BOO

I have a very bad habit of comparing where we are today to where we were last year at the same time. I don't know why I do this. I am not proud that I have this nasty little habit. It's not that I am reliving the past or hanging out in our past. I think I do it so that the past is the past and I can wallow in how great our present is.

Undoubtedly, I have compared this past week to the same week last year. All I can say is - paperwork was being prepared by our nearest mental ward for my admitance.

Ivey went to her trach clinic last Friday, just one day shy of her 1 year anniversary with her trach. (It was also one day shy of Georgia's awesome victory over Florida...Go DAWGS.) As I told Cammie on our way to Atlanta to Scottish Rite, we were praying for good news. That is exactly what we got!!

Come this Spring Ivey might get her trach out!

Now it is great news, but it will require a lot of hard work on Ivey's part. In the next three months, she must accomplish wearing her passy miur valve all day. Then if she accomplishes that she can begin cap trials. If that is successful, she must pass sleep studies. (I'll explain all the terminology later.) With a lot of hard work, TLC and extra prayers, she can do it. I just know she can!!!

Now back to this same time last year. Ivey was in the PICU at Scottish Rite. The sweet nurses there dressed Ivey as the green Tellatubby. So sweet and I cannot find one picture to show you. Anyway, as sweet as it was, it still wasn't the same as being home and our holiday season last year was tough. So tomorrow will officially be Ivey's first Halloween with her brothers! I would like to say I was creative with her costume, but no, not so much. Her brothers and Dad had more say so in her costume than I did and I am not about to rock the boat. I seriously doubt it will suprise you when you see her.

As excited as I am about tomorrow and kicking off our first holiday season with Ivey home, my heart aches for sweet Ashley and Trish. They were many many many miles from their home away from their family last year- just the two of them. Again this year they are back in Omaha. So please send them your love and encouragement. I can not begin to imagine being in that same place scared and uncertain again this year.

Happy Halloween-
Gwen and Ivey

Since so many people wonder....

and we did too, we will show you some pictures. No they are not round like marbles, they are shaped more like a shell, concave. The conformers were too, but it was almost impossible to take a picture of them since they are clear.

Ivey's eyes come out. I take them out with a little blue suction cup or she can pop them out herself. She has not attempted to take them out yet. I wash them with soap and water and put them back in.

We don't mind sharing these pictures because we have all been curious about Ivey's conformers and prosthetics at some point.

My favorite part of Ivey's new prosthetic, she sleeps so peacefully. She can sleep with her eyes completely closed for the first time since she left the NICU many moons ago. No more little knobs sticking out.





Pictures courtesy of Lowery :)

Playtime-

Our miracle.

Get ready this is a long post……but I have so many things to say…..

I have to admit that I am amazed to read so many responses left for Ivey. I am even more astonished at how far across the world she has traveled via the internet. It is humbling and I am so grateful to have the opportunity to share my sweet girl with you all. She is a miracle – literally.

As Ivey’s mom, it has been exhilarating to share the excitement of Ivey’s ‘new’ eyes with everyone. Her beautiful green eyes have come at one of the best possible times. I know that everyone is happy for her; however, I have done a poor job of explaining ‘why’ we are so excited about her eyes. You see, if you are new to Ivey’s life, eighteen months ago when she was born, she had a pretty rough start. And for the past year or so, she has diligently battled several medical complications and hospital stays. This past April, Ivey turned one and we had a HUGE celebration. We celebrated her life because medical opinion suggested that our Ivey would never live to be one. That small feat, living, has been only one small accomplishment that contradicts medical statistics when it comes to Ivey. Again, she is a miracle.

As most of you recall, Ivey was a surprise. We never suspected any complications until she was born. Her life began with much trivia. A cleft lip and palate, heart defect, microcephaly, a thin corpus callosum, severe contractures, anophthalmia, and other small things here and there were unbeknownst to us in the beginning. As time went by we began to learn more about her diagnosis, which is extremely rare, mostly from our own experience. Miracles do happen. You have witnessed Ivey in pictures and video contradicting assumptions about her. Chromosomes may be small, but they are packed full of punch, but no one knows a definate end result. Part of Ivey’s 21st chromosome has been deleted, which leads us to where we are and her future.

