Yippee I think this is Section#5 and the last

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through several fund raisers including several concerts where a song was written by a Christian singing artist and her husband and sung about the kids by the group at many concerts, as we were pretty much financially drained at this point. We packed her up and flew with my middle sister who is a nurse, to Cleveland for open heart surgery VSD repair just 2 1/2 months after her biopsies. The other two were left with my oldest sister to take care of them. We were blessed to stay at the Mc House in Cleveland. What an awesome place! We have since returned for follow up appointments and have been so grateful to be able to stay there at an affordable rate for us. One of the return visits was at Christmas time and we were really struggling to pay for us to get there to see the specialist much less have any money for Christmas. When I told the Mc House that the children were very upset that we were flying on Christmas Day and were worried about whether or not Santa was going to find them or not, I was told not to worry that Santa would indeed find them. When we arrived at the house the kids were told that Santa had been looking for them and they needed to go up to their room. We were dead tired and stressed out at that point. When the kids opened the door they were floored and so were we. There in our room were presents and stockings for everyone filled with all kinds of goodies, including the one special present that each of the children had asked Santa for. My youngest daughter had written a letter with her brother to Santa telling him that they were going to have to be in Cleveland for Christmas at the Mc House because their sister was "really bad sick again" and that there would be a lot of sick kids there that could sure use his arriving there at the house. I had sent that letter on to them there at the house. It was one of the most touching experiences I have had in my life. Just knowing that complete strangers had given of their time and money to make sure that my children had a good Christmas. People can be so Awesome!!!!!

Our daughter underwent open heart surgery and I was very grateful that my sister was there to kick me out when things became a little hairy for her. Although she had a few complications, overall, she did very well and we came home 2 weeks ahead of schedule. Sitting in that waiting room while I knew her heart was stopped, was one of the hardest things I have had to do with this disease. Originally they told us they were going to apply a patch over the whole and it would not take very long. However once they got inside her they found her hole to be quite a bit bigger than they had thought it to be and we were called and told that they were going to have to stop her heart, she would be on bypass, so that they could stitch her heart together. All I can remember was sitting down and praying to God that he not take her, that I was selfishly not ready to give her back to him. It was approximately 3 more hours before we got the phone call that they had had a minor complication but her heart was beating and they were closing her up. I can remember looking at my sister and feeling as if I were going to faint. My sister had talked us into letting her be the first one in to see our daughter, being she was the nurse and could assess the situation a little better, and they were willing to tell her more than us as well since she was a critical care cardiac nurse herself. It was hard waiting for her to come back out to get me. When she did she told me that our daughter did not look like herself and to be prepared, but that she was doing OK at the moment and not to cry or do anything that let on to her that I was upset. I was thinking yea right! When I walked into her room I was shocked! She was so swollen looking and her color was horrible. I was afraid to touch her yet I wanted to touch her so badly, I just wanted to hold her. She was not really awake. About 3 hours out of surgery all her monitors began to sound off, my heart hit the floor! I knew from the look in my sisters eyes things were not good, she promptly escorted me out of the room and said it was not good for me to watch and she would come and get me when things were better to let them do their work with her. I didn't want to leave yet something inside me said it was OK. My husband and I sat in the waiting room for what seemed to be hours and waited for word from my sister. Our daughter was having trouble with her volume levels and they were waiting to see if she was going to need to have even more blood given. In the end she worked her way through it and my sister came out to tell us she was fine and we could come in and see her for just a bit. She was not awake and I was so scared. My sister stayed with her round the clock bless her heart. From there she continued to improve everyday. It is now 3 and ½ years post surgery and she is doing great in the area of her heart!

