple of friends and asked them to pray for me and our family and the benefit of that simple request is immeasurable.

First I will explain what got me to a place where I began to slip down the slope of hopelessness. It was the doctor's appointment visit for my older daughter. She had to be taken in an ambulance on Sunday due to a hip injury. We went to the orthopedic surgeon to see what we could do to get her out of pain, how to keep her from injuring her hip again and get an explanation of the idiopathic chrondolysis.

The doctor was not rude this time, though he has been before. He simple explained that there was nothing we could really do about getting her out of pain or keeping her out of pain. He thought the diagnosis of the chrondolysis was incorrect at this time. So we basically gained nothing other than his opinion that she might not have chrondolysis. By the way, there is no treatment for the chrondolysis.

This just hit me wrong. What are we doing? We have spent tens of thousands of dollars on medical care in the last 18 months as well as countless hours at doctor appointments and doing PT at home and other than attaching our heads to our bodies, we are no better.

Of course this is not entirely true, but once I slipped, I crashed hard at the bottom. I had been fighting so hard thinking that with a little more effort, my kids and I would feel better. If I used logic and reasoning with doctors, they would have a wonderful medication or treatment that would help us all.

I was expecting the miracle in my head, not in God's will. I had to give up the expectation that doctors could cure us. There is not cure for EDS, just management of the symptoms. My youngest daughter asked if I could get rid of the EDS. Kids have a way of cutting through all of the junk and poking at the real heart of the matter.

The heart of the matter is that it has been God's will all along for us to go through this. We were chosen to suffer (or prepare) in this way and we need to rejoice. I did not feel like rejoicing yesterday, but the more I think about it, the more joy I have because we have been chosen by God to go through this for the glory of His kingdom. What better purpose is there here on Earth.

I know in my heart that God does have a purpose in all He does and allows. Satan wants us to simply suffer. God wants us to rejoice in the preparation. I wrote in my journal the day after my mom got out of ICU last year the following, "The thing that evil is most fearful of is laughter in the face of hardship. Joy in the suffering."

I do not rejoice that my daughters and I have pain, but I do rejoice that God thought enough of us and believes in our ability to call on Him and trust in Him to carry us through.

Monday, July 6, 2009

Can We Go a Week Without an Ambulance Ride?

Still reeling from the events earlier in the week, we tried to rest on Sunday. Last Sunday, I spent most of it in a trauma room with my youngest daughter after she was hurt by a 10 year old boy.

I was enjoying a nap, when I heard commotion down stairs. "My husband can handle it." I told myself and attempted to roll back over and fall asleep again, but that is not how it goes in our house, so I dragged myself downstairs. What I see is my oldest daughter being carried into our living room. She is crying and everyone is upset. She is not moving her leg and I begin to try to figure out what is going on very quickly.

The story was, she was up at the park with a friend of mine. She was attempting to give our family a little relief by taking our kids to the park. Apparently, my oldest daughter was swinging on a swing and she heard and felt a pop. After that, she could not move her leg. It did not hurt much at first, but by the time they got her home, she was in anguish. We gave her some pain meds and I called our family doctor. This call can be tricky, as many of the doctors in this practice are squeamish about giving advice about handling the dislocations at home. Because we could not even get her to sit up, we could not get her in the car. How they got her home from the park, I will never know. The doctor wanted us to bring her to Children's hospital right away. The pain meds were not working and she could not work her hip back in herself, but we could not get her in the car. Our only option was another ambulance.

I felt sick. Not again! This has to be a bad dream! Off we go back down to Children's. After 7 hours, a lot of pain meds and x-rays the doctors came in with their findings. The radiologist thinks she has Idiopathic Chondrolysis. All of the doctors don't even know what it is. Finally they wake up an orthopedic doc and he said to send her home.

So we have a diagnosis that we know nothing about and we still cannot get her in the car because she will not bend at the hips. The ER doctors insist that the ortho come down and talk to us. The way he described it was that the cells that line her hip socket are breaking off and therefore the hip joint is not smooth. This causes pain in the joint, but they could not do anything but give her pain meds. It was better that she goes home to rest. I looked the doctor in the eye and asked, "Tell me how we are going to get her in and out of the car. Right now I am concerned with the next 5 minutes. Mobility is an issue and you have yet to address it." Honestly, I don't think that these doctors really think!

