Breaking The Curse

This year makes our third Halloween with Ivey. We have yet to have her home to dress all cute and go trick-or-treating. Tomorrow she will be the cutest Tinker Bell – ever.

Last year she pulled out her mickey button at 4:00 pm … no Halloween.

The year before she had just been trached… no Halloween.

This past Sunday the port for her g-tube popped out. We have tried to schedule the replacement of her mickey button all week….tomorrow is the only day. Not gonna do it. I have scheduled the replacement for next week. The g-tube port is taped - Praying it stays through the weekend. Breaking the curse.

We are having our first Halloween home. Two and a half years later.

Next week will be a busy week. On top of PT, OT, SLP, GA PINES and all of our other family obligations, Ivey will go to her ENT. Hopefully he will give us thumbs up that the trach site is completely closed. Cross your fingers. That same day we will have her mickey button replaced. Then later in the week I will take her to her cranio facial surgeon. Let's all hope that he will give some insight about Ivey's eyes and the issues that we have been having with her leaving them in.

Oh, and say a little prayer about her seizures. Last week another seizure medication was added to her cocktail of medications. After a few days, rash and vomiting – I realized that the medication had a component that I am allergic to and it seems she is also. So, we have taken her off the medication, leaving her on her current meds without increasing them. And, we are taking her off of Diastat and switching to another medication in hopes that we can by pass the ER in the event of her next seizure. Pray it works.

Happy Halloween…stay tuned for adorable pictures of Ivey's first real Halloween at home with Buzz Light Year and Indiana Jones.

Ivey had a rough day yesterday. Seizures. They started yesterday morning and continued until late into the night. They ended in the ER - after an IV of anti-seizure medications.

She has one banged up right arm from attempts to get blood. When can we transplant my veins into my daughter's body?

Last night I was reminded of how blessed we are to have an extra member in our family that we don't talk about often here on the blog. However, any one around us knows. Christa is one amazing person. She is not just a sitter, but part of our family in an adopted sort of way.

She is my right arm at times. A lot of times actually. Over the years she taken on responsibilities that go beyond what should be expected of her... Obviously she is not your typical college girl. She can man-handle a trach. Run pumps and machines. Work a mickey button. Put in hearing aids and prosthetics eyes. Handle seizures. Once upon a time she even put down ng-tubes. All the while wrestling two little boys. Alone.

No fear. No hesitation. She has always jumped right in....

There is a trust there.........

Now she is nearing the end of her college life and soon will be a nurse in the real world. She already has years on the rest of her class. More experience than imaginable. You want her in your room if ever you are in the hospital.

Did I ever tell you that Christa is the one who taught Ivey to play peek-a-boo? I came home one day and she said "Watch what Ivey can do." She believes in Ivey.

The boys love her. Ivey loves her. We love her. Our friends love her. She is one incredible person.

Christa is one of those little blessings that God gave us. Blessing in disguise.

And she always has another place to call Home - no matter where she is.

This Morning during Physcial Therapy

On film with Bert, Ivey's PT.


How great is that? Standing!

A Big Pink Elephant

The Mother at the Swings is an ice-breaker on so many levels. Good conversation. And, there are many different points of view. It is a subject that should not be so uneasy - Gavin's mom, Karen, once called it their 'big pink elephant' that followed them around….

Not many of us grow up interacting with special need children on a daily basis. I did not. This is a new world for me too.

That reminds me, on several occasions I have thought of writing a book – The 'What to Expect When You Are Not Expecting ….a special needs child'. Personally, I think the book would sell millions……

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Or maybe I should go for one of those 'Idiot's Guides'.

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Meet Me at the Swings

I am working on a mental project right now. Actually the project is formally in the works, but mentally I have to figure exactly how to present various pieces of information about our family and Ivey. It is easy to put information up on the blog, to sift through the day-to-day routine and pick out the pieces. Even the most descriptive of my presentations here falls short of the actual live events, and even those tend to be biased. I try. And I also build walls.

So, I have been thinking about a conversation I had earlier this week with another special needs mama. You would think that I talk to lots of other moms with special needs children, but I do not. It is rare. Even the internet moms I talk with outline their day-to-day humdrum. No, these deep conversations do not happen often.

