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...

What a GREAT Day!

Callista's Second Annual Benefit was a huge success! We had a great turn out and raised an awesome amount of funds. We've got two walks/runs we will be doing soon so our team is set. Plus, don't forget to check out Socks 4 Surgery, Gracie's Gowns, and Team Iron Aiden on facebook, we will be supporting these organizations by sponsoring child gifts. We also will start the planning stages of home renovations for Callista. Since our home is two story, it's not conducive to her future wheelchair. An additional bathroom with a wheelchair accessible shower and sink as well as remodeling the room attached to the garage are in the works! Our goal is to make our home work for our daughter and to encourage her independence as much as possible. Anything she can do for herself is what we strive for!

I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.

Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!

Home Sweet Home

It is truly a compliment to be trusted by your child's doctors. It's nice to hear from professionals that you're doing a great job and they consider you "educated" parents. We finally got to come home today after spending a week in the hospital. Even though Callie was still throwing up, they had such faith in me as a parent and caregiver that they let me take her home anyway. I am so glad we did because she has been doing great. Maybe she just missed her special chair! Me, I just missed my shower, bed, couch, TV, dog, couch, etc. Okay, I think I missed a lot more than her... Mostly I think we are both looking forward to a night of uninterrupted sleep.

We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.

Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)

I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.

Pain, Pain, Go Away!

Callista had her second decompression Wednesday. If you know Callista, you know this came with some drama. What was supposed to be a 5-7 hour surgery turned into a 14 hour surgery. Nothing necessarily went wrong in the surgery, it just proved to be a little more difficult than initially expected.

We brought her in at 6:30 for surgery prep. By 8:30 they took her back for anesthesia and to place her IVs. At 9:30 they called out to tell us they were struggling to get lines in and the surgery still hadn't begun. Around 10:30 someone came to tell us they started shortly after our last phone call. The nurse was so good about calling us with updates every hour and a half or so. But after the seven hour mark, it was a little stressful waiting on those phone calls. Each time we were assured everything was going smoothly, the doctor was just taking his time finding the right placement.

Finally around 11:30 the surgeon came out to say it was done and he thought it went well. I am forever thankful it was HER surgeon that worked on her, I cannot imagine a new person taking on such a huge procedure when they did not know her. Dr J. claims this was Callista's going-away present to him. He had to remove bone that had grown back from her surgery when she was two months old. She also had a lot of scar tissue which took some time getting through. He could not pinpoint the spot where the fluid was blocked so that also took more time than necessary. He removed a cyst she had in her brain that had been there since her last decompression as well. Finally he was able to place the stent and close.

She had a CT scan shortly after surgery and it showed the stent was in the right place. They kept her on the breathing tube since she had been under for so long and it was 1:00am. She was able to be taken off the next day. She had a fever all day Thursday so they pumped her full of antibiotics to fight off any possible infection. It finally broke later that night and she was feeling a little better. Her pain was controlled okay until this morning.

Somehow her pain meds were not given around the clock and she was about two hours late on one. She woke up screaming in pain, she held her breath four times, and scared a nursing student to death. Once she got caught back up, she's been happier today. She is awake more and trying to talk and play, but wears out easily. She enjoyed sitting on Papaw's lap today after several days of not being able to be cuddled. She's got pressure ulcers all over the sides of her face from being in the halo for such a long time. She also has a lot of swelling from the surgery and fluids she's been given. We tried to start her food but she couldn't handle it. Hopefully tomorrow is a better day! We hope to be discharged by Monday but she has to eat and have adequate pain management with oral meds.

We won't know if this surgery did what we needed for several months (as long as 4-6 months). The MRI yesterday showed smaller ventricles, maybe that's a good sign!

Eight.

Eighth time's a charm, that's how the saying goes, right? Third time, you say? We missed it!

Callista will have her eighth surgery on the 17th. It will be another decompression surgery. She had one at two months old and it is the most serious surgery she's had other than the fetal surgery. Needless to say I am one nervous mother. Last time it took about six hours, but they did a bronchoscopy with it. We don't know how long this one will take. I did my best to find pictures that (sort of) explain what is going on with Callie's brain.