They gave her more pain meds and finally she started to move the hip joint. We got her in the car and home, finally. I tried to look this Idiopathic Chondrolysis up and there is not much information out there. I don't know for a fact that this condition is related to the EDS (Ehlers-Danlos Syndrome) but it is not a far jump to make. By the way, there is no treatment option for this condition, at least what I have found. Surgery, therapy drugs are all unsuccessful ways they have found to treat this condition.

Seriously, I cannot make this stuff up, even if I tried! Two years ago we were a "normal" family! What happened and when am I going to wake up?

2 Surgeries and 2 Funerals

Now that my husband is home from his mission trip, I thought that things would calm down a bit. How wrong can I be? I should have known, by the way everything has progressed that the storm was not over.

The day after Erica went to the hospital after the 10 year old boy beat her up, we had to head back down to the ER because she was complaining of vision problems. Everything was okay, she will probably need glasses at some point, but this is not big. This is a normal problem, and normal is good.

The next day I had scheduled too many appointments in order to have my husband attend some of these meetings. The family left for the visits at 7:00AM and did not return home until 9:30PM. The first appointment was with our geneticists. It lasted for 2 1/2 hours. The majority of the conversation was about what to do with my 6 year old and her pain. She has two separate issues in her spine that need attention in the short term. The first problem is that her cervical spine is no longer curved as it should be. The big problem with her whole body is that it is too hypermobile. The same is true for her spine. Her neck vertebrae are not holding up her neck like it should and it is collapsing. This causes pain, neuropathy and muscle spasms. As an adult that has the same problem, I can tell you it is unbelievable pain. The thought that my daughter suffers the same as I do is almost more than I can bear.

So what are we going to do with her and for me? Right now I am unable to do much. I cannot wash a dish, clean, or type (I am on a lot of drugs right now). The only option that I see right now is surgery. It is very difficult to pull myself out of the equation for my daughter. The doctor said that there are little options for my daughter other than surgery. If she had the surgery in the even the next 6 years, she would be the youngest person to have the surgery with the cause being Ehlers-Danlos Syndrome. This is all hinged on if the surgery would even give her relief. Physical therapy is not an option because the neck muscles are not designed to hold up a head, only move it. Once the neck starts to collapse, there is nothing that can reverse it, save surgery. If we wait too long to have the surgery for her, the nerve damage might be permanent.

She also has another spine issue in the lower back. This is causing her to have extreme leg pain as well as problems controlling her bladder and bowels. With this area of the spine there is more hope. She could wear a brace, work on core exercises and other treatments before even considering surgery. The problem is that she is in so much pain from the neck, that she will not do the physical therapy for the rest of her body. She continues to have hip and shoulder dislocations, finger, elbow and toe dislocations as well. If we cannot get her to do the exercises, she will continue to lose muscle tone and we are stuck in a terrible cycle.

No decision has been made for Erica, but I am scheduled for surgery on Aug 5. I am hoping to give Erica some hope by having it done first. It is a horrible thing to have your little daughter cry in pain and look to you for relief and you can offer nothing.

At the same time as all of this is happening, we have a death in the family. My youngest daughter's mouse, Bubbles, pasted away. The next day, our cat Oreo also died. The mouse was sudden. We did not notice any abnormal behavior with her. The cat on the other hand, had been suffering for some time. She had feline leukemia. We got her from the pound 4 years ago with one of her sisters. After her sister died, our vet told us that both cats had this form of AIDS. They suggested that we have Oreo put down at that time. We thought it cruel to do that without giving her a chance. She had 4 real struggles with viruses and each time she recovered with the help of forced feeding and drinking. This time was different and she could not recover.

My oldest daughter asked me why she had to die right now, with everything going so badly. I asked her why it didn't happen when we first got her; or when her grandpa died; or when her sisiter had her surgery; or when I had my surgery; or when she broke her leg. "I don't know why all of these things are happening in the way they are and I will probably never know. I do know that we are not being punished or tortured by God. We are being carefully molded and taught. For what purpose, I do not know. What I do know is that God will give us everything that we need to get through this time together as a family." Satan wants to destroy us, to make us pull away from God, but the harder evil tries to squash us, the stronger God makes us.

Without God's blessing hand in all of these events, we would have given up long ago. I know that I am not that strong, but I do know God is.

