On the heels of the crazy weekend, we're also starting to get anxious about our trip to Dallas next week.
I have been having a hard time thinking about Aiden's upcoming surgery. Dr. Fearon assures us that in comparison to the previous operations, the procedure and recovery for this one is much easier. I believe him. I do. But it doesn't make up for the fact that it is going to be much harder for me this time, emotionally speaking.
Aiden has undergone significant changes since he was born 14 months ago. His hands, once tiny little fists of uncertainty, have been transformed. He kicks and wiggles his soft smooth feet as if to show off his tiny toes. These changes were welcomed. The physical benefits outweighed any anxiety I had about the way my child would be changed forever. Even though I know the physical benefits of this next surgery, the anxiety is winning this time around.
The operation is two-fold. A cranial vault and a frontal orbital advancement. With Apert syndrome comes craniosynostosis, or the premature fusion of one or several sutures in the skull prior to birth. It can cause intra-cranial pressure (ICP) and can inhibit the proper growth of the brain. The goal of the cranial vault is to release some of the pressure (if it is present) and allow the brain more room to grow. The frontal orbital advancement involves, in a nutshell, putting natural material behind the brow bone to advance it forward about 2cm, which in turn provides greater protection of the eyes for these kids who tend to have more shallow eye sockets than normal. More detailed information about the procedure can be found on Dr. Fearon's website, here.
It all sounds pretty terrifying. And when Ricky and I were researching and visiting doctors after Aiden was just born, one doctor showed us photos of the surgery as it was in process. Let me tell you, it was terrifying. But aside from all of that, the thing that breaks my heart the most is that Aiden will forever look different. I'm told it won't be a huge change, and it may only be noticable to Ricky and I. But a change nonetheless.
He will be the same boy, but not as I know him now. His little face. Growing, changing ever so slightly as babies faces do when they get bigger. For 14 months I've looked into the same sweet baby blues, held the same round head full of fuzzy red-ish hair and wiped tears from the same silky soft cheeks.
I know why we have to do this surgery.
My head gets it. My heart doesn't. I'm not sure it ever will...
Please pray for our sweet little boy. And pray for our family during this tough time as well.
April 28, 2009
On the heels of the crazy weekend, we're also starting to get anxious about our trip to Dallas next week.
Last week Ricky and I were trying desperately keep our house clean for a showing we had during the week, and then for the Open House that was scheduled for Sunday. This is no easy feat with two active little boys under three!
My mom offered to meet halfway [between her house in NKY and my house in S. Indiana] on Wednesday afternoon to get us out of the house during the showing, and also to take Ethan back to her house. I was planning on going up there that Friday anyway as I was babysitting my sister's girls on Saturday night while they attended a wedding. Having Ethan stay with his Nana meant I could manage getting (and keeping) the house clean prior to the Open House.
With Ethan gone, boy oh boy did it remind me how much easier it was with just one kid at home! I sure did miss his kisses, reading him bedtime stories and tucking him in...but I didn't miss his mess! You see, I'd also forgotten what it was like to live in a CLEAN house day in and day out - something that is nearly impossible with Ethan here.
Anyway, I drove up on Friday, leaving Aiden at home with his daddy for the weekend. Saturday was spent at King's Island with my sister's girls, Lilly and Avery, my mom, my brother Jeff and his two boys Andy and Ben. We had such a blast. This year Ethan is (barely) tall enough to ride some of the smaller rides in Kiddie Land. Last year he could only ride maybe three, and he wasn't crazy about any of them. But this time he LOVED everything and wanted to do some of the bigger ones too!
Sunday, I packed up the car to head back home - but since we were having the Open House from 2-4, Ricky and I planned to meet at the Louisville Zoo with the kids for a little family outing. Ethan conked out the entire drive and just as I was approaching the Zoo exit in Louisville, he woke up. He rubbed his eyes, mumbled something under his breath and then began vomiting all over himself in his car seat. I was sitting in the left hand lane of a LONG two-lane line of cars waiting to get off of the expressway (didn't know until later that it was $1 Zoo day...) and didn't really have an "out" to pull over anywhere and comfort my poor boy. Not able to get across the lane into the exit ramp shoulder, the only choice I had was to merge back onto the highway and get off at the next exit. I jumped out of the car and got Ethan out of his puke-filled carseat. He was crying and burning up. After calling Ricky to tell him the zoo was a no-go, I called my mom in a panic and asked her what I should do.
