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Alex and Lauren’s Story

Alex and Lauren are amazing kids. Both of them have had to endure numerous medical procedures, testing and surgeries related to their mitochondrial disease. Their list of medical conditions is large but that's not what I want you to see when you look at them, or read about them. I want you to see children who are happy and are choosing to live life to it's fullest. They both attend school and are both smart and funny. In our house, we are always laughing as laughter has a way of easing the heartache. Each day we chose to let them live.


My hope is that when you read this blog, you are able to see what I see when I look at my kids. I see children who were put here on this earth for a reason far greater than I can ever imagine. They are touching people in ways that I could never dream. They are children with dreams, hopes and aspirations. These kids are already doing big things in this world and I am proud to call them my own.


For more information about mitochondrial disease go to www.umdf.org

Latest Journal Update

Life, it flies right by.....

I can hardly believe that we hare halfway throughout September!  I cannot believe it is Friday again.  Life just seems to be flying right by.  I have meant to sit down and write so many time but I just haven't had a lot of time.  The kids are back in school, Miracle League baseball has started and we have just had a lot of medical junk going on.  

The kids are doing fantastic in school.  Its always an adjustment when they go back because well, they are kids and they would rather stay home and play and because it causes more stress on their bodies.  I cannot say enough how fortunate we are that we live in a wonderful school district.  The school district has embraced my children and their disease with such compassion and they truly strive with give my kids the most "normal" school experience  they can.  

Last night was open house for Alex's school.  I had the opportunity to follow his school schedule and meet all of his teachers.  I heard nothing but wonderful things about Alex.  They have bonded with him and it shows through his school work and his attitude.  Alex is the only child within our district that Skypes into class 2 days a week.  These Skype days allows him to rest at home to regroup his energy while still getting his education and being part of his class.  The teachers just love it and his reading teacher couldn't believe how interactive Alex is. She felt like he was sitting right in class with her.  The kids think its great and it really works for him.  His body just cannot do the 5 days of riding the bus, switching classes and concentrating on school.  I will be going into school in the next week or 2 to educate the staff and students about mitochondrial disease and what it is like to live with a chronic illness.  I love these talks with the students and it always reminds me that while there is lots of bad in the world, there are some amazing teachers and students out there making a difference.  

Lauren is doing great in school as well.  She misses her play time at home but is a little book worm just like Alex.  She loves that she has Art this year and she loves spending the day with her friends. Im heading to her class next week as there have been lots of questions about her leg braces, her feeding tube and the meds she takes every 2 hrs.   Next week Lauren also has her first girl scout meeting.  I am super excited to do this with her.  I loved scouting when I was younger.  I'm even looking forward to camping with her in the future.  Scouting taught me so much about myself and the world.  She is going to love it.

Me, well I'm adjusting as well to the full days without my kids.  Its harder than I thought.  I truly love just spending time with the kids and my house, while a heck of a lot cleaner, is just a bit too quiet during the day.  I miss my kids. 

The medical front has been a bit frustrating to say the least.  We got the results back from Lauren's recent testing and just as we suspected might happen, she needs more testing.  Her fasting testing indicated some issues with the way her body is breaking down fats.  She had lots of  "hmm we don't know what to make of that"  type results and we need to continue our search for answers. We have been referred to specialists at CHOP (Children's Hospital of Philadelphia) and they will be seeing her in 2 weeks.  In the near future she will need to have more inpatient testing.  We hope that these new tests will make the water a bit less muddy.  She is getting more stable in regards to her dysautomonia.  Click the link if you want to know what its all about.  The new doctor we have been seeing at CHOP for dysautonomia has been amazing.  We have scheduled Alex to see him as well.  This doctor really thinks outside the box and he really believes that quality of life is very important.  He has already improved Lauren's quality of life and he isn't even done yet helping her.  Alex is excited for that appointment.  There are other things going on (nothing serious but irritating)  and I just ask that you pray for clarity as we make some important choices regarding the children's care. 

In a nutshell, life is flying right by.  I feel like I will miss a ton if I even blink.  While life is crazy, we always make sure to take time and remember to breathe and take it all in.  Tonight Alex and I are heading out with his close friend. Im taking them out to dinner and then out to see the new Maze Runner movie.  We all read the book and are super excited to see it come alive on screen.  Lauren and Steve are having a daughter/Daddy date night.  Both kids (and parents) are excited for our special night.  The weekend we have baseball and just spending time as a family.  We are leaving for our big vacation to Hawaii in just a few weeks.  We are looking forward to the time away, free from medical appointments, work constraints, insurance issues and everyday distractions.  It is a time for us to just regroup and focus on whats really important in life, each other. 
 
So that's whats going on in the Lindemann house.  We hope that you all have a great weekend and that you are able to disconnect from things for a bit and spend time with those that truly matter.  Thank you for loving us and following us on this crazy journey called life.....

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Comments

1 Comment

Sarah Nixdorf
By Sarah Nixdorf
Kids are amazing. Glad school is going well. Listening to Native American flutes and relaxing. According to my medical life saw kidney Dr on Wed and he says everything.s in stable/normal range which in his words doing great just keep doing what I.m doing.
I did however talk to him about Sparkling ICE/Clear Excellance and he said its fine as long as its .healthy. low sugar soda.
Thinking of you.
Www.caring bridge.org/visit/sarahnixdorf
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