Tuesday, June 22, 2010

Making a Difference

I has been a busy week and I am sorry I have not posted in a while. I am excited because my work has decided to let me work from home part time so that I can still bring in some income. I am not able to leave Jacob so this is perfect and I can not thank them enough for making this possible. I am a graphic designer and I love what I do and am excited to be able to be creative again. So I am nurse/mommy by day and designer by night.

Making a Difference!
I was excited to find out that the American heart association will be having a heart walk in September. My boss told them about Jacob and they were very interested in his story. I emailed them and told them how I want to help spread awareness anyway that I can. I have become so passionate about sharing our story in order to help others. There is no better feeling then knowing you can help someone through this roller coaster. As I have mentioned before, when I first found out about Jake I was not giving much hope or told about all of the kids living normal lives with this illness. Until I went searching and found so many amazing heart kids and parents I was devestated thinking we would lose our boy. That is why I started this blog. I want to show other people that there is hope.

Jake was even more complicated then a typical HLHS. He also has lung disease and has been through more in his young life than many of us will in a lifetime. Despite all of that he is here with us smiling and thriving! People need to see that. When you hear about The American Heart Association or other charities you know its nice that they are there to help people but you do not truley have a face to go along with the cause. If people can see Jacob and know that these illnesses are out there then maybe they will be more willing to donate. They can see who they are helping. I would put change in the Ronald McDonald house box occasionally but never really knew what it was going towards until I lived it. I can tell you that I will ALWAYS put money in there now. They were amazing and I don't know where we would have stayed for 2 months if it were not for them.

The American Heart Association would like us to participate in the Heart Walk in Sept. if possible. I really hope I can but it is dependent on how Jake is feeling, since his surgery will be in August. They are going to have a newscast and want us to be on that as well as give him a feature in their special section that will be in The Charleston Gazette and the Charleston Daily Mail. They are also doing a Heart Ball in February and are going to highlight Jacob for that as well. I am so proud of Jacob. He has already taught so many people about life and love and now he will spread awareness and hopefully help other babies just like him.

Update on Jake
Jacob continues to grow. I swear he gets longer and chunkier everyday. We had a great visit with Mimi but sadly she had to go home on Sunday. Thank you Mimi for everything you did for us.

Over the last few weeks Jacob has been changing so much. He has found his hands and loves to hold them together. He eats his fingers all of the time. He is turning to his right more which is great because he always favored his left. We have been working with him a lot on this. His eye contact is so great and he has been holding his head up consistently. He has been doing so well with holding his head up that we decided it was time for a Bumbo! Jake loves it and he looks like such a cute little peanut I love it.

The best thing is that Jake is smiling all of the time. Cooing and just amazing us with his personality.

Big Smiles for daddy on Father's Day!

Smiling at Mommy

The feeding issues have been better. We decided to give him "snacks". Our problems have always been with volume for Jake. He gets hungry an hour before his feeds are due so we decided to give him 65mls during his normal feed (We were doing 60). He is doing well with that but still getting hungry so we are giving him 10mls about an hour before his feed is due which seems to sustain him and its not overloading him all at once. We are also slowly increasing his night feedss as well. We increase the rate by one/hour (10mls total) each week.

We had a first. Jake's G-tube fell out but Mommy and Mimi saved the day. Jake's G-Tube had been very red and purple and he would cry anytime we would touch it. When it fell out I noticed it did look irritated inside as well. I noticed it was low on the water and I put it back in with the correct amount. I also started putting an ointment we got at CHOP on it. It is better than it has been in a very long time. I had always had the doctor change it but was told can do it on my own and it really was not difficult. Jake has been so much happier since then also. So it was a good thing it happened.

Pictures at the Park
We recently had our photo's taken. Photo memories are very important to me especially now. Jacob is not able to go in public so I was not sure we would get pictures done however Deanna Pinkerman (a local photographer) met us at a local park. This was perfect, Jake got fresh air and we got our pictures. I am so excited by how good they turned out. There are so many beautiful pictures of the kids.

Click here to view our pictures

Way to go Mommy!
We took Aidan to see Toy Story 3 on Saturday since my in-laws were here to watch Jacob. When backing out on the way to the movie I side swiped my father-in-laws car. I felt so awful but called my insurance company and they are taking care of it. I could not believe I did that, especially since he even said "Do you need me to move my car or is it ok where it is" I said it was fine. Sheesh. Here is a picture of my handywork. Sorry Pappy!

It was nice having some time just for Aidan however I have to say that Toy Story 3 was a bit dark for little kids. It was almost like a little kid horror flick lol. Overall it was good and we all had a good time.

Thank You
I would like to thank everyone so much for the cards, words of encouragment, gifts and support. I am sorry I have not had time to send out thank you cards to everyone but please know that we appreciate everything and can't tell you how much it means to us.

Thank you to our family who has helped us more than we could ever repay. Thank you to Nichole's Church for cooking us meals twice a week. That is such a huge help to us. The days are so busy that cooking dinner difficult to do. Thank you to Nolan Road Baptist church for the walmart gift cards. Thank you to all who have donated towards Jacob's care and most of all Thank you for all of the prayers that have been sent up for Jake.

We love you all and are so blessed to have so many people who love and care about our family.

1 comment:

  1. Hope everything goes good for the next surgery and i would like to know how to get involved in the american heart association because i have been trying to find out and no one knows a thing u can go to jayden website a tell me