Tuesday, March 26, 2013

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 ;)

Friday, March 22, 2013

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 :)