We celebrated every monthly birthday after we got melaina home. We had spent her first two months in the hospital and every month we had was a blessing. At this point, we still didnt have a diagnosis but we knew it was something associated with muscle weakness.
Finally, a neuromuscular specialist at Children's Hospital saw Melaina and thought she might have Nemaline Rod Myopathy. We had never heard of that disease as it is very rare. As parents, at least now you know what you're up against and it is formidible. Nemaline is often fatal among babies because their weak muscles can cause respiratory issues. We found that out in the hardest of ways.
Soon after my grandmother came to see her only great-grandchild, we made our second extended trip to the hospital. This time to children's. This time with double pneumonia. Even hooked up to tubes and wires my little nine month old kept me smiling.
Melaina had aspirated fluid into her lungs and had to be on a respirator for a few weeks. Doctors told us she might never come off but my little trooper never lost her good nature and she came off the respirator after about 3 weeks. She loved Nell, the hospital therapy dog and we tried to make her room seem like home as much as we could. This time, we spent a total of 6 weeks in the hospital. For the second time in her young life, our prayers were answered and for the second time, we brought Melaina home from the hospital. It was just in time for Halloween and Melaina had her first Thanksgiving at home with her patented everywhere hair.
It was around this time we found out Nemaline Rod Myopathy is one of the diseases under the Muscular Dystrophy umbrella....one of forty diseases researchers are trying to cure.
If you're like me, you knew about the Jerry Lewis Telethon every year but not a whole lot about the diseases. A lot of people think those affected are disabled mentally but that's not the case.
Children like mine are like any other, just with different challenges. Their minds are fully intact.