Wednesday, February 16, 2011

What Now?

Now that the surgery is over, KC and I have often looked at each other and asked, "What now?".  The last 6 months of our lives has revolved around giving birth to Jacob and getting him to his surgery.  Now that his surgery is done, we have no real 'goals' per se to look toward.

So, we decided it's time to take the next step.  One of the things we discovered when Jacob was born was that there were no real support groups set up for families who had children with Downs Syndrome.  In a city the size of Spokane and the fact that our hospital, Sacred Heart, is a HUB for high risk births and heart surgeries, we decided there was a definite need in our area to create some sort of support system for those families in the future. 

KC and I were so extremely lucky to have the pre-existing support system we had.  KC had unbelievable support from work through donated hours and money so that he could be with our family every time Jacob was in the hospital.  Not to mention the moral support and friendships he has from his co-workers.  We have constantly been in awe at what a great group of people he works for and are often reminded that THEY are what makes Avista such a great company to work for.

Then there is our family.  KC and I have been extremely blessed with a large, supportive family who have come from far and wide to help us out when in need.  Some driving hundreds of miles to help out, and others who cancel their day's appointments and drop everything on a moment's notice to us out when we need them.

And, on top of it all, we've had a strong church support to fill in any of the 'gaps' that work and family have not been able to help with.  Through meals for the family while we're at the hospital, babysitting Courtney while I take Jacob to his appointments, driving Nathan and Elisha to their various activities, and so much more. Wow! We have been blessed.

It's been a surreal experience, in the midst of so many crisis' to have to turn away help and say, "No, we're good.  Really.  We are completely taken care of".  I often forget about how unbelievably fortunate we have been.  There are so many out there who have no one. Not a single person to call upon if they have a crisis and need a little help. And yet my cup runneth over. 

In an effort to help in what little bit we can, KC and I (actually it was KC's idea) have decided that we would like to start a Non-Profit Organization to help provide a little bit of that support that parents will need when they come to the realization that they will be adding a child with Downs Syndrome to their family. There was so much that we had to learn on our own, and so much that we are still learning.  In spite of our support system, there were deficits that only a person who's "been there, done that" could provide.  Our goal and our focus will be to help celebrate the birth of that child with Downs Syndrome, while still offering a support system to help those families mourn the loss of their preconceived notions of what their family was going to be like before the revelation. Whether it's giving them a welcome packet, or showing them where they can go if they are staying in Spokane for an extended period of time and need a place to stay, we're hoping to make the experience a little easier to manage.   We'll be creating a website that helps navigate a family through the logistics of having a child who is developmentally disabled (DD) such as who to contact, what resources are out there for the children and their families, where to go, etc.  Basically, I'll be documenting everything I learn as I go, and hopefully those who come after me will benefit from what I have learned rather than having to go through all that I have had to go through to learn about how to best care for Jacob. K.C. is also hoping we can create an active Downs syndrome group that gets together on a regular basis, has activities, and enables us the opportunity to get to know other families just like ours in the community.

With that in mind, I'm actively looking for people who are interested in helping out in a variety of ways.  Just getting the non-profit aspect of the business up and running will take me months because I'll be doing it in my spare time (Caring for my family and for Jacob is my priority). I already have a sister who is taking a grant-writing class and has offered to apply for a grant for me through her class.  And I have a few other parents who have children with Downs who have offered to help.  But if you know of anything that could be of help - resources, links, people interested in donating or participating, places that offer services to people with Downs etc.  PLEASE let me know!  Any help would be appreciated.  I have a feeling that this is the first step in what may very well become my life's work and passion - bettering the life and advocating for individuals with Downs Syndrome. Wish us luck! We're gonna need it.

Tuesday, February 15, 2011

Waiting for the Dust to Settle

It's hard to believe its already been a week since Jacob came home after his heart surgery! And what progress he has made!

Jacob Sleeping. The only time he ISN'T moving now!

I really begin to get the feeling that he has become a normal little boy now (relatively speaking, of course!). Jacob still pretty much sleeps through the night, which I am eternally grateful for. It makes up for the fact that I'm still waking up to Courtney 2-3 times per night.  I think she has nightmares and is waaaaay too attached to her bottle at night. 

He was weighed on Sunday and has chunked up to a sturdy 11 lbs 11 oz.!!  So when you look at him, he's not quite so fragile looking.  His incisions are healing nicely, and the one for his heart just looks like a paper cut now!  It's amazing the job that they've done on him. 

He sleeps so soundly now.  No random gagging or puking. 

He's become a pretty active boy now.  We have a little vibrating chair that he likes to sit in with toys hanging above him.  He'll sit in the chair, enjoy the wiggling, and kick his feet at the toys and yell at them. It took us a couple of days to realize that the yelling wasn't him indicating that he was upset or bored, he was merely talking and playing with his toys! 

His head has gotten much stronger.  He can almost completely support his head on his own now.  There's almost no wiggling!  A couple of weeks ago he was unable to support any weight on his legs, which I attributed to the low muscle town from having Downs Syndrome.  But here we are 2 weeks later and he can support about 1/2 his weight on his legs.  It's difficult to work on this aspect because we're still not allowed to hold him under his arms.  Everything must be done by cradling his neck and his body like a newborn so as not to aggravate the sternum during the healing process.  I know that once we're able to treat him like a normal child he will continue to grow and progress by leaps and bounds!