Update on Ada

All the posts I have made on this blog so far have been about what has happened, and a lot of people are asking "How is she doing NOW". I got an e-mail asking about ada and decided to just post the reply straight to the blog. Here it is:

Hi there, (got an e-mail from Dad's sister-in-law and thought I would send an update out to all since the blog is a little delayed)

Ada is stable (I guess that's the best word for it - she isn't in any danger at this point, but she isn't doing better either, and it may be a while). The swelling is still increasing. She has to work to keep her eyes open. (I'll be placing some pictures on the blog http://www.adaneph.blogspot.com/)

We have her sodium limited to 300 mg a day, which is taking some work. They have said that if she keeps swelling we will have to limit her water intake to under 24 oz a day, but I don't think she is drinking that much now.

If you didn't know her you would just think she was an obese child who is very active (she was out riding her bike yesterday). She has no activity limitations and is actually encouraged to do anything she would normally do. Toward evening she walks like she has been on a horse way too long, and she has "auntie ankles" which get uncomfortable at night. I think the hyperactive part of the prednisone is kicking in, like she needed that :-) And she is getting the prednisone appetite so she is constantly hungry. Time to get more fruits and veggies in the house.

I guess the swelling isn't a concern unless it starts putting pressure on her lungs or other vital organs (which would be indicated by pain beyond discomfort). Also, anytime you have fluid pooling in the body there is increased risk of infection (which would be indicated by a fever). So at this point we are good there.

So I guess we have done the "hurry up", and now we will do the "wait" for the protiens and swelling to start going down. Ada is in really good spirits and taking this all in stride. She is a pro at downing the prednisone (4 1/2 pills once a day), doing a urine sample, and reporting her food and water intake. She also is pretty good at understanding which foods she can and can't eat right now, and is good about asking. If she wants something she can't have then we start looking for something she can that is appealing to her. I made her a special batch of rolls that are really low sodium and she loves snacking on those. She is a big bread person and it was killing her to not be able to have any bread.

As for the rest of us - other than being tired, even with plenty of sleep, I am doing well. Mostly I am just busy enough that I don't notice the pregnancy, especially since I'm not awkward yet. We are hoping to know the results of Dad's sleep apnea test by the end of this week and can get him on the Cpap. The other kids are doing well, although little brother and sister had been acting out with the attention focussed so much on Ada. But we have made an effort to direct more attention their way and they seem to be doing better. So at this point we are just getting back on a normal schedule/routine, and monitoring Ada.

Hope you are well, glad spring is peaking it's head out.

Love.