Update on Arwen's health as of late

Well little miss has been up to a lot lately. First, she has been going to a new physical therapist for a few months that suggested that she quit using her braces all together so that she can strengthen and fire her weakest muscles and hope to help her leg pain. The first month or so I thought the therapist was nuts and thought her pain, gait, and endurance was worse..now we have seen that she has almost no leg pain and her endurance has increased by leaps and bounds. unfortunately like anything with spina bifida, we have seen that her gait and internal rotation has gotten significantly worse. Her therapist still wants us to give it some more time hoping she will be strong enough to correct those things. I am thankful she enjoys therapy and has benefited so much from it.
As most of you know Arwen had Botox injections put into her bladder to help get off her bladder medication that was causing bad systemic reactions. Ideally, the injection alone should have last 6-12 months but they lasted less than 3. We have had a very difficult time getting a resolution so she has to go back for more testing in a few weeks to determine if she needs more botox, add medication other than her original one or have to go ahead and look into the bigger surgeries for her bladder and bowels that we were hoping to hold off on for a couple years. She has been having a lot of pain and leaking which makes for a lot of stress for Arwen so I am praying there is a good solution for her continence.
Arwen has been struggling with headaches for over a year now that seem to be only severe from January - may and taper off to only periodically the rest of the year. We have tried some home remedies, seen neurology and had imaging come back unchanged. So neurosurgery suggested she have an intercranial pressure monitor put in to see if her pressures were the issue since imaging can't show that. It was more intense than I imagined but she was a trooper and did so good. We were told she wouldn't need her head shaved or staples but they shaved the front of all places and gave her 3 staples without any warning. Poor girl was very tough and thankfully her pressures were all normal. We're still in the dark on how to proceed but with spina bifida it could always be shunt, Arnold chiari, or tethered cord causing an issue..and they can all sometimes mimic one another or be totally unrelated. It's quite a guessing game and unfortunately neuro always says we could do exploratory surgery and we never never want that to happen so for now we will be thankful her headaches have lessened for now and continue treating naturally as needed.
We appreciate your love, prayers and support for Arwen and our family as it is an ongoing and never ending health battle. Despite how grim it seems at times we know Christ is always at work for her good and our good and all for His glory.

**If you would like to donate to Arwen's medical funds you can do so by clicking the link Tuttle Tots: Arwen's Medical Funds

http://tinktut-kids.blogspot.com/p/blog-page_17.html?m=1