Friday, May 16, 2008

Scheduled Chaos

This week we have been doing much better at getting into a rythym and schedule. Our sleep schedule seems to be at a sustainable level and we are both able to care for James and spend some time with Abby. Grandma has been a big part of this and the question is can we do it without extra help next week.

Abby is teething her center top teeth. She already has the next set of upper teeth and center bottom teeth. It hasn't been as bad at night as in the past, but she has been more cranky overall.

James is gaining weight. How much exactly is tough to tell. We are confident that is at least 6lbs 13 oz and possibly 7lbs now. His feeding was outstanding at the beginning of the week, but has struggled the last few days. This is partly due to the fact that we tried Tylenol with Codine, which knocked him out too well. This made him too lethargic to keep up his appetite. We will either try a half dose or save it when he is in more pain. Maybe we can just drug our kids at night to get our rest!

Little Dude continues to heal, but also continues to have new blisters. There have been a few that have appeared on newly healed skin on his legs which is always dissapointing. We continue to try new methods to heal and prevent blisters. We still hope that we can get the healing to outpace the damage of skin. Time will tell on this.

Other than a hoarse voice, his insides seem to be stable. No gagging episodes since we went to the hospital and breathing seems ok. Sometimes there is gunk in or behind his nose that can affect eating.

His stools might be getting firmer. This is nice because instead of many runny diapers we hope to keep it to just one or two a day. We have doubled the does of Imodium AD and the Codine may have helped this also. We have stopped the breast milk as the pumping is done. We do have a few days supply in the freezer in case we need to loosen things up.

We urge you to read an article by cutting and pasting the address below: (can't get the link feature to work)

This article may help explain the hope of miraculous healing that we have for James. What it doesn't mention is that parents in situations like these have other options. Ones that we honestly never for a moment considered. We could have finished the gentetic testing and determined that James had EB before birth. We shudder at the thought of the options that follow. Either playing with lives by deciding which embryo's get chosen or even worse killing a life in the womb. Unfortunately this does often happen and with children that have non-fatal diseases or even none at all.

Also understand that even without a miracle, we have a hope that drives us everyday. That if James passes on before us, he will have full healing and total comfort in Heaven with Tony. The fact that James is now comforted and cared for by the same Loving God as us gives us comfort everyday.

Please pray that his wounds would heal at a faster rate than his skin is damaged, that we would find a schedule and pattern of life that would work long term and for miraculous healing for James.

Stu, Tashia, Chompers and Larger Dude

1 comment:

Missy said...

Thanks for sharing that link and for your great encouragement. Your faith and strength through this time is an inspiration. I know you probably don't feel that way sometimes but you have touched our family and I know so many others. We love you guys!