July 13, 2017

Dance Marathons

About 6 months ago Adilene was nominated to become part of the Children's Miracle Network.  I thought sure this sounds great I can show her off and help raise money for the hospital sounds like a win/win in my book.  I wasn't sure what would be involved but I assumed that her picture and story would be used but not much else. 

So far she has been apart of 3 different Dance Marathons put on by colleges around the area.  During the Dance Marathon students raise money and "stand for the kids who can't" for a 12 hour period.  When we went to the first event I really had no idea what was going on or what to expect and we only made it for the last 3 hours.  Very quickly I saw how amazing these students were and what great things they were doing for our local Children's Hospital.  Through the 3 events we have seen these students raise more than $90,000.  I am just amazed at these young kids who work so hard to help children.  At one event they asked me to speak and I just thought I would share on the blog Adilene's Miracle story and how she has benefited from Akron Children's Hospital.

Adilene's involvement with Children's hospital started before she was even born.  At her 20 week ultrasound we found a few concerning things.  We started seeing Maternal Fetal Medicine right away and that is when we found out she had Down Syndrome.  We were followed the rest of the pregnancy with them and with there help I delivered a healthy baby girl.  When She was 6 days old we were back at the hospital seeing a cardiologist.  It turns out she had 3 holes in her heart, all were small but she would need to be followed to determine what would need to be done.  The same day she had some blood work done and we had to be admitted because of a high Bilirubin level.  She was discharged a couple days later. 

At 6 months we were back at the hospital to see an ophthalmologist.  We were so lucky to be in this area because she was diagnosed with nystagmus and the physician who specializes in that (and people travel across the country to see) was in the office at the time and now she sees him yearly to see if this resolves on it own or if she needs surgery. 

At 9 months we were back this time to see an gastroenterologist.  Adilene was having a hard time swallowing and so after a swallow study she got the diagnosis of dysphasia and she had to be put on a thickener. 

At one year old she started going to the Down Syndrome Clinic just for basic check-ups.  This is a great resource to help catch things early and help track her developmentally.

A month after she turned 2 is when were most thankful to be close to the hospital.  On the night of December 6th 2015 we went into the ER with a very sick little girl.  After some test results came back we were told right away that she had leukemia. We all just sat on the bed crying not knowing if that would be the last time I got to hold her.  She was then sent for some x-rays and then straight up to the PICU.  Fred and I got to be in the room with her for a couple hours while they worked on her.  She had to be intubated and then they had a cardiologist come in and place some lines.  That is when we had to leave the room.  Fred and I sat on the floor just outside the door for a few more hours.  Fred heard all the test results and he wouldn't tell me but I could tell from his reaction that it was not looking good.  He didn't tell me until later but he was sure with some of her test results that she was not going to make it through the night. 

The team in the PICU worked so hard on her.  There were never less then 5 people in her room and most of the time it was more like 10-15 people.  It took them over 5 hours before she was in a stable enough state that we got to go back in the room.  It then took about a week before we saw any actual improvement.  The doctors that worked on her really did an amazing job and we are so thankful we were there. 

It took her 31 days before she was discharged and since that time we have been back there about 50% of the time.  We know the majority of the staff that works on the oncology floor and in the clinic and consider many of them our friends. 

The hospital has been a great blessing to have near us and I couldn't have asked for a better place to be when we needed it the most. 

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