Knowing that we couldn't have the boys around eachother as we are preparing to leave for Aiden's next surgery in Dallas next week and can't risk getting him exposed to something that would postpone his surgery, my mom offered to drive down to meet me and bring Ethan back up to here house until he was in the clear.
I made a quick stop at Walgreen's to buy a thermometer, Motrin and Pedialyte before getting back on I-71 to meet my mom. Ethan had a 102 temp. I gave him the Motrin and put a little Pedialyte in his cup. We ended up meeting at a McDonald's in LaGrange, KY. I took Ethan inside to change his diaper when I felt something on my foot. He puked up the Pedialyte and then some. Ugh. He was miserable.
It was heartbreaking having to send my sick little guy back with my mom. All I wanted to do was hold him and make him feel better. But I knew that it was what we had to do in order to prevent Aiden from getting whatever bug he had. And I also knew he was in good hands. He sure does love his Nana!
Ethan is no longer running a fever as of this morning and is able to eat like normal and keep everything down. So I'm looking forward to his return tomorrow when my dad brings him back home. There goes my clean house though! I enjoyed it while it lasted ;)
April 20, 2009
Our family :)
Me and Aiden
April 19, 2009
It was a gorgeous day on Friday and so, feeling brave, I took the boys to the zoo. They were soooooo good and we had such a wonderful time. I definitely think we'll get our money's worth out of our zoo membership this year.
Ethan fell asleep before we even made it to see the elephants. Aiden put up a good fight, but he eventually lost that battle too on the way out to the car. I can't even remember the last time I was able to hear myself think (and listen to my music on the radio) for a full 30 minute drive! :)
Now that I know I can handle a four hour outing with the boys on my own, I plan on heading to the zoo many many times this spring and summer. Especially if Ethan continues to refuse to take naps at home like he's been doing all week. It seems a trip to the zoo is all it takes to pretty much guarantee a quiet ride home.
Click here for more pics from our zoo outing.
April 17, 2009
Yes, Aiden is 14 months old and just now starting to crawl. But don't forget all that he has been through.
This is a huge milestone for us - and for him - who has previously been too afraid of hurting his sensitive hands and feet to put any weight on them to push himself up. We couldn't be more proud!
And oddly enough, his biggest achievement was prompted by a round of vacuuming. Now if you're thinking that once I switched on the vacuum he took off in the other direction, think again. He loved it! He wanted to get to it as fast as he could.
Looks like I'm going to have one clean carpet for the next few weeks! :)
April 15, 2009
[The below post is copied from my other blog: I Heart Mommyhood. I created More Skees Please to keep people up to date on our family, the boys, and Aiden's medical journey. On the other hand, I Heart Mommyhood is a tongue-in-cheek look at the joys of being a mother. I have chosen to make it public, while keeping some anonymity as a writer. I don't use my kids names or any specific personal information - it is merely a creative outlet to write about and share my experiences and frustrations with other interested readers. Feel free to check it out!]
Okay, so how many white lies have you told your kids to cover your tracks on the "basics" in life? I mean, really, you'd be lying if you said you didn't. Tonight was monumental. With the help of Thomas the Train and little babies under two everywhere, I was able to get my toddler to bed without a paci. Wait. I mean without a paci in his mouth and two in his hands. He went cold turkey everyone and I couldn't be more proud. Not since the day I went cold turkey from Marlboro Ultra-Lights in college.
It took a little coaxing. A few "but you're two and two-year-olds don't need pacis". Followed up with a couple "We gave your pacis to Thomas the Train to take to little babies who need them more than you". I know - I did feel just a tad bit guilty exploiting his age and favorite TV-icon to get him to give up his habit. But I'm only doing what's best for him. He'll understand when he's thinking more clearly. You know, in like three years or so.
My original plan to get rid of them was this charming little idea I found in Parenting magazine. Some clever parent decided to submit their story in the "It Worked For Me" column about how they tied their poor kid's paci to some helium balloons and let them go. Genius. I set a deadline of his 2nd birthday for our big balloon ride into paci-less freedom. It never happened. My fault completely. I will admit.
