oh clinic :)

wow wednesday was a crazy whirlwind of emotions, info, and new changes. I tried taking notes and then had to stop because we literally had like 8 or 9 docs in all at once trying to talk and suggest new things. I was completely overwhelmed to say the least. Arwen did pretty good for being there 4 1/2 +.

PT/ hanger plans-
I didn't get to talk to hanger too much about deroation strap issues. but we are going to try the carbon fiber AFO dynamics to help with her planter flexsion since she is not able to do it on her own. (she cannot point her toes down or put her foot in neutral position to walk. she walks on heels)
And so now she will have derotation straps most likely that velcro to bottom of her SMO's (braces), then the AFO dynamic will go in her new hatchback (special shoes made for braces) under braces. Ha so lots of changes with all of that.
She will also be getting some extra PT (physical therapy) at children's, start aquatic therapy, and get a walker evaluation.
OT plans-
she will now start getting OT (occupational therapy) at children's to get learning how to eat different textured foods and mainly work on getting her to take more liquids a day. since done bf she will only use 1 cup with a bottle lid that is the same texture/material as her binky. She should be taking 29 oz min a day (16 of milk and rest water) but she only takes about 14-20 a day. and that is just milk. she refuses refuses water and juice. so we are now adding water to milk. we have tried everything possible to get her to drink more but nothing works on a consistent basis. So if she doesn't start drinking more through ot we have to look into her having a feeding tube. which is not what we want at all. so please be praying she will conqure this drinking water and milk thing.
Bowels-

Well since birth we have always known she will never be able to control her bowels so it's been a constant battle. But now she is always constipated since she only drinks milk and doesn't eat enough fiber. So we are now on benefiber, miralax, probiotic, and high fiber food as much as we can. But unfortunately the miralax is just making her have diarrhea and not able to be clean. So now trying to figure that all out. It's hard trying to find a happy medium.

Bladder-

Arwen has had 3 UTI's since December and was put on a suppression antibiotic (low dose daily). I thought it was just until clinic this month so we can figure out when she needed to start being cathed or if it was tethered cord causing it. The doc didn't really answer my questions about not having her on an antibiotic forever and just told me to ditropan (helps the bladder muscle relax since she has a spasmatic bladder that doesn't release it all at once) so I have a call into our regular urologist to see if we can get her off antibiotics and see if just the ditropan will help fix the problem or if she needs to be cathed as well. I would rather do it sooner than later just because it looks like she doesn't have any feeling in her girl parts to be able to potty train later. But they're hoping maybe the ditropan will help resolves some of the issues.

Well that's a lot to take in....but there's a look at our new changes lol. we apreciate your prayers and love.