Callista's syrinx is much longer than in this picture, it travels pretty far down her spine. A syrinx is when there is spinal fluid in the length of the spine in a space it isn't supposed to be. The larger blue spot in this picture is the syrinx and the skinny blue line is what it's supposed to look like. On her MRI, there's a big black spot that points to a blockage, possibly caused by scar tissue from her brain being so compressed when she was born and the first decompression surgery.

This picture is an in depth look at what a decompression surgery actually does. Hers won't necessarily be the "textbook" surgery like this shows since it's the second time she's been through it. We are so lucky in the fact that her neurosurgeon rescheduled another surgery so that he could do hers and still be around a few weeks after before he moves to another hospital out of state. I am so relieved. This procedure is a huge undertaking and I wouldn't trust anyone else to do it as well as he will.

His plans are rather loose since he is unsure exactly what he will find once he opens her up. The tentative plan is to use the same incision, perhaps lengthen it to adjust for growth. He will open the dura and look at the scar tissue to see how much he can remove. Any bone regrowth from the last surgery will be removed and depending on how compressed things look, he may remove bone to widen the opening. He does not think he will need to remove more bone but it is still on the table as a possibility. Then a stent will be inserted to bridge the gap between her ventricle fluid and that "black spot" so fluid can flow freely through the spinal cord.

In writing, it seems straight forward, but there are many unknowns until he can see it. There is also a slim chance that this repair could also help her vomiting issues but we can't be certain. We are wishfully thinking it helps though!

Please pray for my sweet little girl and our family that we can get through this smoothly and have a quick recovery. It's such a major surgery that we hoped we'd never have to go through again.

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!

Change and Clarity

Change (Verb) Make or become different.

There's so much to say about one little word that can cause so much turmoil or so much celebration. We pray for change, dread change, make things change, and deal with change that is forced upon us. Sometimes we have control over what changes and other times we don't. Change is sometimes a blessing that is immediately visible to us, while other instances of change are blessings in disguise. Change is all these things, but it's also just one thing. Change is what you make of it. No one else but you can decide how you handle it and what you decide the value of it is. What brings on all this insight? Why, changes of course! Not to worry, Princess Callista is still being her sweet little self, but change is occurring in our lives. Two big things. Neither of which I am thrilled about but it's not a choice and we will make the most of it. Callista's neurosurgeon called Monday and informed us he will be moving to another hospital at the beginning of August. He will be there to read her full MRI in July and help in planning what to do about her syrinx, but if she needs surgery, he will not be the one to do it. The thought of a stranger cutting into my daughter makes me ill. But these guys are professionals, they do the same thing our neurosurgeon does, and they work for one of the best Children's Hospitals in the country! And I've heard such great things about both doctors we have to choose from so we can't go wrong in dealing with this change. One very helpful SB mother has me swayed as she shared stories of how their neurosurgeon cares for her son. And a positive is we still get to keep our favorite nurse practitioner. We realized doctors come and go, but we just didn't want it to come so soon. We get comfortable, we feel certain, and we build trust only to have to start all over. But it is what it is and we will keep moving forward. The other change is a bit more personal, and the details haven't quite been worked out. My job situation is changing and it's time for us to decide what is best for our family. It's one of those changes I talked about, that are forced upon you and you must make it whatever you need it to be. I needed it to be a sign, and it truly was a big one, a wake up call to say the least. Things will get hard for us financially, but my husband is ready to step up to the plate while I take a step back and do some soul searching. I can't foresee what will happen in the time between now and Fall, but again, i want to make of it whatever I can. One thing I've learned in the last two years is that even though society gives the impression that you must put others first, if you neglect yourself and your needs you're not doing anyone any favors. Here's where the clarity part comes in. Clarity (Noun) Clearness of thought or style; lucidity: Let's face it, we all need some clarity in our lives! Wouldn't it be nice if every time you were faced with an option some omnipotent voice would clearly state "Choose the bacon burger for lunch today". Granted, our situation is a little more serious than choosing between a chicken club and a burger, but I have to admit the voice choosing for me would be quite helpful. There is the saying that everything is not black and white, but the gray area is so hazy. When we get into the gray area, we lose our clarity and gain self doubt. I wish I was more spontaneous, willing to jump without looking or thinking (sometimes!), but I am an over thinker. I will think about something for days, weeks, even when it's over and nothing can be done or changed. But in this instance, I am letting it all go and leaving it up to prayer for clarity and I will be guided to the one and only choice that is right for us. I will not have doubts about the choice made. I will not have regrets one way or the other. I will be the spontaneous jumper! I just want to feel at peace with myself and my environment and unless I let go, I'll never achieve my goal. Here goes nothing, or everything depending on how you look at it :) I also want to give a quick Thank You to all of the wonderful people assisting us with our benefit coming up July 28th. Every day, I am in awe and just plain baffled by the outpouring of love and support. I am looking forward to seeing many of you there. We love and adore you!

