Tuesday, May 29, 2012
This post will be short and require very few words but oh how sweet it is!! We are happy to report....Lydon is doing GRRRRREAT!! About a month ago, Lydons cardiologist started him on a new heart med to try and help level out or better control his dysautonomia. About two and half weeks later, it was literally like somebody "flipped a switch". He is playing, laughing, talking and eating non-stop! No vomiting, no shortness of breath and great endurance! :) We are thrilled to see this change and although it may be partially the result of the new medication, we are giving our almighty God all the credit for this. Many, many prayers have gone up for Lydon, especially over the last several months. We have held on to our faith and belief that God has great things planned for our beautiful boy and this seems like a small token that proves just that! A million thanks to those of you who have prayed and believed with us. Words cant explain the joy we felt this weekend... On a whim, we packed some bags and threw everybody in the car and headed to San Antonio. Sunday, we went to Sea World where everybody had a blast! But to us, it was priceless watching Lydon run, jump, ride rides, swim and eat pizza and ice cream right in between his brother and sister. I wish I had a picture to have captured every moment but I was too busy trying to keep up with him to carry the camera! ;)
Thursday, May 17, 2012
Ok, so most of the time this blog revolves around the
drama challenges that we face in dealing with everyday life with our three kiddos and primarily the little one. But today, is different. It’s a special day that doesn’t center around any drama, no medical challenges or childhood milestones. Today marks the day that I made lifelong commitments and promises and said “I do” the most incredible man I know. This one’s for you babe!
I know that it’s often said that “all the good guys are gone” but I have living proof that they aren’t. He can’t spin spider webs from his finger tips, he doesn’t have an indestructible shield that can be used as a weapon and he doesn’t suddenly swell up, turn green and become a humanoid monster but he IS a superhero in my eyes.
Thursday, May 10, 2012
I'm sorry it has taken me so long to update the blog. We have been busy, busy, busy! Most importantly, Lydon turned three!!! I will do my best to post a "birthday blog" with some pictures soon. Medically, Lydon is doing great! We weaned off of the TPN totally. Slowly but surely we have gotten his tube feedings to a rate that he is tolerating very well and the docs are happy. He has been able to eat and hold down more in the last several days. We had a GI follow up and his weight was UP several ounces. When our cath nurse came to change the dressing on Ly's PICC line last week, his skin was very red, warm and broken in several places. It also looked a little puffy at the insertion site. Luckily, he wasnt running any fever but after seeing his arm like that, we didnt have a good feeling about it at all. Another line infection is the last thing in the world we need to deal with considering how good things have been going the last couple of weeks. Early the next morning, I placed a call and spoke to our surgeon. She agreed with what we were feeling so the cath nurse came out later that afternoon and pulled it. So...we are line free! YAY!!! That being said, we are going to live it up and enjoy the bathtub and swimming pool to its fullest hopefully for a VERY long time. Thanks again to everyone who has prayed or placed Lydons name on a prayer list. We feel very very blessed and lucky to be where we are at this moment. A little over a month ago, the thought of being off of TPN, line free, tolerating tube feeds AND snacking on Goldfish, cookies, and apple juice seemed almost impossible yet here we are. God is so good. We are breathing a lot easier these days and feeling a lot more joy, happiness and optimism.