The Burning Questions, Answered!

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Did you always want to know more about MaryEllen and Kevin but were afraid to ask? Do these questions keep you up at night?

Well, rest easy, I am here to help!

 

Typically, people usually ask the same things about the kids, so I figured I would address them all in one post… Or two, if you want more!

So here’s the scoop from the inside.

Are MaryEllen and Kevin twins?

MaryEllen and Kevin are not twins. They were born 14 months apart. Here’s a secret: When they were young, I was asked this so many times that I said yes sometimes because people seemed so disappointed when I told them no!

How rare is Warburg Micro Syndrome?

Warburg Micro Syndrome is extremely rare. There are less than 200 known cases worldwide. I was not aware of any other families until 2008. MaryEllen was 21 years old! Facebook has helped immensely. Our little Warburg Micro Syndrome group has grown from 4 children in 2008 to 39 in 2015.

 

If their condition is so rare, how do you have two children with it?

Because MaryEllen’s and Kevin’s syndrome is genetic, (autosomal recessive) there was a 25% chance each pregnancy of having another baby with their syndrome. We didn’t know this at that time because it took years to get a diagnosis. My husband and I each carry a recessive gene for Warburg Micro. Because it is recessive, we don’t exhibit any signs of disease. For each pregnancy, there is a 25% chance of having an affected baby, a 50% chance of having a baby that carries the gene recessively, as we do, and a 25% chance of having a baby that doesn’t have the affected gene at all.

Why did you have another child after MaryEllen and Kevin if you knew about those odds?

James had a 0% chance of being born with Warburg Micro Syndrome. Through the miracle of adoption, he became our son. We always wanted a large family and were afraid to have any more biological children so as those doors closed, God opened another. I am and will always be grateful to his birth mother for her selflessness.

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Do MaryEllen and Kevin live at home?

Yes, they do. We have been very fortunate to have a wonderful team of nurses and aides that help to care for the kids. It took many hours and days and months of fighting, but our insurance company finally relented and they pay for nursing in our home.

How do you live as a family with people coming and going constantly?

That is the question! It takes a lot of patience and perseverance to make it work. When nurses started coming to our home, it was only for a few hours per day. As MaryEllen and Kevin got older and more medically fragile, the hours increased. We now have nurses in our home 24 hours a day, seven days a week. What works for us is having a separate space. Our house is set up perfectly for that.

How do you know what MaryEllen and Kevin want or if they are not feeling well, how do you know what is bothering them?

MaryEllen and Kevin do not communicate with words but they do understand. When they are not feeling well, I ask them if anything hurts, by body part. MaryEllen has a noticeable yes and no. For yes, she nods her head back or smiles and for no, she shakes her head slightly. This also works well for making choices. She is very clear about her likes and dislikes. Kevin is more subtle. Sometimes he smiles for yes. For no, he usually makes a very obvious mad face.

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Why do MaryEllen and Kevin still see a pediatrician?

It’s so hard finding doctors that understand the kids. We have been very fortunate finding a good team. They treat the kids as if they were their own and they know them so well. Because our team of doctors has been treating MaryEllen and Kevin for so long, they really are the most experienced group of professionals in the world treating patients with Warburg Micro Syndrome. We will continue to see them as long as they will have us. I couldn’t imagine starting over.

How do MaryEllen and Kevin eat?

Both kids have feeding tubes for nutrition. They ate by mouth for a long time (Kevin, 11 years and MaryEllen, 19 years) until they needed more calories than they could eat by mouth. Feeding tubes also come with an added bonus: No more yucky medicines by mouth! That alone made it very worth it to them.

Why do MaryEllen and Kevin have trachs?

If you looked into MaryEllen’s and Kevin’s throat area, you would notice that the back of their throats are very forward. It was very difficult to maintain good airways as the kids got older. We had to place their heads in certain positions so that they weren’t snoring so much. By the time they did get their trachs (Kevin, 11 years and MaryEllen, 24 years), both kids needed them immediately. They have been much more stable since they got them and scary situations are much more manageable.

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Do MaryEllen and Kevin need a ventilator to breathe?

Yes and no. Kevin has a schedule of vent use. He uses it at night and for a few hours in the afternoon. The ventilator provides good, deep breaths that he cannot do for himself. This helps to aerate the lungs and prevent lung collapse. When he is off the vent, his breaths are much more shallow. We monitor his pulse ox and CO2 levels to make sure he doesn’t enter a danger zone. As long as he maintains good numbers, he stays off the vent for the allotted time. If he runs into trouble, we just pop him back on. It really is as easy as that. Most times, the trouble he runs into is just being tired. When he’s tired, his breaths become more shallow and his pulse ox drops a little.

For MaryEllen, we are still on a very slow vent weaning schedule. She is now tolerating 30 minutes per day off the ventilator completely. Before MaryEllen got sick during the summer, she was on the vent only at night. Weaning slowly allows her to be successful. In my book, that’s a win/win! She comes off the vent and does well. I have come to learn that you can’t rush these things. Safe is always better.

It all seems so sad. Is it?

Not at all! We are a typical family in every other way. We have fun. We laugh. We cry. We are the same as you. Living in our family gives us perspective, though. We save our energy for the important stuff.

 

And the most asked question of all?

How do you do it?

I never know how to answer that question. What are my options? I take care of my children to the best of my ability. I love them with my entire heart. That’s how I do it. Being their mom is the greatest privilege and gift of my life and I am grateful for each and every day with all of my kids.

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Is there anything else you want to know? Let me know. I will gather all your questions and do this again!  I love sharing our story and showing you how normal we are. Take that last part with a grain of salt! Ha Ha!

 

 

 

 

 

 

 

2 thoughts on “The Burning Questions, Answered!

    1. Hi Rachel,
      Kevin loves to listen to Harry Potter audio books and he likes to watch (listen to) superhero movies like Avengers and Transformers. The louder it is the better! MaryEllen’s favorite things include listening to Disney princess music and watching (listening to) movies like Princess Diaries and High School Musical. She really loves to go shopping too!
      Thank you for asking! 🙂

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