Lets Catch Up...

In 2010 Jayci did not have any surgeries or any hospitalizations. It was a banner year that's for sure. Along with having a hospital free year (with the exception of monthly doctors visits) Jayci was granted a wish from the Make-A-Wish Foundation. She wished to have a birthday dinner with the Princesses. And so we embarked on a trip to Florida to have dinner with the princesses. Jayci turned three in July and what better way to celebrate her birthday than to do it in Disney World. Yes we went to central Florida in the middle of summer. It was sweltering hot but we all did pretty well with the heat, Jayci included. Heat as you all may know has just as an adverse affect on CHD kids as cold does. She was indeed more out of breath than usual and we had to closely monitor her fluid intake to prevent dehydration however with having the passes that got us to the front of the line at each ride we were able to get through the parks in the morning and spend the afternoon at the water park at GKTW Village. Give Kids The World Village was a wonderful place geared towards the needs of special health needs children where we stayed while in Florida. It was minutes from the parks and just a great location to be. All four of the kiddos loved it there and they were all spoiled during our stay. It finally came time for Jayci's birthday dinner with the princesses and what a dinner it was. Jayci didn't care much to eat what she had ordered just about whether Cinderella was coming to her table. And finally Cinderella appeared through the door and Jayci was in awe of her. Cinderella knelt down to give Jayci a hug and as she talked with Jayci a glow came across her face like none other I've seen before. It was a fantastic sight to see and one that will forever hold a special place in my memories. From that day on Jayci has been in princess mode. Everything she sees or gets must be princess approved... While 2010 was hospital free I am sorry to say that 2011 will not be. We are in the middle of planning a surgery for the summer... It was very nice to be hospital free for one whole year. She did a lot of growing and playing like a "normal" child would, however it just makes the idea of another surgery that much harder to swallow. I think the "new" surgeon is thinking of attempting the Unifocalization/VSD closure. The VSD closure is what scares me. She will have blood flowing where it should be flowing not where God had intended when her heart was forming. This will cause pressures inside the chambers of her heart and resistance in her lungs. Again this simplest phase of her repair journey scares me...

Pro-Log

I started this blog almost two years ago and found it easier to update the carepage instead, however lately I feel the need to blog instead of the carepage. This need to blog is met with many more features and "bells and whistles" if you will, that carepages just cannot offer. For those of you who wish to still keep up with Jayci through carepages I will be doing that as well. This Blog will be more about my family and how we all cope in our own unique way with Jayci's illness. The carepage is great don't get me wrong but for those of you who are interested in the whole story please feel free to follow along. I expect to post here at least once a week...HAHAHA hopefully.

Family Photographs...

Okay so yesterday was not only my Dad's birthday it was also family portrait day. Every few years we have our family photo taken for our church directory. Well I thought going to the dentist was rough, getting four kids ready for a photo session was like torture. Nobody seemed to want to get dressed and when they finally found the outfit that was just right, it was way over the top. I mean my oldest at one point had on a bright blue/aqua skirt with and orange tank top and a white feather boa. I am all for letting them express themselves but that was a little too much for a church directory. So after a few disagreements about what we were wearing we finally got into the car and went. We arrived and had to wait of course. I accounted for the waiting but did not think we would be in such a dilemma. On the far counter was cookies and pretzels, this of course to suffice the long wait if there happen to be one. A very thoughtful idea on the part of the photographer. We managed to convince the kids that those were for after pictures so not to get crumbs on our cloths or face. That was torture for the darlings. While I distracted with a few cunning jokes, which the kids didn't find all that funny, Justin sang songs with our youngest. He called me to watch her little dance and we both sat in awe of how cute she was. All the while we were cooing over our two year old, the older children proceeded to get drinks out of the water fountain. What is with water fountains by the way? Every drink fountain we pass, someone wants to get a drink from it. Anyway I turned to catch them in the act and when all three turned around there were water marks all over the front of their shirts. I looked in disbelief and then could not help but laugh. "Oh well" is what I thought. I was actually hoping we would have to wait a bit longer so that it would dry.
We got our chance to sit for the photo and all seemed to be going well, besides the occasional squabble amongst the children it actually went pretty smooth. We gathered the children around and we all sat down to review the digital pictures to pick which one we liked best. It started out all right with a picture of all of us smiling except Lucas, he was making a funny face. So we decided to go on to the next set of pictures and before I knew it I was looking at at least fifteen pictures of Lucas making funny faces. In every picture Lucas tried so very hard to make a funny bug-eyed face to show his humorous side. As the poor photographer went through each photo I quickly realized they were all like that. So we had to pick one where Lucas' face was not as drastic as the others. While he was still making a funny face it doesn't really look that bad. Yes my son the comedian. I am so glad he makes me laugh...

Introduction...

This is my very first post... I say that in hopes that you will forgive me for not knowing what I am doing.

I have been a stay-at-home Mom for two years now. I can tell you that the experience of being just a full time mom instead of being a full time mom/working full time is definitely different. My youngest daughter was born with a Congenital Heart Defect. After she was born and we learned of her exact diagnosis there would not be an option for me to return to work. Her health and well being would rely on me being home with her 24 hours a day. While I do miss the interaction of a work place, I would not trade being home with my children for anything. The lessons I have learned and attained have made me who I am today. The joy of watching them grow and play and learn is the best gift of all.

My hopes for this Blog is that you'll follow along my amazing adventures of being a Mom of four very special and amazing children. And the journey our family has taken with Congenital Heart Defects.

Thanks for stopping by and look for more posts soon...