goodbye August.

We have had some busy weeks lately. After we all beat that stomach bug, summer school started and when it ended it left us with another bug floating around. First May, than of course Sol caught it, then even daddy. I was the last to get it, when I thought I would miss out all together but no luck. It has taken Sol the longest to get over it, a 2 day cold bug for May lasted at least a good week for Sol. But this is progress, his first cold took him a month to beat. His stomach bug took 11 days and a hospitalization. So a week-ish, isn't bad. His main symptoms went away around day 5 or day 6 but he continues to have a large amount of secretions and drool and aspirating all of that daily so I am needing to do coughs with him almost hourly or more. He has recovered though and that is what is important. He was suppose to get his shots a couple weeks ago but we pushed those back like three times so today we finally got to them. He is only months behind on all his shots... what are you going to do though if he is always getting sick, ugh... it is going to be a long winter. I probably shouldn't even say that, I said the same thing in my caringbridge site that I had for Lua when she got her first sickness and she never recovered from it, so yes it was a very long winter. :( I'm hoping for a much better winter this time around, but you never ever know.
Speaking of shots... I have been very lucky to be surrounded with doctors and nurses that are very good at listening to me and my concerns, I mean I've had the normal stuff come up while in the nicu about the feeding and gaining weight issues, but I've learned to pick my battles.... Today reminded me, though, how difficult it can be sometimes to advocate for your child. Every parent has to do it, healthy or not, but it is frustrating. sometimes i wish medical staff could put aside the normal go-to routine of things and just listen to the parent. I had a nurse today that i dont think she knows what a muscle disease is.... she kept talking like she knew everything but she wasn't listening to a word of what I was saying and trying to explain to her... This situation isn't a big deal at all really.. It was just the fact that I was reminded that it is difficult sometimes to advocate for your child. It was suppose to be a really easy, fast, simple appointment, but I will always have to explain how Sol is, always. Some days i'd like to not. Or at least say what needs to be said and the person understand instead of telling me what they do for normal kids. I guess it is hard to understand unless being in the situation, but it just annoyed me today. 

Sol will also start casting for his knees at the end of this month. This is such a bitter sweet situation because I'm very excited to see the results from it, yet at the same time it is going to be a pain and he will be uncomfortable and wont get to do a lot of the things he likes, like bath time and certain positions. But we will just have to push through and hope that at the end of the casting he will have more movement in his legs and once they are straight we can start trying out standers for him to do some weight bearing on those leggies of his. A very bitter sweet situation, I just hope we don't end up regretting doing this, by putting him through this if it doesnt work or if he gets too sick or anything like that. One cast at a time. Maybe he will do some more sleeping to catch up on all the naps he ISNT taking anymore... I wasnt aware 8 month olds stopped taking naps already -_- .

Now the biggest problem I am facing is actually with May and the stupid dentist... I am still surprised that they are so into putting kids under to fix teeth, I can't decide if this is a good thing or a bad thing to do. I can't read if it is my ignorance about the issue, or if it really is unnecessary.. ugh and there really isn't a lot of information on the topic, so much going on! Now school being started and then casting starting, A lot to take in.
Facebok does those memories daily, it is where I get my daily dose of Lua. I use to look at her pictures daily, watch her videos daily, but I find now that it is too hard to do it. I have to go awhile with out looking at them and when I do look at them it is really too difficult... I don't know why that is, I know I am disappointed that we didn't take the same route with her as we took with Sol. I can't even figure out why we couldn't have been directed to go the same route... there just becomes too many questions and I have to stop myself. I wish I could still surround myself with her things and her videos and pictures but if I do sometimes I worry my heart will actually break apart. So I stay distracted, it isn't too hard with everything going on.