Tuesday, February 16, 2016

developmental assessments and not being SB mom of the year


My Eliza doll is 6 months old.
I know, it's certifiable crazy talk. 

And other than celebrating half birthdays and taking adorable photos and weeping over the tiny wardrobe that she's growing out of, this age milestone does come with one more thing. One dreaded, icky, thing. I thought I was prepared for it. I thought I was ready. I had my feelings prepped and my questions at hand. I knew how to handle it. I could have sworn I did. It's just a simple thing. Surely not big deal right?
Spoiler alert: Big deal incoming...

The developmental assessment. 

At six months old, Eliza had finally come face to face with her first stage of assessments. This time, it started with the new online Ages and Stages Questionnaire (or ASQ) that my pediatrician's office asked me to fill out before I brought Eliza in for her routine visit. 

Like the semi-responsible mom that I am, I sign in to the website, set up my log in information and settled in for what I assumed to be yet another medical form. 
Spoiling again: It so wasn't. 

The questionnaire started by asking about her fine motor skills. Does she grasp this, does she look at that. Yes, yes, whatever. But it quickly moved on to the others that weren't so simple. Does she roll over both ways? Does she sit? Does she balance well while sitting? Does she put weight on her legs? Does she pull her legs to her chin? Does she use each leg the same? Does she rest on her knees? Does she grab her toes?

All simple questions. I'd have thought nothing about answering the same questions for Jake. But with Eliza, each one felt like a punch to the gut. No, she can't do that. No, she won't do that for years. No, she might never be able to do that. 

And you can't just check "No" because that would be over too soon. You apparently have to crawl your way out of each level of Dante's Inferno as you also answer "Why" for most of these in a comment box. Awesome. Freaking awesome. Because I love typing "She has spina bifida" over and over again.

Can I just keep it real? By the time I finished the 40-50 questions and digitally submitted them to my doctor, I was in tears. This was my perfect gal. My heart. And some stupid machine had just effectively told me over and over again: "She's behind. She'll never catch up. She can't be like these other kids. She's failing. You're failing." 

It was emotional. And it was what folks in my circle call an "I hate spina bifida" day

Cue part two: 
Then on Friday, we were back in Nashville for her 6 month appointment in the NICU Developmental Clinic. This is basically run by the Vanderbilt NICU as a clinic for micro premies or kiddos born with a variety of diagnosises. They test the little ones, see if they're on track, and make sure all of their developmental needs are being met at home. Their research also helps them to prepare future families for what the realities of certain diagnoses might be.

Sure, I'm down with that, I thought.  
I thought wrong. 

The nurse practitioner spent almost an hour with us, playing with Eliza and attempting to get her to perform a series of tasks. Eliza is used to "playing" with doctors and therapists so this was old hat to her. She giggled her way through the tests, and then the nurse spent several minutes out of the room scoring it before returned to chat. 

"She's behind."
"She's below average."
"She lost points." 

All said to me. 

The test was made for the average 6 month old, which Eliza is not. She was graded on tasks that she is physically unable to do (pulling her legs to her belly, bearing weight, etc.). She was scored on milestones that spina bifida kids might take years (rather than months) to reach. On paper, next to the average 6 month old, she was behind already. 

I asked what we could work on. The NP said, "Nothing! She looks great! I'm so impressed." 
Swear, had I not been holding my precious baby, I might have thumped this woman in the head.

I left feeling completely defeated. Deflated. Tired. Beaten. 
I'd spent months watching her work so hard, keeping a positive outlook, celebrating every small victory, pushing back those overwhelming feelings and relishing what a blessing and joy Eliza is. 

And in two days, all those feelings were squashed. That hard work? Tossed aside. Those victories? Inadequate. Don't misunderstand me, I fully understand the intent behind these standardized tests for the average Joe. I get why they are used and how they can be helpful to most kids. But make no mistake, they do nothing for a special needs mom other than turn you into a puddle of your own tears. They are a line by line reminder that our kids are different and that their lives are harder. They rob us of our joy. 

So what did I do? Well, first, I cried.  
And ate ice cream. See previous post sbout my love affair with two fellas named Ben & Jerry. 

Then I went back to my village. My supporters. My encouragers. 
 I returned fire with my own 6 month assessment of how perfectly squishy and lovely my gal pal is. Because truth!  
 I vented to one of Eliza's therapists, who told me to put those assessments where the sun don't shine. And then went on to remind me how rad Eliza is and how she is blowing away the spina bifida norms. So far above average. Take that! 

And lastly? Well, I had to get the heck over it.  
This isn't something that will go away. It won't change in a year or two. This is our constant. 
Should my pediatrician's office have really bothered us with that asinine form? No, they should know her chart. 
Should that developmental clinic NP have acted like Eliza had failed at all the things when really she was doing her very best? Nope. She should keep unhelpful information to herself and perhaps provide an additional, spina bifida comparison type test. 
Should we stop making an effort because these people are being totally uncool? Still a big ole' nope.  

