For the Love of Ivey

Today is Rare Disease Day. Ivey falls into this catergory. With her known diagnosis as a deletion to her 21st chromosome, she is a rare little bird. There is no assigned name to her genetic abnormality, no small group of children to connect with, no parents to get advice from, no associations what-so-ever, none of her doctors have seen this before. So please take some time to think about how this rare genetic abnormality affects Ivey, her family and all of us who know her.

Yesterday our sweet dog, Tara, died.  She came into our lives before we were married.  Through the dating days, engaged days, pregnant days, baby days, toddler days, Ivey days, little boy days and all those in between she was there.  Each stage of our lives was her life.  She is, was and will be loved.

Sunday mornings can be a chaotic peaceful in our house. On a normal Sunday morning, Matt and I are crashing. Normally – we don't have a nurse on Saturday nights so we are up watching Ivey and the brutality of that hits right around the sun coming up on Sunday---add to that two boys who wake the roosters up to crow in the morning with no conception of easing into the day. It is obvious to say that our attendance at church since these nurse-less weekends started a few months ago has been sporadic. I am pretty certain – God knows where we are – literally – in all senses of the word. With that said, we did have one of Ivey's sweet nurses last night since Ivey had extra hours hanging out there from being in the hospital earlier in the week. So I got up this morning, switched places with Ivey's nurse so she could go home, started up a movie for the boys, put our sleeping Ivey in the bed with her sleeping daddy and our sleeping dog, got my flow of caffeine started….and settled h...

It doesn't mean to be in a place with no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart. Author Unknown That peace is a peace that I strive for. Every day. However, I fall short of it every day, but I want it. And I do think that eventually – I'll get there. When I do find that peace in one area of life, it never fails, chaos has ensued in another. Lucky for me I live with a man who lives in 'that' peace and always remains calm in his heart. I honestly don't know how he does it, but watching him gives me hope that someday I will find that peace too.

yippee.  the doc just left and gave us clearance.....to go home.....today!! i must hurry and pack before they change their minds -

This morning while Ivey and I broke out of her room, a room that doesn't have direct sunlight; we did what all wild overly restricted girls in need of Vitamin D do --- we did laundry. Here at the hospital there is a place for families with washers/driers, rooms for family to sleep, showers, etc. This place is prepared for those in it for the long haul. I'll have to admit that sometimes it is a great place to be alone, especially late at night or reallllly early in the morning when you need a good cry. It is also like the water fountain - but stories told in the laundry room aren't rumors or hear say..nope, no gossip.  Instead what you get would wipe out any acclaimed reality TV, because the reality is that it is just that...real reality.  Today there was a lady there.  She wore a look that I have seen in the mirror from time to time and in other parents that roam these halls.  The look of stress, overly tired, little sleep and beyond worried - yet, still tryi...

Looks like we will be here a few more days.  Tomorrow Ivey will repeat the video EEG.  She is feeling better.  She has been taken off one antibiotic, but will continue with a second.  Hope to see you all soon!

With EEG leads, listening to music EEG leads off.....

I was watching the news this morning and low and behold snow is coming...does that mean it's a snow day? To update what's going on here in our break from the outside world, Ivey is sick. We came here with seizures. Got here. Not one single seizure to be recorded during the video EEG, which is still running, and landed with an infection. Go figure. She loves to keep everyone on their toes. My toes, however, are tired. She has been working us all. The past two nights during the deep morning witching hours, have been long and hard. My sweet pea has been spiking a terrible fever. She is miserable. Blood work is back indicating that she is indeed fighting an infection. Now we are waiting on other tests to try and figure out exactly what she is fighting. Her chest x-ray did look good. They have started her on a pretty strong antibiotic. Unfortunately, her little bottom is already blistering where it makes her poop so much. That in itself is painful for her. For now ...

Mange - I am going to answer that question here...my computer is not getting the best reception. For some reason emails aren't going out at times. I think it is the combination of equipment and our location in the hospital. I have to type quick. Yes, these are the tests lined up for next week. Last night Ivey started spiking a high temperature. Still no seizures from my vantage point. They are going to check the tape from last night with the spike in her fever, hopefully there is something there. She feels crummy though. No idea on the other. It's not looking to hopeful though. How was Tuesday? Sorry I missed - Maybe next week, if we are home and rested.

Amist the land of blogs, a real life happening.  For miss Ivey that means mornings at preschool and dances with her daddy and the never ending saga of life with epilepsy.  This battle, among the many others she has faced and triumphed, is a nagging thorn in her side.  And in the past two months they have renewed our friendships with many of our favorite nurses and doctors in the ER.  So at the beginning of January, she had a MRI and CT scan, both of which came back with information not found in previous scans.  So a video EEG was scheduled for next week.  Really?  You mean we get to schedule being in the hospital for several days, make plans, line people up to take over the boys, etc, etc.  Oh that's right we are talking about Ivey....better to fly by the seat of our pants.  So here we sit, day three at Scottish Rite.  Monday her seizures went completely weewonkee, and we earned the grand prize.  A trip via ambulance to Scotti...

You should turn up the volume....a daddy's song for his daughter.

Friday will be a pretty big day around here. Ivey has her first date. Yep, that's right ... a date. So today I found her a fluffy sparkling pink dress with a big bubblegum pink satin bow. Her first big girl dress. That's right big girl dress, I mean, she is going to be FOUR in April. All kidding aside, Ivey and her daddy have their first father-daughter Valentine's dance this Friday. It was his idea to take her. And don't tell Matt that I told you, but they have been practicing their twirls and dips. Ivey just giggles....Matt just glows. There really isn't anything sweeter than a daddy's girl, except your husband's sparkle from her smile.