How Do You Do It?

"I don't know how you do it" is a statement I, along with other special needs moms hear pretty often. Some find it offensive and I can see why. It implies we put up with things that we shouldn't have to and that is partially true. We shouldn't have to spend nights in the hospital or watch other kids grow and surpass our own. But I am not offended because those that utter the phrase have positive intent. What I choose to glean from the statement is this:

• I am an amazing mother who goes above and beyond for my child because I have to, and because I want to
• I go through more than most mothers but still come out smiling even if life sucks at the moment
• I show up to work and continue to be productive after sleeping on a hospital couch or better yet, NOT sleeping at all when a normal person drags in a bad mood
• I drop everything to do what's best for my kid and others notice and appreciate this
• I have more stamina now to keep chugging along than I had when I was 20, younger, more metabolism, etc. 

I recently told someone I get by on snickers bars and caffeine. That's "how I do it". We all do what it takes to make sure our children get what they need. Now "How do you do it" differs completely from "I could never do what you do". Now THAT is offensive. Because I think anyone could do it. You do what you have to. A tiny human being who needs more than a normal tiny human being has a way of wrapping you around their adorable little fingers and you're stuck for life. Walk across a floor of tacs? Jump through a hoop of fire? Go on two hours of sleep in three days? Why yes, dear, if that's what you need from me to be happy and as healthy as you can be.

The official diagnosis was a UTI, the same one as the last, it never fully went away with her first doses of antibiotic. Apparently the UTI caused vomiting, then the treatment caused nausea, which caused more vomiting.Wednesday, she had another MRI, which showed her ventricles increased. This implied a shunt malfunction. Her neurosurgeon did a shunt tap which showed there was no way it could be pressure in her head. Then as they were resetting her shunt setting, it was discovered that the magnet tool they use to set the shunt was not working! So for a week, her shunt was set at 1, instead of 0.5. It explained the increase in her ventricles and quickly resolved itself once the setting was corrected.

As far as us, we are home for now, and how we do it has gotten easier than the last two weeks! We had the pleasure of sleeping in our own bed last night and hanging out in our lazy day clothes today. Miss Callista was so happy to be home and to sit in her pink chair.  She hasn't had a single breath holding spell since she left the hospital which contributes to my theory that she simply hates it there. We all slept in today, making up for sleepless nights away from home. They gave us a new bag to hang with her feeding to help her get the air out of her tummy. Hopefully we are in for a much more pleasant eating experience. Right now, she is still on slow, continuous feeds and gradually we will work our way back into a normal schedule. She has a nutrition clinic appointment next week to see about what we can do to meet her needs but avoid milk and soy. Other than that, we're just looking forward to our three whole days together.

Also, welcome to all our new readers from Callista's facebook page. We are so happy to have you on our team!

So Which One are We Choosing??

By "which one?" I mean which diagnosis! Callista has been in the hospital since Monday for vomiting. We took her to the ER on Friday and they did a shunt series and MRI, then sent us home. By Monday, she couldn't keep anything down and it was dehydrating her. In the ER, they insisted again on the shunt being the culprit. It was not. She was admitted and more testing was done throughout the week. For four days straight, if she was awake she was screaming in pain and having breath holding spells one right after another. I think we got maybe 9 hours of sleep total in those four days. She has been through several tests and procedures. Now we are playing the game where we try to see how many diagnosis we can go through.

