Tuesday, August 27, 2013

MRI Number...?

I think today was Kingsley's eighth MRI, but I could be wrong. I've honestly lost track. They're just checking things out, for once. We don't have any obvious concerns, but neuro wanted a follow-up after last years virus, and to check the syrinx, the possible retethered cord, space for the Chiari, etc.

This was the first time I've talked to him about it before hand. The Pre-Admit Clinic gave us a print out of pictures to talk to kids about and give them a visual description of what would be happening. Last night, we chatted about it and I showed him the pictures. He started crying. He said he didn't want the mask, didn't want to go to sleep, didn't want to go to the hospital. I was able to talk him down a bit and let him know that I'd be there and I'd be with him when he went to sleep.

This morning, I opened his door and his first words were: "Be-tuz I don't want to have a nap and I'm scared of the mask!!" Oh, buddy. :(

He did amazing though, truly. He was scared. He cried when the nurse put his bracelets on and kept asking for chocolate pudding. We spent most of the morning snuggling and reading books. When it was time to go in, I carried him and he told me how scared he was again. I laid him down on the gurney and the anesthesiologist was so wonderful, talking to him and trying to keep him calm. When they put the mask on, I reminded him that this was just sleeping medicine and it was going to be okay. He just nodded, held my hand, breathed slowly, and drifted off to sleep.

Crush my heart. Three year-olds should not have to be this brave.

He woke up in a great mood, making the nurses just fall in love with him. We watched Curious George and shared a popsicle until he was allowed to go. While we were there, one of the nurses showed me his hospital file. It was about three inches deep. This kid is going to need his own shelf by the time he turns ten.

We get the results in one week.

Sunday, August 25, 2013

Goodbye, Sweet Birdy

Some of you may remember a post I wrote nearly a year ago now about meeting a mother who was expecting a little baby girl. This sweet girl was going to be born with only half of her heart. The family was facing surgeries, hospital stays, and serious disruption in the lives of their other four children. Her story touched me so deeply, as I know it did for those of you who started following Ava's story and their family's blog.

Ten days ago, Ava passed away. She was eight months old, waiting for a heart that never came. She was so deeply loved, even by those of us who had never even met her.

It seems cliche to say that her mother inspires me, but she does. Lisa has posted throughout Ava's journey with such grace and conviction. It has not been easy and I don't imagine that will change anytime soon. Keep this family in your thoughts and prayers.

Thursday, August 22, 2013

Autumn is Coming...

Autumn sucks for Kingsley. 

We discovered the syrinxes in autumn 2010 (and had a bunch of surgeries).

This year, I figured I'd flash the bird at Autumn and beat it at it's own game: I planned a surgery for Kinger. So there! We already know that autumn is going to suck and we know why. I was all: IN YOUR FACE! right up until I hung up the phone on Tuesday with a surgery date and pre-op appointment scheduled. Then I felt like throwing up. 

His hamstring and heel-cord releases (are these even the real surgery names? I may be making them up) are scheduled for October 15. King and I will be meeting with the ortho surgeon two weeks before that to finalize the details. His PT wants her to consider doing some work on his ballerina foot as well to get it less ballerina-pointy and more flat footed. Either way, he'll be in double leg casts for four to six weeks afterward. 

I haven't really figured out how I'm going to tell Kingsley all of this. Right now, I discuss it in front of him, but not with him. He doesn't quite grasp the concept of time and thinks that anything I mention in the future is imminent - for example, thanks to Costco having Christmas wrap out already, Kingsley thinks Santa is coming any day. I don't want him to live in a state of constant panic at the thought that any car ride is going to end at the hospital with him having surgery. It's very different from the last four times when he was an infant. On the other hand, I do need to talk to him about it eventually. It would be rather cruel to take an unsuspecting child into the hospital and have him wake up in double leg casts. SURPRISE! 

One other itty-bitty thing causing me a bit of anxiety is that he has an MRI booked for next Tuesday. It's supposed to be just a routine see-how-things-are kind of MRI. Pleasepleaseplease pretty please with a cherry on top, can this just be a routine MRI and not some fake-out where we discover something we don't want to discover??  I did tell King about the MRI next week and the mask that is going to help him fall asleep. He was not pleased. Apparently, he remembers the Mask of Doom from last year and freaked out a bit when we were talking about it. Eek, poor guy. :/

we had the pre-admit appointment today. I think he handled it pretty well.

Tuesday, August 20, 2013

The Big WHY

I debated posting about this before I had a conclusion to my story, but I am at the point now where I am not confident that the conclusion will ever come. And maybe that's just the way it's going to be or supposed to be, I don't know. 

A few weeks ago, on a Friday night, there was a knock on our door as I was putting the kids to bed. Jeff answered it and I just got to the door in time to see him signing something and accepting a big, thick envelope. 

Jeff's father was adopted as a child. Just before he passed away five years ago, he and his wife had been trying to trace his roots and find out about his biological parents. He had been able to find out a little bit, but his adoption records were sealed, his adoptive parents had both died, and so he could only go so far. Four years ago, the adoption records were unsealed. Jeff, his oldest child, asked for the adoption records of his father. Four years later, on a random Friday evening, they arrived. 

Jeff pulled out the file and we both chuckled at the introductory letter warning that the recipient should have supports in place as the contents might be upsetting or cause unexpected emotions. That night and the next day, Jeff read through the 100+ page file. Saturday morning, he casually called me over to read a line on one of the pages. 

I was not expecting to read what I read. 

In her own handwriting, Jeff's paternal grandmother wrote about her siblings. She had two, both married, the younger was in poor health and had trouble with her spine. 


Trouble with her SPINE. 

I must have read that line a hundred times and then devoured the whole report, anxious for any more information on this great aunt of Jeff's who had spine trouble, but that is absolutely all that it said. 

For forty-seven months I have been waiting for an answer. I have been swallowing the guilt, wondering what I could have done to make that itty-bitty neural tube not close. I know there's nothing I did intentionally, I did what I could to prevent it, this isn't 'my fault'. But it happened and without any other explanation, the guilt falls to me. 

But with those four little words, I could be absolved. 

Spina bifida can be genetic. There are many types of SB, one called occulta, which wouldn't have required surgery at birth or even have been known without the presence of problems. If Jeff's great aunt had some form of SB, then there is our answer. There's the WHY that we have been agonizing over for years. There is an answer for my daughters, for my relatives, for Jeff's relatives. 

IF is the big fat IF though. Maybe she just had a bad back and coincidentally it was called trouble with the spine. Maybe maybe maybe, if if if. 

Jeff's step-mom gave me contact information for the bit of distant relatives they had been able to get in contact with all those years back and I sent a message to a woman I think is Jeff's second-cousin. I haven't heard back. To say that I am anxiously awaiting a reply would be an understatement. In the meantime, I speculate. I imagine what it would be like to have the answer that I had long ago given up hope of ever getting. I imagine getting a blank wall and no answers, always wondering how close we are. Who knows. 

Aside from that, there was one other awesome little tidbit in the adoption records. Jeff's grandmother had red hair. So, the other big mystery in our lives has now been solved: we know where Cordelia's hair came from! 

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