Home with Hope

We made it home last night from Wisconsin. Ayden is not cleared for school until Monday, but fortunately for him he has two weeks until Deb and Vic pull into our driveway again. It allows us to keep a close eye on him over the next two weeks to see if this change works.
On Wednesday, the surgeon went in prepared to replace the whole shunt if needed, but there were no obvious defects or issues so his valve was changed from standard med flow(1.5) to a programmable valve. His valve is set at .5 now so there is more fluid being drained our hope is that this will help. It is a bit of a guess and check system so time will tell. If you asked me right now if I feel like it is working, I would say absolutely. However, there is risk of overdraining so we are keeping a watchful eye for headaches and other signals as time passes. This morning I have watched him wake up happy, WALK everywhere this morning - No Scooting!! He has yet to come and sit on the couch, this for me is HUGE! I will feel better after we watch this continue for the next week or so. I am reserved in my opinion as I know Ayden always has what we call a placebo effect post hospital visits. He is always happy and relieved to be home, not that we can blame him. Our next visit is a follow-up on Jan.6, if needed. At that visit the shunt could be adjusted again if we feel we are not at the right place, but we can also postpone it if we feel like it worked(fingers crossed). Time will tell, and I hope this is the answer we needed.
I hope that we can relax and enjoy the holidays. It is amazing what a trip to Ronald McDonald House and a large children's hospital in December can do for your heart. We are so thankful that we are home with a healthy kiddo. The RMH house was amazing, this is the first time we have stayed in Milwaukee at RMH and we are hoping it was our last. I cannot say enough about how amazing RMH charities are for families, if you ever have the chance to support them in any way, please do.
I am hoping this is our last post for awhile. We didn't do Christmas cards this year, I have yet to get the kids' gifts for teachers, aides, and bus drivers, and I am just going to have to plan to mail gifts to my colleagues. I really thought I would get it done before we left on Tuesday, but we ran out of time. There are half made buckeyes and oreo truffles, sugar cookies uniced...I just had to admit defeat, and stop.
This trip was different, we were rolling the dice, and taking risks. I was honestly so afraid of being wrong and having something go wrong. We are home for the holidays, and that is what matters. To all of the friends we have forgotten, lost, or just plain ignored please know you are not far from our hearts and minds. You are never taken for granted, even if you feel that way at times. Thank you for the continued prayers and support. We pray this works and we see more of what I see today from Bubba everyday.  Merry Christmas!

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.