Sunday, December 11, 2011

A Christmas Wish...

Merry Christmas to all of our blog friends!

Jacob has an echo scheduled in Cincinnati on December 20th. Please pray that everything looks good! I always get so worked up when I take Jake for an echo. It is so easy to forget that he has half of a heart because he looks so good. When he goes for an echo the fear takes over. I know he looks amazing so I am praying that everything looks great but it is still nerve racking. We are going to make sure that his heart function is still not being affected by his breathing. If it is then we would have to move up his airway surgery. It will be a quick trip, the boys, my mom and I will go up Monday night and come home after he wakes up from the sedation on Tuesday.

The boys are super excited for Santa to come. Jacob is loving the Christmas tree. We have no more ornaments on the bottom of the tree. Between Jake and the cats they have all fallen off and I put them at the top. Aidan keeps talking to Santa out loud which is hilarious. I told him that Santa is always watching so if he doesn't listen or does something that he thinks Santa would be upset about, he looks to the sky and yells "SORRY SANTA" lol. Love this time of year because Santa is my back up. I didn't get a picture of them with Santa this year. We don't want to bring Jake to the mall right now and Aidan is too afraid to sit on Santa's lap. He did peak at him from afar but we couldn't get him anywhere near the big guy.

Jacob has started hugging Aidan and it is the sweetest thing. He used to push him away but now he walks up to him and gives him a big hug. Aidan LOVES it. I couldn't believe it but Jacob comes up to Aidan's chin now. He is getting so tall! He is now 24lbs 9ounces and 31" tall. He is in the 48th percentile for his weight which is AMAZING for a cardiac kid. I am so proud of our big guy.

My Christmas Wish ...

My Christmas wish it to be able to communicate with Jacob. He is still not talking but is coming along really well with learning American Sign Language. The whole family has been learning. He still gets frustrated with not being able to communicate but we are working with him a lot. He can now sign: sign, baby, more, all done, please, milk, play, boat, book. He wants to watch baby signing times all of the time.

I want to try and save up for an iPad for Jacob before April of next year. I have read so many studies on how iPads have helped children who are non-verbal. There are hundreds of apps out there to help children with speech development. It is a wonderful tool to help children communicate. Children who were completely non-verbal started speaking whole sentences after using the apps. Jacobs birth to three therapists think he would greatly benefit from having one. There are sites completely dedicated to apps that help children with disabilities. A really great one I have found is

Jacob also is hospitalized for procedures and surgeries a few times a year. He has a HUGE fear of doctors and getting poked and prodded throughout his hospitalization. He has sensory issues as a result. The iPad would be an incredible tool to assist with his fear and anxiety during hospital stays and lend itself as a distraction during his most trying times. My ultimate hope is that Jake would be able to communicate with us using pictures or signs and hopefully words to tell us his needs or if he hurts. Jacob wants to communicate so badly and gets frustrated because he can't. I know that this would be an amazing tool to help him do that.

The problem is they are very expensive. We are going to use any Christmas money we get this year towards it. There is a website called Babies with iPads. They have a grant that specifically gives iPads to children with disabilities. I was going to apply and still may however they do not currently have any funding available.

If anyone knows of anywhere that is selling a used or referbished iPad please let us know. We really would love to be able to purchase one to help Jacob learn to communicate. You can email us at

Thank you all so much for continuing to help and support our amazing little warrior. We hope everyone has a Very Merry Christmas! I will post updates about Jacob's heart echo after we get home from Cincinnati.



  1. Is there an email address where I can email you?

  2. Yes, my email address is