Sunday, April 4, 2010

Life Cut Short

Please pray for Chuck and his family. His younger cousin died Friday in Florida. He is the high school football player ESPN keeps talking about. He fell off a balcony and died. The bad part is the news is flooded with information about how he was possibly drunk and arguing with others when he died. In this situation, which one of us as not done something stupid or silly? His family is devastated. I understand the point some are making as to make sure others do not do that same thing, but really this is more of a media show than a life lesson.

Put yourself in the shoes of his parents. They will never be the same. Please show mercy and pray for them.

"Do not pass go. Do not collect $200"

Well, I guess I know why I was so tired. I went to the doctor on Tuesday and got a "Do not pass go. Do not collect $200" pass to the hospital. I was not ready for this one, but I don't know why it surprises me to go to the hospital after all of the trips in the last couple of years!



Anyway, there was so weird stuff with my heart, that resolved, but they said I had pneumonia. I was hooked up to an IV to get antibiotics because I am allergic to almost all known medications. I was thinking I would be a very boring patient but then my head swelled up like a balloon! I was allergic to the antibiotic again! I was then switched to two different antibiotics and sent home on a third. Of course, as I am writing this I am breaking out in hives from the antibiotic again! Really? I can't just take a medicine and get better?



I was introduced to a cardiologist, in the hospital that actually knew about EDS. She also knows my new neurologist. I had to go to a new neurologist about the abnormalities in my brain (no kidding). I was told by my geneticist to play down the fact that I had EDS so the doctor does not turn and run. So I was expecting a very quick visit. Well, it was not quick. He came in the room and said, "You'll never guess what I did yesterday." As strange as many of the doctor visits have been lately, I was ready for anything, except what he told me. He said that he had just given a talk at the children's hospital on the genetic reasons for strokes and part of his talk was about EDS. He got that same "sick" look on his face as many other doctors. He as very interested in my case as my images were not so ordinary after all. He got really "excited" when he heard about my mom. He wanted to see her right away. He was hopeful that he could save us a trip to the Mayo Clinic, which was rescheduled for May. He said that this was an interesting case and he only had one other patient with EDS and they did not have the same issues. I just told him I was tired of being interesting. The truly scary thing about this is the ramifications for the girls. When I went to leave, he said if I was okay with this news or have any questions. I asked him if I needed to worry this very minute. He said, "No." I said, "That's good enough for me!"

Back to the cardiologist, she said that I had to keep my blood pressure very low, so I did not have any more blood vessels breaking in the brain because of the EDS. So, add another doctor to the list.


I did get to check out the hospital in West Chester as this is the one that the spine surgeon would like Elizabeth to have the C1-C2 fusion. We have been very leery about considering a surgery outside of a children's hospital but many of those fears were put to rest after the visit. The nurses were very nice and truly care for their patients. We still have a long way to go on the decision, but it did help. I think I would have been just fine researching the hospital with a tour, not an admission.

Saturday, March 27, 2010

"A Lantern to Our Feet"

Today is one of those days where everything is difficult. I have been totally exhausted for weeks. I went to the doctor a couple of weeks ago and found out that I have bronchitis. I took the antibiotic for 6 days, but I had to come off of it because of yet another allergic reaction. I was then put on steroids, which my body did not like either, but I was able to finish the course. So on week six, I am still not better. I am having trouble catching my breath and I have no energy. I know I am whining, but this lack of energy means that I have to rely on Chuck more and more. He is always busy with work and taking care of us, I really don't like it when I am unable to do more in the house and with the kids.

Besides the normal doctor appointments, I have been working on paper work for out taxes as well as BCMH. It is truly amazing the amount of money we spend on health related items. We do have insurance and some help from the state program called BCMH, but even with that, we still average over a $1,000 of out of pocket expenses excluding our premiums. Many people are in the same shoes and we all struggle, but when I see it all on a page, it is overwhelming. The debt that we have due to our medical expenses is stressful as well.

As an update on CJ, his MRI was normal, thank God. He will see his pediatrician soon to discuss managing his migraines. We have also discussed having him go back to see the psychologist that helped him over the summer.

