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!