After Phoenix passed I have been waiting for the other shoe to drop. Well, it has. The day after we brought Little Sister home from the hospital Little Brother was admitted into the hospital and was diagnosed with Epilepsy a few days later. Those days in between were long and difficult – both physically and emotionally. The hospital doctors originally didn’t believe that he was having seizures. Long story short, the doctor finally saw Little Brother have a seizure and was able to attempt to manipulate his arms during it. Finally, the tests were ordered and we receive his diagnosis. To top that off he also had a double ear infection and was severely constipated; neither of which he was showing signs of. By the end of his hospital stay he had 2 enemas, a laxative delivered through a ng tube, an x-ray, 2 eegs (one regular and one continuous) and a MRI.
Thankfully, Luke and his mother were able to stay up at the hospital while my parents were able to stay home with me while I recovered from a c-section. I was able to make it up there a few of the days he was there. It was gut wrenching to be stuck at home while my 2 year old was in the hospital having a seizure every hour.
Little Brother came home earlier this week and we are trying to figure out this new normal. The next morning, Little Brother could not walk or sit up on his own. It was pitiful to watch my once extremely active 2 year old, who loves to run, jump and dance, do nothing but lay on myself or his grandma. After a medication change he gained his balance/coordination back. He still isn’t 100%, but we are getting there.
We feel overwhelmed at this diagnosis. Not, only because we know virtually nothing about Epilepsy, but because we now have a second child who is medically fragile. Life is unfair and I just don’t get it. Yes, I realize there are much worse things that could be happening to us. Please don’t point that out.
To top all this off I have a newborn to care for. It feels unfair to her that time we should be bonding with her is overshadowed by Little Brother’s diagnosis. But, she is doing great. She was 6lbs 13oz and 18 inches long. Smallest of my babies! She looks just like Little Brother, except for the nose – she has Phoenix’s nose.
Luke and I have not had a normal birth experience with any of our children, and that has us confused and angry and hurt. When Phoenix was born we found out she had Apert syndrome. When Little Brother was born it had only been 7 weeks since Phoenix had passed. And, when Little Sister was born Little Brother was diagnosed with Epilepsy one week later.
Not only are we trying to recover from this emotionally, we are trying to recover physically. Luke held Wesley for nearly he entire hospital stay and it took a toll on his body. I am trying to recover from my c-section. We are extremely grateful for our family who has been taking care of the four us. Without them the last 2 weeks would of been impossible. We are also thankful to our church family who has supported us through prayer and meals.
I want to add that we are dealing with the hospital and the doctors lack of response to what was going on with Little Brother.