I think we are closer on making a decision on Elizabeth. She continues to fall without control of her hands. She has suffered a spine concussion as well as a head concussion that caused visual disturbances for a week. We don't know when she is going to fall but there have been some frightening consistencies: an electric shock feeling, loss of control of her body which we think is causing the falling, and traumatic injury when she does fall. The other symptoms are disturbing as well which include numbness in her chest and neck, difficulty swallowing, intermittent buzzing in her hands, dropping of objects from her hands and the constant pain. It looks like the only doctor that we can do anything about it is not at Children's. It is a big decision and the added uncertainty of a child having a surgery at an adult hospital makes it more difficult. I also understand that the doctors at Children's cannot and will not condone such a surgery.

With this I have asked God to be "a lantern to our feet." I know He will show us the way I just have to be open to hear it and accept it in faith. It is proving very difficult to discern. Please pray for us

Tuesday, March 9, 2010

"For what we see is tempoary..."

Scripture reading for me has been such a blessing. If you think about it, these are 26 letters arranged in a sequence of letters. But after reading these passages year after year, they open up mind-blowing truth that I had no idea about the year before. Take, for example 2 Corinthians 4:17-18
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."


In the course of the last 10 years or so, I have read this same passage over and over. But today, it was like I had found a jewel. This has given me so much peace. I read something by Max Luca do today. In this particular passage it talks about the disciple John. John was very close to Jesus. He was a witness to his miracles, healing, sermons, triumph into Jerusalem and only a few days witnessed his death upon the cross. Did John understand why all of this had to happen? Could John grasp that Jesus had to go through all of these really horrible things only to claim victory for all of our sins for eternity? No, he saw a friend go through some really bad stuff and die. (I am greatly paraphrasing Mr. Lucado)

God sets all things for good, even when we cannot see it. Where faith comes in is trusting this. In Forward Day By Day the commentator said that the greatest quote of the bible was "Be not afraid, only believe." (Mark 5:36) What treasures we will be able to claim if we lived out our lives this way. God knows all and is good all of the time.

I want to be very honest with you, I cannot say that I am able to stand on these truths and praise God through every moment of every day. There are many days that I feel like I just can't go on. I cannot face another doctor appointment. I cannot see another tear come from my children's eyes because of pain that I cannot relieve. I can't get my body to move one more step because the pain I am feeling. I cannot face another ambulance ride. But in these moments, God shows up with such power and such peace, I know that I am not alone. He does not leave me in the pit any longer than I want to be there. Some days I choose to be in the pit. I despair and will not be comforted. I have to allow myself to be that way for a time. But I also know that when I want out of the pit, all I need to do is pray and the Shepherd hears my cry and he places me on his shoulders.

Today it was another 3 appointment day. Elizabeth was finally seen by a orthopedic spine surgeon. I believe that God was able to get her seen by this doctor, because only God could have done it. He came into the room saying that her neck was fine, wean off of the neck brace and start PT. All of this before he even looked at her. God showed up in the room and by the end, he was beginning to see that there was more to this story. Please all of you remember that I do not want surgery for her. I know the pain associated with this surgery. That being said, she has been out of school since September. She is sleeping in the dining room. She is unable to play outside or walk on her own for any length without the risk of severe injury. I really don't care what the solution is, we just need one!

This evening, I had to take CJ to get an MRI of his head. He has been suffering from migraine headaches for the last few months. I think the results will be normal, but there is always that unknown. The poor kid certainly has a reason to have headaches! But even if it is due to stress, we need to get them under control.

I reminded all of my kids today that they are all gifts from God and not burdens. I think that they needed to hear that today. CJ could not understand that he is a gift to me. I told him that if I treated him like he was a burden, I was insulting God, but cause he blessed me when he chose me to be his mom.

I might have another outlook tomorrow, but I wanted to claim my praise for a God that loves us enough to let us choose to love him. He is patient to wait for us to decide to call upon Him. In no way am I claiming to be righteous and anyone that has known me for any length of time would not use that adjective to describe me but I love this verse:
"The righteous cry out and the Lord hears them. He delivers them form all their troubles. The Lord is close to the brokenhearted and save those who are crushed in spirit. A righteous man may have many troubles, but the Lord delivers him from them all." (Psalm 34:17-19)


May all of you that say prayers on our behalf be blessed as well. Someone told me on Saturday that his prayers for healing for Erica did not happen and I disagree. There is healing and then there is different healing. I do not believe that God ignores our cries for healing. He frequently answers our prayers differently or not at the time that we think it should occur, but he does answer them.

