I Spy With My (lazy) Eye...

We had our second visit to the pediatric ophthalmologist last week. We went two months ago and he checked Eleanor out, waved some things around her face and told us she needed glasses but they probably wouldn't work. I left his office feeling thoroughly confused and slightly perplexed. What was the point if they wouldn't work? I phoned my GP to go over the notes from this visit, but I never got a clearer answer. So I didn't get her glasses and waited til her next visit. 

I came armed with questions and he was much more forthcoming. He thinks she needs surgery to correct her right eye. It creeps into a cross eyed position pretty frequently and if they adjusted the muscle on the outside, it will most likely look normal. He suggested we try patching her good eye for *gulp* two hours a day and get her glasses. He reiterated that she won't tolerate either, but if we leave it untreated it will likely become wandering or will permanently cross. Apparently with this condition the brain tells the wonky eye to stop working. Yikes. 

So we've been stocking up on supplies! We picked up some pirate patches along with her surgical-bandaid-esque patches  so we could all be pirates together. We will see how that goes! - and we got her glasses. We are waiting for them to be ready and I'm kind of excited about it. She was really good about trying them on, and a bunch of adult frames which looked hilarious. 

Looks an awful lot like this:

She's even trying to wear her sunglasses.

So I'm optimistic about her ophthalmology. Surgery wouldn't be the worst thing to happen to her, but I think she's going to need a couple of teeth pulled next month, so if we can avoid more anesthetic and knives, we will do whatever it takes! 

Now is the winter of our discontent

Well, not really, but I don't think Shakespeare (or anyone for that matter) has a quote about how your new baby is almost four months old and it feels pretty weird because this is when everything started going tits-up with your first baby but you had no idea...yeah. 

Where is the literary parallel for that?

Hmmm. I'll have to do some more research. 

I knew this day would come. I knew it would be hard. For the longest time I had an aversion to babies who were between 6-9 months. It's such a neat age and Eleanor totally missed it. Instead of sitting up, learning to crawl and eating solids she was flat on her back and being fed by a tube down her nose. Now that I have a vibrant and (mostly) healthy toddler, I have learned to appreciate that baby stage and not be sad about it. 

But four months was a big turning point. I remember starting a new baby group with Eleanor (4-9 months - my baby was growing up!) and asking the mothers there if their babies had pubic hair. I remember sitting slightly outside the circle and all the heads turning to look at me. No. Our babies do not have pubic hair. Maybe get that checked out. I smiled and said I had.

"Just curious."

I would come in every week and inquire if any of the mums were having similar problems and sometimes they did, but not really. I complained about stinky armpits and some mums had babies with cheesy armpits. Wash them out and put some diaper cream in there. Helpful, but not for Eleanor's bonafide old man body odor. We got similar tips for her acne. Looking back I was painting a perfect picture of Cushing's Syndrome and I am pretty thankful for that group and letting me complain thoroughly about all that stuff. It was very useful when it came to explaining all her symptoms. 

Now I have another four month old baby. A happy and healthy one. A deliciously chubby and strong one and I have no idea what to do with her! Everything about her is different from Eleanor. She sleeps. She rolls. She SMILES and LAUGHS. Eleanor never did any of that. I've been playing this game with Penny where I hold her hands and pull her up to sitting. I saw it in a Baby Einstein video. Is this a thing??!? Is she too young?!? I have never felt so insecure with my parenting, I mean - I am taking parenting tips from Baby Einstein!! I honestly have no idea what I should be doing with a four month old baby. It's exciting and terrifying and sometimes just plain sad. Like when Penelope figured out how to pull the handle that makes music on her bouncy chair. Kris and I couldn't even acknowledge it. I cried and he kept helping Eleanor eat dinner. That was the pinnacle of Eleanor's development. She pulled that handle and then regressed. She got weaker and sicker for three months until we took her to the hospital. Penny just pulled it (and pulled it and pulled it and pulled it "Twinkle twinkle little star..." over and over!) and keeps right on going. Right on growing. Right on track. It's wonderful. But sad.

But mostly wonderful. 

"Mrs Mia Wallace..."

Eleanor had an episode on Friday. Not a cute, funny episode like "The New Girl", it was more like an episode of "House", except I am playing the doctor and I can't remember any of my lines or the blocking. It was frightening. 

I don't like playing doctor. 

Eleanor started up her immunizations again on Thursday morning. She's now 6+ months past treatment and got the go ahead to begin catching up (all her previous ones are null and void due to chemo). She got three shots with 6-8 different vaccines. It was a lot and she took the injections really well, all things considered. We had a snack in the waiting room and went on with our day. No big deal. 