Wednesday, July 1, 2009

Read This One First

Four days after Dad, a Vietnam and Gulf Wars veteran, passed from Idiopathic Pulmonary Fibrosis, we found out why our princess, Erica, complained about pain. She had previously been diagnosed with “nurse maid elbow.” At the end of the 5 year well check I mentioned that Erica “pops” out her elbow several times a day. She also “pops” out other joints as well. The doctor and the med student ran and got a text book and proceeded to explain to me that she has a rare genetic syndrome called Ehlers-Danlos. Because it is a dominate trait, other people in the family probably have it. After two hours, I finally said I could not take in any more information and left with my head ready to explode. I had not even buried my dad yet and now I have to figure out what this diagnosis means for my 5 year old baby girl and the rest of my family. The doctor scheduled an appointment with a geneticist , Dr. Tinkle, at Cincinnati Children’s Medical Hospital, but we could not get in until May. In the mean time, the pediatrician sent her to receive physical therapy to strengthen the muscles around the joints to help with stability.

What we had found out in the mean time is that Ehlers-Danlos Syndrome (EDS) is a genetic disorder that keeps the cells in the body from making enough collegian. There is not a single place in the body that makes collegian and the body needs it to strengthen tendons, cartilage, bone and other connective tissues such as veins and arteries. There are different types of EDS and our family was diagnoses with Hypermobility type. More information can be found at the National Ehlers-Danlos website at

God’s timing is perfect, however, and in April of ‘08, when Erica went to reach for a pencil on the floor, she screamed that she “popped out her neck,” I didn’t think anything of it and gently messaged it back in. I know it sounds ridiculous, but we do this type of thing every day. She had been saying that she had “jumping jelly beans in her fingers and her toes for a while, but I didn’t really understand what it meant and thought I would talk to Dr. Tinkle when I saw him. When we went to the physical therapist the next day, I happened to mention it to her at the end of the session. The therapist nearly had a stroke. She called a doctor which we saw right away. This whole time I thought the therapist was a little crazy. When the doctor said that Erica could either be paralyzed from the neck down and be on a ventilator for the rest of her life or die instantly, I still couldn’t believe it. I called a cousin of mine who is a doctor and asked “Is it this serious or do I need to have a 2X4 upside of my head” to which he quickly said “I will get the board.”

So just when I was getting worried, we were referred to the best surgeons, Dr. Durrani, in the world (no kidding) for this type of problem. Usually it takes a year to get an appointment and we got one in 3 days. It usually takes 6 months to get a surgery time and again it took 3 days! God does like that 3 day thing.

God held her neck together until the doctors could do it with screws. Erica’s tendon, the only tendon that is not suppose to move is at cervical disk 1 and it is joined with disk 2 with this tendon holding the base of the brain to the spinal cord. Any movement of this tendon can cause damage to the spinal cord. When and injury occurs at this high of a level, everything from that level down is affected. When the neurosurgeon that did not want to do the surgery got out of the operating room, he said that it was amazing that she is alive. He argued that this surgery was very risky and he did not see the “evidence” on any of the scans or x-rays. Dr. Durrani was basing his decision on her symptoms (neuropathy, loss of bowel/bladder control, frequent fall, muscle weakness, ect.) Thank God Erica could explain her symptoms in her own way. By the way, the “jumping jellybeans was neuropathy. When the neurosurgeon came out of the surgery, he was as white as a sheet. She said that there was nothing holding her head to her spine and he did not understand why she was alive. He is changing policy at Cincinnati Children’s Hospital because of Erica. By the way, guess where the biggest clinic is for this very rare clinic? You guessed it, right in our neighborhood. Another blessing.

Erica asked why she had to have EDS the other day. I could not tell her why other to say that there is evil in the world. It is only evil that would give a little girl a disease that gives her pain every day, make her have braces on her legs, hands, fingers and require a wheelchair. But God is good and if she has to suffer with this, he has given her the best doctors, the best hospital, the best personality and the best supportive family and friends. She is going to make handicapped something to be envied. She promised not to make fun of her friends for not having a neck brace or wheelchair. God’s grace is sufficient.

Erica now is doing better and we have to remind her not to do somersaults in the living room. She will continue to have an uphill battle, but she is a real fighter. I know that I am bragging, but I know that she will change the world one day, if she hasn’t already. On the one year anniversary of her surgery she learned to ride a 2 wheel bike in her t-ball uniform. There is no better way to say it.

Elizabeth is our oldest child and she is 11. She has also been diagnosed with EDS. Her level of hyper-mobility is less than Erica’s; however, she has problems with her digestive track. She still loves school and church and is known at school as a math wizard. She would like to be a doctor and can already put joints back into place better than most doctors and nurses. Elizabeth is growing into such a beautiful, delightful young lady that it is hard not to brag about her.