1. Shunt-- Nope says Neuro
2. Kidney infection-- No way says Renal Scan and X-Rays
3. Shunt (again, seriously?)-- Once again, a big N-O from Neuro
4. UTI-- Yes actually, but it's still the same one from last time which apparently did not get cleared up.
5. G-tube ulcer- Scope says no, but there is a lot of irritation in her esophagus and stomach lining.

We are still admitted, I can't wait to see how many more we can add to our list and how many more times "shunt" comes up. To top it off, we were put on the junk floor over in the old part of the hospital. It's not the fact that it's an old room, but more that most of the people over there are clueless. Many of them refuse to listen to us as parents, there is only one space to sleep (one space, two parents, what to do?), and many of the people fluctuate from being TOO attentive and waking her up every five seconds, or not attentive at all, with alarms and beeping driving us nuts for long periods of time. Lucky us, after it was decidedly a GI issue, we got moved to the GI unit. One of our favorite nurses is taking care of her now, and I actually got some sleep. Nothing more exciting than that! It certainly isn't the way I wanted to spend my week or weekend but hopefully we've convinced GI that there's something more going on besides simple reflux.

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.

Happy Nurses Week!

Since Callie can't say it yet, I will say it for her. Happy Nurses Week to all the nurses that have touched our lives. We had our favorites from the J4 NICU (Thanks Joann and Layla, you rock!!) and we can't forget Sherri and Liz from A2 (love you guys!). We spent almost 3.5 months of Callista's life basically living with the folks on these floors and we couldn't have survived without their humor and love for Miss Callie. We also thank Callie's home nurse, who has been so sweet and kind over the last eight months. We wish you luck as you move on <3 

Mostly, we want to thank our MOST FAVORITE nurse ever, DADDY!!  From diagnosis day until today, it has been such a blessing to have a nurse as a husband and father. He takes such great care of our little bug and helps me wade through the medical jargon and random test results. He is there to keep me from being intimidated and to ask questions I wouldn't think to ask. And of course, he is there to do the gross stuff like IV antibiotics and dressing changes (hehe!!). Our family would not be as strong without this wonderful guy in our lives. We love you!!

Be nice to your nurses this week and every week! They work hard, they work long hours, and they take time away from their family to take care of yours.

Shunt Revision

Callista had her shunt revision early Friday morning. Other than dragging everyone out of bed at 3:30 in the morning, things went smoothly. They took her back at exactly 8:00, and the surgery lasted around two hours. We expected it to be a little shorter than that, but the doctor decided to do a little maneuvering of her shunt tubing as well as replacing the shunt. He said her old shunt was "sluggish" and some fluid pressure did come up around it when he opened her up. Before, he was 50/50 that this would fix her syrinx and now he is 60/40. Not much of an increase, but we will roll with it! Dr. J said the CT scans looked good and the catheter is in the spot he wanted it to be. We go for a wound check in two weeks, and a follow up limited MRI in six weeks. In about 12 weeks, she will go for a sedated MRI again to see if the syrinx is getting any better. If it is, we continue to wait. If it is not, we discuss other options for surgical intervention.

Callie woke up nicely from this surgery (it's amazing what the right size tube does for her, huh?) and only needed tylenol to manage her pain. We spent the night on the neuro floor and were released around noon yesterday. She is pretty much back to her old self, laughing at everything and very alert. We just have to deal with the post anesthesia yuck. The poor kid's stomach can't take it! She has tummy trouble for three to five days after she gets put under, no matter how long the procedure is.

In good news, Callista's 2nd Annual Benefit has a date and place: Profit's Park on July 28th. The time is still undecided. We will begin collecting donations for door prizes and auction items now. I am so excited to be able to do another benefit and be able to give back to the spina bifida community that has been such an amazing support system!

Well, THAT was Fun....

We did our first PICC dressing change tonight. Here's how it's supposed to go: wash hands, undress baby, put masks on any adult within range as well as baby. Create sterile field, remove bandage, wash area with antiseptic swabs, replace bandage.