Friday, March 5, 2010

Extremes

It seems that every day we are amazed at the extremes in our lives. Elizabeth has has been in incredible pain lately. The last two days she has not wanted to move. If you ever met her, you would know that this is not like her. Attempts to reduce her pain are not helping. I contacted some of her doctors and they suggested an EMG. I am really hoping that the pain will resolve itself before they push too hard for this test.

An EMG is a test that checks to see if the nerves are firing correctly. It involves sticking needles under the skin and running an electric charge down the nerve. Erica had one done last year and it was awful. She took medicine to calm her and keep her from remembering the test, but it did neither.

I think that the muscles in her neck are so tight that they are pushing on the nerves which is causing the pain. I think this is a similar pain to what I experienced before my last surgery. I wanted to gnaw my arms off! There is really no way to reduce the pain.

I took my family members to at least 8 doctor visits this week. One of those visits was for my son. He has been complaining about headaches. At first we thought the headaches were due to a change in his prescription for glasses. The headaches have increased to almost daily and now he is sensitive to light and sound. He also is seeing flashes of light and a ringing in his ears. I truly thought these headaches were due to stress. I was shocked that the doctor wanted and MRI.

I am not quite sure why it shocked me after all we have been through, but it did. He classified them as migraines and he seemed very concerned. Again, I thought he would send him back to counseling and very reassuring that it was probably nothing. The doctor did neither of these things. He came in smiling and left concerned and writing prescriptions and sending him for testing.

I still think that it will come down to stress. This kid deals with more stress than any one should have to endure. He called himself a "human elevator" when I asked him what it was like to be in our family. This shook me to the core. My husband and I intentionally do not ask a lot of him. He knows that he is one of two able bodied members of our family. He does many things without being told. He said that he feels very worried when my husband leaves out of town on business. It makes my heart ache when I think of the pressure on this kid.

Elizabeth watched a movie today called "Beyond Narnia." It was a about C.S.Lewis and the character played Lewis narrating the story of his life. It was a very well done production. It was the very end of the story where Lewis describes the agony of losing his wife to cancer. He doubts his belief in God. Desperately he looks to God and asks for an answer to why. He said that God said nothing. He only looked at him with a compassionate face. He said that it was like Aslan. In the story his mane was cut off brutally then he was murdered. But he came back to life and he was stronger than before. His mane was even more impressive. But if one was to look carefully, you could still see the scars.

I think my kids will be incredibly strong after all of this. They will be able to withstand anything that life throws their way. This will come at a price. Their roots will run deep and their foundation strong, but their is much they must endure.

As a mother, this horrifies me. I have some days that in consumes me. But "Perfect love casts out fear." And there are times that I can allow that love to consume me as well.

On the other extreme, we are seeing the hand of God at work in our lives. He has done some many things on our behalf that it amazes us every day.

The organizations that have agreed to help us with our home modifications are called Hearth and the Cincinnati Occupational Therapy Foundation (COTF). They have agreed to help us with the whole project. The total cost, if we were to attempt this on our own would be close to $100,000. But because there have been so many people willing to help us, the cost will be lower because of donated labor. This is so amazing, I cannot quite describe how humbling I feel. Just knowing that there are others willing to work with us and help us in any way they can is hope enough to keep going. But help that will be so needed and expensive and impossible for us to do on our own goes beyond what words can say.

Here is a link to the COTF http://www.cintiotinstitute.com/cotf/. They are the ones that will accept donations on our behalf. It is tax deductible. We are going to need as much help as we can gather to get this done, but I have confidence that God will not abandon us now. We have comes so far and have seen Him move mountains!

Tuesday, February 23, 2010

What is That? A Light at the End of the Tunnel?

Unbelievable blessings continue to rain from the sky. We are seeing things that God set in motion years ago to help us that this particular moment. I am amazed at how beautifully His plans unfold. We know God is with us right now. His presence is wonderful.

