Building Blocks

I hate Lego. I always have. Eleanor has a Lego set that creates a treehouse for Pooh Bear and his 100 Acre Woods friends. We have had it for two years and hadn't played with it too much. All she wanted to do was mouth the pieces and then when she grew out of that, she would smash what I had just created. I was okay with that, but it wasn't super fun for either of us. The same goes for colouring and painting or playing with Playdoh. I figured she just wasn't into fine motor, rainy day activities. 

Well, like everything with Eleanor, a little time and distance equals progress. 

She built this all by herself. It's not particularly "good" or interesting or remarkable but I think it's amazing. I didn't coach her on what goes where, or how to fit pieces together, she just worked it out. And even with my hatred of Lego and my "if it doesn't look like the box, WHATS THE POINT?" mentality, I think this is cool. 

It probably would have been cooler if she hadn't been reciting "shit, shit, shit!" the whole time. I kept saying, "oh sit! Mummy sits here, Eleanor sits there. Sit sit sit." I have no idea what she was trying to say. 

And as for the other stuff, well, that's exploding too. She loves colouring with her crayons and playing with finger paints. I think because she spent the last year+ working on her gross motor (she was exclusively bum scooching this time last year!), she never had time to pay attention to the smaller things.

One of those "smaller things" is her speech and language. She has gone from a First Word(sign) User to a Combiner in a few short weeks. She is starting to use short phrases and they are usually requests (call daddy) and I can never say no. 

And she can say her name. The most beautiful sound in a single word... Eh-nore! My love for flowery girl names is coming back to bite me on the ass. I knew they would be tricky to spell, but I never realized how hard they would be to say! Poor Penelope has been given the unfortunate nickname "PP" and Eleanor makes valiant attempts at her own name, but it still sounds a little like Pooh's melancholy donkey friend. 

What's up Eeyore? Stuck in a water trough? Sucks to be you.

She is catching up by leaps and bounds. Everyday she seems more like her peers. I'm so excited to watch all these new developments unfold and hear so many new words... even the naughty ones!

Say "Ahhhhh...!"

Today I was graced with the task of taking Eleanor to the dentist. In Vancouver.

Road trip...?

ROAD TRIP!!

We went to see the dentist here a few months back and made the decision to move her care over to BC Children's. We could get her teeth fixed here, but it would take a lot longer and I was assured that if we went the BCCH route, it would be done before Christmas.

And the irony of making a trip to Vancouver three months into our first six-month scan rotation is not lost on me!

I took a peek in her mouth earlier this week, and it is pretty devastating. Her top right baby molar is all but gone. It's just a brown, rotten stump. I take some solace in the fact that it was probably dead when it broke through, as it doesn't seem to cause her any pain. I hope it doesn't cause her any pain. The dentist said to watch out for swelling and any other sign of infection, otherwise her surgery is booked for the end of November. They will extract the ones they can't save, which costs less (yay!), but will probably mean orthodontic work later (boo).

Dental plan!

Lisa needs braces.

Dental plan! 

I have to say, the staff in the dentist office were incredible. The dentist was so awesome with Eleanor. I have no faith that she will do as she's told or stay calm, but some health professionals are so incredible with kids, even Eleanor will comply! Or maybe she's just less cranky.

It is pretty hard to be cranky with these cool shades.

The receptionist found a loophole after I recoiled at the price tag attached to the consult. In fairness, it was over $100! For a five minute visit! But she made it work and another lady came and talked to me about payment plans and government assistance. People really take pity on those of us without dental insurance. I knew about all the programs they offered, I just liked them being so lovely to me. It was kind of a crazy day. Hauling Eleanor and her sister all the way to Children's and back on my own was a teensy bit stressful. Eleanor was pretty good, but by the time we got on the ferry to come home, Penelope had reached her limit. She's asleep beside me right now and still sniffling from crying so hard. Poor thing. Eleanor basically put herself to bed and told her daddy before he left her room, "Daddy? Home. Mummy, daddy, baby home."

                          ***

Eleanor met a boy on the ferry. He took her by the hand and walked her around the top deck. Twice. There's that compliance again! 

