For the Love of Ivey

Something must have distracted him here.....an unfinished job. It must have been the pondering question of.... (Yes, I know I must get these delivered before the New Year!) Just how much floss is there in that tiny tube anyway? Or maybe, the need to try (unsuccessfully) and escape. Apparently, this is where he obtains energy for his speedy destruction. Notice that the bag is almost completely empty. Upon confronting him about his M&M consumption, he was totally ashamed! Ivey has a tiny stomach bug today. All I did was leave the room - for less than 90 seconds - to check on her. I have yet to determine exactly what Knox was doing in those 90 seconds.

For weeks now I have been following Ashley's Journal. So many times I have stood in awe at this mom. Often I have been told that I am doing a great job with Ivey . But let's be honest here, what other choice do I have? This mom had a choice; she chose to take a child into her home and love her as her own. My heart has broken as I have read her past few posts. I have sat in a hospital room in the witching hours of the night wondering Ivey's fate. The clicks of the equipment, the alarms, the IV's and needles, the fluctuation of numbers on a computer screen, the medications are all a constant reminder of how fragile life really is. They are constant reminders of the unconditional love for my child. The sounds are constant reminders of choices and decisions that must and will be made. In the witching hours, the sounds are magnified-at times unbearable-other times comforting-either way, as long as I hear the sounds Ivey is okay. I have often wondered about the same things th...

Wishing you all a wonderful Christmas. May the true magic of the day engulf you. Amongst the festivities, feasts and family, take a moment to bless the one who was born on this day to guide us. A child was born...

Sweet security After a long day Ooops, where did she go? Now, if only Matt and I could just get them to do this all at the same time....

today we took all of Ivey's monitors off of her and just let her be...a baby. And guess what, she loved it. For a little reward, she rolled over! Don't tell anyone (especially my mom) but we let her have her first taste of real food. Considering that she isn't very successful with a bottle yet, this was a great moment for Ms. Ivey. A little peppermint ice cream.... she would smack a little then open her mouth like a little bird. Adorable. I took pictures, but cannot get this computer/camera to cooperate! gwen. ps: I can tell you that it has meant the world that so many of you really took Ivey's last post to heart. Thank you for making a difference.

Okay- I tried to reason about this. I tried to give the benefit of the doubt. I said a little prayer about this. I cried about this. I phoned Tasha and vented this. I came home and jotted it in my notebook so I could 'Get Over It!' Still. I am replaying it in mind over and over. This scene will happen again. How will I handle it next time? Will I be patient? Will I throw a fit? Will I ignore it? Will I just act like it is nothing? What kind of example will - I - choose to set? I can run for miles and miles. Well, I haven't quite worked back up to that, but in my time before babies and in the short spans in between babies, I run. It is taking me a little longer than normal to jump back into things this time around, but I'll be back. I have a small constant dedicated group of girls that I run with early in the mornings. We have ran a 1/2 marathon together and many other races. Each step took time, commitment, determination, stamina and a lot of sweat. Each morning we woul...

One week has pasted since I have posted any new information about Ivey, or anything else for that matter. I have attempted several drafts, but hesitate to post them. And several of the drafts I have deleted completely. Why? Optimism is at a low. I am mentally drained, physically depleted and emotionally broken. No matter how up beat I have tried to start each post, they all end in sallow mood. Therefore, I have avoided my computer all together. I have found over the course of the past few months that deprivation tends to multiply emotions. The past eleven days have consumed every ounce of drive and togetherness that I strive to retain. Every nerve in my body is more sensitive; my emotions are completely on my sleeves. Eleven days ago I knew the schedule that we were about to adhere to was going to be more taxing than anything that we have ever experienced. I was prepared for Ivey to come home. No mistaking it, I was completely ready. However, I was not prepared for other events of the ...

Ivey was admitted into Floyd for observation early Monday morning. Around 6:15 Monday morning Ivey had her first seizure. We transported her via EMT to the hospital. She did stay overnight for observation and seems to be doing well. She is on medication that will prevent her from having other seizures. Ivey will also have procedures today to try and determine where to go from here. We have known from the beginning that some children with Ivey's genetic diagnosis have been known to have seizures. However, not all have them. We were hoping to have dodged the bullet. More than likely this seizure was not a single incident, she will probably be prone to seizures in the future. They can be controlled with medication. The focus will be on 'Why?' she is having them. There are so few known cases of this particular genetic diagnosis. There is a very limited amount of information so it is vertually impossible to predict her future. As with many genetic disorders, such as Downs, there...

Well, if you read this post last night, you will notice that it has altered slightly. Last night we were waiting to meet a new nurse for Ivey at 11:00 p.m. This morning at 4:00 a.m., I am the nurse taking care of Ivey. Matt was the nurse from 12:00 a.m. to 4:00 a.m. A slight modification to this post was required. I guess that particular person just was not meant to work with Ivey. Obviously, she was not a perfect fit. Ivey came home Thursday. It was amazing to watch the boys unwind as soon as she entered the door. They began to eat better and best of all, they have slept better over the weekend. Also, they have barely left their sister for a moment. Ivey had a great weekend. She is slowly adjusting to her new home. Keep in mind, we moved and our new home is not home to her. We are all working Ivey's new schedule into our daily routine. We thrive on a schedule around here - a schedule that did revolve around Ivey's feedings - a schedule that now revolves around her feedings and...