Jacob's Journey: 2 Years Old and Saving Lives!

My little rockstar is 2 years old!

Jacob celebrated his second birthday on March 23rd. We had a great day and the birthday boy was super happy all day long. We sang happy birthday to him and he smiled and clapped while screaming yay! Aidan, Andy and I couldn't get enough of his beautiful laugh so we spent the day singing happy birthday over and over lol. We decided not to have a big party since he will be going to surgery this month so Grandma came over and we had a small party which honestly was perfect.

Jacob loves Yo Gabba Gabba so I decided to attempt to make a "Brobee" cake. I have never attempted anything like this but I think it turned out good considering I had no clue what I was doing. The best part was it tasted amazing! Jacob ate every last bite of his cake and ice cream. This kid has quite the sweet tooth.

With the help of his grandparents we got Jacob the complete second set of Baby Signing Times. It is one of his favorite shows and he has been doing so well learning sign language by watching it. The set included 13 dvds and 2 cds. He also got some new blocks and Grandma got him a sit-n-spin which he loves.

The best birthday present was an email we got that day from his cardiologist at CHOP. She said that his heart looked great and they cleared him for his airway surgery. There was a little narrowing of the pulmonary artery but she said almost all children have this (hypoplasts). She said that they will do an MRI study and a cath prior to his last open heart surgery but right now his heart function is great! Music to my ears.

Personality wise Jake seems to have hit his terrible twos overnight. It is funny because Aidan never really threw tantrums. Jake wants what he wants when he wants it and if you say no, watch out lol. He throws himself to the ground and kicks and screams and scoots like a worm backwards. He has figured out that if he throws himself it could hurt so a lot of the time he will lay down carefully then start throwing his fit. Kind of funny how dramatic he is. It is really hard when we go out because he is not used to being out in public. He is used to being able to run around wherever he wants so he doesn't know boundaries. I tell him "No" and he immediately will cover his eyes and start crying. I know some of it is due to communication barriers since he can't talk because of his vocal cords but most of it is him just being a two year old. He has always been a little spit fire and I think that is what has kept him fighting.

Despite the tantrums I can't get enough of this amazing little boy. His smiles light up the room and he has this hysterical belly laugh. He has started to pull me to whatever he wants. He takes my hand and has me follow him then puts my hand on what he wants. He is doing very well communicating his needs despite all of his obstacles. It is also great because he used to hate when anyone would hold his hand. I think it is because he hates to be restrained and he has had so many IVs. He has been doing really well in therapy as well. His speech therapist said she is very impressed with his progress lately. Jake and Aidan have been interacting so much lately. Aidan is also getting to be very protective of his little brother. I love how much they love each other. My boys are getting so big. Aidan will be five on Easter Sunday. He is my Easter baby, he was born on Easter as well. The boys had fun dying Easter eggs this year. Jake lost interest pretty quickly but Aidan didn't mind dying all of the eggs for his brother.

Overall things are amazing. We leave for Philly in a few weeks for Jacobs surgery. I am scared but I know that he needs this. His breathing is holding him back. His breathing is more labored now that he is more active. I am so used to his noisy breathing because it has been this way since birth but I realize how "abnormal" it is whenever we are out in public. People look at him and I like we are aliens. I don't mind but I swear they must think he is having an asthma attack and I am not doing anything to help him. If they only knew how much he has been through and how amazing he is. We were at Aidan's Karate lesson the other day and there were two women there who looked like their eyes were going to pop out of their head. I swear they stared for half of the class. I thought my friend was going to flip out on them lol. At the park parents give me a strange smile then take their kids to the other side of the park, maybe they think he is sick. I used to explain it to people but you know it is kind of hard to keep telling people. Sometimes I feel like I should have a t-shirt that says...

"My son has half of a heart and half of an airway, he is the strongest person I know. He is not in respiratory distress would you please stop staring.. thank you".

I don't mind the stares I know how amazing he is. I just don't want him to ever feel self conscious. I will raise him to not worry what others think but life is hard enough for him without dealing with others who don't understand.

Aside from all of that Jacob needs his airway opened because it is risky for his heart. The older he gets the more active he gets. When he is active he struggles so hard to breathe. I am so amazed by him though because even though he is gasping for air he never slows down. I literally have to put him in a swing at the park to get him to rest for a while. He would climb the stairs to the slide and run around for hours.

Making A Difference

We had a very exciting day today. We went to the public signing of the WV Pulse Ox Bill that we have been working so hard for. Michelle, Ruth and I along with the American Heart Association have been pushing to make Pulse Ox testing mandatory for all newborns in WV. You have heard me talk about it many times but just in case you are new to the blog this is a very simple, cheap test that can literally save lives. 1 in 100 babies are born with a CHD. Sadly some are sent home undiagnosed only to pass away or suffer very severe complications. The quicker a child is diagnosed the greater the chance of survival and a good quality of life. We got the bill introduced in January and it was officially signed into law this week!

We were able to be up there when Governor Tomblin signed the bill and he gave us each a pen that he used to sign it. I am going frame the picture above with the pen and a copy of the bill so that I can give it to Jake when he is older. After the signing we were able to share our story with the Governor and thank him.

This bill is in memory of a beautiful baby boy named Corbin. Corbin's mother Ruth has been the driving force behind getting this passed. He was born with a severe Congenital Heart Defect and was not diagnosed until days after he was born. Sadly he passed away at only 81 days old. Corbin's life may have been way to short however his legacy will live forever. He will live on in every baby that is tested because of him and ever little heart that is saved. This bill is in honor of all of the children who are fighting heart disease and all of those whose lives were cut far to short. I can't wait to tell Jacob how his story helped save lives.

Thank you to everyone who wrote their lawmakers and helped us get this bill passed.

You can view the language of the bill here.

Click here to learn more about baby Corbin.