In the beginning of this journey with Ivey, we were subject to many unknowns about her and her diagnosis. Not one of her specialists has ever been privy to experience this particular diagnosis, and we have some very experienced – great doctors. So, most of Ivey’s future is up in the air; anything is possible, and she is exceeding all of her expectations that appear on paper. Once again, she is a miracle.

Some of you may remember the days when Ivey had an ng tube running down her nose to eat, which she loved to pull out. She threw up constantly because her stomach is smaller than average and we were constantly forcing food down her trying to sustain her. For a while there she was considered as ‘failure to thrive’. Her stomach has not changed, but now she has a g-j tube (or mickey button) in her stomach. All of her feedings are pumped into her J-tube bypassing her stomach, thus, no more throwing up and no more failure to thrive. Ivey will also have mental and motor delays resulting from microcephaly and her thin corpus callosum. There is no means to determine just how severe her delays (mental retardation) will be. HOWEVER, Ivey has already surpassed any speculations about her development. She has accomplished more in one and a half years than she was expected to accomplish in her lifetime. So as for milestones, that is why we go overboard. She wasn’t supposed to meet those goals at all. And as for her heart defect, we forget that she even has one. Oh years from now we will deal with it, but for now it is completely in the back of our minds. We visit her cardiologist once a year, and keep going. I would say that pretty much brings us up to speed on everything except her trach and eyes.

Next week marks one year with her trach, October 27th. The trach came completely out of left field for us. In one since, it is a God send; in another since, it is the hardest and biggest thorn ever in my side. Most people have never seen someone with a trach let alone experience everyday life with one. All I can say is that they are constant, non-stop, upkeep. Subconsciously, I listen for Ivey’s cough and sounds of distress, even in my sleep. A tracheostomy is plain ole hard work. I can not imagine what it would be like to be the one with the trach. Nevertheless, Ivey’s trach saved her life. The ENT said a couple of more weeks without it and Ivey more than likely would have died, and there would have nothing I could have done to stop her death. So last year, miraculously, she could not be intubated for her cleft lip surgery and received an emergency tracheostomy.
Her life was saved.

One year later, Ivey is doing awesome with her trach. Just yesterday she pulled it out and silently laughed. I do miss her cry and much of her laughter, a trach silences a baby except when she has her passy miur valve on, but we take the good with the bad. The doctors suspect that we will begin the process of decanulating Ivey (removing her trach permanently) come spring – after sick season. That brings us to Ivey’s eyes.

God gave me Ivey. Who am I to change her? But I have allowed it. Over the course of this year, Ivey has undergone several surgeries. The hardest thing that Matt and I have EVER done is hand our baby girl over for surgery. The moment where the nurse takes her from my arms is excruciating. Each time that it has happened, Ivey has been an extremely medically fragile little girl. We did not know if our baby would come back to us. Ivey survived her lip surgery, palate surgery, tracheostomy and insertion of her mickey button, but we did not know if she would make it home. But, she did. A miracle.

Ivey’s blindness has been a less consuming part of her diagnosis. Oh, we are worried about doing all the right things to help Ivey excel in this world, and her blindness is who she is. Ivey’s life is not challenged because she is blind or because she is missing that particular organ. Yeah, remember, she is missing what most would consider a major organ. Ivey can live without her eyes. So, we move on. Thank the Lord we are through with conformers.

Ivey's eyes are a moment in time associated with happiness. {No pain, hurt or fear exists}

For me personally, I got to experience a pseudo-moment with my baby girl. As a momma, the first memory I have with my boys is the moment when they were placed in my arms all wrinkly just seconds after birth. The moment I looked at them and they looked back at me. A year and a half later, I got that pseudo-moment. Oh, I know Ivey can’t see me, but there was something about looking down at her that reminded me of those moments with my sons. It reminded just how much of a miracle she is. And, she is a miracle!

Why green? Simple. My eyes are green.

