Frustration and excitment at the same time

Im having one of those frustrated to the point of just wanting to cry kind of days... Its actually been a rough couple days. Aiden has seemed to somehow regress in his head control and that has to be one of the most frustrating feelings. We/he has worked so hard to get to the point where we had decent but by no means perfect head control, which is such a basic thing to most families .. but we are constantly fighting to gain it, and with aidens torticolis it makes it even more important but also hard to obtain. For the last month or so he has seemed to really regress, not holding  his head up and in fact be holding it down on purpose. Ive gone throught the well he was sick, hes trying to get his hands ect and it just hasnt gotten any better regardless what we try... So its like taking god knows how many steps backwards.

To the normal person it dosent seem like such a huge thing ... but you would not believe how much revolves aroung this ...  We just got done at a feeding appointment which was frustrating and exciting all at the same time. They give you the pending loom and doom conversation, but for right now everythings ok and we can start feeding him normal foods pureed!!! But as you get exciting news about being able to progress a little you are also given the speech that as he gets older and his nutricianal needs and his body grows it will just continue to get more unsafe and basically they are preparing us to need to someday go from feeding to tube feeding. Something I want so badly to not have to do because he gets such enjoyment from eating .... But they explain that because he dosent have the head control and his torticolis makes it harder for him to eat normally and his muscles in his mouth are working a lot like his outside body in regards to movement or lack of ...

It just is so frustrating... you work so hard to get to a point in something and usually its celebration that you got to this goal and now you get to move on to a higher goal... you have a sense of accomplishment and it just dosent work like that ... you work so hard and then all work put in dosent make a difference or is lost at a moments notice.... and it effects EVERYTHING.... Uhhhhh pitty party over...

The good news is for now we are able to give him FOOD!! not baby food from a jar but real food :p this has been my goal for so long and for now we have finally reached that point!!! He will still get most of his calories/nutrician from his bottles but i can give him anything as long as it is the consistency that he needs Which is Sooooo very exciting!!! :p

Update 1/16/13

Always behind on my posts but here is our update ;)

Man we have had a busy couple of months again, of course withe the holidays things are always crazy. Aiden had a great 2nd Xmas and new year! Definitely something we never thought we'd get to see once but now twice ;)

The big news if you didn't get a change to see on fb is we finally finally after 10 months and 3 weeks of non stop calls and me having to get angry a couple of times we GOT AIDENS CHAIR!!!! Wahoooo!!! So amazing to be able to take him out and have him be able to be comfortable and be a part of everything happening around him. He really seems to love it and we are slowly starting to get used to it and how it works and getting faster at assembling it. We are however still waiting for aidens stander ... Uhhhh another fight on my hands but until then 1/2 way there!

Aiden is doing pretty well, this last week was rough as he started having an increase in seizures without a huge reason, I believe it to be maby a combination of teething and constipation and so far the last couple of days have been good so I pray that continues. And to just update usually aiden is seizure free and is on 2 seizure meds that seem to really work well for him. I no longer keep track of seizure free stents and just try to enjoy them because it really rocked me when we would have a seizure and ruin our count down ... So now we keep track of seizures and leave it at that.

Tomorrow aiden has an MRI scheduled and mommys a little worried as they have to sedate him for it. He's never been under sedation and I hope he does okay. I also hope that this MRI may show us a reason behind aidens Ohtahara syndrome but I'm not getting my hopes up. I'm at peace not knowing.

We will also in a short amount of time be celebrating aidens 2nd birthday!!!! I am so excited for this new milestone ;)