CJ was not diagnosed with EDS and he can not pass it on. Life with strong females with major medical problems is not all that it is cracked up to be. This young man has the biggest heart and I am happy to report he is just like his Dad, praise be to God! He struggles with where his place is in the family and we try to give him extra attention.

My mom was diagnosed with EDS which explains the life-long joint pain. After my dad died, she and my family got her house ready to sell. In the process, she hurt her lower back so severely that she needed surgery. She went to the same surgeon that worked on Erica; however, she did not fare as well. We thought she would be in the hospital a couple of days. It turned out that she was in ICU for 18 days and left the hospital after a month. The problem was that she lost the drive to breath. In ICU she was pulled off and on the respirator several times. Finally I called Dr. Tinkle and he explained that when the doctors put the breathing tube in her throat, they stretched the brainstem, therefore, the loss of breathing drive. I am very happy to report that she is fine now and I think that she is better than she has been in years. Again, something that looks like a curse turns out to be a blessing. Mom and have formed a stronger bond that has been another blessing during this trying.

On January 7th I had the same C1-C2 posterior fusion. I did it not so much to get out of pain, but as an insurance policy. The doctors found that I was damaging at least my spinal cord when they did the flexion/extension MRI. They also found a lesion on my brain stem. Dr. Tinkle and Durrani also think this was due to the instability. Before the surgery I was having a lot of trouble with pain, as well as stability and numbness in all areas of my body. I was also passing out, even when seated.

Dr. Tinkle and Dr. Durrani both think that this surgery will reduce the number of my migraines. I still have another surgery to go because I have a disk out at C6. My neurologist, Dr. Guo, thinks that I might have some vascular problems. My blood pressure is still really high, which is the opposite of most people with HEDS. I am on blood pressure meds to control it as well as migraine meds for daily migraines as well as prevention meds to help with the migraines. To be honest, I am just glad to be alive. When I asked Dr. Durrani how bad the instability was, he said that it was not quite as bad as Erica's, but I was still lucky to be alive.

I just found out recently that I will need to have another fusion surgery for the rest of my cervical spine. This surgery is more invasive and does not guarantee that I will not need additional work done to further stabilize my spine and other joints. The one disk that was bad before my surgery has progressed to all of the disks giving way. My neck now curves in the wrong direction. This leads to severe pain, a choking sensation and very limited movement.

Unfortunately, I have had to resign from my position with the church because of all that is going on with our family, but I hope to keep volunteering as much as possible. Trinity started a free after school tutoring center for inner city children at the church called Wonderful Wednesdays. God has blessed the program so much with free transportation, wonderful volunteers, grants, food and other blessings. I have a master’s degree in education with emphasis in special education with much classroom experience, but I feel that the job I am doing at the church, running the Christian Education and the Wonderful Wednesday programs at Trinity are the most important jobs I have ever had outside of my home.

For something that we knew nothing about a year and a half ago, EDS has certainly put our family on its ear. I do believe that we will come out of this year stronger, wiser, healthier and more reliant on God and our friends. None of these things are bad. Sometimes God has to takes us to the depths so that we can reach out to Him in faith. It is a lie that God only give us only as much as we can handle. I believe He often gives us more that we can handle so that we will reach for Him and learn to trust in Him in all things. If we truly had a bad couple of years, my daughter would have died, my mom would have been gone, and I would have died long ago. This was not God’s plan. Sometimes we have to go through the “bad” stuff to see His hands at work. Our family certainly does not take one day for granted. Each laugh, smile and experience is treasured like it should have been treasured all through our lives. We are not guaranteed tomorrow, but we are promised that God will be there with us.

Dr. Tinkle informed us that Erica will be featured in an upcoming medical journal article about instability of C1 and C2. She was the youngest one to ever have this surgery. I wept when I heard that maybe another doctor will see the need to screen for EDS and potentially save a child’s life. My mom will also be in a medical article looking at the dangers of cervical spine instability and how people with EDS should be anesthetized. My joy is like that of a new mom, giving birth, without the labor pains.

