Little Miss Claire has her own stuff going on too. She is now the proud owner of these stinkin' cute AFOs. Can you tell what the design is? That's right... NEMO, DORY, AND SQUIRT! I so appreciate the care and attention to detail that was given to them, it was definitely worth driving 3 hours each way for.
This test's aim was to observe how much her bladder can hold, the pressure inside as it's filling, and any spasms that occur as it's filling. The procure took about an hour and she had to lay as still as she could in order to get an accurate reading. (Claire ended up watching Netflix on my phone.) The nurse had me insert a special catheter and through that she emptied Claire's bladder. She then set all of the readings to zero and slowly filled up her bladder. The test would be over when she started leaking. I told this nurse that Claire doesn't leak unless she's really full... like if she drank a 250ml sippy cup kinda full!! I don't think she really believed me. Well, Claire never did leak. A 2 year old bladder should hold about 120ml and she stopped filling Claire at 180ml... no leak! I don't think that happens very often because she had to check with the doctor to see if the test need to be redone. It didn't... thank goodness!
The results were this. Claire's bladder actually has low pressure, which was great news. It also stretches easily to accommodate urine which is another good thing. Why doesn't she leak? Probably because it is refluxing into her kidney instead. The urology fellow explained to us that the reflux in itself isn't actually a terrible thing. When it gets infected and refluxes is where we run into trouble, that is why she has the scarring. The plan for now is: keep her medication the same and keep her infection free! He also told us that we needed to be using more laxative because she isn't getting enough and there is a strong correlation between constipation and bladder infections. This was brand new news to us! Never have I heard that before. So we are now trying to get used to that! I'm sure I don't need to spell out what extra laxative equals...
Claire is also going to be getting a toddler wheelchair soon! I know I've told many people this for months now... many are probably thinking " yeah, yeah, soon? You got that news a long time ago and still no chair!" Please understand that "soon" in our world means like within the next 6 months. This stuff takes time. There's paperwork and funding, measurement taking, testing, ordering, then delivery. Each of these steps often occur during separate appointments weeks apart. It's coming... soon!