Hi, I’m Shelley. This is the story of our son Henry and our journey towards providing him a 100% homemade blended formula.
Henry was born on February 27th, 2010 and is our first baby. Shawn (my hubby) and I have always wanted children and were thrilled to learn we were pregnant. I was nervous the whole way along, but was so excited as the BIG day approached. We were very lucky to be able to take some time off before Henry was born and so felt refreshed and reconnected.
He’s a great little guy (I know, all mom’s say that!). He has blossomed into a social little boy who loves music, banging on just about anything and chasing after our cat Missy.
Henry was born with severe hypotonia – or low muscle tone – due to a congenital myopathy. Basically that’s a fancy way of saying that his muscles don’t work quite the same way as most people’s do We still don’t know exactly what he has – and we may never – but that doesn’t really matter anymore. What does matter is that Henry is doing great!
He’s a fun, social little guy, who is now crawling like a pro and has just starting walking! This was a HUGE milestone for us and one that we all worked really hard for.
Henry eats almost exclusively through his g-tube, which was inserted in February 2011. Previous to that he had an ng-tube, since about 8 weeks old. We are hopeful that he will eat orally in the future, but for now we are thankful for his tube. When Henry was younger, he wasn’t able to swallow well enough to eat safely. While there were no signs of aspiration, there was significant pooling at the back of his mouth. Essentially, he couldn’t swallow strongly enough to get everything “down”, so liquid remained in this mouth. Then when he would take his next breath, the liquid was still there and could be breathed into his lungs. As a result, he coughed, choked and vomited.
We have continued to offer foods orally, despite all this (and thankfully there are no signs of lung infections, or other signs of aspiration). We want him to have the connection between eating orally and feeling full. When he was younger, we kept trying breastfeeding. When he finally refused completely, we moved to sucking on our finger while being fed, then sitting in his tumble form seating (and now his custom supportive seating) and eating at the table.
His swallow has improved greatly – and he is showing some desire for eating orally – but continues to receive all his nutrition through his tube. We still have a long road ahead of us, but we’re determined not to give up!