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.