Take that SB Clinic :)

Clinic days are always a day that I usually dread and love all at the same time. I enjoy being able to see all of her doctors in one day, but I feel like they never read her charts before walking in nor do they ever really consult with their immediate staff or other clinic doctors beforehand. So, what that said I always try to go into clinic with all my questions, concerns, research ready to go so that I feel lie I am trying to understand Arwen's life with Spina Bifida as best as I can with all the doctors we see in one day.
Orthopedic Surgery-
I really do not care for this doctor and think he needs to learn some manners when it comes to talking to parents and should try to work with the therapists a little more without a know it all attitude. But I do appreciate that he doesn't try to push surgery when it is not needed. Our concern going into clinic with him was wondering if he wanted to do anything about Arwen's right tibial rotation...but as of now he agrees she is doing awesome and we shouldn't do anything about it as of now.
Physical Therapy-
Can I tell you they were all so super duper impressed with how she went from using her walker full time last clinic to running with nothing down the hallways? We can only give God the glory for that! She does still need walker for long long distances and bracing for support but she has progressed by leaps and bounds with her walking independently and we are so very proud of her!
We really didn't have anything new to talk with her about since Arwen has in home pt 2x week, but she did take the time to exam Arwen and explain her high and low points which was very helpful. We appreciated that she took the time to listen to our concerns, give her advice and encourage us. It was super interesting to hear about the different nerves that are connected to other areas like her bowel/bladder and helped make sense why she has some feeling on different portions of her legs but not others. She also agreed with the other therapists and doctors that she would benefit from suresteps for her ankles and afo carbon fiber to help her not crouch her knees as much when she stands and walks. Overall she thinks Arwen is on the right track and doing awesome :) We will continue pt pool once a week and in home pt 2x week

Rehab-
Rehab is one of those clinic docs I just don't always get what they're main goal is with Arwen. They seem to be involved in everything from neuro, bladder, bowels, feet, ect. We started with a doc who was just fresh out of school it seemed like and really didn't have much insight. He mainly just sat there and asked weird questions lol. WARNING tmi ahead lol.  Our main concern with rehab going in was trying to figure out to help Arwen stay cleaned out longer. We currently use a cone enema every other day and high fiber regiment for her bowel program and they both seem to work great but with her age and our schedule it is not possible to do the cone every day. It takes over an hour each time and she isn't the best at cooperating during that time. Which I mean I wouldn't either lol. The nurse wants us to put her on the toilet to do it all but after trying today we don't see that being any easier or being a one person job. So we are just trying to figure out a few options to see what is  best and are hopeful we can get it under control without having to discuss surgery for it anytime soon. Overall they think her bowel regiment is going better than before so we are on the right track as of now.
Urology-
We were first greeted by another just out of school doc who had her old charts, didn't have her current urodynamics study, and didn't consult with her main doctor before coming in. Thankfully her regular doc came in shortly after to help go over the urodynamics and to give his advice on her bladder regiment. He did confirm the pressures in her bladder were normal and she was holding a good amount praise the Lord, but he was still concerned that her bladder wasn't as stretchy as he had hoped it would be. I am still learning about what that exactly means, but overall she is on the right track. From about Nov-March she was having non stop UTI's, couldn't figure out cathing on a regular basis with much luck since she was breaking out from everything we were trying, and had a hard time getting the neosporin irrigation to go in correctly. But after switching to a sterile close cathed kit and changed syringes for neosporin we seem to be on a good regiment. There are times like today where she has a lot of pressure build up and we can't seem to get a good cath, but we are praying it is not another infection. She will have to go back for another renal (kidney) ultrasounds in 6 months before clinic.
Another praise the Lord moment: Thankfully since her urodynamics tests came back with good results we do not have to look into the spinal detethering surgery for now.

Nutrition-
I dread seeing nutrition the most because they never seem to be satisfied with Arwen's drinking, eating, or weight. But we are happy to report that overall they think she is on the right track as well and seems to be doing well on our current food plan. They would like to see her eating a bit more variety of foods and maybe try to get off so much cheese (haha she really eats like a block of cheese combined most days) since she is having some gas build up issues. But hey cheese is basically the only thing she likes to eat on a regular basis so for now we are going to have to keep trying some colic calm and gas drops :)
She has grown like 5 inches in less than a year which is amazing but her weight is still on lower end..but we are slowly creeping up the charts. At least this time there was no talk of an ng or g tube.
Occupational Therapy-
Arwen did vital stim for reverse swallow and tongue problems for about 5 weeks and the clinic ot agrees that it helped quite a bit. She doesn't want Arwen to lose any of those new found skills so we will be seeing ot for the next month or so once a week at south to keep her from losing them. We are also hoping that the in home speech therapist can help work with her tongue problems which will help her speech and oral motor delays.She def has no problems talking a million miles a min lol but she struggles with beginning and ends of words because her tongue doesn't move properly.
    We didn't end up talking to Neurosurgery at clinic because she hasn't had as many headaches, her urodynamics came back with good results, and we will see her regular Neuro in June for a follow up.

I just want to thank you all again for your prayers, love, and support of Arwen. We appreciate you following her on this spina bifida journey and encouraging her along the way. She is a true joy to have in our family and we are blessed with an amazing God who loves her more than I ever could and wants the best for her even when we don't always see His plan right away.