I can't fix everything that's broken. Eliza won't be able to either. But holding my head up and taking things as they come is a lesson in life that I'd like her to learn. So I guess that means I have to learn it too. Besides, who says you can't mutter obnoxious things under your breath to make yourself feel better?

Besides, we all know what a champ this little lady is. She's crushing it in her therapies and doing so so well. We are thrilled!!  
Seriously! Dance-party-thrilled!

Based on my own in depth assessment, she's tops.



 







Friday, February 12, 2016

Spinal MRI results and a Ben & Jerry's coma



Shew! Longest week ever, y'all! Eliza and I have been burning up I-65 to Nashville as if all other roads don't exist. At this point, I do feel like I've earned at least a little placard owning my own stretch of highway, no?

After her last brain MRI showed the beginnings of a small cyst at the top of her spinal cord, Eliza's team asked us to come back pretty quickly so they could get a better look at things. A sedated spinal MRI would give the neurosurgeons all of the best images to see what was going on. 
Sedation? Y'all, hold me.




So on Sunday, Eliza and I headed up to Nashville so we could be at Vanderbilt bright and early Monday morning. Because she'd be under anesthesia, my gal pal had to be without food for quite a while. Something I expected to go over like a ton of bricks. I feel like modern medicine should have a work around for starving people by now. It's 2016, folks! 

But my little lady was pretty well behaved and slept thru a lot of the hours she was hungrily waiting. Bless. I would have resembled a Betty White snickers commercial. Hangry is my most deeply felt emotion. 



(Hangry eyes. She's no fool.)

I was doing pretty well with the whole process until I learned that I couldn't be with her during the MRI. It brought me right back to those awful surgery moments! So when they said they'd call me in two hours, after she woke up, I did what any self respecting mother would do - sat my emotional behind directly next to the Vanderbilt Ben & Jerry's and ate all my feelings.  

Instead of two hours, I got a call about an hour and twenty minutes in. Sure that something was terribly wrong, I answered while fast-walking towards the Imaging Department. Emergency? Nope. My little lady had passed out immediately without the need for any assistance. And then woken up immediately after the test was over and sedation turned off. She eliminated twenty minutes of work before the test and twenty minutes after the test. Oh and the nurse immediately conveyed that, not so shockingly, Eliza was starving! Please come quickly with any sustenance, she begged! 

Incredible time management. A great follower of directions. HANGRY. It's like looking in a mirror. You're welcome, world. 

Eliza was done-zo with that imaging department as soon as she had some food in her belly so we scampered upstairs for our follow up with the neurosurgeon. 
With Vanderbilt being a teaching hospital, you pretty much always have to be ready for a gaggle of medical peoples to show up to basically anything. Dr. Bonfield came into our appointment with a couple of med students and spent several minutes showing off Eliza's complicated spina bifida closure. She's a bit of a celebrity with all her fancy scars. 

When the images came out though, things got a bit grim. It turns out that Eliza has not one, but two, somewhat sizable cysts in her spinal column. One at the top below her brain stem, and one near the bottom around her closure. Fluid collects in these little pockets and eventually they put pressure on the various nerves and whatnot around them. That pressure cuts off the information sent through those nerves and causes the areas that those nerves reach to stop functioning (arms, legs, etc). Cue minor mental panic attack. 

So what do we do? Well, nothing. Reaching these cysts isn't as simple as poking her with a needle and draining them. They're deep inside her spinal column. Getting to them means going through several really important layers. Basically, they cut her spine back open, drain them, and the close it back up. Cue my second mental panic attack.

My neuro bro went on... 
A. It's crazy major surgery.
B. With the function in her lower extremities already so precious, it's a huge risk that she could lose it! 
C. She's a tiny peanut baby and nobody wants to mess with her itty bity self unless they absolutely have to. 

Right now the cysts aren't really bothering her. So the plan is to keep on keeping on. She'll continue to have these sedated spinal MRIs to monitor their growth and we'll keep a keen eye on her function levels in case anything starts to looks awry. The goal would be to avoid surgery for as long as possible. And there's even a chance that they could stay asymptomatic! Yes, sign us up for that, pretty please! 

We left with mixed feelings. Ick that we've got a new something to watch out for. Glad to not need immediate surgery. And generally over-stuffed with Chocolate Fudge Brownie ice cream. Oh wait, that was just me... 

Thanks for following along on another bif adventure. We're praying for the lamest, most boring cysts in the history of cysts! And to make it 6 months until her next spinal scan! 








Wednesday, February 3, 2016

first SB clinic of twenty-sixteen!