I am telling this story to you for a couple of reasons. First, May is Ehlers-Danlos Awareness Month. Its frequency is about 1 in 10,000. It is rare, but not that rare. There are several types of EDS. Some of the types have been found on the gene, but the most common, Hyper-mobility type has not. There is some research, but not much. Dr. Tinkle, the geneticist, is a really great doctor and tries to educate other doctors about the syndrome and how it affects the whole body. But, I have met up with some doctors that are just not interested in learning about it because it is so rare. I even had one neurologist tell me after I suggested that he contact Dr. Tinkle about EDS tell me that he didn’t want his office over run with “you freaks” and did not want to play a part in any “strange research” that the geneticist dreams up. Needless to say that was my last visit with him.

My children’s regular pediatrician is wonderful. He told me a quote that has stuck with me ever since. “You know what is the hardest surface in the world? The forehead of a specialist.” I have found this to be true in a lot of cases. Word needs to get out to these doctors that are writing people off with chronic pain as stress induced, fibromyalgia, chronic fatigue and just plain hypochondriacs. The Beighton Scale only takes a couple of minutes. To be honest, I had stopped talking to doctors because I was sick of hearing that it was all related to stress. I was stressed, because I was in pain!

A Squirrel Walks into a Bar

So, we see the Schulze family enjoying a family dinner. It is he eve of Elizabeth’s 11th birthday, Feburary 18th, and she is in a full leg cast from her knee injury; Erica, who had to go to an emergency doctor visit just 2 days ago because she injured her neck; CJ, who was sent home from school with a low grade fever and a stomach ache; me on heavy pain medicine again because I went to pick up Elizabeth from school and the nurse did not have time to help me put the wheelchair in the car; and poor Chuck, just shaking his head.

CJ starts to cough during dinner. He blamed a green bean, but I had to give him his inhaler because he could not stop coughing. Before dinner is over, I got a call from a neighbor from my mom’s old neighborhood. She said that some kind of animal had gotten into Mom’s old house that was due to close in 2 weeks. Apparently a squirrel got in through the chimney and tried to gnaw its way out through the wood window frames. By the time Chuck had gotten to the house I called an animal removal service. The man on the phone was the world’s slowest speaker and I could hear CJ still coughing.

By the time I got to CJ he was complaining that he could not take a deep breath. Not believing this was a true emergency I tried to calm him down. I was thinking that possibly with all that goes on in our house that he might have some anxiety and this was making it difficult for him to breath. I must explain that CJ does have asthma, but he rarely uses his inhaler and when he does it is because of exercise or when he gets really upset.

I tried to get everyone to bed so that I could further assist my mom with the squirrel adventure. Elizabeth has had a hard time sleeping lately and did not like it that I did not have a lot of time to spend with her. I went into CJ’s room and he was still complaining about the difficulty breathing and I said, “Why don’t you try to go to sleep and I will check you later.” Again, I am still convinced there was nothing wrong. He reluctantly agreed and we began our ritual of praying before I leave the room. No sooner did the pray leave my lips, “Please God help CJ breath better” did he turn white and I knew he was telling the truth. I went downstairs because my sister-in-law let us have a nebulizer. I thought I would give him a treatment and things would get better. I got the machine, but I did not have any medicine! It was then I realized that we were going to the ER.

With Chuck gone to my mom’s house, I had to find a neighbor so I could take CJ in right away. Then I am thinking, which neighbor is not going to think our family is not completely nuts! I think we have gone to the ER at least once a month for the last year. I kept thinking, “This is really not happening right now” when I got a hold of Charlie across the street. Charlie and Elleta were there when Elizabeth dislocated her knee and were there for several of Erica’s dislocations. Many other neighbors, friends and family members have gone with me to the ER or watched the other kids to which I am eternally grateful. If it was not for all of their kindness, I do not know how we would survive!

Poor Charlie came into a chaotic scene. I was dashing around the house and talking to myself. I did not have a chance to explain much, I just left. He has no idea where Chuck was, how long or what to do, but he was very supportive and said he would do anything I needed.

When I got in the car, I called the pediatrician office, thinking that they might have some advice to help me avoid going to the ER. While driving I was still trying to calm CJ down in the car, still holding out hope that I would not have to go the ER. I was trying to talk to CJ and listening to how he talked to make sure he was alright. I could not turn my head due to my surgery so I needed him to talk. When he wouldn’t respond I knew it was bad so I started to drive faster. The doctor’s office called and I told him he could not speak, they told me to get him there ASAP. I was on highway 129 driving 100mph after that. I lived in Germany for a few years and never drove that fast.

