They call me Peter Pan

My dad has always said you are as young as you feel. I thought it was a mantra for just himself and saying it out loud made him feel it must be true. Mom always joked she had three kids, my dad being the biggest of them all. But I have realized for my dad it is reality to him. I know because I now understand.

Here I am at 34 with my second child cradled in my arms, and I realize I have the Peter Pan syndrome too. I refer to myself, (at least in my head), as a girl not a woman. I still think my age is closer to kids in high school than their parents and am convinced I cpuld relate to them with this age logic. And I look in the mirror and don’t really think I’ve changed much since college, neck up anyway. Order up! I’ll have a side of toned up arms and abs, please. And hold the post-baby tummy sag.

But I am holding the proof I have aged. The fact that there are more than 40 pounds of boy sleeping snuggled up next to me is astounding! I am incredulous I have a five-year-old, and oh so glad we didn’t wait any longer.

Age may be a state of mind, but the mind can’t ignore what the body is saying, especially when it’s too tired to fight back.

We want our bubbly baby back

It’s been rough to go back to the silent, locked up baby girl after so many weeks of our bubbly girl.

Today we didn’t give her the morning dose of the newer seizure med, Benzal, and while she was still groggy this morning she perked up tonight. We got two half smiles for different simple gestures and she was trying so hard to study our faces.

I say perked up because she showed interest in something other than her steroid-induced food obsession. Enamored with D, she played with his hair at bedtime and that made his night.

I am observing him closely because the past week he has shown more signs of feeling perhaps jealous or confused. And it hit me that on top of the usual emotions of competing with Doodlebug for attention, he is about to have a huge change with school. Maybe without knowing what the change really means he senses the uncertainty. That, plus, I really believe he has been more upset or emotionally lacking because he misses Doodlebug paying attention to him, even more than wanting it from us. His need for her to laugh at him may be more affected by her foggy spells than I realized. We all were spoiled after several weeks of basking in her precious happiness.

So here’s hoping tomorrow is even better and that dropping the dose is the right move so we can get our bubbly baby back.

The diagnosis: What’s next

Lots of info on the different potential diagnosis we are working toward. But right now she doesn’t cleanly meet the symptoms of any. So they are all theories right now, that’s all. And now what you know, is what we know. And that isn’t much. 

Currently treating and testing for…

Auto-immune via steroids, until we have more info

Genetic disorder, just not mapped yet to DNA testing

Metabolic tests

Potential outcomes

Option A: If it’s auto-immune, it’s something in this family of paraneoplastic encephalopathy. Not a picnic, but not impossible, either. Just never seen in a baby is what we gather. An account of a grown up shows how severe it can be.

Option B: Rare form of epilepsy – Lennox-Gastaut or Dravet syndrome. Our astute epileptologist pointed out having a name doesn’t really make you feel better if it doesn’t help you solve the problem. But I think for now it’s a start for us.

Option C: Her brain needs help breaking down the creatine for a rare condition that she doesn’t make the enzyme or protein to break it down on her own. Could mean supplements and diet changes.

If you noticed the trend of all these you get the cookie! Well, maybe I already ate it, but you might have noted no matter what our options are at this point, it’s all rare.

I didn’t say it was exciting reading.

Patience

It’s never been easy for me, that highly coveted virtue — Patience. And it’s particularly hard these days when we feel like we have so much hinging on Reese’s prognosis. A mercurial conversation pending new test results, doctor consultations and her daily progress report. It has been flabbergastingly complex how the inter-workings of her system, the meds, the therapy, the tests, all are co-dependent and yet, we need something to stand out to allow the other pieces to fall into place. Preferably into a logical place, and not just a thousand pieces crashing to the floor. And I think that’s what I fear the most. Bryan and I are planners. We like to dream and we like to build what if scenarios and then build dependencies and plans, to a fault. So right now we are facing literally more scenarios than we can mentally handle and every day it feels like a different one is taking the lead.

Why the ramblings? We spent over an hour with our smart, energetic (and most importantly) tenacious epileptologist — a neurologist who only deals with epilepsy. (I love btw that Word doesn’t know how to spell it either). And so here’s the update in the most logical way I can find to explain what our next set of scenarios is.

The update:

Her multiple weeks on steroids being wired like a junky and equally agitated weren’t for naught. Her brain activity shows a positive response that means her repeat (out of control) seizures would be less likely. And her development definitely took a leap forward. So while we had a normal EEG report as of April 10, we were afraid to share the news, not really understanding the full impact. We HAD an appointment for this coming Wed. with our epileptologist again, but we don’t need it now.

Next steps:

Reese is back on steroids. For joy. Doctors think her positive response to the previous steroids means she just didn’t get enough for her brain to fully heal. Seriously. This is the thinking. Sooo, we get to try another high dose, get an EEG again in two weeks (can we get a frequent visitor card?), and then depending on how much better her brain activity looks will determine how much longer she will be on steroids.

At the same time we continue to wait for several tests to come back that they ran while we were in the hospital. The potential scenarios are autoimmune, some rare genetic mutations that haven’t been fully mapped yet, or a metabolic option having to do with breaking down creatine in the brain.

No matter what, the outcome is Reese has something rare. And two of three seem to be fairly treatable.

A Comedy of Errors: Hospital style

I can’t even recap the whole day but I can tell you about the last 3 hours with a delirious smile, because all we can do at this point is laugh.

Bryan’s brother was super kind and satisfied our need to eat something healthy with a big salad and some fruit. But, we got interrupted at least 3 times. First, we were trying to time Reese’s feeding with the nurse’s schedule to give meds, and that meant we had to also get her IV cleaned up so that requires at least an hour of pre-planning because you have to find a tech or an ER person who can handle her tiny veins. But even when that was cleared up there was still no high chair to be found anywhere. Not sure how that is possible in a children’s hospital. So we fed poor Reese in an execsaucer that she was really too tall for. Here she is surrounded by pretty colored toys for the first time in 3 days and we expect her to ignore them to eat! And as if that wasn’t enough, half way through her scarfing down 4 oz of baby food, we smelled either sulfur from a lit match or could have been like plastic melting, I was ready to detach her from all the devices and carry her and saucer out the door. But they decided it was in the ventilation system. Disaster avoided.

Reese didn’t nap at all today. The new anti-convulsant is kicking in. So when they were dilly dallying about all these things to get done I warned them once she is asleep I am not letting you near here. So of course, in all the earlier commotion nurse forgot to take Reese’s blood pressure. She came in and basically I think I could see her change her mind. Said she HAD to do it in about 3 hrs. I nodded politely.

And last, but not least, the video tech couldnt see R in the crib. Hello!??! We have been in this room for 8 hours and he waits until she is finally asleep to have us move her damn crib around so it is in a better position for the ceiling video camera. Of course the 1950s-style asylum crib wheels squeak and we bump just about everything else in the tiny room trying to adjust the crib about 30 degrees. Seriously.

Comedy of errors I tell ya.