How it really goes: was hands, undress baby, put masks on mommy and daddy, mommy holds mask over screaming baby as best as she can while daddy retrains baby's swinging arm. Baby screams and screams and holds breath due to restraining. Try to locate the damn supplies you KNOW you brought in while trying to keep a sterile field, maintain holding mask over intermittent breath holding baby Daddy struggles to put new bandage on flailing arm. Finally get to take off masks and comfort baby. Endure glares from said baby for the rest of the evening.

Needless to say, I hope it's out before the next change is scheduled to happen! Now I am trying to cuddle on the couch and make up with my littlest love, who is clearly going to hold this against us for a bit. Her shunt revision is scheduled bright and early Friday morning. It should be a short surgery and a pretty short recovery time if all goes well. Please keep Miss Callie in your thoughts. And a big THANK YOU to the folks who have ordered from our Amazon link! We appreciate the help :)

Three Letters: UTI

What a bummer! Callista is admitted to the hospital with a UTI. She has been vomiting since her MRI April 2nd, but we attributed some of that to her adverse reaction to anesthesia. Then we changed her formula to something for older children around the same time. So the symptoms could have been due to many things. But apparently it was a UTI. I am quite a bit disappointed it got this far considering I brought it up to urology at our clinic the first week of April. I told them I had concerns about it and it was brushed off. When will they learn that moms know best?

As for now, we will be in the hospital at least until tomorrow, but maybe more depending on what kind of bacteria is causing her infection. This also sets back scheduling the shunt revision. I haven't heard from the team how long we have to wait now, but it's too dangerous to do a surgery when there is infection in the body. The last thing we need is a shunt infection to go along with it. We have several neurosurgeons on the same page now regarding how to proceed with the syrinx. A large pocket of fluid is in the center of her brian and the catheter is barely in the pocket. Hopefully once the shunt is fully functioning again, it will clear up all the extra fluid making its way down her spine.

I shared on Callie's facebook page as well, but wanted to post here too... We have joined the Amazon Affiliate program. To the right, there is a link to amazon. If you ever shop there, you can go through Callie's link and a percentage of your purchase will go into her medical account. It costs you nothing! Please consider using the link in your shopping endeavors :) We use these funds for equipment that insurance won't cover, as well as saving for braces, etc. since only one set gets covered in a certain time period.

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 ;)

Spring Break (AKA busy!)

The first week of April I am on spring break, but it will be anything but a break. We tried to cram all of Callista's appointments into this week so I wouldn't have to take any days off work. In other words, not much of a break, but we will be getting stuff done!

Tuesday she has a full head and spine MRI with sedation followed by a neurosurgery follow up. They're just doing this routinely to take a better look than the quick MRIs that don't give as good of a picture. Specifically, her neurosurgeon wants to look at her ventricles (which have been the same or better on each MRI) and her Chiari malformation how that it's been a year since her decompression. They will look at her spine as well, I assume to get a baseline if she ever starts having tethered cord symptoms.They will give us the results after she wakes up when we go to neuro clinic so at least we don't have to wait and worry.

Then Thursday we do WIC renewal and Friday is clinic day. We will do the usual clinic with a renal ultrasound again to check her kidneys. They have also been stable ever since her vesicostomy. It should be an uneventful visit.

Callie has been using a kidwalk in therapy for trial and she loves it. She puts a little weight through her knees and ankles. You can tell she enjoys standing up. We will be starting the process to get one of our own. The ortho guy will be at our appointment next week to observe her during therapy and write recommendations for bracing. We're one step closer to getting our baby girl on the move :)

Sharing Success

I wanted to write for a larger audience than bloggers. So I thought about it and decided to join Yahoo voices. Today my first two pieces were published! I just wanted to share the links with some of my biggest supporters that encourage me to write.

http://voices.yahoo.com/inner-demon-jealousy-12031790.html?cat=7

http://voices.yahoo.com/the-trouble-college-12020950.html?cat=9

Small steps still count if they are in the right direction :)

