This is more of an update for family and friends and I will try to keep updating as needed.
First off it was decided in September by Brandon and myself that we would take Lizy to a urologist. She had already had two febrile UTIs in the past couple months with her fever up to 104. The pain she would go through was unbearable to watch, I cannot imagine how she was actually feeling. These were not the first two, however every time a UTI would present itself it would be worse than the last. With my history of kidney and bladder issues at the same age we at least wanted her checked out.
After her tests were ran it was discovered she does in fact have bilateral renal reflux(VUR). With a few different options we chose the surgical route for Lizy. This past Monday she had bilateral ureteral reimplantation as well as a cystoscopy. Her urologist wasn't happy with the flow so he put a stent in each ureter which is now causing her so much pain. It has been so hard watching Lizy recover but I do believe we made the correct decision especially since the stents were needed. She has an incision similar to a cesarean and is having a hard time with that as well. It is difficult for an adult to lay around and recover let alone a 6 year old little girl.
The same day we were told Lizy was going to need surgery we were also told Logan could be scheduled for his baclofen pump placement. He had a surgery scheduled this past June however in May he had Pancreatitis and lost too much weight. I had been against this procedure since Logan was three years old and we were told it was a great option for him and his tone.
We have tried Botox which stopped working after three treatments. When it did work the high tone in Logans body, mainly his legs and hands, gave him the ability to move a bit more freely. The past year the tone in his legs has become increasingly high. If you are not around Logan often is difficult to change his diapers, his legs are always scissoring which is abnormal for him. Logan has hip dysplasia as well so before that is corrected, via yet another surgery, his tone needs to be under control. His left hip is completely out and his right hip is working its way there. He has grown so much the past year which is a contributing factor in all of these changes with tone and his hips. The good thing is his hips do not seem to bother him at all.
Logan is going in this Monday, December 14th for his Baclofen pump placement. His neurologist is at Scottish Rite and is amazing however we are closer to Cooks now in Fort Worth and will be using a neurologist there for the surgery. When we met him he took me through some photos of the procedure step by step of a study he recently did to ease my mind. I have faith in him and have heard great things about this neurologist. The pump itself is 3.4 inches in diameter and there will also be a catheter inserted into the spinal fluid. I am absolutely positively terrified of this procedure. No matter how many people tell me it is going to be amazing for him and it will be safe I am scared, there are too many possible complications and side effects for my heart to be at ease.
We are so thankful for family flying down to help take care of the kids and family sending special packages to make the kids smile.
Thank you to our friends for meals and keeping our family fed, although I was very reluctant to accept I cannot tell you how helpful it has been to have a meal already prepared.
All prayers are appreciated for our babies.
Love ~ Amy-Jo
