You Can't Sit With Us!!!

 Anyone my age knows where my title comes from. I swear I can quote the Mean Girls movie word for word, and frequently use those quotes to express myself, sometimes on a daily basis. For those of you who don't know the premise for one of the best movies in the whole world: New girl enters school, the mean girls change her to fit their group, new girl realizes it's a pretty crappy group, chaos ensues. You'd think the mean girl thing would end after high school and people magically mature and become super cooperative adults, right?

Wrong. Women (and men, although in my opinion, not nearly so much) deal with this at work, at the gym, and even online. What's worse, is that special needs parents are sooooooo entirely guilty of this also and don't even know it! I am guilty too. I am guilty of thinking to myself "Quit your whining about ________, we have it so much worse". I'd never actually say that to anyone, but I totally think it. I recognize it's wrong, which is step one to solving the problem, right? You know what else we do? Anytime someone vents, we automatically say "Oh yeah, Callie did that and, and, and." Wait, did I just change the subject about your child to my child? Yep, I did. And I for one am sorry for the habit. It's one I've worked very hard to break. Instead, I remind myself to say "I am so sorry you're going through this" because that's what those moms want to hear, what they need to hear. Not some competition about who has the neediest child, who had the most surgeries, etc.

I read through some comments today referring to cliques within the special needs community and I can't say I disagree. I've personally never felt like I fit in anywhere, but everyone has been pleasant to Callista and to me. But there's always a sense of importance assigned to some, and for others we just hang out in the background. Some have their questions ignored, others get ten thousand "likes" on their photo *exaggerated for emphasis*(not that that defines you, hopefully!). How the hierarchy is decided is beyond me, all I know is I'm not in it ;)

I know it's hard to not worry about what others think of you, and at this very moment, I am doing it! I am doubting whether or not to publish this blog for fear of offending someone (none meant) or someone automatically assuming it's about them (it's not about you, I promise). It's just based on observations I've made after seeing a friend feel abandoned online by women who should be building each other up instead of making frienemies. I challenge you, female members of society, to work on complimenting your fellow women and practice your "reflective listening" even if it's only online.

As for me, I compliment every single SN mother who has ever touched my life in some way. I know without you, without those groups, without your many beautiful blogs and pictures, I wouldn't know half the things I know today and my heart (and friend list!) would be very empty without you.

Everyone can come sit at my table!

Gastric Content

Last week's entry was so eloquent. I apologize in advance for the chopiness of this one LOL.

Callista had a gastric emptying study done on Monday. That was an experience I hope we do not have to repeat. Our poor baby has had such an increase in vomiting with every feed over the last few months. We are almost on continuous feeds through her tube just to get her to keep enough down to stay hydrated. For the test, they said they had to dump in one feed for her within 2-3 minutes. I informed them she would throw up. They said tough luck, and she threw up.Callie had to lay there for an hour as they took scans to trace where her food went and how fast. She cried. And cried. And cried. But there was very little breath holding so I am thankful for that!

Fast forward to yesterday when I got the call for the results. She has.... *dramatic pause*..... severe reflux. Uh, yeah? She has since she was born. What's worse? They couldn't tell me any results from the actual emptying part because (are you ready for this?) "The test was inconclusive because she vomited." Shocking, isn't it? We wasted four hours of our time doing a test we apparently didn't need and put poor baby bug through torture. I think it's time we moved on to another GI specialist, as this one is officially out of chances from this mommy.

Four days in to this summer's layoff and enjoying every minute of it, well, expect for Monday's trip and test! I'm looking forward to making this little munchkin work her butt off and make some progress! Lately, she's been doing much better with her head and trying to sit up. We got her wingbo swing in the mail yesterday so we will be practicing our crawling stance as well. We're also still preparing for the benefit and counting down the days to a yummy lunch and lots of great prizes. Last but not least, we're also keeping busy with T shirt orders. If you're interested in ordering, come visit our facebook page or message me :)

Have a great day, back to folding never ending laundry for this lady!

