Madison.

As we are getting closer and closer to going home I can really start to appreciate all that the hospital in Madison has done for us. I hate to keep on comparing our experiences between Milwaukee and Madison, because there were a lot of things I liked about Milwaukee and that I miss. We have had great nurses here in Madison, we had many many great nurses in Milwaukee too. So many of them invested so much time with us and really wanted us to succeed. I wish we could have collaborated Milwaukee nurses and Madison nurses, we would never leave the hospital. Our physical therapist in Milwaukee.... She knows her stuff! She is amazing! I've still consulted with her about sol because she knows so much and she did amazing work with Lua, I couldn't thank her enough for all she's done. Our rehab doctor in Milwaukee.... I dont even know where to start. I've never met a more amazing person in my life. She loves these kids and she makes sure they have the best life possible. I really hope Sol can meet her someday, I wish I had another word for amazing, but i can't think of anything better than the fact that she is amazing, and so kind, truly a heart of gold! She was with us from almost the start with Lua and we knew she had our back on all the decisions we were making and helped guide us into making the best decisions for Lua when it came down to casting or not casting. I recently met the rehab doctor here in Madison, and I think they do good here but I can tell their specialty is more in cerebral palsy, where Milwaukee has a lot of experience with arthrogryposis. In fact I asked how often they worked with AMC here in Madison she said not very often.
So as you can see each place has it's specialty and what they excel at. For us, what it really comes down to is pulmonary. Milwaukee shouldn't even feel bad, and knowing the pulmonary doctors there; I know they don't feel bad, but they shouldn't because our pulmonary doctor has spent years dedicating her life to babies/kids like ours. Although our kiddos are new to her, she knows the protocol on how to give them the best care. Actually she literally wrote the protocol. I'm not even kidding, you can look it up, she wrote a detailed explanation on the best treatment for kids that have neuromuscular diseases. Her goal for kids like ours is to give them more time. Doctors in Milwaukee, and I can say this with certainty im not being mean but it is their protocol, their goal is to help the kids be as comfortable as possible until they pass. This part im unsure about, I dont know the reason behind why they choose this if it is because the kiddos are too much work, they don't think their life is worth living in such conditions, or/and if they are just stuck to the old ways of doing things for kids like these. I dont mean to disrespect any doctor in Milwaukee, but I feel like it is something a parent should know if they have a kid with a similar situation and the parent wants as many years possible from them, they shouldn't choose Milwaukee until they decide to catch up to what Dr. Schroth is doing.

As we prepare for home, we are literally preparing from home. They have us training like beasts here, setting up scenarios that we may encounter at home because they want us to succeed! They don't want to see us have to come back, unless a sickness of course, but they want what is best for Sol. We are doing 24 hour cares with him, Milwaukee only required like 8, we need to take him out on a walk daily, eventually we will need to go on car rides with him, I mean we are basically acting out how home will be every day. If we wouldn't have already lived it, I would feel very confident going home. Which is why I give this ode to Madison. Why I thank them for giving us the tools and information and skills that we need in such depth. No, not everything has gone perfectly here, there are still things I dislike and get frustrated with, but thanks to Milwaukee I've learned I simply need to speak up and fight for what I want or when I want to be heard a little more. I dont know what Sols future looks like, what it will hold. I worry some days about that, I worry it will end the same way Luas did, we still are not sure if this is a progressive disease or not. But I do know we have literally done all we can for him, I know Madison has been a game changer for us, I can see it in Sol and how well he is doing. We have learned a lot more this time around, I wish we could have done the same for Lua, but as our one nurse told us recently, this is now about sol and moving forward. That is what we will try to continue to do and work on,
move forward.