Headed in the Right Direction

Ayden had a chance to see his Parkview PT over Thanksgiving break. She noted his loss of gross motor

function and fatigue since July, her opinion and report are important as we work for a solution. Our neurosurgeon made time for us on Thursday morning. He wanted to talk with us and see Ayden in clinic. Bub and I headed to Wisconsin Wed. night and talked with Dr. Lew on Thursday. He said the imaging is not showing an obvious problem with the pressure/shunt flow. However, the problems he has had, gross motor loss and fatigue have been constant since July. Both his pediatrician and his neurologist have done their jobs, eliminating the possibility of other causes. His neurosurgeon has ordered another thyroid test to be sure we have ruled out everything. We will schedule a date to "explore" the shunt soon. He said he will start by checking the current shunt function, then we may look at replacing his anti-siphon valve, and adding a programmable component to help find the right balance of pressure without future invasive procedures. The surgery itself will depend on what they find so it is a bit unknown, but without any complications we should expect to go home the day after surgery. He said we have done what we needed to do, and exhausted all of our other options. We have the choice to accept that this is the new "normal", or do the exploration surgery. The explorative surgery has minimal risks compared to his previous surgeries and may show us a problem that just cannot be found with MRIs and CTs. I cannot as his mom except that this decline is ok. Yes, he has CP and his brain has been through significant trauma over the years, but we will always push for his best chance at success. The dilation episodes are not seizures, and Dr. Lew does not think they are related to a hydro issue, unless they are caused by the fatigue. He said they may just be one of the neurological issues  that we cannot explain. Ayden is ok, he is unsteady and tired more, but this is nothing different from what he has been for months. If we would notice signs of a shunt failure, we would of course take action quickly. We will continue to pray that nothing gets worse, but this is just a problem that we would rather take care than accept as the new normal. We want him to be safe and continue to learn, not fall backwards. We feel confident in the plan and hope to have a date soon.

On a positive note, we made it back in time Thursday for his annual Christmas Program at school. It was great! It is a lot of work for all of the teachers, aides, and some of their family members too, but truly a blessing. This is the picture I chose to post because this is our focus right now. We will celebrate the holidays as a family and wait to hear what is next. 

Thank you to everyone that includes Bub in your prayers. He is amazing, and blesses us each day by the grace of God.