New Year Two Year ;)

This is a video of Miss Callista's two years, just in time for the New Year. Her birthday isn't until the end of January, but I figured there was no better way than to end 2013 with ten minutes of Callista ;)

http://www.youtube.com/watch?v=ZxX257r-CsU&feature=youtube_gdata

Apparently I felt mushy today, since both of these aongs make me get teary eyed without even seeing a video to go with it. Sorry in advance for that! 2013 was a little rough for us, with several pieces of bad news, two surgeries (one of which was major), our neurosurgeon leaving, huge life changes, and many obstacles to deal with. Here's to 2014 and meeting those milestones we've been looking forward to. 

Hopefully this link works!!!!!! Happy New Year everyone <3

Follow Up MRI

It's been almost five months since Callista had her second decompression surgery. Tomorrow is the day we find out if it actually worked. We are scheduled for a full brain and spine MRI bright and early. They will be checking to see if her syrinx has gotten smaller and reviewing her chiari malformation. Please pray that these things look better. If they do not, there are only more serious options for us to consider and I cannot imagine putting my sweet girl through another surgery so soon.

We don't have any reason to believe that this surgery did not work. Callista is doing so much better lately. She is happier, stronger, and more awake than she ever was before. But we've never had an MRI turn out well, so my mommy nerves are a little on edge. Plus, it will be our first experience with a new neurosurgeon, although not our new neurosurgeon. I just want things to go smoothly tomorrow so we can move on to our happy Christmas celebrations. The uncertainty of everything is what bothers me the most. With spina bifida, none of us are ever sure of anything. Another mother put it so beautifully in her blog that there is no black or white for us. We only have gray. No one is able to tell us how life will look like a year or two down the road becuase every single one of our children are different, no matter the lesion level, the surgery options, etc. You have to rely so much on waiting and seeing. Wish us luck!
 

In the real world, equipment is slowly accumulating. We were so excited to purchase the chair for Callista that she is sitting in a few months ago. It helps give her just enough support to sit up but be able to relax if she needs a break.

 A few weeks ago we also finally got a stander for the little monster. Because Callista cannot bear weight on her legs, she doesn't get the opportunity to strengthen those muscles. By using the stander, we can encourage muscle building, bone growth, and trunk control. It also is helping a lot with her head. She loves being in it, in case you couldn't tell by the huge smile on her face! On the 30th, we take her to get her final fitting for her leg braces. These braces don't mean she can walk, but it will help her hips and her foot stay in proper placement. I look forward to posting a picture of those too :)

To all our followers, I wish you a very Merry Christmas. I hope you all get to spend time with your family and loved ones and have a blessed holiday. <3

2nd Butt Day!

The moment where uncertainty meets certainty. You're so unsure but at the same time, you've never been more sure in your life. That's how it feels to make the decision to have fetal surgery. And I am not talking about the day I said yes to the surgery, I am talking about the day the IV is in, the hospital gown is on, and you're on your way down the hall. I had up until the last second to back out. But I didn't.

Two years ago, we went through with the surgery that allowed my daughter to have her back repaired before she was even born. It was the day that the cutest little butt ever entered the world, if only for a short time. We took a chance, and although we will never know what could have been if we hadn't done the surgery, but I am confident we make the right choice in choosing to jump in with both feet and eyes wide open.  What I can tell you is that I have a new appreciation for water, showers, and driving. I have an appreciation for ultrasound techs, kind doctors, and  NICU nurses who take the time to try to convince you to eat when they know you've had no sleep and haven't left your child's side all day. I have an appreciation for the smallest details, like toe twitches, ticklish feet, and seconds worth of head control. I have an appreciation for myself and a new found will to make things happen if I want them to happen. I also have an appreciation for this little bug we are raising and every little thing she says or does ;)

I cannot believe that our little peanut will be two years old in just a few months. Ever since we found out she had spina bifida, our lives have been moving so fast. All we can do is hold on and try not to miss anything. Happy second butt-day my darling!

Two Years Ago

Oh October 5th, you are so infamous.

I debated on writing this blog post for a few different reasons. I don't think this day deserves any recognition because in the long run, it is meaningless. Writing about it brings back memories and not any that I particularly care to relive. The day is behind us and life is nothing like I'd imagined it on this day and the days that followed. But, I take ownership of this day because it did play a huge part in my life.

The emotions that course through you as a mother finding out there is something wrong with your unborn child are something that no one  besides other parents who have gone through similar situations can even begin to understand. Sure, friends and family members can say "I understand" but it's simply not true. I don't say this to hurt feelings or offend anyone. I say this because it's a truth that doesn't often get said.

As I reread my original post (here), I can't believe how weak I felt. I felt like my life had ended and I didn't know how to go on. My life as I knew it did end, but not life itself. Life is different, but it's good, and in that moment I couldn't even begin to see that. I won't pretend that this will prevent other new moms from feeling this way but it does show that in times where you think you can't possibly survive a situation, there is a future and it's much brighter than you think.

You become a super woman. You will probably be "one of those moms" (you know, the crazy ones) much sooner than you think when dealing with medical professionals. You won't flinch at talking about poop, catheterizing, or posting pictures of "does this look weird to you?!" on your support groups. You'll become an advocate for a cause you probably didn't know existed until now (October is SB Awareness Month!!). And your kid will be AWESOME in more ways than you can count.