Shunt Scare

We had a pretty big shunt scare yesterday, but luckily everything turned out okay. When we gave Callie her bath Wednesday I noticed her lower back looked a little puffy. It did not seem to be bothering her so we waited until the neurology office was open in the morning. They were concerned that her shunt was not working and fluid was building up on her spine. We rushed to Children's ER at their advice. They also thought it could be a shunt malfunction. Apparently there was no hurry though because we waited almost five hours for an MRI. I tried to maintain my patience, but it is extremely frustrating to wait that long when the possibility of a shunt malfunction is very real when we've been whisked into MRIs for ER visits having NOTHING to do with her shunt. Her ventricles looked stable. They did a shunt series X-ray and it showed no clogs or kinks. So the shunt is in working order (yay!). The neurosurgeon on duty came to look at her and informed us that it is not a pocket of fluid but is more likely a part of irritated tissue from a recent virus. Well okay! We're still getting over RSV (can last 2 to four weeks in some cases) AND she just received her one year shots on Tuesday. Either or both of those things could be the cause. We were released with instructions to keep an eye on the are and to schedule a full MRI with sedation soon.

I am quite thankful, as my mommy guts told me something was wrong and I dreaded the thought of her having surgery. Besides, her hair is finally growing over her shunt and you can barely see it, give the poor girl a fashion break! Now we are just looking forward to the weekend a lot of baby cuddle time.

Big Day

There's a big day coming up soon! My baby girl is going to get her first assistive device. It's called a KidWalk.Tuesday she gets to try one to see if she can fit. We hope she isn't too short for their smallest version. You can see one here http://pinterest.com/pin/4433299603715387/. She has been doing better each day with physical therapy. She still needs a lot of work with her core strength, but we are also requesting bracing. She's getting so good at holding her head up and we are working on sitting up. She still struggles with arm movement and grasping toys but we're slowly improving in that area too.

We've had a great couple of lazy days at home. Just hanging out on the couch and cuddling has been good for us both I think! I also have been thinking a lot about another benefit. I hope we can make it an annual thing with a portion going into Callista's fund and the rest distributed to local SB associations. Ideas for the next benefit are more than welcome, we want a fun day and big crowds! I will also be looking for vendors who want to donate and set up displays. It will be this summer so if you're interested, let me know.

Recovering (all of us!)

We are finally headed down the long road of recovery. Callista from her illness of course, but her daddy and I from sleeping on a hospital couch, cafeteria food, and little to no rest. They released her Monday (20 minutes after the snow started, thanks again) with oxygen for at night if she drops her saturation. They didn't send us home with a weaning plan, but thank goodness for our wonderful pediatrician. We couldn't ask for anyone better to be on her side! He gave us the go ahead to wean, suggested we stop the antibiotics, and said that if he didn't know what Callie had just been through he never would have guessed because she looked so good. Now if we could just get our one year wellness visit it! Apparently you are required to be WELL for that.

It seems as though our little one has started growing and developing like a weed just within the last two weeks. She is now expanding her babbling sounds and I swear we are thiiiiiiiiiis close to saying mama. She talks non stop at this point and is becoming such a big girl! Her head control is developing nicely and she is starting to get some strength in her core. She has started reaching for things and touching things. Her whole body movements have increased by a lot as well. Miss Callista has had a long break from therapy after being sick, but next week she is back to working her little baby butt off. Her grandpa made her a therapy bench so she will not get lazy at home either!

A Diagnosis

Ding Ding! We have a winner. Two winners actually in regards to what the heck Callista has. RSV with secondary pneumonia. Oh joy... They have her on amoxicilin as precaution but the reality is there's no treatment for either of these. She just needs to get over it. Right now they've got her admitted as "comfort care", meaning she gets oxygen as needed, some saline breathing treatments and tylenol as needed.

We still have a day or two left in the hospital according to what the doctors have to say. She is okay being off oxygen while awake, but still dips into the 80's while she is in a deep sleep. Until she can behave herself while sleeping, she will remain admitted. We've had some excellent care this stay, although I still don't feel comfortable leaving her by herself. Daddy and I have been trading places as to who stays with her, just so we can get a shower in our own home and to sleep on a real bed. I've had to take off work for several days, but you do what you have to. Personally, I think there's a week minimum stay for Children's Hospital. It's probably in the fine print on that yellow consent form you sign in the ER! I will use the hospital time to finish the latest Stephanie Plum novel, Nineteen. (The Stephanie Plum Novels By Evanovich, Janet). It's junk food reading, good for those long, LONG days hanging out in the least fun place to be....

