Yesterday Madi had a urology appointment with Dr. Zuniga at Phoenix Children's Hospital. She had her 6 month urodinamics test, which looks at how much liquid her bladder can hold, as well as how it functions under high pressure. He was happy at how she functioned under high pressure and said that it indicates her bladder is not rigid, but has some flexibility. This is a good thing because she has renal reflux and a rigid bladder will push the urine back up the ureters instead of emptying. Hers, however, empties, which is great! Her bladder still does not hold as much as it should, though it did grow, which is good. He thinks we may see good long-term benefits from using dithropan. We are going to start her out very, very slow and see how she reacts to it. He said that dithropan is most important when they are little, though, because it helps increase the bladder size and will help it to grow normally. I talked to the naturopathic doctor and, unfortunately, there is no natural replacement for it, so we are not left with too many options. The reason to give it, though, is that if we can get the bladder to grow normally, she may be able to avoid a bladder surgery in the future, and of course, any surgery you can avoid is HUGE. Also, once you perform those surgeries, you are cathing for life. She may have to cath for life anyway, but at least we have a chance of changing that right now.
Madi did a great job during the test. I stay and talk/sing/play with her during it, which helps. They turned on Finding Nemo for her, and she was fascinated by the fish. I also brought a little bit of "baby bribery", aka organic chocolate chips. She LOVES chocloate and it really helped keep her happy and in one spot. Overall, it was a good appointment!
(Ceretta's Mint Chocolate Face)
Hello Jamie,
ReplyDeleteThank you so much for stopping by the Team Ewan site and telling me about your and Miss Madi's story. It's been so encouraging for us to meet other parents who have faced unexpected diagnoses with their children. I was particularly encouraged to hear that you had the desire for the same kind of birth we do, and that it was possible for you. I'm very hopeful that with our midwives still being a part of our support team, and with the amazing doula we have (as well as an OB who is pro-midwife and uses minimally invasive practices) that we can still have the kind of birth we want even though it is in a hospital.
Another blogging friend of mine has a four-year-old daughter with spina bifida and it's been amazing to follow their journey as well. Their daughter is so feisty and full of life and abides all these therapies and treatments like I can't believe. Her blog is hennhouse.blogspot.com if you want to take a look.
Thanks again for stopping by and leaving the note that you did. I look forward to following Miss Madi's journey!!