Letting go of this paci addiction is, I think, harder on the parents than it is on the toddler. The thought of more sleepless nights (if this is possible) and fighting on car-rides is too tempting. I have, up to this point, been an enabler for my own benefit. Does that make me a bad mother?
Okay - now stop. I'm normal. I hope. I hope I can say that all parents go through this very thing around two years of age (maybe even three, maybe four?) Maybe the balloon extraction worked for Mrs. Mommy-of-the-year. But for me, it took a couple of weeks of warming up to the idea before I could begin to think about implementation. And if he hadn't have fallen asleep after about an hour of rocking, book-reading and story-telling, my unsure hand was ready and willing to dig into the pocket of my pink robe and present him with the object that he so desired.
Thank you God for sparing me from continuing to feed his habit.
**Update** We are now 2 FULL DAYS without pacifiers! Next up...getting rid of the diapers!
April 14, 2009
Okay, if last night's post was any indication, I definitely needed some time away from all of the "tough stuff" I worry about on a daily basis. I try to stay positive about all of the things our family has on our plate - raising two kids so close in age, going from working full-time to part-time and then to becoming a stay-at-home mom, learning to understand Aiden's rare genetic disorder and becoming an advocate for his health and well-being - it is more than I ever bargained for when I thought about starting a family.
Once back home, reality set back in. We're trying to sell our house so that we can move to a subdivision close-by. I'm looking forward to living in a neighborhood for several reasons, but mostly because I've been feeling a little secluded on our 2.5 acres. Staying at home doesn't provide for a whole lot of adult conversation throughout the day, and even when we spend time outside, we have so much land between us and our neighbors that it isn't likely to "run into" other kids playing outside. Not like I did where I grew up. That is something that I want for my boys. I want them to be able to walk down a sidewalk to their friends house without the worry of cars racing by them on the street. I want them to be in a place where they can play tag in the culdesac until the street lights turn on and I yell for them to come inside. Most of all I want people to get to know my boys when they are little. It sounds a little silly but I feel like if we stay where we are now, then move when Aiden is a bit older, it will be harder for people to, I don't know, accept him. I feel like if we can settle into a family-oriented place where people can meet him in all of his baby-faced innocence, then maybe, just maybe it will help him to build lasting friendships that would be more difficult if he is thrown into a new group of people at an older age.
April 13, 2009
I often struggle with the notion that people, on the outside looking in, think that our family has it all under control. On the surface, we appear to be strong. We come across as confident and worry-free. They think that we've become comfortable with our journey.
I'm not trying to be a downer, really. And I don't want to damper the image for those who look at us as inspiration. But it's a hefty responsibility - both to be a parent of a child with an extremely rare genetic disorder, and to be a source of inspiration to others. Sometimes the two worlds collide.
We're trying to sell our house. Our beautiful, spacious, peaceful house on a great lot in a highly sought-after area. I thought it would be easy to do. But after two weeks on the market, and an offer on a house that will only go through if we sell ours, I'm losing hope. I am not totally convinced that the house we found is the perfect place for us. There are a lot of things that I don't like about it. In fact, there are many more things that I like about the house we are in now in comparison. But the thing that matters the most to me is being in a neighborhood.
I have yet to find a person who meets Aiden and isn't totally captivated by his personality and his smile. I've even had several encounters with kids who have blown me away with their very grown-up, poignant remarks about him. We've been very blessed thus far.
But these many blessings still do not cover-up the fears that lie beneath. I am very afraid of how Aiden will be perceived as he grows up. Will it be difficult for him to make friends? Will he be teased a lot? How will adults act towards him? How will they act towards us? I know it seems silly to worry about such superficial things, but that is our reality. That is the reality of today.
So with our St. Joseph statue firmly planted in the ground, I will go to bed hoping that maybe someone will see a future in our current house so we can start a future someplace else. I truly feel that it will benefit our family, and Aiden, by being in a subdivision. Where Ethan and Aiden will be able to meet other families and kids at an early age, and establish friendships that will hopefully last a lifetime.
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