Laelia Sky Wesley

Laelia is doing great from her tendon release surgery. She stayed up almost the whole first night doing that little half-cry/fussing thing she does when she’s in pain. She did even better the second night, but was up every hour and a half. Last night she slept with me on the floor in the living room (so Charley could get some sleep) and she did really well. She got three hours in a row from 1am-4am and then she slept from 5am-7am and 8am-10:23am solidly. She will be well prepared for college sleep patterns.

The day after surgery, she had a splint made for her right arm. They didn’t remove the cast on Monday, but instead just bivalved it and taped it in place. That way the cast wouldn’t come off until we had a splint to replace it. I almost wish we could have just had the cast off for a day like we did when the left arm cast fell off. Her poor right wrist and hand were so sore and stiff and we had to bend and stretch her into the splint while she screamed. It’s a hard job to make those tiny little splint parts. They start by cutting pieces of paper towels around her arm so that it won’t hurt her and then they cut the plastic pieces and heat them to conform to her arm. It’s quite a process. Sometimes it takes several “try-ons” and readjustments before the splint is finished and that is what she hates most. Before they could get the splint on, they had me scrub about seven layers of dead skin off of her arm and in between her fingers. And those fingers did not want to move! This whole process happened not even 24 hours from the time of the surgery. Laelia missed a feeding and cried herself to sleep that evening.

The bad thing about this new splint is that you have to hurt her to get it on. Her wrist is bent funny so I have to hold it down to get the thing on. I mean, it’s made that way, that’s not an error. Also her thumb was bent in such a way that after four attempts to make a splint to fit it, the therapist gave up and promised to work on that more next time (on the 28th).

Yesterday she was doing much better. I didn’t do her therapy since she was just miserable the day before. We just relaxed. I even took her to work with me for a Christmas gift exchange. She got passed around and seemed content. She really is such a good baby.  

I was too upset to take a picture of her right hand after the cast came off and now I regret that since it looks so much better than it did. The hand is still awful swollen and there are deep groves where the fingers are bent. I trimmed her nails yesterday and massaged another layer of dead skin off it today and that made a big difference. I also took 45 minutes to stretch those fingers. I will continue to massage it until she can be touched without crying or flinching. Today was the first time I’ve been able to touch her right hand with the splint off without her crying too much.

I’m now getting to the point where I enjoy seeing all her fingers again. Yes, they have a long way to go before they look like typical fingers, but it’s a start. OT now takes twice a long (about 30 minutes if you go slowly) so I’m going to try to get us in a new routine where maybe I can do one half of her upper body and then the other half later.

So many people have told me that it’s amazing what medical technology can do nowadays. It’s true that had she been born even 100 years ago, she would just be crippled with no hope for future independence. Still, hearing about medical science does not comfort me. Not after all the research I’ve done. There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” I think it’s just natural for people to share stories of their cousins or friends who had this or that wrong and got this or that surgery and are now fine again. That’s just not our situation at all. I understand it’s hard to know how to comfort someone. I just wish I could hear more, “That sucks,” and less, “Thank god for medical science.” Can you tell I’m unhappy with medical science at the moment? :-/ I am learning not to put all of my hope in doctors and devices, surgeries and splints—but instead putting more hope in God, positive thinking, my daughter and supportive friends and family.   

This entry was posted on Thursday, December 20th, 2007 at 4:28 pm and is filed under baby, coping, medical science. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.