My first inkling that something was wrong was at 8:30 that night, when she started crying. Eleanor goes to bed around 7-7:30 and usually sleeps straight through to 6:30 the next day. Crying was unusual for her. It was intermittent and I had the white noise app blaring. Baby Penelope hasn't been sleeping great so I have been trying everything to give mama a few uninterrupted hours of sleep! Kris was attending to Eleanor so I went to sleep. 

At 2:30am I awoke to a knocking on the wall (our bedrooms share a wall). I leapt out of bed and found Kris holding Eleanor and pacing around her room. She had a fever and dry heaved after taking some Tylenol. Kris was quite upset but I reassured him that this was normal, and that lots of kids have reactions to immunizations. We made a bed on the floor so the two of them could sleep together.

I got up at 6:30 and found a very anxious Kris in the living room. 

"She's not up. She's always up by this time"

"Let her sleep. She had a big night and is probably feeling a bit crummy"

"The door is open and Elmo is on tv. She should be up. How is she sleeping through this?"

"Shhhh"

"Can you check her?"

"No. Let her sleep"

This went on for ten minutes until Kris just went and woke her up. He carried her out onto the couch and I checked her over. No fever, but elevated temperature (fever probably coming) and not really herself. We gave her meds and Tylenol and some water. Kris's anxiety continued while I felt confident in my relaxed "this happens to everyone" approach. I sent her endocrinologist an email and phoned the pediatrician on-call at the hospital to appease him. During this time she started to crash pretty hard. She began crying/moaning and her temp climbed despite the Tylenol. The light was starting to flicker in brain that she was not okay. 

My thoughts were confirmed when her endocrinologist phoned me and gave me explicit instructions to administer her emergency stress dose or risk a hospital stay. Alrighty. I'll just assemble this giant needle with 45mg of solu-cortef (her usual dose is high at 2.5mg!) and inject it into her thigh. Normal day. 

I have been trained twice for this procedure. The first time I was skeptical that a) we would ever leave the hospital and b) she would ever need it. I learned pretty quickly that yes, we would someday live in a world beyond the hospital and YES she would need a stress dose. In the two years since that training she has had this stress dose at least a half-dozen times. Every time, however, I have had the good fortune of having trained professionals nearby and they have done it for me. And usually they have an IV in place so they don't have to stick it in her leg. Anyways, I went over it again about a year ago when I realized that this is going to be a regular occurrence. 

I popped the safety off the solution and pressed the cap down firmly. The cork descended into the liquid and took the powder with it. I carefully swirled it until all the powder had dissolved. I removed the needle from its packaging and drew up exactly 0.9ml, making sure all the air bubbles were gone. I grabbed an alcohol swab and all my courage and headed into Eleanor's bedroom. My mum had arrived and the baby was on the makeshift bed with Els and her lullaby cd was still playing everything felt really cozy.

Then she threw up and everything resumed its chaotic state. 

I instructed everyone to hold that child down because she WILL fight you! Kris held one side and my mum held the other. Outer third, middle third. Outer third, middle third. I focused on the fleshy part of her thigh, gave it a wipe with the swab and inserted the needle. She screamed and flailed which surprised me as she had been so lethargic two seconds before. I depressed the contents steadily and replaced it with a face cloth (I forgot a swab). Within fifteen minutes she was up and running around - totally back to normal. 

I did the right thing. Eventually. Kris and I talked about it afterwards and realized that while his paranoia is generally wrong 80% of the time, he definitely gets it right some times. I need to remember that she's not a normal kid and when she can't sit up, something is horribly wrong. It's like something switched in my brain and my heart. I got all mushy and wanted to sit with her and rub her back and watch cartoons with her. I guess it's because I spent so much time with her when she was crazy sick, but had the backup of a huge team of health professionals! It's been a long time since she's had an adrenal crisis, so it took me (and all of us) by surprise. 

The important thing is that she's feeling much, much better. 

Sunday

Eleanor pulled out her red cardigan this morning and declared, "Elmo!" and proceeded to put it on over her pajama t-shirt. Who am I to argue with that? The final outfit looked like this:

Pretty sweet, huh?

We set out on an adventure to the petting zoo and Eleanor displayed her enthusiasm for the animals, despite her debilitating sign impediment. Seriously. We have been doing cow and horse and pig and cat and duck signs and she mushes them all into one. It kind of looks like the sign for flower. She's starting to make animal sounds so at least we have a vague idea of what she is trying to say! I have never wanted to understand her more. I wish I could translate her conversation because girlfriend is emphatic and seems so clever and inspired. It is really something to talk to her these days!

Anyway after the animals, this happened.

And this...

Which was pretty awesome. Seeing her run through this rainbow and screaming and celebrating made me think of all those who have crossed the rainbow bridge: Anaya, Cecilia, Lucas, Jeremy, Molly, Justin, Jasper and little Lilee-Jean who is frantically trying to complete her "dancing in the rain" list before it is too late. So many tiny souls taken before their time. 