I've been doing a lot of soul searching (if that's what you want to call it) over the past week or so, and I am trying to find a better way to be there for my child more. Financially, we cannot afford me not working, but we've been working very hard to get out of debt. I think we are making some great progress, although we still have a long way to go. Thanks to everyone who donated to our give forward account over the past year. I wanted you all to know how appreciated it is, and to let you know it will go toward paying for outstanding bills we still have from our trip to Vanderbilt in 2011 (yeah, that long ago!). We never would have made it without the support of our friends, family, and amazing strangers.

Poor Baby

At 11:30pm on poor Callie's birthday we had to head to the ER. She wasn't keeping her oxygen above more than 90%. She is admitted now and on a low dose of O2 until she can recover from this congestion and coughing. They told us we can go home when she can make it through sleeping without any O2 help. As we go, she gets worse and worse. The doctors said the 4th and 5th days of viruses are the worst so hopefully after today we make a turn around.

There's not much more to share at the moment, but I will update if there's any news.

Something to Celebrate

See, baby burrito!

"What love has brought into this world...
What joy she has brought.
For this, our celebration, sings
Of far more than we ever thought." 

Happy 1st Birthday to my darling daughter.  It's so hard to believe my little 7lb 4oz little baby burrito is now almost 20lbs and a year old. We had her birthday party a little early since Daddy had to work the weekend of her birthday. We celebrated with some of our family and closest friends and it was such a wonderful event. And we have one spoiled rotten little girl! 

 

I invite you to take a look back on our very first post after Callista was born. The future was so unknown to us. We were so happy she arrived, but uncertain about the rest of our lives, the rest of her life. Not to say we are certain now, but there were moments in the beginning when we weren't sure how long we'd have her. And once you go through that as a parent and have to ask the question "Is my child going to make it?" you cherish every moment. 

 

Like the moment where you shove your baby's hands into a cake and she is surprised. Then she realizes it tastes good and licks her hands... The first time she has sincerely tried to eat anything for almost an entire year. THAT is one of those moments that we look forward to and never take for granted.  

In honor of Callista's surprise arrival, at exactly this time, exactly one year ago today. Happy birthday, beautiful butterfly. Mommy and Daddy love you so very much!

Pretty in Pink

Clinic Day

Clinic this morning went much better than expected. There was so much positive attitude I was in shock! Usually we are stuck listening to complete strangers tell us what our daughter can't and will not do. This time, it was praise after praise. I am always terrified of MRIs and ultrasounds. You just never know what is going to show up.

Today's MRI showed that her ventricles are even smaller than the last time they scanned. You could visibly see more brain matter in today's imaging than in the ones from July. We love our nurse practitioner from Neurology so much as she took the time to sit down with us and go through image by image and tell us what they meant.The renal scan (kidneys and bladder) showed no changes from the scan they did in September. So her vesicostomy is working and no more damage is being done to her kidneys. The urology doctor said her vesicostomy looked great as well.

The physical therapist was impressed with her new found head control, tummy time skills, and core strength. She told us that on her notes in September, she was very limp and had no head control, so this was a huge step forward. She gave us suggestions on how to work on sitting up, so we will be starting those ASAP! (And grandpa will be building her a therapy bench lol). We go back again in three months, and hopefully she will have enough upper body strength to qualify to get her first set of leg braces!

My proudest moment of all today was getting to share the fetal surgery experience and benefits with neuro (the awesome one). Callista performed well, wiggling her tiny toes and responding to touch on her feet. I hope that they start sharing the option with the soon-to-be SB moms they consult with. We were their first fetal surgery baby and we're FINALLY proving it is worth it.

On a side note: I bought some things for Callista's first birthday party today. WHAT?! Yes, that made it real for me. It's coming in just a few weeks and I have no idea how our very first year with our daughter has flown by so quickly. I am so excited to share the big day with family and friends.