The further she gets away from cancer treatment, the less feisty she seems to be. Whenever she gets into situations like this or when a kid takes something from her, I always get down to her level and tell her she can say "no". She rarely ever does. 

Unless it is her sister who is ruining her mojo. Then it's fair game!

Tummy time in the playground, anyone?

I try not to interfere too much, because I know she is capable of saying "no", and if it was really upsetting her, she would show it in some way or another. I just wish she would show a little of that spark to the rest of the world. I wish she would display what we see at home to the world around us. I hope she knows what an incredible warrior she is. Sometimes she just seems so passive.

Yoink. 

Bless. 

Ultrasound? More Like Ultrasuck!

It's been three months since Eleanor's last trip to Vancouver for scans. Her doctor over there has extended her time between scans to six months, so this is the longest we have been away from Children's. Crazy. But kind of awesome. In lieu of a scan, he requested that Eleanor get an abdominal ultrasound at the hospital here. I got the letter in the mail about a month ago and the very chipper automated message robot kept calling me last week (Hello! I'm calling to remind you that Eleanor Goudie is to have an ultrasound at Victoria General Hospital...). I felt confident that it would go smoothly and Eleanor would lie still and be fascinated with the procedure. After all, there would be no pokes, no sedation, nothing scary at all. She would just miss breakfast and it would all be just fine.

Boy was I wrong.

We woke up nice and early and Kris helped me get the girls ready. We put on Sesame Street for Eleanor while we stuffed the diaper bag full of goodies for afterwards. I sat down to finish my tea and realized that the episode we had put on was all about food! Every single sketch/clip was about food. Eleanor noticed and started pointing out said food and asking for "bah??" and "toe??" (banana and toast, with extra question marks for her fierce up-speak). I ushered her out the door and into the car. We were going to be seriously early but there was too much temptation in the house. To kill some time. I went through the drive-thru starbucks and got a coffee. She was still on to me. "Nim? Nim?" while signing for milk. Frack. "No Eleanor, it's coffee for mummy. Yucky coffee."

We arrived at the hospital 30 minutes before her procedure, which is what the friendly robot told me to do, and I kept my fingers crossed that we could get in early. No dice. We waited with all the other people... sorry, I meant to say OLD people. We were spoiled rotten to spend so much time in a children's hospital. Being a toddler in a grown-up hospital stinks. Being the mother of a toddler in a grown-up hospital IS THE WORST! There was nothing for her to do and she was seriously antsy. We walked in circles, read magazines, sanitized our hands and we still had more 20 minutes to fill. The other patients were not impressed. I suppose it wouldn't have been that bad if it was just the two of us, but I had a tired Penny strapped to my chest and she was begging to sleep. She has reached this point where she is not cool sleeping "on the go" so I often end up with a baby crying herself to sleep right in my face. It's a little bit tough, but today she was doing okay.

They finally called in us and the second Eleanor got up on the bed, she freaked out. She was writhing around, crying, screaming - you name it. No one had even touched her. She's had lots of heart echoes and she doesn't love them, but she's never reacted so poorly. I tried to comfort her by singing songs, stroking her hair, kissing her forehead... nothing seemed to work. The tech wasn't much help, but she moved as quickly as she could to get us out of there. She did the right side, the left side and then checked out her pelvis. Great. Let's go home. I gave Eleanor a bag of grapes to get her satiated and we headed down the hall. We were almost at the reception desk when she grabbed us and said, "I didn't realize we were supposed to do the whole abdomen! I need you back."

Let the tantrum begin!

Holy hell. She screamed so loud and started crying hysterically. Penelope started to chime in at this point and I would like to extend a huge F-U to the woman who walked by with her fingers in her ears as I scrambled to pick up one child while juggling my bag, our coats and two crying children. Give me a break. Seriously. I carried her kicking and screaming back into the room and somehow we made it through. We got out to the car and I sat there and wondered would it have been better to go to Vancouver? Would the travel, the sedation, the hassle have been better than that gong show I had just experienced? Why on earth did she freak out so much? Maybe I treated it too lightly. Maybe she needed more prep before hand. Maybe she just felt gross because she was hungry. I have no idea, but it was shocking. Next time I am definitely bringing another set of hands. And a colouring book!

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.