I will be spending THIS October 5th cuddling my adorable 20 month old, playing with annoying musical toys she can't get enough of, and catching the game (I swear this child WILL love football, we are starting early!)

18 Month Check Up (a little late!)

Callista had her 18 month check up today. She is 29" long now, and weighs almost 22lbs. I am happy to say she has grown! I was a little worried about her weight, since she had such a rough time after her surgery and has been consistently puking for quite awhile. Apparently it isn't having an effect on her gain! She actually talked to our pediatrician today for the first time, even though she's been babbling for months. Annnnnnnnd....we finally got a prescription for HKAFOs (Hip, Knee, Ankle, Foot orthotics). Maybe we can finally get this baby practicing her standing. Our stander is still in process, but we made some progress with billing this week: one step closer!

Standers help our little ones stay upright, encouraging bone growth, better circulation, healthier digestion, and of course, it helps them finally see the world the way everyone else sees it! I am looking froward to her being able to be at a higher eye level and interact more. It will come with a tray so we will be able to sit toys in front of her.

Next Friday, Callista will go to Myelo clinic. This will be the first one I have ever missed. I am sad, but daddy will be able to handle it (with the help of our nurse, everybody needs food and a bathroom break at some point!). I hope they see the massive amount of progress that we see after her decompression surgery. Sure, she is no where near where she would be if she was a typical child, but the girl feels better and that is what matters.

We still have no news from our Homecare Waiver reassessment, so for now we are going with "no news is good news". Our documentation shows her need, now we just need to get the approval. Keep praying!

As for mommy, the new job is going well. I like being able to be home with Callista a lot sooner and the financial aspects have been a blessing for us. A change in insurance *should* make the world of a difference, but we won't see the change for another few weeks. I really had forgotten how awesome it is to work with children directly. It's certainly a lesson to be that all you have to do is trust and ask, and God will give you what you need. Even if it takes his sweet, sweet time doing so. :)

I will update after clinic next week. No MRI (as far as we know!), but she does have a renal ultrasound. They've been stable for a year, we aren't expecting anything new from this. We are getting samples of a blended diet formula though! Plan #987 in Operation: End Vomit!!

Move It Move It!

Our little princess is one tough cookie! I cannot imagine how she felt before decompression #2. The progress we have seen has been amazing. There's not really any other word for it. Even though she does not get another MRI until December, I already know what it's going to say in my heart. I know the syrinx is either gone or shrunk significantly. We have a NEW KID. As I write this, she is sitting in her bouncy chair pressing away on her musical flowers. Most parents would be ready to smash the thing by now, but hearing that sound (albeit annoying as it is!) means so much to me. Because a month ago she could have cared less. She didn;t want to play with toys, she didn't move her arms. Yet here she sits, twirling the flowers, making them go, and entertaining herself for the first time in her life. She is trying her hardest to sit up even though she still has another week to go before she's allowed. And best of all, we see leg movement all the time. Coming from little to no movement to frequent kicks and wiggles pretty much makes me cry. No lie there. I had almost resigned myself to the fact that my daughter would never walk, even a little. It doesn't even really matter whether she does or not as long as she's happy and independent. But this gives me so much hope for her mobility. I cannot wait to get her braces so we can really see what she wants to do. The food trials are going so much better than we could ask for. She wants more, more, more! Her five trial bites are never enough for her. And her language is improving too, she is developing new speech sounds that we've never heard her say before and she even throws me a bone now and then by saying mama. Occasionally. Dada is still the word of the day, every day!

Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.

Nom Nom Nom!

For the first time in a very long time I can say we had a great result from an appointment. Callista is healing up nicely from her decompression but still has to wait until her six week mark before she can start working on building up those neck muscles again. We're going to try to go back to therapy two times per week as long as Callista stays as happy as she has been.

The interdisciplinary feeding clinic was a huge success. We met this team for the first time on Thursday and already they've been more help than anyone else regarding Callie's GI issues. The doctors on the team agree with me that there must be something else besides reflux that is contributing to her excessive vomiting. After over a year of hearing there's nothing else we can do besides surgery they told us there are several medications that could possibly help. We have not just one choice, but many choices if this first med doesn't help. I couldn't believe it! The feeding team evaluated how Callista can eat by mouth and gave us suggestions on starting oral food as well as a referral to speech therapy. Not only can speech therapy help with oral motor skills, but maybe our baby will talk soon! I still have to schedule the speech evaluation. I know it's one more thing to add to our plate but we'll do whatever it takes to make her successful. We will also go back to the feeding team once every 3 months for them to reevaluate and give new suggestions, as well as see their therapist once a month for consultation. At least it's a change in scenery since this one is in Dublin rather than NCH.  Miss Callie is also very happy with this visit because she gets to try real food three times a day! She may not be completely sure what to do yet, but she sure enjoys the taste.

We have a GI appointment tomorrow and I'm guessing it will be our last. They've been less than helpful and it will be one thing for us to eliminate trips to Columbus for. The only reason we are going back this time is for follow up from her gastric emptying test. Wish me luck and patience...