Update on Arwen's Spina Bifida Journey And how you can help

As most of you know Arwen had Botox surgery last month to help tighten her bladder neck that would allow her to get off her bladder medication that was causing a lot of concerning systemic side effects. It has now been a week since she weaned completely off the medication and she has had only one incident that has been concerning so we are praying the Botox continues to be something that helps. Our goal is to have her do the Botox injections once or twice a year for a couple years until she is old enough to help make life changing decisions for her bowel and bladder maintainance care. She will have a urodynamics test for the pressures in her bladder next month in St. Louis so we will know more then if the Botox is doing its full job.
Arwen continues to struggle with ongoing headaches and leg pain. The doctors do not believe they are related to one another and imaging has come back unchanged so it has been difficult to figure out. Her neurosurgeon has suggested she have an ICP monitor into her head to measure the pressures to determine if the cf flow is too much or to little. We are praying she has a headache during the monitoring process so they can better access her headaches. She will be in the hospital for that at the end of May here in town for 1-2 days. She will also see neurology next month for headache clinic to see if they have a better assessment that may or may not be related to her spina bifida. If all else fails they may need to do exploratory surgery since sometimes testing does not always give a clear picture to what's really going on. We pray that it doesn't come to that since there's a lot of risk that comes along with that kind of surgery and no gaurantee it will even help.

As far as her leg pain we have started going to a new physical therapist who wants her to not use any type of bracing to help strengthen weak muscles in her calves. So far it has helped a little with firing up those weak muscles but has caused more intense pain and fatigue in her stronger leg muscles. We will look into new bracing soon if it continues to interfere with her daily functionality. 

  She has a lot going on here in the near future so please for pray for clear answers, her health, and for us as a family as we have to juggle the kids around, and Richard has to miss a lot of work that is unpaid. We know the Lord has it all in his hand and we continue to be taken  care of spiritually and financially through many of you and we are so very greatful.
If you would like to donate directly to her medical funds that help cover her bills,Richards time off work, and travel expenses you can below by clicking on the PayPal link below