Too many to choose from...WARNING..you may become dizzy from all the motion

I added four slideshows

Daddy's Girl

My Sweetpea

Thank you all so much for taking time to share this milestone with our family. It is so great that you all are a part of our lives just as Ivey is a part of yours. And yes, I will give our reason for going with green. As soon as I get all of the pictures downloaded I will post more. There are only 300 or so to choose from!

If you haven't left Ivey a comment, please do. Someday when she is older she will marvel at the love and prayer that surrounds her - in all the moments of her life.
gwen

BEAUTIFUL GREEN EYES........

She got them!!! Be back soon.. gwen

Redirecting my 90%

What would you do? How long can you smile and turn the other cheek? Why does it have to be so hard at times? Why can’t we be left alone – at least part of the time? Why did I let my guard down? Why didn’t I put my game face on? Why can’t we have one day – just one day – to our selves? Will her life outside of our fortress always be a stage?

Wow. I started this entry last night. It was late. I was tired. Luckily, I shut off my computer not too long after our nurse arrived and stared at the TV for a little while trying to regroup. Finally I went to bed.

The top paragraph is proof that all things are better dealt with after sleep.

I do keep a journal. Some things make to Ivey’s blog if they predominantly concern her, but most of my thoughts stay tucked away.

Lately when it comes to our little world around here things have been average. Like any family we have the good days, the yucky days, the irritable days, the fun days, the busy days, but mainly they are just ‘normal’ days for life with three kids. You know – I often wonder what the FedEx man hears when he sneaks to our door to drop off a package. Anyway, I (we) have become accustomed to life with our three sprouts – they are nothing but ordinary. Well, take that back I think they are extraordinary, but I am a little biased. I am loosing my point to this; let me redirect.

Even though this life that we are in is plain ole’ normal for us, there are still moments that have the capability of breaking me. I have tried to keep them in the pages of my journal. This is very hard to put into words – its one of those emotions that you can’t quite describe, but it is there everyday of my life, and I NEVER experienced this emotion until Ivey was born. It is a lone emotion that stems from having a special need child. I think parents with special children will understand, and others with special needs family members or friends can identify, but even that is still different.

If you know our family then you know that Ivey is not a child who is harbored in our home. We take her everywhere we go, no matter what. Nurses that have come into our home have often commented about how happy they are to see how we care for Ivey and incorporate her into every aspect of our lives. At first I was taken back by those comments, but the longer I walk this journey I understand why they comment on this. The reality is that many children like Ivey are often forgotten and excluded; they remain home and miss out on Life. Not my Ivey.

I have a game face. You know the one – smile, hold your head up, and grit your teeth, no matter what punch or play is called. Hide the emotion, and what ever you do don’t let them see your weaknesses or your pain. The internal struggle within the game face is mentally draining. Like it or not, that is what I do when ever Ivey and I go. When we go as a family the game face is almost nonexistent, Matt is there. When Ivey and I are out with friends, they act as a cushion, yet I still feel the pressure to have the ‘it’s the way the parent handles the situation’ game face. When it is just me and my three companions, the boys add in a certain distraction. However, when Ivey and I go alone it is up to me to respond and make right and good decisions. I hate sounding weak, but sometimes it is hard.

A couple of days ago my friend Lowery read quote to me that I had read before, but had long since forgotten about. It said life is 10% what happens to you and 90% your attitude. I must remember this and redirect my attitude. I must teach Ivey that she is in control of her 90%, not their 10%.

You see, yesterday I left my house without my game face. I was too excited about our girls’ day together – one of our first. It was one of those days mommas dream about with their little girls. So, I had my genuine smile, not my game face smile.

First, Ivey was going to her first cheerleading competition. I was so excited. I would be back at the school where I taught and coached; I could watch the girls compete; Ivey could hear some loud music and enjoy a new environment. Most importantly, we were going to support my best friend – Ivey’s godmother. Ivey’s godmother is one incredible coach and we wanted to be there for her. So we went – just the girls – to a girly event. My guard was down.

There we were surrounded by people we didn’t know, some from here; some from there. Either way, they did not know Ivey – so there was some staring, which is normal. There were many ‘Oh, poor thing’- just part of this normal life. While standing in the middle of a crowd some teenage boys (not from here) walked by, looked at Ivey and said ‘What the h_ _ _?” I wasn’t ready. I found myself fighting back tears. Instantly her future flashed before my eyes. {Her teenage years} What hurts the most is that Ivey may be blind, but she is not deaf. Eventually, she will know the statement was directed toward her.

As a mom I hurt for her. I don’t want her to be any different than she is. I do want her to have normal experiences. I don’t know how to exactly describe what I want for Ivey. I do want her to be happy, and she is. I want her to feel loved, and she does. It amazes me that she gets a certain response from people, yet they fail to see her accomplishments or the fact that she literally wakes up every morning with a SMILE on her face. Every morning! Everyone could learn from her.

Selfishly, I want a day where my heart doesn’t hurt for her.

Some people will have advice like ‘you have to deal with it’ or ‘don’t take it personally’, but those same people have never and will never experience their child being the one ridiculed – on a daily basis – for being different. I do deal with it. However, that does not take the sting away. And in the future, how will I heal the sting when it affects her – when she knows that the questions are because something is different about her, yet she can not even see the difference? Will she have friends, her own friends, who will stand with her and let these same things that hurt me bounce off of them without hesitation?

Those few seconds yesterday hurt, but they did not stop our girls’ day. We went on. What kind of mother would I be if we didn’t go on? What kind lesson would Ivey have learned if we ducked our heads and went home? I have waited for a long time to share special moments with my daughter, just like my mom and I did. We went on to window shop downtown. Literally, at every corner there was someone who knew Ivey, speaking to her, touching her so happy to see her. They reminded me how blessed my little girl is and how great this world is just because of her presence.

Last night I was hurt and confused and allowing a few short seconds to dictate my attitude, my 90%, and Ivey’s life. Today I see that Ivey will be fine. There are so many people who love her and will protect her along the way.

A big day is near

I am so excited that I don’t know where to start or what to say. After all these months Ivey is almost there – just a few more days.

Well, I guess I should backtrack for a second because you have no idea what is going on. This morning Ivey visited her ocularist. And yes, she has now been fitted for her prosthetics which is one amazing process and such a gift that someone out there enjoys making little eyes for people.

Back to the point, Ivey’s molds have been made. Now we wait for the prosthetics. All things going as planned and her ocularist, Mr. Herndon, will mail them to us Friday. That’s right, mail them! There’s something incredibly funny about that.

So keep checking back. This is a big day. They change her appearance so much. A milestone is fast approaching and this will be a big page in her book – so once she has them, I would like for everyone to leave her a comment so that I can read her the names of all the amazing people who love her and keep up with special moments in her life.

What color are they? Oh, you’ll have to wait and see for yourself!!

Gwen+

ps.
I read this great article today. As excited as I am for Ivey, I am just as excited about Knox and Walker. Knox practiced hitting a baseball as I pitched to him, and he did great. Knox has a fever today, but he sure is tough. For the most unusual milestone, Walker got it this morning that he is a true Southerner. He kept saying things like "Ya'll look" as he spoke to me and Matt. Just yesterday he was still saying mom and dad; today he figured out the true southern plural. This post will give you a glimpse into Knox and Walker's world or it might give you a glimpse into your own child's world. Our children are to be commended-for just being themselves. Go HERE.

I guess you have noticed that I have been posting a lot of pictures and videos lately. There's a good reason. Ivey has her own story to tell; she doesn't need me to do it for her. She is quite an amazing little girl accomplishing feat after feat. Like they say, a picture is worth a thousand words.

Up on all fours. It is now only a matter of time before she crawls.

The fair 07' - The boys on the Dragon

Ivey's first ride on a pony.

And now for our newest videos.
Ivey is diligently trying to sit on her own. This morning Dee and Walker were doing their best to encourage her.

This is the battle we are trying to win. Ivey loves to fall backward. She thinks it is a game, once she gets this under control she will be sitting on her own. If anyone with a blind child or experience with a blind child has a suggestion that will help us tame this little habit she has, I would love to hear from you.

This past weekend we took the boys to 'The Game'. Of course ya'll know what I'm talkn' about.....

Here is a link to a picture taken of Walker at 'The Game'.

Walker at 'The Game'.