The Inner Workings

     If you want to test your relationship I have heard that building a home will do that for you.  Psh Never-mind having a son with special needs, you can get through that but the process of building and the choosing and the fighting, can and has split couples up.  We aren't even building yet, and we are already fighting about location and which company to choose, etc.  It is actually quite difficult to build a home for a child that will most likely be in a wheelchair.  There are a lot of choices, and things you can change on a floorplan.. for a price... knocking down a wall here, making the hallways wider, the bathrooms bigger, hard floors instead of carpet, and don't forget we will need a bigger garage.  We have almost narrowed it down to what builder we want, but I would really like to stay in our city we are in now, but that too also comes with a price.
    If you have a child in the same situation let me know what you have done to improve your home. Thanks!

We live in multi-level home, we have 3 staircases inside the home.  Staying in this home is not an option for us for matter how many lifts we got.  So the homes we have been looking at are ramblers.  Here is the kicker, we have to finish the basement for D&K.  I would love to have a room for Declan's therapy too.  I want this to be our last home, so it needs everything!  So now all we have to do is win the lottery to get everything we want!

If you want to look at the floorplan we are leaning towards click the link below. 
House

The two bedroom in the front and the main bath we would combine and make into a mini suite for Declan, and his therapy.  Widen the hallways and doorways, and put a ramp in the garage. The basement we would have a kitchenette and that would pretty much be D&K's domain.  It is a really pretty home, and I just hope we can do it.  It would be really nice not to have to deal with stairs.

Again if you have gone through this process let us know what we are missing.  We are learning as we go.  I am trying to make it as nice as possible for ME... I mean our family...

Also if you know of any grants to help with us getting into this new home, let me know ASAP.  I found tons to help improve our home, but none for helping getting a new one.
Thanks!!
Hug your loved ones, and wish and hope for a cure soon!

P.S.  Declan is doing great and is loving his mom.  I mean not even the grandmas can hold him... it doesn't free up a lot of time for me unfortunately but that's ok.  It takes me longer to do things, but Declan is just so damn cute I can't stop holding him.
Thanks!!!

Dreams and Wishes

It's funny how fast dreams can change or even wishes.  We got pregnant with our last child, I wanted a great pregnancy, I got that, no sickness what so ever, but Declan didn't kick the whole 9 months.  Declan was born and he is gorgeous, but the doctor noticed something was  wrong.  Then you know the rest.  So we went from dreaming of our baby rolling, sitting, walking, growing up to a healthy strong man with a wonderful life, to just having our baby live, a worthy life, not a life full of pain and sadness.  I think if I saw my baby sit up by his self I would burst into tears. Yes dreams change quick, but every time I look at our baby boy I can't help but to dream big.  My dream and wishes are for our children to grow up, become independent, go to college, have a family of their own, live a long healthy life.  So I am going to try to keep on doing that. 

We are still feeding him every two hours, he is only taking 90ml which is 3oz and we are bumping it up to 100ml now.  He likes his veggies, and won't eat fruit or the meat baby food.  We are talking with a dietitian now to help us with his feeding, we (parents) are still holding out on feeding tube.  I want his life to be as normal as I can for as long as I can. 

We will be starting on a cough assist machine soon though.  A cough assist machine is a way to clear the lungs.  SMA babies have a weak or no cough so the machine helps push in one breath and brings that one breath out.  It's like one big cough, this will help if Declan gets a cold.  Just another thing we didn't dream of.. machines all over the house... well these kind of machines. 

I am having a hard time thinking of where I should draw the line with machines and overall life support for Declan. I don't want him to have a hard life and a life with machines, but every time I look at him how can I not be selfish and keep him here as long as possible.  I think that is something we will have to think about later, if the tables turn but right now he is doing good, and is happy still breathing on his own. 

I know the doctors want us to plan for if things go worse, but I have not learned nor do I want to learn how to plan a funeral for my baby while he is still here and breathing.  I have looked but I can't dwell on it cause I just end up crying for the rest of the day.  I did want to add a video of beautiful song that I think would fit us "IF" the horrible happened. Grab tissues!!!    Coleen McMahon - Beautiful Boy

I hate the song yet love it, is that possible?  Told you to grab a tissue.  Like I said I hate to even have to look into things like this, and I don't wish it on anyone.  So give your babies kisses and hugs and hold on tight.  Ok lets move on to something else cause this blog is starting to get depressing!!

Here let me add some cute pictures of one of the cutest babies ever!!

PT time!

Happy Bumbo time

What's up duck?