Our sons stroke like attacks were beginning to increase in frequency. He went through MRI's and EEG's all of which did not give us much more information as to what was going on with him. It was beginning to affect his ability to be at school. He attends the school I teach at and I was constantly being pulled out of my classroom to go to his room because he was in severe pain, could not move, or was shaking like in a grand mal seizure. He had pretty much terrified all of his teachers and my colleagues by this point. His principal at the time was very little help in dealing with his needs. He currently has an awesome principal who is a very caring and compassionate man and has gone out of his way to make sure my son has what he needs to succeed in the school setting. But up until this principal, it was extremely interesting especially since these people were also my bosses. It was very difficult for people to understand that I was not the district employee in the situations concerning my children but rather the mother. It was assumed that because I was a district employee I should settle for less than what my children needed because I understood and knew the financial difficulties of the district. This couldn't have been further from the truth. Because I was a district employee, and a credentialed special education teacher, I knew the laws and what my kids should be getting in order to help them be successful in their educational careers, and was extremely frustrated that they were not. The elementary campus my children were on was very out of ADA compliance especially for a child needing to use a wheel chair. I had told the principal several times as well as complained to the district office level about the parking lot and the ruts and cracks in it from the so called Handicapped parking area and the safety issue involved with the parking area itself, as well as the cracks in the hallway side walks where the wheel chair wheels would get stuck in, and the fact that there was no wheelchair accessible rest room available to the kids. The way they had the handicapped area, parents would clip the corner cutting into the parking lot and cut across it. At one point I was unloading my daughters wheelchair when I was hit by another parent cutting the corner in the parking lot. Although I was grateful that my daughter was not in the chair and it was just me who was hit, fortunately just a few bruises and a torn skirt, I was very upset at the lack of handling of the situation by the principal. I was told to sue the parent not the school district. All I wanted was for them to create a safer handicapped parking situation. A month later I was pushing my daughter in her wheelchair when the wheel got caught in a rut and it flipped completely over. Our daughter hit her head on the asphalt and was suspended from her waist from the seat belt right at her G-tube site. The bar of her sunshade connected to her chair hit my son in the head as it went over. He was walking next to us, and caused a huge bruise to his head, and I ended up banging my knee on the back side of her chair trying to avoid landing on top of her. When I asked that paramedics be called I was told I was over reacting to the situation. I demanded that they be called and she was taken in where we found her to have a concussion and severe damage to her stoma area requiring surgery to fix. I have to fight in IEPS in order to get the district to meet both our daughter's and son's educational needs. I attended many IEP meetings where things were promised but never carried through on until I would go to the district office level to complain or attend school board meetings to try and get help from them with our children's needs, and even then some were ignored. We finally had had enough when for the third year in a row our daughters educational needs were not being met. We hired an attorney to start attending our IEP meetings. Our oldest daughter and son attend school half days due to severe fatigue, our youngest has been able to attend school on a full time basis, but this past year has begun to miss more school due to illness and general malaise. It has been a fight to get a home teacher to make up the time they are not getting in school. Although things are currently better, we are still dealing with problems when it comes to their educational needs.

Our son had a lump appear on the middle of his spine at the base of his neck. It was removed the first time and we were told it was a lymphangeonoma, to a fatty tissue tumor. It appeared to be about 4 to 5 inches in length and about 2 to 3 inches in width. It was causing him to have severe pain down his arms and was beginning to shoot down his spine. The pain was so severe he would be writhing in pain and begging for us to take him to his doctor. When it was removed the first time, his symptoms were resolved for about 8 months or so, then one day I put my arm around his shoulders and he came unglued. The lump was back. So back to the surgeons office where we were told that the original surgeon had not gotten all the cells, allowing the mass to regrow. He was then scheduled for yet another surgery to have it removed again. This lasted for almost a year and low and behold it has grown back. He has endured huge amounts of pain with this mass. We were told that he now was suffering from Nurovascular Dystrophy which was probably set off by the previous surgeries and if they went in again he could suffer from even further nerve damage and unbearable pain. At the present time he is still dealing with the mass and the pain comes and goes, sometimes so excruciating we have had to take him to the hospital for care. Often times he experiences swelling and pain in his legs as well. He also is dealing with dysautonomic episodes that cause him to experience heart arrhythmia's, tactic-cardic to very slow where he will pass out from the events. He has severe chest pain during the episodes and it is very frightening to all who are involved watching him experience these episodes, as well as for him.

