Kennedy Update
As most of you all know, we were in Cincinnati two weeks ago for Spina Bifida clinic, some Urology testing, and for a consultation with a plastic surgeon. Kennedy will be having surgery the end of September (I was told the 25th, but that could change) and the plastic surgeon will be cleaning up her fetal surgery repair site.
During clinic the Physical Therapist Doctor said she wants Kennedy to have another Manual Muscle Test done before surgery. This will be done to get a baseline on her mobility before surgery. It's an important step to making sure the cyst removal has given her back whatever mobility has been lost due to their presence. As of right now we have that scheduled for the 18th of September. However that could change.
Last week I received a call from the Urology Department regarding the results of Kennedy's urodynamics test and her renal ultrasound. Unfortunately Kennedy is no longer completely voiding her bladder and is being put on a schedule where we have to catheterize after so many hours each day. One of her bladder walls has become thick, so they will also be placing her on a medication to help the wall relax. I asked the Fellow if this could have anything to do with her cysts. She agreed that the cysts growth could be pressing on the nerves that control bladder function. For now we are waiting on Urology to call us back to schedule a time for both Jonathon and I to go up to Cincinnati for a cathing class. Her renal ultrasound also found that she has a sediment build up in her bladder as well.
On a personal note, I just have to say how thankful I am that we were sent to Cincinnati Children's 2 years ago. For the most part, the staff and Doctor's I have had the pleasure of working with have always been nothing short of understanding and gracious. Especially at those moments when something hits me and I have a complete breakdown. It's been so hard watching Kennedy slowly lose mobility in her right leg. When I got the call last week from Urology, it was hard to hear that after 21 months we would be joining the daily cathing club. Not that it's a bad thing to cath, I know many children who live completely independent lives who are on a cathing schedule. In my eyes it was just another battle we'd been fighting that was lost. However, I do have hope that after surgery we might not have to cath anymore. Either way I know this is all part of God's plan and he has knows what I don't. I simply ask for continued prayers for Kennedy and our family as we head into this updated venture of her life.
During clinic the Physical Therapist Doctor said she wants Kennedy to have another Manual Muscle Test done before surgery. This will be done to get a baseline on her mobility before surgery. It's an important step to making sure the cyst removal has given her back whatever mobility has been lost due to their presence. As of right now we have that scheduled for the 18th of September. However that could change.
Last week I received a call from the Urology Department regarding the results of Kennedy's urodynamics test and her renal ultrasound. Unfortunately Kennedy is no longer completely voiding her bladder and is being put on a schedule where we have to catheterize after so many hours each day. One of her bladder walls has become thick, so they will also be placing her on a medication to help the wall relax. I asked the Fellow if this could have anything to do with her cysts. She agreed that the cysts growth could be pressing on the nerves that control bladder function. For now we are waiting on Urology to call us back to schedule a time for both Jonathon and I to go up to Cincinnati for a cathing class. Her renal ultrasound also found that she has a sediment build up in her bladder as well.
On a personal note, I just have to say how thankful I am that we were sent to Cincinnati Children's 2 years ago. For the most part, the staff and Doctor's I have had the pleasure of working with have always been nothing short of understanding and gracious. Especially at those moments when something hits me and I have a complete breakdown. It's been so hard watching Kennedy slowly lose mobility in her right leg. When I got the call last week from Urology, it was hard to hear that after 21 months we would be joining the daily cathing club. Not that it's a bad thing to cath, I know many children who live completely independent lives who are on a cathing schedule. In my eyes it was just another battle we'd been fighting that was lost. However, I do have hope that after surgery we might not have to cath anymore. Either way I know this is all part of God's plan and he has knows what I don't. I simply ask for continued prayers for Kennedy and our family as we head into this updated venture of her life.
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