Tuesday, October 21, 2008

The Learning Life

"I believe we each live two lives: the one we learn with and the one we live with after that."

So goes a memorable line from an old novel and in retrospect the posts to this blog have been a glimpse into our family's learning lives, which are probably less linear in reality, i.e., we learn for a while, live for a while, learn for a while, etc. We know that you all have learning lives too. So it's worth pausing to thank you for following ours and for your encouragement along the way. We suspected that Henry's story was larger than ourselves and that it might offer others something in the way of encouragement too. We hope it has, even as the story evolved to its inevitable hospital phase.

Entering a children's hospital can be like traveling to outer space; each time the earth disappears behind you and the natural world gets replaced by artificial light, processed air, and the beeping sounds of monitoring equipment. Then the uneasy waiting begins, often interrupted only by periodic emergencies of varying proportion. Still, it hasn't been lost on us that the other families we have seen at the hospital usually have not chosen to be there quite in the same way and often arrive with less advance planning or a lot less information. Many of these families have children who are critically ill. Some have children with terminal illnesses, which is a life lesson we can hardly imagine.

We are extremely fortunate, as we've learned before.

Henry's latest surgery has held. With a successful week behind us, we returned to the hospital Monday where our surgeons put him under anesthesia again and carefully removed the nonabsorbable sutures from his lip area. This will reduce scarring and stripped away some of the blood and mucus that had crusted around the area, and it gave us a better view of how the reconstruction has set so far (before it crusted over again). One nostril is larger than the other and the new lip is not exactly even across the mouth, but the net result looks much better than we had hoped for this stage and appears to be a good base for the surgeons to fine tune later. In other words, he looks great.

Armed with a new hard palate, soft palate, uvula, mouth, nose, and functional interior cavities, Henry now has all the necessary tools for acquiring speech. His implanted ear tubes (one of them replaced Monday) have cleared the backed up fluid that had obviously muffled his hearing. Last Saturday we met with an Early Steps evaluation specialist who will help us schedule his speech and physical therapies. For now, he's good to go.

Except for those nasal stents--which he jettisoned today with a huge sneeze that required another brief visit to the hospital. They will need to stay in for another month. Three cheers for Snuggle Wraps.

Meanwhile, in August we had arranged for the charitable organization Love Without Boundaries (LWB) to help us provide the older children living at Henry's orphanage, the Pingliang Social Welfare Institute in western China's Gansu Province, with new clothing and shoes. These are items that can seem like very personal gifts to an older child with little else, and had been requested as a top priority by the staff there.

With donations received toward this project, LWB last week purchased and delivered to the orphanage 14 winter coats, 45 sets of warm clothes, and 38 pairs of shoes (a mix of leather and sport shoes). It made a difference.

1 comment:

Anonymous said...

Hi Andy and Trish

We were once one of those families with an unanticipated visit to a children's hospital with a not so happy ending. Your description of it as another world is so apt - I remember the sense of unreality the whole time we were there.
I am so happy that Henry is doing so well. He truly has been a cutie every stage of the way, but now we are seeing a glimpse of the handsome young man he will be some day.
Thank you for remembering the older children at his orphanage through Love Without Boundaries. How wonderful that they will have brand new clothes of their own.

Sue Tunstall
Dec 03 DTC group & Mom to Simon, Laura, Mark, Nikki, Lia and Jenn in heaven