We spoke about our children, each with their own unique talents. Easy conversation. And then the conversation turned to personal inquiry. Note that this mom and I had never met and I was willing to reveal the dark corners of my mind with out hesitation. The uniqueness of our life dusted off to expose what I normally try to protect and hide from those closest to us.

This conversation made me rethink my own involvement and responsibilities for our life, my attitude as a special need mama. What could I do to open my heart up to those closest to us trying to get in and have a real conversation about Ivey, our family? For many months I have functioned as a mom who screams at the top of her lungs, 'Look How Wonderful the Cover of The Book Is, But Don't You Dare Read What Is Inside' or the 'Today Is Merely a Hard Day, And I Can Do It On My Own' portrayals.

For whatever reason I thought of an article I read a while back. The Mother at the Swings. So I went to visit the site, which I have not done in several months. There I found the last entry. Her son died this summer. He was only a child. More thinking.

I reread The Mother at The Swings. In the article she mentions the tiers that people get categorized into at the onset of a special need birth… For the most part I can not relate to those tiers. Our family is 'lucky' or so we have been told. Literally, hospital staff, home nurses and members of various organizations have praised us. They see in us what most families do not have.

To borrow terms from The Mother at the Swings, they see rocks. New, old, they are all here. And in an unusually large amount at that. As for gingerbread men, they do not really run. That only happens in children's stories. My conversation this week made reference to gingerbread men. I spoke of how hard it was to open up to my friends about trivial moments, letting them know how tough some days are. She reflected that most of her pre-special need friends had left her life. I began to wonder. Am I pushing them to leave, not the other way around? Am I encouraging them to possibly leave? Maybe I am pushing them away with fear and pride. Is it my own fear, my own hurt of watching their children grow and my assumption that they don't understand, can't understand. Maybe in our haste to pull ourselves back together after the birth of our special child, we push those away that see our pain, despite the wall. I am guilty of just that.

In my world, the rocks push back, they have not left. Even in the midst of my refusal, they have stuck. No gingerbread men here only a wall that I have successfully built.

For months on end now, I have grappled with making rocks into gingerbread. Maintain balance. I always fall short. Not a week has gone by, that I have returned phone calls as quickly as I should, or sent that email in a timely matter, or could mustered the energy to make lunch plans. Maybe that is me pushing. In those calls I would have be honest, say today is hard, or know that in person I would break down and cry – oh, I am too strong for that, so I hide. In essence I am pushing away. Making the gingerbread to gobble them up, make them go away, keep confidence in isolation.

My project is my way of preventing so much of this. I hope that I don't stand in the way.

That brings the other component of The Mother at The Swings into play ~ being the mother, and dealing with the other mother. Very Complex. Do my rocks really want to know why playgroup is challenging for me as a mother? Maybe I push because I want to protect them from 'that'. Hidden thoughts and emotions are there with me at the swings no matter how much I love being Ivey's mother, and love learning this crazy new life of ours. Do they want to learn how to ask those questions or be the ones to take those questions if I am not around? How much should I expect them to handle, how deep do they really want to be involved? Being part of our lives will change their lives. Of course, I have not really given them a chance.

All this has really made me think about our new 'project'. How do I let people in, without keeping them at bay? How do I think about the future and all it takes to get us there, all of the wonderful possibilities that lie before us, and not think about a the flip side, a time frame that we could be working in? In her article Special Need Mama's last entry reminded me of that. The reminder that my reality with my daughter and the length of her life lingers. Oh, she is as healthy as a horse today. But deep in the corners of my mind that possibility is there. A thought I never want to think about, but remember in those wee hours of the night.

I want Ivey to be invested in this world, but afraid that if I give all of Ivey away that people will run away. So, I reel out just enough to keep every one interested, but not afraid, enough to let them look at Ivey from outside the glass, yet not get too close. There must be a balance. As with everything else, I am sure it will take time, I just hope not too long.

One more thing I'll miss

Sitting on the Firetruck next to her buddy 'C'.

Things I'll miss one day

This afternoon Walker was helping me to set up Ivey's feeding pump. He loves pushing buttons. And more importantly, he loves to be the big brother in charge, which does not happen as often as he would like whenever Knox is around. Obviously Knox was not here. Anyway, we got the pump set up, I was carrying the pump; Walker was carrying the feeding bag -

he stopped suddenly, looked at the bag and asked "Mommy, aren't we going to make Ivey chocolate milk now?" Big brother looking out for his baby sister.

