The Schulze Family

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.

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.

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.  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 manuver about and my neck should be fresh and new and easier to manuver 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!

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 5^th 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 Schwieterman, 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 18^th)

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.

A couple of weeks ago, I meet Marney, Brain and Deb (some of the people from Hearth Professionals and COTF) at IKEA to pick out the new kitchen.  All of these people spent hours planning the kitchen so that it would take stress off of our joints and hopefully make cooking easier and possible for all in the family.  The oven will be wall mounted so that we can just slide dishes from the oven to the counter.  The sink will have nothing underneath it so anyone in a wheelchair would have access to water.  The microwave will be on the same level as a wheelchair so we do not need to reach too far.  The dishwasher will be in two separate drawer so theoretically we will not need to empty a dishwasher.  The overall design of the kitchen will be able to accommodate multiple wheelchairs!

It is incredible to me to comprehend the blessings that have rained down upon us!  A man at church told me yesterday that he was disappointed that his prayers have not “worked” because he expected us to be healed instantly.  I disagreed with him.  I think the prayers he has said as well as the prayers of so many others have worked.  They have worked to glorify God.  All of this is as a result of prayer.  Only God could take an impossible situation like ours and turn it around to be such an inspiration to us and others.

Brian told me about when he went to talk to someone about the new floor he happened to mention some of our story to the owner.  The owner had a child that had medical problems and spent a lot of time down at Children’s Hospital.  Without asking, the man offered an upgraded floor at cost, minus 10% plus free installation!  This is what I mean. God uses the bad to create good!  We don’t know why we have to go through all of this.  There are times that I think I can bear no more, but when I get that way, I just take a ride on my elevator!

Please read the great article written by John Johnston of the Cincinnati Enquire:

http://nky.cincinnati.com/article/AB/20110309/NEWS01/103100317/-1/7daysarchives/Donations-help-family-meet-challenges

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!

The elevator has arrived and is ready to be installed.  Work on the installation should begin next week!!! Praise God and all that helped us to get to this point.  It is almost unbelievable that things have come so far so fast!

The bathroom that is being installed right next to the elevator shaft will be completely handicap accessible.  The drywall is installed and nearly finished!  No more bathroom injuries!!!

I know that it may sound dramatic, but I just want to cry.  We are so blessed!

THANK YOU!!!!!

Elizabeth was interviewed through me while she was in the hosptial.  Here is the link

http://www.wcpo.com/dpp/lifestyle/religion/giving-thanks-during-tough-situations

Elizabeth is home from the hospital.  She is stronger than she has been in a while.  The work she did while on the physical rehab floor was amazing.  Her endurance increased as well as her strength and her pain levels decreased.  I think the hospitalization was a success.

However, one of the reasons we wanted her in the hospital is so that we could get all of her doctors to discuss the falling issue.  Not all of the doctors were in the meeting, specifically her regular doctor, who called the meeting together; her neurosurgeon and her spine surgeon. 

All of the other doctors said that she looked great, to which we agreed.  They also said that they did not think her falling was due to the POTS (the heart issue).  We also agreed that her POTS is being controlled with medicine.  No falls occurred while she was in the hospital so they had no idea why she was falling.

The absence of the key doctors not withstanding, they had no theories, but even more important, no ideas on how to keep her safe.  In fact, they suggested that she walks more places and more often.  Is it just me, or does this sound crazy.  The only places we have really let her walk are the YMCA, where she has fallen at least once and had to leave in a life squad; our house, where she has suffered concussions, torn hips and other damage; church where she has left in a life squad and they bought a backboard just for her and some friends houses where she has left in a life squad.  Do you see a pattern? Oh, by the way, the reason she was restricted is based on their advice.

I asked, so if she falls in a store, what am I supposed to do?  Just let her lie there a couple of hours so she can put all of her joints back into place?  Honestly, I don’t think these doctors understand real life.  In theory, letting her walk more places sounds good, but in reality, it is crazy.

So… as a family we had to decide what to do on a daily basis.  Our decision was to not live in fear.  We cannot live our life fearful of the next time she falls.  Fear is the opposite of faith.  Fear puts us in prison and that is kind of what Elizabeth’s life has been like for almost a year.  We are going to let her walk more and go more places.  We are going to do it safely and with supervision, but ultimately we have no choice.

We are not, however, going to give up trying to find out why she is falling.  I think some of the recent falls can be attributed to her POTS and we will do everything in our power to keep her medication and water levels correct so she does not fall, but we need to know more about the instability.

She will go to a neurologist soon to check her brain stem.   I do not think they will find any abnormalities, but it was suggested that this be done.  We will also check in with her spinal surgeon in February.  Hopefully this will give us enough time to rule all other possibilities out and make an informed decision.  Despite what the doctors think, I do not want her to have the C1-C2 fusion.  To me, the surgery would be of last resort.

All of these thoughts were going through our family as we brought her home last week.  We were sad, frustrated and a little angry about the meeting.  We were all discussing it when Erica said, “Elizabeth is home!  Our whole family is in the same house.  I cannot stop praising God!”  When things look bleak, a fresh perspective is sometimes all you need!