This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, May 29, 2012

Great news

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

An anniversary tribute

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.
Jonathan, first impressed me as a man almost ten years ago when we first met. He was so kind and gentle. He was smart but he knew how to be goofy and make me laugh. He was strong but soft and sweet. He was hard-working but knew how to have fun. He was focused and driven but spontaneous enough to be balanced. He treated me like a Queen but stole my heart when he treated my baby girl like a princess and that was just the beginning.
During the last nine years of marriage, I have seen him spin spider web upon spider web and protect countless little details of everyday life from slipping through the cracks. He has sprinted across a room to protect one of our babies from falling and getting hurt when my back was turned. He has thrown his invisible shield into the air to protect our family not from explosives or firearms but from overflowing toilets, fire ants, and scary things that go bump in the night. No, he can’t tear down buildings by bumping his fists together but he knows how to superglue a favorite figurine back together because a baby brother threw it on the floor or
let somebody help with the simple every day tasks so that they can feel important and he will stand toe to toe up against whatever person , place, or thing he thinks is up against one of our kiddos. Ironically, it isn’t any of these things that make him a superhero to me. Instead, it’s his willingness to give of himself so freely for the betterment of the rest of us. He frequently pushes through and goes to work sick or exhausted. He has abandoned “ a night out with the guys” for family movie night on the couch which usually involves one or both of us cleaning up a spilled drink and very often times vomit and then sometime halfway through the movie he wakes each one of us and gets us tucked in to our beds. He gave up his love of a bowling night for a night of karate
and soccer practice with a team full of six year old little boys. He has not only accepted my baby girl but loves her like his own and even more incredibly realized without coaxing or hesitation that loving her meant accepting her Dad as a part of lives. He has done laundry, lunches, listened and loved our other two kiddos for days at a time while I’ve been in the hospital with Lydon. He has cleaned muddy tennis shoes, ironed, grocery shopped and cooked a meal countless times. He sends me flowers, gift cards for massages or manicures and tries incessantly to convince me I’m the most beautiful girl in the world!
I’m sure that none of these things sound like super powers and I know that they won’t land him a mega movie deal in Hollywood but this I know…. He is a superhero to me! He is with me at every turn. He is strong when I am weak. He lifts me up when I’m down. He lets me cry when I need to cry and when he feels weak and needs to cry he is man enough to gently take my hand and bow his head and ask the biggest superhero of all to renew his strength. Thank you Jono for who you are and ALL that you do. I love you, admire you and respect you as a man, a father and the most incredible husband. Thank you for being my Spiderman, Superman, Hulk, Captain America….my very own Avenger. Without you, I certainly could not do it all! Nine incredible years of marriage….I wouldn’t change one minute of it. Happy Anniversary Babe!! I love you….always and forever!!

Thursday, May 10, 2012

A quick update

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.