I wonder what Doctor M. would think about chocolate formula in a j-tube?

Not so much.

Then later in the day the door bell rang. And who should be at our door? In Walker's world, the PBS man! What he really means is the UPS man, but who am I to correct him?

And guess what? The PBS man brought him a Buzz Light Year suit.....

Never mind that some one had to order it.

My kiddos love ToyStory. Why is that?

Remember Knox sang "You've Got A Friend In Me" to Ivey when she was still in the NICU.

So today as we made our way down the isles at Kroger, I had Walker in Buzz Light Year wings. Can you imagine? The grocery store is wild enough on its own -

try it with a four year old in wings who thinks that he can fly.

Buzz may not be so happy come Friday. He is going in to get his tonsils out.

Poor Buzz.

Knox has been lying low this week, which this momma truly appreciates. He is on a mission to earn something he realllllly wants, before Christmas.

Here he is with one of his bestest friends. Two Georgia fans. We start em young around here.

And then there is this wild child.

Can you see the problem in the picture? Notice the location of the feeding pump in the left side of the picture. Now follow the feeding tube to the baby. Not good.

Most of the time Ivey sits in her bouncy seat while she eats. And this is why. She started out under her toy playing with the tin bread pan. Tin pans are one of her favorite things..bread pans...pie pans...etc. She loves them. Anyway, I sat her down, walked to get a diaper and this is what I found. Don't forget she knows that her mickey button can be pulled out. She is not crawling yet, but she can maneuver herself however she likes by rolling, sitting up, rolling again.

And her she is in action. This girl is ready to crawl. It is just a matter of her figuring out that there are things out there for her to get into. We are working on it diligently-who out there thinks this girl will crawl by Christmas? Then again, if she keeps pushing up like that, she might just skip crawling and go straight to running.

Moons...Harvest Moons.... and Thunderstorms

Update II:
We were instructed by our neurologist to take Ivey in to the ER if she continues to seize after we administer her Diastat and if continues having cluster seizures. Do you have Diastat? Once in the ER, they always start an IV of medication, the first typically Ativan. Under normal circumstances it takes three meds on top of her Diastat to get them controlled.

You need to talk to your neurologist and ask him to help you setup a 'plan' for days like this. I would do that today. Then have it with you in the ER. I would ask the neuro. to recommend the order of medications that he thinks would work best for Reagan's seizures. He knows best and that way everyone is on the same page. We were lucky the first few times we took Ivey in to our home ER, they were able to get our neurologist on the phone. Since then, the ER staff pulls up her records and do the same routine each time, because it seems to work.

Ivey's seizures have been lasting one complete hour so our ER staff is getting to know us really well. We have not had a seizure in recent months that has not called for a trip to the ER. I administer her Diastat, but she continues to seize and we head to the ER in a jiffy. Half of the time we are sent on to Scottish Rite Children's Hospital in Atlanta. Are you near a Children's Hospital?

If she is seizing in clusters I would definitely take Reagan in, make sure she doesn't have a bladder infection, ear infection, etc and double check her levels of her seizure medication. I hope this helps. Of course you probably already know all of this and I am merely singing to the choir! It is so frustrating having no control over these things. This definitely is an off week for us too. I hope Reagan gets these things under control - and fast!
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Update I: Yes, I suspect that it is pressure change, especially during thunderstorms.
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Seizures again...

Ivey had seizures again this weekend. We did take her in to the ER at Floyd. Ivey was treated with medication administered via IV then released to come home after observation.

Thank you to the ER staff who treated Ivey, and to all of those treating her in previous ER visits. I am especially grateful for those starting her IV's.

Normally Ivey bounces right back from her seizures. This week she has not. She has been irritable and fussy. Saturday morning Ivey had labs ran looking for infection or some explanation for a breakthrough seizure, all labs came back thumbs up. Today we are watching her closely for infection that might not have been present Saturday or for other seizures to pop up unexpectedly. She just has not been herself the past couple of days. Please keep her in your thoughts and hope for a quick bounce back.

