Consult with clinic

I talked to the Nurse Practitioner who is overseeing Ada's case at the University Hospital. Of course they are not happy to hear that she is swollen.

After trying to assess her over the phone (which is difficult to do) I was told that I could bring her down for an appointment to be seen, or I could continue to monitor the symptoms and keep in contact with the clinic. Since all they could really do at this point is take a urine sample, blood pressure, and look her over, I have decided to just monitor her here.

Ada is at the full dose of medication and we just need to give her body time to respond. In the past she has responded in about a weeks time. So hopefully she will respond again quickly, which should be by this weekend. But it can take longer, so we will just wait and see and keep an eye out for any dangerous sypmtoms (peritonitis or dermititis).

In the mean time the best thing we can do for her is keep her sodium as low as possible to control the swelling, and limit fluid intake. I worry about limiting fluid intake, but thankfully Dad just installed a swamp cooler, so that should keep her cool, and I have fruits like grapes and apples that can help quench her thirst.

She is still a pretty happy girl, but is lethargic for her and tends to spend a lot of time laying down now. She frequently asks to have her back rubbed and says it makes her stomach feel better. So reading books is a good activity for us, and I don't mind. Neither do the other kids. We are going through several books she wouldn't sit still for before, and many of their favorites. What better activity on a hot afternoon when it is too hot to go out and play anyway.

So that's pretty much where we are at. Wait and watch; pray that she will respond to the medication (the NP says they have some other tricks up their sleeves in case she becomes steroid dependent or non-responsive to the medication.)

Thanks so much for your prayers and caring about us. I will continue to post as we monitor her progress. Hopefully the protein leakage will stop as quickly as it started.

Our love to all,
Ada & family.