Just like Eleanor's sign impediment, I feel like we have a parenting impediment. Sometimes Kris and I look at each other and think "wtf are we doing??" We have embraced our second chance but it is not easy. I struggle with setting boundaries and limits with a child who nearly had it all taken away. How can you say no, especially to such wild abandon play? I can't! Go run and be free! Enjoy it for all the kids who can't. Get wet. Fall down. Try again. I hope that as time goes on and her good health continues we will see her more as regular kid, but for the time being she is still special. She is still our delicate flower (or cow or duck or what are you trying to say?!??) and we can spoil her a little. Clothes can dry and veggies eaten at the next meal. This summer has been filled with magic moments and we are grateful for every last one.

First Bike Ride!

Ready, set...

Go!

(crash)

Helmets are the best! Who knew??

Off-roading with Jenn

We just got back from a super barbecue with super people who have lots of super bike/trike options! Eleanor spied them immediately and climbed on a three-wheeled push bike. She hasn't totally figured out how to push herself, but loved being pushed by an adult, wearing the helmet and following Spencer's lead! Spencer is one of Eleanor's cancer buddies. These kids are the lucky ones. Their lives are more complicated than other kids, but they are both miraculously cancer free. We've gotten a lot of bad news lately about kids that haven't been so lucky and it is soul-crushingly sad. I don't pretend to know why our story has gone this way, but I am grateful every day for it. It's incredible that we get bright sunshiny evenings where Eleanor can ride a bike and dominate the bubbles (girlfriend loves bubbles). Summer 2013 has been very kind to us. Here's hoping it continues for a long, long time.

Summertime Adventures

These are the worlds crappiest photos of the worlds best adventure. Eleanor, Penelope and I took Atia (or "ah-TEE!!!!" as Eleanor likes to call her) up to Mystic Vale with my sister-in-law, her kids and their dog. Eleanor walked, ran and scampered to keep up with her big cousins. She called for them when they ran off exploring dry river beds or fallen trees. They overturned dead branches to reveal dozens of potato bugs running for cover. 

I'm not even exaggerating to say it may have been the greatest day of my life.

Well, maybe a teensy bit. But it was an incredible day. 

First weeks of summer

We just finished a short, but busy week. Eleanor had so many appointments! She used to always have a lot, but its tapered off quite a bit and suddenly we have two weeks where we are jam-packed. We did two days at BCCH and the BC Cancer Agency and needed the rest of the week to recover. Kris came down with a nasty cold and I had to do double-duty with the kids. It was a lot of waiting around but thankfully Eleanor's scans came back all clear. We met with her oncologist and he was pleased with her progress and seemed more keen to talk preschool than cancer! He then made plans for her to come back in six months rather than the usual three. The primary reason is because she is doing so well but he also stressed that she has had a lot of scans over the past two years and her exposure to radiation is a big worry. She is highly susceptible to another malignancy and we want to make sure we limit all external causes. 

This week was filled with therapy sessions. We met an occupational therapist on Tuesday to see if she needed any desensitization therapy as she has shown some aversions to certain things. After watching her play and explore the gym we both concluded she is doing just fine. Wednesday was speech therapy and Thursday was her hearing test at the public health clinic. There hasn't been any change in her hearing loss and the audiologist told us there was no point in giving her hearing aids. She hears enough to get by in daily living and should be just fine. 

Today we went to the dentist. Her molars have been weighing on my mind for quite some time as they don't look right. They don't seem to hurt her but I suspected that the chemo may have done some damage. The dentist gave a quick look and confirmed my suspicion. He made a referral to get them checked out under a general anasethic at the hospital. They will put her under and they will salvage them with caps or (most likely) pull them all out. Kris and I are pretty devastated by this. I'm trying to shake it off by telling myself this could happen to any kid, regardless of past health. Some people have crappy teeth! And they warned us that IV chemo can do this and that mitotane is notorious for destroying teeth. But it just feels awful. She's been through so much already. I hate feeling sorry for my kid. I hate pitying her. I want to celebrate her and admire her and be in awe of her but right now I just feel bad for her.

Her life is hard.

I don't know what I thought life after cancer would be like. I guess I didn't think about it because we were never ever told we get here. Now we ARE here and sometimes it feels like we are floating out to sea. We've got each other, and that's great, but we only have 3 diapers, a bag of Goldfish crackers and Eleanor drank all the water. Why didn't we bring a paddle? Or a map? How on earth are we going to navigate all this unfamiliar territory?

I'm writing this on my phone so I can't insert photos amongst the text, so I will end this with a plethora of images to reassure myself that her life isn't that bad and we are so unbelievably blessed/lucky to be home with our healthy-ish children. It sure beats the alternative.