Welcome to our journey. Both Alex and Lauren have Mitochondrial disease. We do not know what the future holds but we make the most of everyday. We are so thankful to our family and friends for laughing, crying and just being there for us. Remember "Faith makes things possible...not easy" Here is our life.....
For those of you that don't yet know Alex, he was born April 18, 2003. He is a spunky kid full of life. He was diagnosed with mitochondrial disease Complex I defect at age 3. He has symptoms from birth. At this point his main problems are: severe GI dysmotility. He has a G-J tube and is TPN dependent. He has chronic constipation as well as gastroparesis. He is lactose intolerant and has pancreatic insufficiency. He wears BiPap for central apnea and CO2 retention and supplemental oxyen for increased endurance. He has what is believed to be central neuropathy causing tingling in his fingers and toes. He has autonomic dysfunction that causes a variety of problems including heat and cold intolerance and blood pressure instability. He has some hyptonia and gets PT and OT weekly. He gets tired very easily. He has difficulties with sensory integration and processing. He attends a normal kindergaten with a private RN. Alex is a joy to be around and anyone who meets him quickly falls in love.
Lauren was born October 7, 2007 at 35 weeks. She has an abnormal brain MRI and has some mild developemental delays. Her biggest delay is in her speech. She suffers regressios in her speech with illness and anesthesia. She has significant reflux and had a nissen fundoplication and G-tube placed at 4 months old. She is the opposite of Alex is the pooping department. She dumps meaning her food moves through her too quickly. She has difficulty maintaining and gaining weight. She ahs some autonomic dysfunction as well. She has difficulty maintaining proper fluid balance and becomes dehydrated very quickly. She also gets swollen very quicly as well. She is heat and cold intolerate. She receives PT, OT and speech. She is just too cute for words.
Mitochondrial disease is devastating. The energy producers in his cells are not functioning properly leading to cell death. Cell death causes the organs not to function properly. Mitochondrial disease is a progressive and often life-threatening disease and there is no cure. Go to www.umdf.org for more info.
My husband and I are truly thankful for our children. It is hard not knowing what the future for them holds. We do know that each day with the kids is a gift in which we intend to truly enjoy. Thank you for visiting their site!
Please pray for all those who are researching this disease as hopefully they will find a cure in time.
Life is about the dash....
Mar 7, 2014 10:13amIts been a very long time since I have sat down to blog. There have been many reasons for my lack of blogging. Some of it is time. Some of it is for a little privacy. And some of it is because I just don't know what to say sometimes. Now those who really know me, are probably chuckling a bit to themselves as I rarely stop talking and I do enjoy chatting quite a bit.
You see, the surface stuff is really easy to talk/blog about. What are we doing this weekend, how is work, how is school for the kids, are we going back to Disney this year and so forth. Its much harder to talk about where we are with the kids medically speaking. My mood often dictates how much, if any information I want to divulge on our day to day living. While I love to blog, it isn't always easy.
Sometimes life is just status quo. The day to day grind of parenting 2 amazing, yet medically challenging kids. Each day I get up bright and early to give meds, treatments, pack lunches and snacks, making sure teeth are brushed and backpacks ready to go. We do therapies and homework. Religion class and grocery shopping. We play games and read books. We clean the house and do chores. We relax on the weekends and fill our lives with fun whenever we can. We play in the snow and go sledding (we built a pretty awesome luge track this year) and we have friends come over to play. The "normal" day to day life that most people with children experience. And while our "normal" is a tad different. Its normal to us.
Other times life is a bit more complicated and not as easy to blog about. Unexpected trips to the ER for Central line issues that are concerning to doctors. Sometimes its an ER trip for scraped knees that have gotten really infected because of a poor immune system. It can be from a simple cold that has shut down their GI systems or set the stage for pneumonia to settle in their lungs. It can be from fatigue that leaves 2 kids fighting over who gets to to to bed first.....at 6:00pm. It can be from watching your child struggle after a decision on treatment was made that you needed to try. but knew in your heart wouldn't work. Or from just watching the little pieces of their body's puzzle, loosen up and fall apart. Sometimes I share these things because I truly feel that we need your prayers and sometimes I keep them to myself because when you talk about them, they become more real. Too painful.
Then there are the times when I want to crawl into a hole because the emotional burden of it all is too much to take. The times when I just feel like I can't take any more. The times when I look at my babies and what this disease is stealing from them and I want to scream to the world and God, "This isn't fair! They did nothing to deserve this! Leave my kid's alone!! Their crosses are already to heavy!" I find myself angry and irritable. It is those time when God feels so far away. These aren't things I want to blog about. Things that I in no way want to tell the world in fear of coming across ungrateful (as many parents have already lost their child to this disease) or worse yet, weak. But nonetheless, they are still a small part of me. I know that these feelings are expected but I try not to stay in that part of life very long. It just doesn't serve any purpose and blogging during these times can either keep me feeling sorry for myself, or generally if I do blog about them, make me feel better and help me to see that God is ever present.
I think I would describe myself as a piece of hard candy. The kind when you bit into it yields a gooey center. Yep, that's me. Sometimes when I go back in the blog to find out some medical information that I somehow forgot, I stop and read a few random entries. The journey we have taken is filled with the everyday, the complicated and the painful. I can see where I have laid out my emotions for you all to read and other times when I can easily read through the lines of my own writing and realize that I may not have been completely honest with myself or you about what was going on.
The great thing is, the journey is far from over. While I apologize for not being a more consistent blogger. Realize that I am just like you. I'm not a superhero or even all that special. I am a Mom who starts and ends the day with simple prayers. I am a Mom who carries the same burdens that every mother carries. I am a Mom who would walk to hell and back to help my children. I am a Mom who loves her children with every single ounce of her being.
I blog to show you a glimpse in our life. To help other parent's facing similar challenges. To record for myself and my children what that dash truly meant between our date of birth and our date of death. Someday, that dash is all the world will see but, I cannot worry about that right now. We are too busy making a pretty awesome and memorable one. A dash that if we are lucky enough, will change the dashes of many other people.
What are you going to do with your dash?
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