May Edition eSpecially Parents: Michele's Story

 I mentioned in my original post that we found a new doctor that has adjusted Ethan’s medicine, making his quality of life drastically better. Though, he currently has entered another flare up, Ethan had 35 DAYS fever free with a significant decrease in pain!!

Though I am sad that he is not feeling well again and the doctor did tell us he would still have set backs, he has NEVER seen more than 1 day in his 28 months of life without a fever and/or pain! So he is finally making strides and moving in the right direction! His frequent doctor visits and many procedures have FINALLY paid off!

Ethan is like a different kid!! Once he felt better he did things physically, cognitively and communicatively he was not able to do before. One day he actually climbed into his booster seat at the table all by himself. Another day he fed himself more than 2 spoonfuls of baby food without spilling. He will only eat certain textured foods and still eats stage 1 baby food due to sensory issues and abdominal pain. While he belted out all the words to “The Itsy Bitsy Spider”, I cried with joy, thinking, “you were listening to me every time I sang to you.” He began to clean up his toys when I started singing the “Clean Up” song. I burst out laughing when he spontaneously busted a move to the background music in the special Mommy & Me group we belong to.

Ethan receives physical therapy twice a week and swim therapy for the pain, arthritis and developmental delays. He actually swam on his own with Coast Guard approved floaties, of course. I think that is the moment I realized that he is going to be okay! The therapist told me that children with arthritis and joint inflammation often excel in swimming because in water bodies are weightless putting no pressure on the joints. She was still amazed because she too saw the “old Ethan”.

Sitting, standing or staying in one position for a period of time was always very painful for Ethan. We actually made it to the doctor in New York City, which is about a 2 hour car drive, without a hitch! Even our 7 hour drive to the NIH Hospital in Maryland was much more tolerable for all of us.

Seeing Ethan singing, dancing, running, sitting, swimming, feeling so well and being so happy is more than I could ever ask for. Even if it is for only 35 days, I will take it but I have a feeling we have MANY more awesome days ahead.


eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catchup, read more here.