Update 5/31

Well I wont lie its been a rough couple of days... we ended up having to put Aidens feeding tube back in and he went into his major sleep mode ... I think this has to be th hardest part, you have a baby that just lays there, dosnet wake up to eat and dosente cry.. and u just every couple hours put food into a tube.... then to top it off every time your sweet baby opens his eyes or tries to wake up he has a seizure. .
Yesterday was a little better of a day, Aiden was awake a lot durring the day and even took some of his feedings by bottle. We even got to do tummy time and I decided to shock mommy by rolling over... 3 times!!!

This really has been such an up and a lot of down rollercoaster, I try not to think of all the negative but it is so hard to be out in public and not look at every baby or little boy and think Aiden wont ever get to do that or be like that.... all the milestones you look forward to when u think of having a baby, walking crawling and the hardest part is laughing and smiling.. its hard to not just not break out in tears all day... I'm hoping as time goes on this gets easier...

On a better happier note, again I am amazed at people and their generosity, their willingness to help someone in a hard time, I am so thankful for everyone that has helped my family it really means the world to us