I park right in front of the ER and rush him in. The nurse takes him back right away. He sits down, we look at him and he is a healthy pink color and his oxygen level is 100%. This is the same kid that could not talk! Now I am really upset because I am thinking that he just wanted some attention or did have a panic attack like I originally thought. The nurse is looking at me like I am crazy. Then she said, “Didn’t I just see you with your daughter? How is she doing?” I thought she was talking about Erica because she is usually the one we have to bring in to the ER. So I told her that her hips do have damage and the doctors are unsure what to do for her. She has to go through a MRI and an EMG soon. She looks confused. “No, the one with the dislocated knee and broken leg.” So now I am looking very suspicious to the nurse. I explain that Elizabeth still is in pain and is in a full leg cast. She is still not able to feel her leg from the knee down. Of course she remembers me because I was the mom that was pulling on my daughter’s broken leg.

With this we return to the saga at my mom’s house. Chuck and Rob, a neighbor that has been staying at Mom’s house because he is going through a divorce, have encircled the rabid squirrel. I guess Rob has a phobia of squirrels and is running around the room. They are trying to scare the “very large squirrel with big teeth” out a window. The animal removal guy is on his way, but Chuck needs to stay because he needs to pay this guy.

It is about this time that my mom calls my house. I did not tell her that I was leaving to take CJ to the hospital. She panics when she dials the number and I don’t answer. Charlie explains that I am in the ER with CJ. Charlie knows nothing about the “squirrel situation”. My mom then calls Chuck asking what is going on. Of course he is running with a squirrel trying to figure out how to help me as well. He was just not sure what to do.

We turn back to the ER. The nurse is now suspicious and thinks like I did that he is having a panic attack. His lungs sound good, his color is good and he is back to talking. They send in a male nurse to talk to CJ to see if he will calm down so that we can go home. The whole time CJ sticks with his story that it hurts to breath and he can’t take a deep breath. I am mouthing to the nurse, “Sorry” and spelling out “a-n-x-i-e-t-y”. Now some of you know me well enough to know that I am a horrible speller, so who knows what I really spelled. We have been there over an hour and I just want to take my son home. I begin to tell him that he is just as important to us as his sisters and he does not need to be “sick” to get attention. He looks at me strange and says, “I know, but I still can’t breath!”

By this time I have to move my car from the front of the hospital so I have a chance to call Chuck. I tell him not to worry, CJ is fine, I think he is having a panic attack. Chuck is then able to go home to relieve Charlie and it looks like the night is just about over.

I return to the room and the doctor comes in and says that she read the reports of the nurses (she knows that we think this is related to anxiety) and talks to us about what brings us in. I told her that CJ was sent home with a low grade fever and a stomach ache. She says that kids that present like this could have one of three things, pneumonia, strep or a virus that triggered an asthma attack. She wants to do an x-ray and take a swab. She listens to the lungs and says that they sound clear but she still wants an x-ray. They give him a couple of breathing treatments. When he is finished he is so excited that he can finally breathe. I am thinking it is the placebo affect going on here, but I am still trying to reassure CJ.

I was hoping to avoid all of that because this means we are there longer, but I am confident that he is going to be fine. We then have to wait for another hour or two to get the results. The doctor comes back in and says, “He has pneumonia.” So know I have to apologize to CJ for doubting him. He just pats my arm and says, “That’s okay Mom.” In the last month I have pulled on my daughter’s broken leg and doubted my son while he is having trouble breathing. He was panicked because he could not breathe!

I felt so bad for CJ. I called Chuck and told him. He said that my mom wanted to hear about CJ as soon as possible. So I call her from the ER and said, “So this squirrel walks into a bar…” She laughs, then I tell her that CJ has pneumonia and we just started to laugh.

This is the crazy thing about all that has happened in the last year, we laugh. We know that it is hard to believe that we have gone through all of this in the last year, but if you really look at it, we have been blessed right through it. God did answer our prayer; He just did it in a way that I did not understand. You know the old joke about the guy that was trapped in a flooded house. He prays to God to save him. Right after the prayer, a fireman comes to rescue him. He said, “I can’t go with you, I am waiting for God to save me.” So the fireman left. The flood get higher and he has to go to the top level of the house. “God save me!” Right after that a man in a row boat tries to rescue him. He refuses again saying that God will save him. Finally he has to go to the roof of the house, “God save me!” A helicopter comes by and tries to rescue him. Again, he refuses saying, “God will save me.” The man finally drowns and goes before God. He asks God why He did not save him. God responds, “What do you mean? I sent a fireman, a boat and a helicopter!”