Spina Bifida Clinic again!

Last week, Eliza and I loaded up and headed to the snow-covered streets of Nashville. It was a bit of an adventure navigating the iced over downtown area. 
There were a few scary episodes of skidding around on black ice. And one mom, who shall not be named, that slipped on the ice and fell into a snow covered bush. Never a dull moment, guys.
But we finally made it to our hotel and snuggled up to Downtown Abbey and take out food. 
Okay, so maybe that was just me... Eliza was studying the inside of her eyelids by 8 p.m.. 

We were at Vanderbilt bright and early and started the day in Urology with her typical renal ultrasound. This is a normal clinic scan, as they like the check to see how her kidneys are looking.
After the scan, it was up a few floors to the Spina Bifida clinic. 

And holy crowd Batman! 

I think a combination of the bad weather over the past week and the previous holiday had created a total traffic jam in the clinic. The waiting room was crammed full of families! In a certain sense, it was kind of neat to see all the different kids with spina bifida and how they all interacted separately and together. Kids in wheelchairs, leg braces for days, and shunts as far as the eye could see. A little girl in a standing wheelchair was whizzing around having a field day with the crowd. You could tell that several of these families knew each other from previous clinic visits. And others, like me, were just hoping to get in to see the doctors before any inevitable meltdowns. 
Baby meltdowns, not mom meltdowns, thank you very much.

After a few hours in the waiting room, we finally headed back to the exam rooms. Our visits list this round included neurosurgery, urology, orthopedic surgery, physical therapy, occupational therapy, nutrition, our spina bifida clinic coordinator, and the spina bifida social worker. 

  • Our nutritionist was really pleased with her growth (read: fat rolls and marvelously plump thunder thighs) and encouraged me to get started with some solid foods. I'm hesitant, y'all! 
  •  The spina bifida social worker and I talked at length about what sort of programs could be available to her in Alabama and I got some great information on a few of those!
  • Our sweet urologist was shockingly thrilled, yet again! I wish I had a photo of her face every time she gives us these great results. It's like her eyebrows are just glued in the surprised expression, haha! She's just so taken aback at how absolutely normal Eliza's test results are for her bladder and kidneys. We were cleared once again to treat Eliza like any normal baby and skip out on medication and a catheterizing regiment! Yay!
  • Physical therapy and occupational therapy had a nice long visit with our girl. While we work with two separate therapists at home in Alabama, we haven't seen the Vanderbilt therapy team since Eliza was released from the NICU. They were elated that she's already rolling over and trying to sit up, and very pleased with all of her head and trunk control. I got lots of great tips on new things to try. And I take it as a good sign when the therapists get confused about your kiddo's lesion level because she's doing so well!
  • Ortho was a quick visit this round. Eliza's hip ultrasound from January came back perfect, so they merely commented again that since she looked anatomically awesome in her hips, knees and feet, they wouldn't need to intervene until she was closer to a year and would be fitted with braces to help with standing. 
  • And lastly, our beloved neuro team. Eliza's shunt MRI from last month looked sound, but they did pick up something new on her brain scan. She has developed a cyst (official, super medical name for this is a "syrinx") at the top of her spine. A cyst like this can press against different areas of the spinal cord and cause a decrease in movement to various parts of the body. It seems to have grown a bit since her last scan in September, so the neuro team wanted to take a closer look at it. We've all noticed a decrease in her leg movement over the course of the last few months so the team will be pushing to have new scans done pretty soon. The cyst could be completely assymptomatic, or it could be the reason we're seeing less movement in her legs. It's impossible to know until she has a spinal MRI. To be honest, J.B. and I have mixed feelings about the whole thing. An assymptomatic cyst would mean that she doesn't need to have any major surgeries to correct it. A win, right? Well, yes and no. If the cyst isn't causing the movement issues, that leaves us with no real solution and only more work in therapy to do what we can to salvage her leg strength. I've always been one to see a problem and immediately push for quick resolution. In a situation like this, it sure feels like a lose/lose. Major surgery or no solution/answers. Y'all be praying for us (and Eliza, of course!) as we try to figure out what's happening in the next few weeks!
        UPDATE: Eliza and I will be headed back to Vanderbilt on Monday to have a spinal MRI done for the neuro team. This will be a much longer scan than she's used to so she'll have to be sedated for the procedure. I'll be back with news when we hear something!


All in all, I think the clinic visit was still really positive. The news about the cyst was a bit scary. But we have so much confidence in our wonderful team at Vanderbilt and even more confidence in a wonderfully mighty God!

Eliza handled the day with the greatest of ease and continues to be the most precious baby. She's still making great strides on sitting up and rolling from her back to her belly! With the exception of neuro, all of the specialties cleared us until May!
Take that spina bifida!