Ren had a test done on her bladder last week. In early March, at a bi-annual spina bifida clinic, she had a routine ultrasound check on her bladder and kidneys, to make sure her kidneys are okay. Because of her neurogenic (weak/not fully functioning) bladder, there is always the concern that it is not doing its job all of the way and that there may be reflux in the kidneys. Though there was no reflux, there seemed to be some enlarged areas in her bladder. So, they set up this test (VCUG) to check it out a little more. As it turns out, Ren’s bladder is protruding in some places, possibly indicating there is too much pressure in her bladder, and the urologist wants us to start cathing her four times a day, plus take medication. He also wants us to take her to another hospital 2 hours away to get a more thorough urodynamics test done to find out more information. T somehow convinced him to have us hold off with the cathing and meds until she has the urodynamics study, which will be in June. In the meantime she continues to take antibiotics every day to ward off any possible infections. I am a little worried that the inevitable will be that she will have to be catheterized from now on. Not that that is the end of the world – most individuals with spina bifida do need some sort of cathing regimen – but it still makes me a little sad because I thought she would have that one extra little blessing of not having to do it. So, we will know more, though in mid-June.
Also a week ago, Ren turned three! What a great milestone. All of her aunts, uncles, and cousins, plus grandma and grandpa and Aunt Jane, from my side of the family came to celebrate (Ts family lives too far away for a weekend trip!), and it was a perfect day. She had her Dora cake, she loved her presents, we all went outside a flew kites and went for a walk to the park – It was very nice.
Because she is now three, she was able to start school too – three afternoons a week – and has gone twice so far and LOVES it. I’m so happy that she transitioned to it so easily – though I guess I am not surprised given her good natured easy going attitude. She is receiving speech therapy there and as soon as her big leg braces come off (in less than 2 weeks!), she will also receive physical therapy, plus all of the regular classroom activities and interactions that will be so good for her. She still is not talking, though she for the first time spontaneously said, “moo” when she pointed to a cow in a book – All other little words she has said have been due to our prompting. So, a glimpse of hope there….
Please pray for an accurate and relatively good diagnosis from her June urodynamics test. Also pray her legs will quickly adjust and regain strength when she transitions out of her full leg brace (her right leg that was operated on is already very stiff) in a couple of weeks. And as always, please pray for no more seizures, for her speech to improve, and of course no more fractures or surgeries needed for a long, long time!
Here are a few pics: