Thanks guys! Emma won her concert tickets!

Two Sons

Knox wins the 'Most Likely to be a Cowboy' award
Walker is the forever dare devil in boots (no matter the temperature)

Sometimes I feel overwhelmingly guilty that the boys are not as privileged to have a blog too, one that people check to see their personal progress and accomplishments. I would love to say that Ivey is our only topic, but here in the real world she is not. Life is more complex than Ivey alone. You read small glimpses of our life here. What you read here is so infinitely small compared to things that really matter, even many of the accomplishments you read about Ivey.

You see, the boys are no less than Ivey. They are what people dealing with special needs children call ‘normal’. Here in our home we know that Ivey has ‘special needs’ and we know that our sons are ‘normal’, but that is not how they are treated (to the best of our abilities). Unfortunately, Ivey does, at times, require special medical treatment. That does not in any way underscore that she is more special to us, her parents, than Knox and Walker. Still, the guilt of discerning between children is incredibly weighing. But the thing is, it was like that before Ivey was born. We always wanted to show the boys the same amount of attention and time. It is a battle parents fight no matter the situation.

Often I find that I do not give credit to how smart my sons really are. They know things that most people think they are too young to understand. It is infuriating to watch other people try to water things down for them, or if I explain that a kettle really is black; then the same people look at me like I just told things the boys should only hear at a determined age bracket. I get more upset with myself when I do the exact same thing to the boys. I constantly have to remind myself that they, Knox and Walker, get ‘IT’.

Where Matt and I have ridden an emotional roller coaster for over a year, so have the boys. Not only did Ivey spend her first month in a NICU and almost two months at Scottish Rite, the boys - then 3 and 2 - also spent time without their parents. Even though grandparents and friends were there every step of the way, it wasn’t the same. A mom is a mom and a dad is a dad. Just think, there were days we were home, but mentally we were far away fatigued and exhausted. Still, two little boys triumphed through the entire thing. Happy.

We brought a special little girl home to two very special little boys. I spend my time filling this blog with information about Ivey for adults to understand her, and still many do not. Continually, we go out in to the public for adults to misinterpret that Ivey is a human being capable of love, without pity. Two little boys, now 4 and 2 ¾, have never ever treated Ivey different or ‘special’ for that matter. She is their sister. To them, she's just a sister. They play with her, talk to her, whine when she kicks them, just like any other brother would do with a sister.

The world hasn’t taught them that she is different – yet. Hopefully, by the time the world intrudes into our life, all of you will know the difference too. That being, there are special circumstances but nothing different. In the meantime, we have three beautiful children. They are all three unique and special in their own very special way.

Good news is flowing around here lately. If you haven't checked on Ashley recently, you need to now. Read the new entry into Ashley's Journal.

Let's Catch Up and then VOTE for Emma

Ivey is a busy bee these days. Last week she visited her ocularist and now has her new conformers. It looks like she is sticking to schedule. All things keep on track, and little miss magic will have one more set of conformers and then…..her first set of prosthetics. So before I say this, keep in mind we have developed an odd since of humor these days. There are times we either laugh or cry. Ivey’s eyes have become a subject of laughing more than crying.

So, the big debate right now is…..what color should Ivey’s eyes be? In the great big debate of babies and wondering what color their eyes will be; well, we get to choose. And since Knox and Walker do not have the same color of eyes, we can’t make up our minds. We still have a few months, so plenty of time to figure that one out.

Also, Ivey has become a little trickster when it comes to her conformers. She pops them out constantly. Where I can hardly take them out without concentration, she pokes her index finger in there and out it comes. She is sneaky about it too. She does it when you glance away or she moves her hand up to her eye very slowly; it is almost like she is pretending to sleep. Pop…it’s out. Considering that the conformers are clear, finding them can be an interesting. If someone offers to pick it up off the ground, they never quite know how or if they should touch it. It is comical to watch.

Looking forward, asking someone to pick an eye up is going to be a hoot. Better yet, imagine coming to our door and over hearing us ask the boys which one has Ivey’s eye. I can’t help but giggle just thinking about it. Lord can only imagine one of our friends’ children carry her eyes around during play dates……

Monday I also spoke with Ivey’s geneticist. She called to check on Ivey, but also had great news about research on chromosome 21 deletion. That in itself is another post for a different day. Good exciting news though.

Let’s see… This Friday Ivey will have her G-J tube changed out for a new one. That requires a trip to radiology at Scottish Rite. It is a procedure that takes minutes.

Ivey has also started swaying. It’s that side to side swaying like Ray Charles. She can shake a tailfeather--definately. Just part of her blind world. She also tries to throw herself backward when you hold her or she is sitting. If you happen to be holding her and she does this, don’t let her. It seems like such fun to play with her and let her go backward, but we have to discourage it. Ivey will have a hard time sitting on her own if we encourage it. As we all know, bad habits are hard to break. Group effort here.

Well, seems I have rambled enough. Have a GREAT day.

gwen

ps. Thanks Miranda and Sarah for taking Ivey to the ocularist for me. It was a regular visit for Ivey, but a big step for momma bear to let her go.

IF YOU ARE STILL WITH ME....GO TO EMMA'S BLOG AND VOTE (bacia)!!!!!!! REMEMBER EMMA HAS BILATERAL ANOPHTHALMIA TOO....THIS WOULD BE INCREDIBLE FOR HER!!!!!!

Shrek Yogurt - Speech Therapy - One Green Baby

The Clean Baby-versus-The Green Stuff

On your mark - Get Set - GO!!!!

What is this stuff?

(This is Ivey's SERIOUS look.)

Uggghhhh.

Come on momm

Wait a minute.....

Smells so good I think I will try it in my hair.
What do mean I'll need a bath if I do this?????

Seriously, I'm supposed to eat it? And not through my tube?

Awe mom....

Okay, I'll try it.

Whoo Hoo!

Looks like mom is right again. Good stuff.

Can't let mom think she was right about eating 'The Green Stuff'...

Clean Baby demolishes Green Stuff.

The Happy Green Baby...
The Happy Green Baby trying to get mommy and camera.
Final score....

Well, it depends on your point-of-view.

If you are looking for a low maintenance kind of baby....Green stuff won

If you are looking for progress.....Baby won

If you live in the Sirmans' house........it's a TIE......Just another day at lunch.

Just for fun
This is from a birthday party this past weekend.

Ivey's first official princess party-girls only.

Hoot Owls and {us}

Ivey tends to be a terrible sleeper..........at night.

Ivey is nocturnal and she doesn't really sleep during the day. So what does that make her?

I guess we could chalk it up to several things. One she has to be suctioned, but that happens during the day. Or maybe, that she gets hot from her heated trach collar (HTC). Better yet, she has company all night long. Maybe it is because she doesn't see the sun rise or set. At one point, I blamed it on the LACK of NOISE during the night hours...remember the boys are asleep. I really don't think it is any of the above.

Ivey is our party girl. We are doomed. Our 14 month old is starting a precedent that probably cannot be undone. She does not need or demand sleep. Some nights she kicks so hard in her crib that she wakes me. I just heard her making noise over her trach. If she had her passy on her trach, she would be partying it up in there...loudly. I will show you a picture of that little device later. Well good night all....except for Ivey.

Oh, one more thing. Read about Emma at {us}. She is one of the reasons that I love the internet. She makes me excited about things to come. Emma also has bilateral anophthalmia, but she already has prosthetics. She also has a great imagination, so does her mom. Can you imagine trying to explain fireworks to someone who is blind?

g.

How about 'What Not To Expect When You Are Expecting and After'

Nap time.

Whereas the bi-laws of bringing a baby home are drilled into our heads through books like 'What to Expect When Expecting', we don't quite comply to those rules around here. Rules like 'keep all toys, blankets and pillows out of the infant/toddlers bed just do not apply.

As you can see, there is a tube lying next to her that is connected to her suction machine. It is hard to see, but a tube is hooked into her tummy for feeding. She sleeps on a pillow so that she is on an incline. There are two reasons for that: 1. She still has reflux. 2. She has a trach. The teddy bear you see also has a distinct purpose. He holds her a syringe that is connected to her G-tube for venting her tummy. And the topper of all toppers, Ivey has small hard thingys in her eyes that are small enough to swallow and lodge in her throat.

What do books know anyways?

P.S. The blanket stayed there temporarily. She loves for her face to be covered when she sleeps, so she wraps herself up. I go in a unravel her.