Mother's Day Muck

Happy Mother's Day to me... Friday we took Callie in to NCH because she was throwing up everything. They checked her shunt through x-ray and MRI and the results showed stable. By the time we got out, she was doing better. Yesterday she did fine with slower feeds. Today is a different story. Our morning has involved puke, puke, and more puke. She had some coffee ground emesis this morning, so I switched out her formula for pedialyte. Since then we've done much better as long as she doesn't move. Usually when we get the brown yuck it's after she has worn out her esophagus. I'm trying very hard to treat this from home, no one wants another stay in the hospital! Poor kid... Needless to say, our mother's day plans changed! Lucky for us, my daddy has volunteered to be the grill master today and cook out instead of eat out. Let's hope Callista gets over whatever this bug is soon!

Of course, what better day than today to give a shout out to our mommies. Both of our moms have been incredibly supportive of us throughout our lives and especially the last year and a half. We are so lucky to have two great women as influences and cheerleaders.

Some moms have the typical path to follow while others are forced to take a rougher road. But all moms have struggles and hardships and tough decisions to make. We all fight with ourselves about whether or not we chose correctly, did the right thing, are we a good mom? Enjoy the day and each second you have with your children, special needs or not, because that is what being a mom is all about.

When Life Gives You Lemons...

Squeeze them into the face of the one who have them to you! Oh wait, that's not how that saying goes... Oops.

Well, we've just been handed a whole basket of the suckers as of yesterday. Her MRI was supposed to just be routine. They tried a tube too big for her first and couldn't fit so they had to go to a smaller size. They informed ENT and of course whenever they get involved, things go crazy and get blown out of proportion. They did a bronchoscopy which showed nothing. So instead of being outpatient we ended up staying the night in the PICU. They said she had a hard time breathing after those things getting shoved down her throat (uh, are we surprised?). She was back to her normal self in no time as soon as everyone stopped messing with her.

Then we got news from the MRI. My poor baby is going to need another surgery. Her MRI showed that a syrinx has developed all along her spine. This is fluid where fluid shouldn't be. There are three main things that would cause this. One: her shunt isn't functioning at full capacity and instead of her head swelling, the fluid is being pushed into her spine. Two: the fluid is still blocked somewhere at the base of her skull. Three: she has a tethered cord. Thankfully, the first one is the most likely indicator which as the easiest fix. It's preliminary but our neurosurgeon came in this morning to say that a shunt revision is most likely the plan. If that doesn't work Callie will have to undergo another decompression surgery or a release of tethered cord, although he is doubtful it's tethered cord.

We are really hoping the shunt revision helps, because another brain surgery is huge... A blow like this is hard to take since we thought things were going so well. She is making progress (however small) in pt/OT and for once life was going okay. We get lemons practically thrown at us every time we turn around. Sometimes the events in life that aren't so great outweigh the ones that shine. My husband and I are trying so hard to not let this happen. It just gives you a lot to think about. I feel like noting the disclaimer again that these types of problems don't happen with every SB kiddo, we just seem to keep getting the worst of the outcomes.

Once things are a little more certain I will update everyone. As always, we appreciate all of you following our journey, those who share our blog, the loving comments we get on our facebook group, etc. Each view, ad click, and use of the search bar also contributes a small amount to Callie's account and we are so ever thankful for that as well. <3 We can't get through this without you and your good thoughts. We LOVE you!!

Bubble = Popped

It's been awhile, but today I did it. I had myself a pity party (balloon free, of course). How can you love your life so much and hate it at the same time? I love Callista, she's perfect in every way for me. I know she's different than other babies, and I make it a point to stay away from places where there are going to be babies... I like staying in my "Callie Bubble" where all I see is her development, her growth, her milestones.  But today all the imperfections in my little bubble were pointed out to me by life in general.

It all started with the MRI phone call and the list of what I like to call "the no questions". Because our answer is almost always no. After all the technical questions, (surgeries, med changes, etc.) we answer:

1. Can she sit up? No.
2. Does she eat anything by mouth yet? No.
3. Does she hold toys? No.
4. Does she have feeling in her legs? No, not for the most part.
5. Is she mobile? No.
6. Does she babble? Yes. (Score!)

Overall result: the no's have it. Way to rub it in, thank you. What does this have to do with an MRI? I'm already nervous enough about the sedation!

