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sack316
11-02-2012, 08:36 AM
Hey all, sorry I haven't been on much... as you can imagine free time is not something I have too much of right now!

First off, I hope all my friends in the northeast are doing alright. My Aunt is still without power, but everyone is OK thankfully.

We had the joy of finally bringing Samuel home a few weeks ago! He was finally getting to where he could tolerate eating enough by mouth and gaining enough weight to safely stay out of the hospital. Our little man is now about 5 1/2 months old, and still not quite 9 pounds in weight, but such a tough guy!

And, as expected, he has begun to thrive even more being in a home environment with better consistency. He eats much better now, and is such an absolute joy!

His first checkup with the pediatrician went very well, she was pleased with everything she saw... even saying she had never seen a Downs baby at his age so aware and purposeful in what he was doing. We also had a follow up with the cardiologist who was also very impressed. We'll see each of them monthly at this point.

We also had our first meeting with EIEIO, who is a state early intervention program. Let me tell you, this kid was born a month early, had to be on oxygen, had stomach surgery, had heart surgery, ate through a tube, and spent time on a ventilator among MANY MANY other problems in his first few months. Somehow my little man actually rated on par or advanced in EVERY single category on his developmental assessment! And I don't mean in relation to similar babies with complications, I mean in relation to 100% healthy babies with no problems! How proud I was of him!!! Absolutely amazing!

So now the gameplan is for him to continue to eat and grow. He will continue to be evaluated and as he gets bigger they will attempt the repair on his heart once again, most likely around the 8 month to 1 year mark (could be sooner or later depending on the status of his temporary band and his ability to thrive). The later the better, as him being bigger creates a higher chance of success for the repair and an easier procedure for the surgeons to accomplish.

All in all, so far so good! His Momma and I are pretty tired, both working full time and finally able to experience parenthood outside of the hospital walls. I'm in retail, so obviously my hours are elongated right now... and she is a CPA with her biggest audit of the year going on... so it is hectic to say the least! But we're managing so far. Daddy has struggled to adapt to a "only sleep 2 or 3 hours" schedule to get in all his feeds /forums/images/%%GRAEMLIN_URL%%/wink.gif But I sure am lucky to have Christy who has been amazing at picking up my occasional slack for me!

Still a long way to go, but as Gaylio would say, "under conditions prevailing" all has gone exceptionally well in the months since his unsuccessful heart repair. He is an incredibly resilient kid, our little Superman (proof below):

http://sphotos-a.xx.fbcdn.net/hphotos-ash3/599025_10151068928531326_696877561_n.jpg

Hope everyone is doing well and I'll try to provide updates when possible on here for those that are not on my Facebook (and if you'd like to add me on there, just search Sack316, it'll be me that comes up /forums/images/%%GRAEMLIN_URL%%/smile.gif )

Sack

Gayle in MD
11-02-2012, 08:46 AM
Wonderful news Sack! He's so cute!

So glad that he's doing so well. I think about you and yours all the time.

Samuel doesn't give up, just like his Dad. /forums/images/%%GRAEMLIN_URL%%/wink.gif

Take care friend, and stay in touch.

Love to all, and if you need anything, just /forums/images/%%GRAEMLIN_URL%%/whistle.gif

Gayle

Soflasnapper
11-02-2012, 09:03 AM
I am delighted to hear of this progress, and pray for his continued improvements. Might have to break down and join Facebook to follow along. (Gritting teeth, swearing, lol!)

May God bless you and your family.

sack316
11-02-2012, 10:14 AM
<div class="ubbcode-block"><div class="ubbcode-header">Originally Posted By: Soflasnapper</div><div class="ubbcode-body">I am delighted to hear of this progress, and pray for his continued improvements. Might have to break down and join Facebook to follow along. (Gritting teeth, swearing, lol!)

May God bless you and your family. </div></div>

Thank you very much! And there's a few folks on here who are on my FB friends... out of respect for their privacy I won't mention anyone specific. But I'm sure you can ask around or they maybe can let you know and keep you posted that way without you having to grind your teeth down /forums/images/%%GRAEMLIN_URL%%/wink.gif

Sack

eg8r
11-05-2012, 10:53 AM
What great news!!! Glad to see him home and you guys starting to get into the swing of things with a newborn in the house. This are definitely looking up. /forums/images/%%GRAEMLIN_URL%%/smile.gif

eg8r

LWW
11-05-2012, 12:20 PM
Are you sure his name isn't Kal El?