Happy 10 month birthday Jacob!

Jake is keeping me VERY busy these days. He is everywhere and gets into everything. He still is not crawling but he is rolling all over the house. Army crawls here and there but not much. He has figured out he can get there 3x as fast if he rolls and boy does he get everywhere.

He also started clapping! I know its a small milestone to some but for us its a big one. He has been through 2 open heart surgeries in his short little life so those chest muscles are weaker than the average kid. I may have been a little to excited about the clapping because he realized every time he did it I would say Yay! Before I knew it he was clapping non stop and laughing at me as I followed his cue and said Yay!

Jake also has mastered an IPOD game. Yes you read that correctly, my 10 month old can play ipod. I downloaded a game called peek-a-boo barn for him. A barn pops up and looks like its shaking so they know to click on it. Jake learned very fast that if he scratched the screen the barn doors opened up and an animal would be in there. Then all on his own he touches it again so it closes and he repeats the process. He played the whole game by himself and was very entertained by it! Don't worry everyone who disagree's with letting kids play games/watch tv.. this is not a 24/7 thing lol. I am thrilled at how well he is interacting though. Developmentally he is doing better than I ever imagined.

Jake also started saying Ma-Ma! He is not saying it much but has said it a few times and of course I jump for joy every time I hear it. Aidan's first word was da-da so it was only fair that Jake say my name first.

We are trying not to use his g-tube much. He downed 8 ounces in less than 10 minutes earlier! He has never done that much before. Usually I just let him take what he wants and if its a good amount like 6 ounces I don't push it. If I know he has not taken much and its been a few feeds in a row then I make sure he gets the full 8. This method is really helping because he is taking more baby food by mouth which we wanted. He is just doing so well and I am so proud of him. I am still working with Speech and Nutrition to monitor his progress and they are both pleased. I ran this new feeding approach by his pediatrician who also said as long as he is gaining they are happy with how he is doing. He has consistently been in the 50 percentile range so his weight is remarkable for a hypoplast.

Jake is 10 months old today!
(As you can see he is very excited about this)

It is hard to believe that this time last year I was preparing to move to Philadelphia to await his arrival. I am so proud of both of my children. I talk so much about Jake on here because its "Jacob's Journey" but Aidan is my hero as well. That little guy has been through so much this last year and never skipped a beat. He is the most amazing big brother and has never resented or complained about all of Jake's appointments, attention or even me being gone for so long after Jake's birth. I am amazed at how he has handled it all and could not be more proud of him.

Congenital Heart Defect Awareness

February is heart month so its going to be a busy month. We plan on doing a few newscasts and articles to help promote CHD awareness. The American Heart Association has taken to Jake's story and he will be a child advocate for them. They will tape Jake's story of hope and play it at this years Heart Ball and use it for news spots covering Go Red. I will post the newscasts when they air. More great footage to show Jake when he is older. His story has touched so many lives and I hope one day he is proud to have helped make a difference. Telling our stories is what will help open more eyes and inspire more research which hopefully one day can be life saving for our kids. We may be one small voice but together with all of the other parents and adults living with CHD we can make a difference.

I also wanted to say thank you to my Aunt Linda for purchasing a beautiful "Mia Charm" in honor of Mia Grace Marrone. Mia's mother Jenn has become a very close friend of mine. She designed and had these beautiful charms made in honor of Mia and to help spread awareness. Anytime anyone asks about this unique piece of jewelry it creates an opportunity to share Mia's story and educate others about congenital heart defects.


Learn more about baby Mia and see this amazing necklace in detail through The Mia Marrone Heart Foundation. You can print an order form by clicking here or by emailing a request to HLHS.HeartHugsForMia@yahoo.com if you do not have a Facebook account.

Most Congenital Heart Defect kids don't look sick. You can't tell them apart from other kids, but their scars are VERY real. Most face more in their short lives than any person can imagine. Congenital Heart Defects are the #1 cause of death in children. CHD Awareness Week is Feb. 7-14.

Raise Awareness, Spread Hope.