Our oldest daughter is dealing with the NVD ( Nuro Vascular Dystrophy) as well. Her arm will swell up and feel extremely hot to the touch and be extremely painful. We have been told that this is all part of the dysautonomia that is occurring in their bodies. The dysautonomia is also the culprit to their sleeping for hours on end in cycle like patterns and having a very difficult time keeping their nights and days not confused. They have all struggled with having good sleeping patterns all along.

Our youngest is dealing with the severe heat intolerance like her brother and sister and her migraines have been increasing in severity and number over the past year. As the years go on we continue to experience new symptoms that are hard for all involved, however the children maintain a positive attitude for most of the time. There was a time that our daughter was so severely depressed that she made a suicide attempt. This was heart breaking for me as I struggled to understand her pain. I felt that I was giving her all I could to help her live a life of disease .and it wasn't enough for her. She was simply sick of being sick. She has been in counseling for this to help her deal more effectively with the trials of being a sick kid. Her doctor highly encouraged me to get her more involved in the normal teenager type things. Although I am still convinced he really doesn't understand just how hard that is for her, it has been good for her. She joined the high school choir at church and traveled to San Francisco on a choir tour trip. This was something I had done as a kid several times, but never thought that it would be an option for my children. Although I did go with her on the trip and she did end up coming down ill ¾ of the way through and ended up in the ER room in San Francisco she did it! She had a blast just being normal for a few days. For the first time their doctor and his staff talked me into letting the kids go to summer camp. This was a very frightening idea for me. I thought they had all pretty much lost their rockers! There have been so many things that have taken place over the years, human mistakes that have placed them in life threatening situations, the thought of turning loose their entire care to someone else for an entire week who did not know a thing about them or their disease really, and where they would be 100% away from me, several hours away from me where in an emergency I could not be there for 3 to 4 hours, was extremely frightening. However with much prodding and encouragement, I decide to allow them to attend the Muscular Dystrophy Camp this summer. I cried a good portion of the way home after dropping them off at camp. They were thrilled to be there, except my youngest who cried when I left. I spent one of the most stressful weeks of my life worried sick about them, but when I saw their faces getting off of the bus upon their return I knew it had been the best thing I could have done for them. They are thrilled and excited about going next year. They talked the entire 3 hour ride home from the MDA office non stop about all they had gotten to do and the tricks and games that had been played on the kids and counselors. I am so grateful to MDA for doing what they do. They gave my children a piece of a child's life that they otherwise would not ever have gotten to experience. For a week they were just as normal as anyone else there!

The above stories are just a glance at what it has been like to be on our Mito trail. There are many more both positive and very negative experiences we have had We have endured many many difficult times during our Mito Journey, but have just as well endured many wonderful things as well. People ask me all the time how I do it having 3 ill children and dealing with all the medical frustrations that we deal with on a day to day basis. I tell them that I have a choice. I can choose to live watching my children die a very slow painful death or choose to live watching my children live. I have chosen the later of the two through a growing process. We take great pride and joy in their accomplishments and we morn the times that they loose out due to the illness. Every day and new challenge that we get to experience, we all learn something new about each other and the good in other people around us. We have run into some "bad" people who have made our journey tough at times, but we have also run into some very "good" people who have tried their best to soften the ruts in our Mito Road. I have worked very hard to develop an honest open relationship with their doctors. I think this is one of my keys to being able to survive all of this. I don't hesitate to ask questions and let them know when I am not happy with something, as well as when I am happy with what is going on. I have a relationship with them that we can agree to disagree on some things and still work towards what is in the best interest for my kids. I am persistent in being an advocate for my children. But most of all, I have fun with them and love them with all my heart! We have survived and will continue to survive living with Mitochondrial Disease. We have no choice!!! And who knows, maybe one day there will be a cure! This is what we pray for on a daily basis, but until then, we put one foot in front of the other, hold our heads up high, and make everyday count for something! "Our road is long with many winding turns that leads us to who knows where!"

Let me know what you think when you get through reading all this.

Thanks

Big hugs to you all,