The elementary school where two of my children attend had a fundraiser for our family. The principal and my daughter's teacher with the PTC did all of the work. There were hundreds of people at this event. My oldest daughter was not able to attend so my husband went. He said that every time he turned around, some one else was offering help or giving encouragement. He said he spent the night in tears. He was so overwhelmed by the compassion and love shown to our family.

Another example of blessing came from the lady we hired a company to come out and evaluate our home. I mentioned that she talked to some architects pro bono. Well, she did much more than that. She has presented our story to charitable organizations here locally. She said that before she could even come to the part about asking for help, they already offered it! She has spearheaded a giant renovation plan with accommodations for all of us. This is life changing stuff she is doing! The groups are Hearth and Cincinnati Occupational Therapy Foundation. They are like angels and I believe that they are doing God's work. We are so humbled by their efforts, money time and care for our family. If we can make our home safer my children and I will see a huge benefit in the level of pain.

The next day we were visited by a support coordinator from the Board of Developmental Disabilities. I had applied thinking that maybe they could help, but I did not think we would qualify. Not only did we qualify, but we approved on emergency status! This means that there is a possibility that some of the materials that need to be purchased for the plan from Hearth could be funded through this program! I spent a long time in the special education field and I rarely had a family that received this support. I have never seen it happen so fast and in such a complete way! God had it all arranged. Even the support coordinator admitted it was the "hand of God" doing all of this for us!

If we can keep us from traumatic injury and strengthen our bodies we have a chance to lead a more normal life. We have a chance of avoiding big surgeries in the near future. We have a chance of living without so much pain.

We praise God for all of this because all of my effort lead to years of frustration and anger. When I finally realized that I could not do this and God could, He has shown me that His way is much better!

Monday, February 22, 2010

God is So Good

Here is what we know right now. First, Elizabeth is still falling. So far she has fallen and received a concussion to her spine and to her head. The spine left her numb in the chest and neck area. The head concussion left her eye sight distorted for a week. A pattern is forming that is disturbing... she is not putting her arms out to catch herself. When anyone falls, there is an automatic reaction to put out your arms to protect yourself. Elizabeth keeps falling and she is getting injured so severely because she is not putting her arms out.

This was confirmed, at of all places church! We went to service on Ash Wednesday and I promised CJ that if he was asked to acolyte, I would serve with him. We brought Elizabeth in her wheelchair. I glanced up and saw that she came up the stairs for communion. I saw that Chuck was right behind her. I did not think anything of it until Fr. Daggett told me to leave the alter and go to the sacristy. From there a friend of mine directed me to Elizabeth on the floor.

I cannot relate the picture I saw. She was lying with her hair encircling her head like a hallow. She looked beautiful, but she was hurt badly. Her left leg was twisted horribly and her neck did not look right.

I found out that Chuck did follow her up and back from the communion rail but she went into the front pew from the other side. She was only a couple of steps ahead of him and she just collapsed. She said that her hip and her shoulder were out.

I thought that since her shoulder was dislocated that she put her hands out, but that was not the case. The people in the pews said that her hands did not break her fall, she just fell backward. She dislocated her shoulder from the impact from the fall.

I say that God is good in this situation because He is. Elizabeth stayed very calm through the whole ordeal. We tried to put her shoulder back in, but she made us wait until the service was over. She thought the church would empty, but people just stayed and offered to help and prayed.

The only time Elizabeth cried is when we tried to put her shoulder back in. The rest of the time, she was so calm. When I was close to her, I could smell God's presence. I am not quite sure how to explain it other than it was beautiful. God wanted us to know that He was there and He was in control.

The Hamilton fire department was wonderful and saw the obvious dislocations and loaded her up into the ambulance carefully. But, as with most of our adventures, by the time she made it to the x-ray table, she was already back into alignment.

Why go? Well, we could not risk moving her wrong which could have torn her hip tendon more, or injured her shoulder as well. The biggest problem would have been her neck. She hurt it again with the fall.

We left the ER with her parts snapped back in place, but we know that it was not an accident. For some reason, God had a plan. I am claiming this publicly so that I can look back on this some day and hopefully understand it more, but I might have to wait until I am with Him. Either way, "Those that put their trust in God will not be shamed."