Fluffy Brains & Babies

I know what you're thinking! That title sounds like some knockoff zombie film. I assure you, there's no guts and gore in this post, pinkie swear!

As a mother to a newly diagnosed unborn baby, I was obsessed with numbers. Statistics, percentages, measurements of amniotic fluid pockets. The numbers that meant the most to me were how big Callista's ventricles were. The magical number falls between 6-10mm for ventricle size. Before fetal surgery, Callie was measuring at 12mm (an indicator of hydrocephalus and spina bifida). We hoped to maintain or decrease this number back to "magical range" but it didn't happen for us.

I cringed at every appointment when they measured my baby's head and ventricles during our weekly ultrasounds. Every time, that number slowly increased. 20mm... 32mm.... 41mm.... And every time, I continued to imagine the damage being caused to my poor girl's brain. I mean, having your brain squished so tight around the inside of your skull cannot be good, right?! And yet, I was reassured by my doctor and several other SB mommies that brain damage does not go hand in hand with our little ones. I didn't believe them. As Callista's ventricles climbed to the high 40's, low 50's in the week before she was born, I was a nervous wreck. Especially after seeing other mom's listing numbers in the 20's and showing their panicked state. Yes, other moms are obsessed with those numbers too! 20's?!?!?! I wanted to go back to the 20's!

Now, I've had about three years to calm down about numbers and I've learned not to ask unless completely necessary (which is, like.... never). Numbers mean nothing, but the old saying "A picture is worth a thousand words" rings true. Let's rephrase that to being worth a thousand measurements. These pictures are from Callista's MRI at one day old, and again from this past Monday.

*A mini MRI education session: The brain is supposed to be gray. All that white is the spinal fluid built up in her head from the flow being interrupted due to spina bifida. That weird looking black spot is where her shunt valve is, so the MRI cannot see through it.*

Look at that big, fluffy brain! That is some nice looking brain tissue if I do say so myself. When someone tells you that your baby's skull can accommodate the additional fluid, they aren't delusional. Our little ones are so resilient and I hope these photos give peace to someone who is worrying about the same numbers I once did.

Two Week Oil Update, etc.

For two weeks now we've been using oils daily on Callista's feet. If I didn't see it for myself, I'd think it was crazy. But she has been adding new speech sounds faster than ever over these last few weeks (we've even missed therapy for three weeks!!!). I've also noticed that she consciously/purposely moves her feet much more than she ever has. I don't think we've seen HUGE strides just yet, but with these tiny steps already showing, I have a feeling great things are to come by continuing our oil journey.

In other news, I am sure most of you know that a few weeks ago, Callista had a seizure. She's never had one before so it was a scary thing for me. As soon as she woke up, she began twitching and it lasted about 15 minutes. We called the squad after we realized she wasn't stopping. Luckily she did not need meds to intervene, she stopped almost as soon as the ambulance arrived. After a trip to the local ER and then to NCH, her MRI showed her shunt was functioning fine, she did not have a fever, and there were no other causes that they could determine. This Wednesday, she has an EEG so if you could pray for good results that would be wonderful <3 For now, we have emergency meds and we hope it was just a one time deal.

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

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.

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.

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.

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.

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!

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 :)

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.