Ivey's seizures have no definite explanation as to 'why' they occur. They are a result of her chromosomal abnormality. We adjust Ivey's medication accordingly with her seizures and have tried various combinations. At this point she should not have breakthrough seizures due to the dosage of medication that she is on at this time. Her levels are good. No sign of illness and no growth spurts.

Here's my question to other parents who have children with seizure disorders. We try to keep note of factors that might be triggering her seizures. For example illness, growth, time of day, her behavior, etc. Most often Ivey is literally playing one second - seizing the next. The only real consistent factor seems to be the moon and the weather. She seems to have seizures more frequently during full moons and thunder storms. Note the Harvest Moon this week. Does this trend seem to happen with other children with seizure disorders? I have asked our neurologist about this. Of course he can not say a definate 'yes' because there is no scientific basis for this. However, the trend seems to be there. Is anyone else experiencing this?

I Win

So far we have not nailed down the eye issue. However, as of this moment, Ivey is not wearing them either. She needs a break, and so do we. Thank you everyone who left advice. We are heeding it all. This is one of those times where we must weigh out Ivey's best interest in light of medical opinion. If she could speak for herself, what would she want? Then again, I think she is speaking loud and clear. She hates those blamed eyes. So do I.

So obviously, I am not the winner in the eye category. But I've got something even better. For my own sake I do not have anything for comparison, so you must all take my word on this……I win-

Not long ago Ivey learned how to sign 'Momma'.

Well, what do you think about this?

Sorry Matt...I Win....That's a 'Momma' if I ever heard one.

Ask Dee, she is my witness!! For the record, Ivey was saying 'Mommma'. But in the time it took me to run to grab the camera and get back she was down to 'Mom'. But Dee was there. She heard it! Don't question it. You can daddy this thing up all you want, but you got the first two, this one is my victory. Momma was first. The girls are sticking together on this one.

I Need Help/Suggestions…….

As of this moment, I am officially at wits end. Hands shaking– light headed from a very generous rush of adrenaline. I don't know what else to do. I have tried everything. So now I am extending this to anyone who may have experience to help me. This is about Ivey's prosthetic eyes. Just five minutes ago Ivey was BLUE – gasping for what little air she could – because she had removed her eyes, both of them, and slipped them into her mouth, where they lodged in her throat. In the past we have made light about it, and this is not the first time Ivey has choked on them; however, today she truly s.c.a.r.e.d me.

I have asked our ocularist, ophthalmologist, members of my MAPS group, visual teachers, therapists and any one else who might have experience or ideas with this issue. Here's the thing, the suggestions that maybe she is bored, needs to be kept busy, enjoys the attention that she gets from us telling her 'no', the idea that I should be able to watch her literally e.v.e.r.y second of the day to prevent this or anything of the latter is NOT the issue we are dealing with at this moment. Yes, I know this is a discipline issue. Unique one at that! How to go about it – well, I don't know. I have been persistent and as consistent as humanly possible. I switch toys, her location, sounds, seating, etc. I tell her 'no' vocally and by signing. We have even restrained her arms, for a lengthy time – that was allowable.

I know that there are times that she is 'bored' and that she turns inward fixating on her eyes, ears or mickey button… But the shear matter at hand is that I can not sit in front of her 24/7 to prevent her from doing these things. Today I was merely standing 10 feet from her putting the groceries away. I am at a loss. My MAPS friends have not had this issue to the extent we do.

I think Ivey is beautiful without her eyes. Matt and I don't need her to wear them to see her beauty. Yes, sometimes is public it is helpful for her to wear them – you can imagine why. It is not helpful in public when she takes them out-again you can imagine why. It is not reasonable to me that she should wear these if it is such a high risk for her choking! Why is the Lord's name should we risk loosing her. Can you imagine making to the place she is today, only to choke on these things?

So here are my questions:

1. I have read the literature. Both our ophthalmologist and cranial facial surgeon highly suggest that skull development, eye sockets, etc will depend on the placement of the eyes. I look at pictures of Grace, and she looks beautiful without them and every thing is proportional. Right?
   
2. What else can I do to keep them in?
   
3. Who else out there does not opt for prosthetic eyes? Has that changed the growth of the skull or sockets?
   

The Fair