My friend Katrina set me the following quote, “This is a little bit from my bible study that I want to share with you...

"God is the God of RIGHT NOW. He calls us not to be regretful over yesterday or worried about tomorrow. He wants us to focus on what He is saying to us and putting in front of us RIGHT NOW. The Enemy's voice will focus on the past and the future while the voice of God will focus on today. He is the God of RIGHT NOW."

I just felt that I should share this with you; He is with you EVERY step of the way!!! No worries...He is with you!

I also read in a devotional book that we should not come to Him begging, but like a son that hands a tangled string to his mom and runs out to play. He does not worry about the string because he knows that his mom will untangle it. He does not beg her. He simply goes out to play. I also heard a quote from the Bible on the radio that no one that puts their trust in God will be shamed.

God wanted me to share this story not to show how strong our family is or just to make your laugh, although, I do hope that you were able to laugh. He wanted you to see that our family is very weak, tired and needy right now but because of God’s blessings we are made strong. We thank all of you that have supported us through prayer and meals and other ways. I know that we are being carried by Him and it is a great feeling.

As a side note, I started this email yesterday. I took Elizabeth to the doctor yesterday and she does NOT have the same instability of her neck like Erica and me. She will never need that surgery! Praise God!

How does a girl with EDS cross the street?

Here is a snapshot on what life looked like on January 31, 2009. Wednesday the kids were playing in the snow all day. I came out briefly to call them in. Elizabeth started to walk across the street. Other neighbors were out and I was talking to my friend, who also is an OT. We turned back to Elizabeth and saw that she was scooting on her butt across the street. When I asked what she was doing, she said that she dislocated her knee. She said later that she didn't want to cry because there were a lot of little kids by her and she didn't want to scare them.

The neighbors helped her in the house. We had to remove all 4 layers to see her knee. When we looked at it, we could tell that she was right. It was definitely out of place. My friend the OT had never realigned someone so I had to tell her and her husband what to do. I was in charge of bending her knee at the end. Mind you I am less than 3 weeks post op from my C1-C2 fusion and without pain meds because of the storm and my husband was in Detroit .

We thought we were successful and moved her to a reclining chair. Elizabeth said that she could not feel her leg from the middle of her knee down. She said that above her knee hurt really badly. I called our primary doctor, because I knew if I called Children's they would make me bring her in and I could not drive. I was also in so much pain that I could not think clearly.

The doctor said to give her some of Erica's roxycodone and wait for a while. His thought was that the knee was not in place. He said to get two big guys to help. We did this and she really screamed. We tried a couple of times. One of the guys that came over is an x-ray tech and he thought that we were unsuccessful.

I got a neighbor to drive us to Liberty Children's. When the x-ray came back, they said that the knee was in place, however, the end of the tibia was fractured.

Now I feel terrible. I don't feel bad for the original pull; because I knew it was out, but the other ones make me cringe!

It took a lot of morphine to get her pain under control. I told them that she had just dislocated her shoulder so that crutches were out of the question.

Of course Chuck is out of town. We got back to the house at 11:30. Elizabeth had a hard time getting to sleep. We slept in the red chairs in the great room. Of course, through all of this I did not have my pain pills due to the fact that the nurse did not call me back and because of the snow storm. I was in so much pain that my eyes were crossing. We did not get much sleep because she vomited for most of the night, I guess because of the morphine.

The next day I had to get someone to take me and Erica down to the main Children’s Hospital because of her abdominal pain. She was getting so bad that she would just scream and roll on the floor in pain. She could not go, so I had to leave Elizabeth with a neighbor and take Erica down to the hospital for the visit. The ER the night before said that they faxed a copy of the order for the wheelchair and we could pick it up while we were down there. The problem was the roads were so bad that I needed someone with 4 wheel drive to take us. By this time I was in so much pain and had not slept that my brain just fried. The only thing that I could do was to call the church and see if anyone could take us to the hospital. Fr. Daggett answered the phone and said that he had a 4 wheel drive car and he would take us. I just broke down and cried. Then I called my ortho doctor to tell him that the nurse had not called in the medicine after 4 days. The office manager happened to answer the phone. I was beyond pissed and she got an ear full. She put the nurse on the phone and she proceeded to give me excuses. I said I do not want to hear excuses, I want results. She said that she could call in all of the meds, except one, which needed to be picked up because it is a narcotic.

