For the Love of Ivey

I don't know if any of you ever pay attention but there is music on this blog. I like music. I am one of those people who actually pay attention to the lyrics. The songs on this blog reflect different moments in my life with Ivey. Some I sing to her, some are on my IPOD under Ivey's songs, some make me think of her and others comfort me. I have always been like that - So I have found myself at the cross roads with Ivey's blog. I am not sure what to do actually. This is a journal of time passed and time to come. I have been struggling with going on with it for some time now. It has actually been well over a year, almost two, where I have struggled with the things I draft here. Wanting to record every detail of Ivey's life, yet trying to decide how to edit it for reader's eyes is killing me. And it has felt in the past two weeks that it is time to make the decision. Thus the battle of purpose battles itself out. To set the record straight, I did not originally ...

Riding in the car is often, what should I say, interesting with Miss Ivey. Over the course of three years and 11 months I have self- trained myself to drive in emergent situations. That's a scary thought, huh? Self-traind .. For the first year of Ivey's trach, I did not drive in the car alone with Ivey. Someone (an adult) was always our passenger or they were our chauffer. It always struck me as remarkable that our friends, some close others acquaintances, would pool themselves to ride along with us. Ivey and I developed some strong bonds in those rides. However, the pressure of having such a simple privilege ripped from under my feet got the best of me. First, I began to drive alone with Ivey to pick the boys up from school. Gradually we expanded our circumference. Eventually we found ourselves driving to Chattanooga one day to watch a movie on the IMAX with friends – I have never been so scared in a car traveling that distance with Ivey trached. From that point o...

So this morning as I was spraying the shower for cleaning, I kept think, "Wow this cleaner has a really strong ammonia smell." It was the woolite carpet cleaner. I'll let you know how Woolite does on the soap scum... So begins Monday -

This is the newest addition to our family. Now before you go jumping to conclusions - stop and read.... This is Miss Ava. She is Knox, Walker and Ivey's Godsister. And unbeknownst to them she isn't a blood relative, but something a little more.

There has been alot going on around here in the past few months.  Actually alot of medical stuff.  It hasn't been like this in a while.  I'll be honest.  I am tired - mentally much more than physically.  In the past when more medical 'stuff' mounted we were already in up to our nose, so a little more was no big deal.Now we have been in a place with a slower place and just shifted from our momentary deep breath - back toward medical mania.  New stuff.  Always something new it seems, which should not be a suprise.  We have always known there would be new stuff - do you like that I keep calling it 'stuff'? Just when I thought I had this whole Ivey thing figured out she threw out a new plan straight from right field.  It's time to head up to the attic, dig around in a dusty box of college textbooks and reread what little there is about the tip of this iceberg we are about to encounter.  Google get ready. Recently someone u...

What do you do when something is wrong and there are so many doctors you don't know who to call?  And this is not a riddle, or at least I don't think so......

Update:  If you would like to know more about Ivey's League click on the highlighted "Ivey's League" in the post - or about preschool - just click on them.  Amazing people are all around US!! This year has been a great year in preschool . Ivey actually goes to two preschools,which most of you probably already know. She goes to a county school and is in a special education classroom two days a week. Then two other days she still attends the same preschool that the boys went to, just regular kids. Both schools are perfect fits for Ivey and in many more ways, Ivey is a perfect fit for them. In the 'regular' pre-k class, she gets interaction with others her age. She can hear what typical three and four year olds do, the sounds they make, the games they play.... There she is just Ivey - I don't stay at pre-k with Ivey this year. I rely on Ivey's League , her teachers and on occassion other parents to tell me about the wonderful things going on in the cl...

Today's the day.  My sweet favorite oldest son is seven.  All I can keep thinking is ... where did the time go?  Happy Birthday to the bestest seven year old I know...well almost seven, you still have a few more hours before it is official and I am milking them for all they are worth.  I'll post a picture as soon as I get back to my computer.

Last night, or rather at a very early 4:00 am, Ivey spiked a very high fever.  We spent the better part of our morning visiting Ivey's pediatrician.  When it comes to physicians, Ivey has the best.  Right now we are trying to determine if this is all related to test results that are pending from Ivey's previous hospital stay at Scottish Rite.  For now we have put her back on a pretty tough antibiotic until we find out more from the infectious disease doctor at Scottish Rite.  Cross your fingers - On the upside, through this miserably high fever, Ivey has not seized.  Amazing!  So if you were Ivey, this is where you would find yourself all snuggled up.  She rides around the house from room to room in her jogging stroller - so I can monitor her for seizures.  The pink polka-dot blanket is her favorite snuggly.  Later on in the day, Ivey perked up a little and we put her hair up into her very first piggy tails!  Sometimes she lik...

The Spring Seedling Braille Books Catalog arrived this week. If you are not familiar with Seedlings, they have books of all kinds from children to adults. It is a non-profit organization. The donations received help produce brailled books. Their goal is to promote literacy for blind/visually impaired children with high quality brailled books at low costs. They are just like the books you buy in Barnes and Noble with the added exception that the brailled story is on each page too. If you are ever looking for a unique gift for someone, especially kids, these are great books to give as gifts. Ivey has several if you ever want to 'read' them. You can go to http://www.seedlings.org/ .   They could make great Easter basket gifts. You could introduce your family to braille with a book about the ABC's! At some point, we will all want to to sit with Ivey and read a book WITH her - and for her, that book will be brailled. Way down the road right now, but we all have to get a...