The second thing happened inadvertently through conversation with some lovely visitors at work. We were talking about my work in disabilities and encouraging parents to be advocates for their children. The lady I was working closely with asked me how my daughter was today after seeing her picture in my office. The talk around the table turned to children and another woman made the comment something to the extent of "I can't imagine having a child with a disability. I have a daughter. All I had to worry about was if she'd grow up to be a ballerina, but she played softball instead." Most moms won't understand but those words wounded me. My daughter will never be a ballerina or play softball... If you can't imagine having a child with a disability, there are many mothers out there who have children with varying degrees who can enlighten you. Having a child with a disability is: endless doctor visits, physical therapy, occupational therapy, surgeries, clinics, check the shunt, have an MRI, convince the person in charge that your kid needs bracing. Rinse, repeat. Squeeze your spouse in somewhere and if you're lucky, find a few hours of sleep.

Normally I could take these things in stride. And then I held an adorable little tiny baby. Yep, I broke my rule and hung out with a baby. But she was so darn cute! And her little ears were pierced. And she smiled at me. And I held her. I was fine, it was good. Until I was stupid and asked how old she was. Three months.... Three months old and light years beyond what Callie is doing. I cried. It's so ridiculous, I know. But the tears came, and I had to give her back and leave. I think it's the moment where you come face to face with things you'll never have that make it hurt.

So yeah, I had "a day" and I will be over it by tomorrow. I am certainly not proud of my lapse in mental status but hey, it happens. I will really feel better after spending some good quality time with my little monster next week. Other babies may be developing faster than her, but no baby will ever be cuter than her ;)

The Butterfly Story

In lia sophia, we always hear "butterfly stories" from women who've come from nothing, who now have more than they ever dreamed of. The original butterfly story goes like this:

"A man found a cocoon for a butterfly. One day a small opening appeared, he sat and watched the butterfly for several hours as it struggled to force its body through the little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther. Then the man decided to help the butterfly. 

He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings. It was never able to fly. 

What the man in his kindness and haste did not understand, was that the restricting cocoon and the struggle required for the butterfly to get through the small opening of the cocoon are God`s way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes struggles are exactly what we need in our life. 

If God allowed us to go through all our life without any obstacles, that would cripple us. We would not be as strong as what we could have been. Not only that, we could never fly."

So today as I take another day off work to digest the news and to recuperate from the poking and prodding, I decided to change the picture here to a butterfly. Because I'm going to be one. We're going to struggle, we're going to hurt for awhile, but in the end, it'll be a beautiful thing that emerges from the whole situation, no matter the outcome. (Can you tell I'm feeling more like myself today?)

As I eagerly await the results from our amniocentesis (painful, by the way) I'm reading more and more about in-utero surgery. I know it's going to be a long road ahead of me, but some pain and up to 20 weeks of bed rest seems to be worth it at this moment in my life. And a big thanks to my family and friends who are so supportive. Casey and I love you. And I'll probably need some of you to clean my house for me in the future, lol. 


 

Our little girl

Today was an extremely hard day for my family. We found out that our little one has Spina Bifida in the lowest part of her back. This is our first child, and all sorts of things are running through my mind right now... Where do we go from here, what's going to happen to her, what problems will we face in the future, will she be healthy? But mainly: what did we do to deserve this? To us, it seems we did everything right. We got married, then we got a house, then we decided to start a family. We consulted with the doctor, I took a million vitamins to get my body prepped, and we had all the serious discussions about parenting. All the right way, the way it's supposed to happen.  So you'd think we'd be the perfect parents of the perfect baby. We'll still have a wonderful baby, but there's such a long hard road ahead of us. At this point, I've cried for as long and hard as possible, and now I'm just beginning to feel bitter about all those moms who didn't even want or plan for their babies. I know it's wrong, and I don't intend to hold a grudge, but my grief is just progressing through the normal stages. Why, when we tried so hard to do things the right way, do we get something this awful? I was enjoying my pregnancy, but now it's a dark spot in my life and I don't know if I'll ever overcome that. This news literally sucked the light from what's supposed to be a joyous occasion for a husband and wife.

I'm going to try really hard after today to look more positively on the whole situation. There's no doubt in my mind that we'll love this baby girl more than anything in the world, but to help myself (and maybe eventually others who are in this same spot) I've decided to start a blog. Trust me, blogging has never been an interest of mine, but now, it's such a great outlet. It will also let me get out all my feelings, as well as share with anyone who cares to follow all at once, sparing me the repetition of a very heartbreaking journey.

So for my future daughter, Callista, here we are.