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

So tonight we had to play dr and put Aidens feeding tube back in.... it was just the topper to the horrible day... it just is suck a freekin up and down rollercoaster, and it sucks and is so hard to let go of the one normal thing I had with him.. there is just no bonding involved with feeding your kid through a freekin tube.... but constantly being stressed, is he gonna wake up to eat, is he gonna eat enough, will he take his meds.... this is my new life....

On another shitty note we had to also use his rescue meds for his seizures ... so here's to hopefully a better tomorrow ....

Rough couple of days

So things have been rough these last two days.. I don't know if its reality kicking in or the lack of sleep plus stress...

So we went to the genetic appt yesterday, stressed out to get there on time and to drive all the way to Emanuel again. We get there and the genetisist pretty much didn't know that the neurologist had given us the diagnosis, he said they had talked about it but that it was the neurologist who could make that determination ... that there was a medical paper written back in 2010 about the possibility of there being a gene that they think is associated with the syndrome... but that the paperand testing they were doing was in Japan ... and that he can write to them and see if they are offering testing or if they are doing just research, and if they want aidens blood sample to test, either way no matterwhat is determined there is still nothing they can do... and then he basically said that all other testing for anything else has been put to the way side because they have what they feel is a diagnoisis.... ok great... could have told me on the phone... and it wasn't something we already didn't know.... then to top it off there was a severly retarded girl in the waitingj room and all I could do is think that that is our future ..... its just so scary and angering and all everyone can say is how beautiful he is. . . And I know everyone just. Wants to be nice but it just hurts worse... then to top it off all I do when we're in public is stress about what if he has a seizure ... what if someone sees what if he does it when they're holding him....

Then to top it off today I tried to go turn in paperwork for a bill grant program we hagd been working on and the lady pretty much told me " uve had two weeks to get the stuff u needed sorry not my problem" I know she hags no clue what we have/ are going through but it just was the topper to my now constant nightmare....

Thanks for letting me vent ; o )

So we had to make the best of it and ky decorated aiden so that his feeding tube didn't look so scary




But he has been doing so good eating on his own we were able to take the feeding tube out wash him up and now he looks and smells like a new baby!

I also started his baby massage tonight which is a great tim for just me and him ; o )

Tomorrow we have his genetic appointment so we'll see what that appointment entails.....

My strength for today

Motherhood is about raising, and celebrating the child you have, NOT the child you thought you would have. Its about understanding that he is exactly the person he is supposed to be, and that if your lucky, he might just be the teacher who turns you into the person you are supposed to be - The water giver...

I saw this quote on facebook and almosgt felt like it was written for me...

Were home

So we are finally home and Aiden is doing really well... knock on wood... he is eating like a champ without us having to use his feeding tube which is great!!! He's keeping me up all night wanting to eat and being awake, so of corse I can't put him down when he's awake! We even got to go to big sister mias softball game last night : o ) and of corse we already had someone as questions... Mike was holding him and a girl came up to see "the baby" and saw his feeding tube, and of corse asked what is that? And mike told her and she asked if he was ok and mike of corse said...no... .. he is a much stronger person than me... I'm struggling with being in public and having the chance of Aiden having a seizure and people freeking out or asking questions ... Mike on the other hand dosent mind talking about it with anyone...

On another note, I have some of the most amazing people/ friends surrounding our family... my wonderful friend and her mom took my 4 legged babies after the people who wanted them so bad and insisted they had grown up with big dogs had them for less than 24 hrs and decided they couldn't take them... so it breaks my heart to sit in my now extremely quiet house ( sometimes) it just has a feeling of emptiness .... but I do know it is the best thing for my babies and they get to play with horsies their size! And to everyone family and not who continue to help us with the kids and meals and really anything we could need it has almost been overwhelming with all the offers of help and support I don't think there are enough thank you cards out there to thank everyone ...

So here's to another great day! And just learning to enjoy the here and now ...

Little update

So today was a good day I actually got to hang out with my little ky (not so little anymore) up at the hospital, I think it was good for us both. None of us have had much bonding time with Aiden or each other, I think it was good also to just be here and see what aidens days look like because sometimes the unknown is just as scary. Me and mike got taught how to put in his feeding tube if it happens to come out someething a couple days ago I was scared to death of. Aiden continues to eat from a bottle which is the highlight of my day and they are talking about letting us go tomorrow morning... which is so bittersweet ... it has a finalization to the diagnosis and our long journey