Anyway, he took us down an icy highway. I called before Erica’s appointment to see about the wheelchair. Of course no one got the order and the lady on the phone said that she did not know if she could help me. At that point I thought I was going to lose it. I explained a little of our situation and she said, that she would do all in her power to make it happen. She said that I don’t care what I need to do to get this chair for you, by the time you leave you will have one. I thanked her and told her that she had no idea what her kindness meant to me.

We went to the GI doctor and he came in the room all happy and said, “How are we doing today?” Well, I became one of those psycho people that give you way too much info for a question like that. I said, I really needed to get one kid some pain relief for at least one part of their body or I was going to lose it.

The doctor was wonderful. He said that it sounded like we had already cleared the pipes so to speak and that she was probably cramping. Erica said, “No, you just could not feel the hard poopy, it is still in there.” To which the doctor said that she was a very sophisticated 5 year old. He has no idea. The doctor sent us to x-ray to see who was right. Erica asked me if she thought the doctor or she was right. I said that she knows her body pretty well. She said that she was glad that she didn’t bet the doctor because he went to school for a long time to study about poopy.

I called the wheelchair lady when we were finished with the x-ray and she said that the wheelchair was available, but we would have to drive to get it. I am so glad that Fr. had his car, because many of these streets were not even plowed. We got the wheelchair, and then headed for the other hospital to pick up the prescription. God love Fr. he had to listen to me for hours, for as you know, when I am stressed, I talk a mile a minute. At the end of the drive I apologized for talking his ear off, he said, “Don’t worry, I didn’t put in my hearing aides today.”

Of course, this was also the day that I was supposed to go with Mom to see the new surgeon about her hernia. She kept asking what she could do and I said that the only thing I wanted was for her to get a ride from someone so that she didn’t need to drive alone. She said that she didn’t want to do that and she was a better driver than most of the people around here, which is probably true. However, I screamed that I wanted to have just one less worry for the day and if she really wanted to do me a favor, she would get someone to drive with her. She got very upset with me, and then we both calmed down. We both apologized. She did try to find someone, of course not very hard, and ultimately drove herself. It took her over 2 hours to drive to downtown Cincy. I just had to let it go. The surgeon, it turns out, has operated on several people with EDS. He said that he was surprised that her whole abdomen had not exploded. The operation will not be a simple hernia deal. They are going to have to drill a hole in her hip bone, and then attach the muscles of her abdomen to the bone. She will have the surgery on the 10th and she will have to stay the night. Of course the next day is Erica’s birthday. Thankfully, Chuck is going to take that whole week off.

When I got home, Chuck had arrived and was picking up Elizabeth ’s prescription. All we could give her was over the counter meds because the roads were so bad that we could not get to the pharmacy. He came home, gave Elizabeth her meds, picked up my prescription then her came home. All day I was trying to get a hold of an orthopedic doctor to talk to them about her leg. She still did not have feeling below the knee and when I finally saw her, her leg was cold and did not have a pulse. I called my regular pediatrician and he said that he was worried that she had compartment syndrome and might lose her leg. As I was talking to him, the nurse from the ortho doctor finally called. They both agreed that she needed to be seen right away. The doctor offered to have one of the doctors stay late just to see her so that we could avoid going to the ER again. Chuck headed out again, because I finally took pain meds. Everything was okay. The leg was cold because Elizabeth had the knee immobilizer on too tight. The lack of feeling is still a problem. They think that we pulled on the leg so much that we damaged the nerve in her leg. The doctor that we were scheduled to see that specializes in this type of nerve damage is going to see her on Tuesday. Again, thank you Jesus!

It turned out that the doctor was right. He told us not to give her any more Miralax until we heard from him. He did not call until 6:00PM. At about 4:00PM Erica rushed into my room and said, “Mommy, there is something glorious in the bathroom!” Coming from Erica, I was a little worried. She had a formed stool. When I told the doctor about her quote, he said that she was one of the most expressive kids he has ever seen. I told him again, he had no idea.

Today, we were all able to rest, thank you Jesus. The last couple of days were really hard, but again, when things looked really dark, God shined a light.

Chuck is heading out of town again on Tuesday morning and will return on Thursday night. He felt so bad that he was not here for all of this. I told him that last thing we need is for him to lose his job. I told him that we have a good network of people willing and able to help us. Again, thank you God.