Rare Disease Day - February 28th, 2010

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.

A sad post

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.

The eye of the storm

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 here in my chair with the computer. It is calm this morning. And after the whirlwind of events in the past two weeks, it is even more so.

So now I guess I can fill you in on the results of Ivey's hospital stay. (This may get lengthy) (I'll leave out detailed detail to try and keep it short...)

Ivey's seizures had steadily increased since November. So her neurologist order for Ivey to have a MRI in January – her cranial facial surgeon also ordered a CT scan, both hoping to find underlying reasons for the increased seizure activity. In the end, on the same day, both the neurologist and cranial facial surgeon called referring Ivey to a neurosurgeon for evaluation. In the meantime, Ivey's neurologist scheduled for Ivey to have a video EEG to try and determine what is going on in that little head of hers.

The Monday Ivey was admitted into Scottish Rite was full of seizures. While at Scottish Rite, Ivey had two video EEG's was seen by an infectious disease doctor and neurosurgeon. Before Ivey's admittance into the hospital, Matt and I had geared ourselves to not go into shock if neurosurgery was recommended. Because of the results of Ivey's EEG, she is not a candidate for surgery.

We went into the hospital with one outcome in mind; we are home with another.

An infectious disease doctor also saw Ivey while she was admitted. For all you Dr. Rogers's fans, he rivals him! He ran blood work. Ivey had very low titers in her blood for things like pneumococcal, tentanus.etc. All she had been vaccinated for and all should have high levels of antibodies in her blood. He revaccinated her and in one month we will return to his office to check for the titers (levels) of antibodies in Ivey's blood. If the titers are not boosted, then Ivey may not be able to produce antibodies. Ivey will need to go monthly for treatment if that is the case. So let's hope those titers are boosted!
In the meantime, Ivey is on antibiotics.

So the results of her EEG were not what we expected. Neither was her response to an extremely high fever and removal of two of her seizure medications while the EEG's were running. Ivey did not have any seizures. Seriously I am still amazed and dumbfounded. But we think it is due to getting her on antibiotics that kicked a nasty sinus infection that probably never went away even though we had treated it. Little things affect Ivey in big ways. Her immune system is not as developed as ours, so we are always over cautious.

The neurosurgeon did see Ivey.  For a couple of reasons - no need for detail right now - he only wants to monitor her, but no surgery for now.  Yippee.

Okay, so now we are home. Since Ivey did so well – not seizing – in the hospital, Ivey's neurologist decided to discontinue two of Ivey's seizure medications. Yes, I'm a little nervous, but so far so good. She is still on two seizure medications.

So we are not where we thought we would be – we are some place better.
She is coming out of the fog of the medications. She is so much more engaged and HAPPY.

For the bad news. While Ivey was in the hospital Matt called and told me our dog of twelve is having kidney failure. She was our dog before we were married, before babies. She made it through the week so that Ivey and I made it home to be with her too. We told the boys that she was dying yesterday. They are making her weekend very special. We are all turned upside down that we are losing part of our family.

This is going to be a long week.

peace

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.

There's no place like home.....

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

The Laundry Room

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 trying to hold in all together in this new place. 

So as we stood there we made small talk...and around here small talk leads to reasons why we are here.  Today I was there with a generally healthy child.  What she saw in Ivey was probably a little more.  But today we didn't talk about Ivey.

Since we have been here for the past week, it seems that life outside of these walls has continued on - Ivey and I haven't really spent much time watching the news - in our room it is the History channel or Discovery channel.  Yeah, I'm a nerd like that. This week it seems there was a shooting in Atlanta where a young boy was shot sleeping in his home. 

Today I met his mother.

I don't know what the media has said, nor do I care.  The woman I met today is living a real life horror story.  It is her reality.  She - however - is holding her own.  She has no other choice.  Her family needs her.  Her son(s) need her.  And from the few details that she gave me - only one thing remains in my mind.  This story will continue long after the media decides it is no longer news.  There is a little boy on a floor above me who needs all the prayers in the world, as does the rest of his family.  Give them strength. 

And I hope today I did for this mom what I have needed so many times.  We chatted - and hopefully telling some of these things to a complete stranger, who was not biased one way or another,  gave her some peace to brave the remainder of this day.  I also hope that Ivey and I slipped out of there leaving her enough time to do a normal chore - alone - undisturbed - to do and be whatever she needed at that moment.  No phones, doctors, nurses or the unknowns of her son staring back at her.  No media trying to talk to her.  No family waiting at home.  Just her alone with the laundry...something methodical -

When Ivey and I returned for our dried clothes...she was gone....

Please keep her in your prayers +

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.....

Is It A Snow Day?

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 that is about all I know.

Oh almost forgot. Her breathing is not as labored as it has been for the past two days. She is on her normal breathing treatments with a little cpt.

As always, the nurses and staff, and Ivey's doctors are incredible. Ivey's sweet day nurses have worked hard and her night nurses have been super. Right now a nursing student is sitting in the room with her so that I could run down to the lobby, get coffee, something to eat and go look at the sunshine for the first time all week. I have left the room here and there to wash a load of laundry, wander through the gift shop for a break, and down to the caferteria, but this is so nice being able to sit down to a different brighter view for a moment. I told her she was my early birthday present. I don't think I could ask for any thing better, except for the obvious.

Oh, and right now I am not sure when Ivey/we will come home. Definately not today.

Thank you all for thinking about Ivey.

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.

The Terms of Agreement

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 Scottish Rite.  Well, at least I didn't have to drive. 

Today electrodes were glued and gauzed to her head - along with this sleeve-like thing covering the gauze, add to that tape around the sleeve thingy.  She still managed to half-way take the sleeve-thing off.  She will be monitored (EEG) for the next couple of days.  A couple of her seizure meds have been reduced, and for the first time ever we are actually hoping for seizure activity. 

Now I need to let all those people who graciously agreed to help us next week know that we are issuing a rain check.  We are here this week instead. 

I'll update more when there is a chance -

And the glory of time in the hospital....I have full control of the TV remote. 

I miss my boys back at home (I joyfull do not miss sharing the remote, watching Disney) but I reaaly miss them.  Sweet dreams guys.

The Belle of the Ball

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

A Sparkle

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.