Moving and Shaking

Rainbow Bright

Eleanor had her Early Intervention assessment two weeks ago and I have been dreading writing a post on it. It is a relevant part of her recovery and a big part of her life right now, but it is so hard to face. Everything is improved since last time, which is great, but because she is six months older, the numbers seem so far off. Our EI specialist wrote out the basic gist of what her full report would be and left it with me. I let Eleanor play with it and kept stuffing it into her toy box during clean up. I did not want to look at it, so now it is a hot mess. 

I pulled it out tonight because a) I'm ready to deal with it and b) the recycling is going this week.

Sorting the recycling. And her diapers, just for good measure.

So here's where my 22 month old toddler stands (sorry, sits - unless she is holding onto furniture):

Gross Motor: 8+ months
Fine Motor: 11+ months
Adaptative (play skills): 12-13+ months
Language (expressive): 15 months
Language (receptive): 18 months
Personal Social: 12-15+ months

It's not the worst, I know that. It's just hard to see that she is on par with a kid born a full year later than her for some things. I thought her gross motor would be further along, and I'm fine with where she is at. Her tumour caused incredible amounts of muscle weakness and then spending 7 months on the flat of her back being pumped full of toxic chemicals did not help her get any stronger. But the fact that her play skills are falling behind is a bit shocking. I feel like that was in my control to help facilitate. I justify it by telling myself that while most parents or caregivers teach their kids to stack blocks and colour with crayons, I was busy injecting enoxaparin and changing the dressing on her central line. Basically, I am trying not to feel bad.

And while I am crying in the corner and licking my wounds, Eleanor has been busy. Very busy indeed. I know they aren't related, but in the past two weeks, Eleanor has had a massive development surge. It's like the lights came on after that assessment and she is growing in all sorts of ways. After 22 months of absolutely no attempt at audible language except "hi" and a few "h" words, she is repeating all kinds of words. She is terrible at it. Totally lousy, but you can hear her trying to say "quack", "duck", "block", "Atia", "Daddy". It's all there, and seemingly out of nowhere. After 22 months of wondering if she was understanding or just stubborn, she is acknowledging simple commands. After a year of only being able to sit and 4 months of army crawling, she is figuring out how to cruise. Again, really bad at it, but everyday gets a little bit better, a little bit stronger, a little bit more confident.

So yeah. It is will be six months until her next assessment and I can't wait. I feel like she has already surpassed so many of these markers that she will be all caught up by April. Can you imagine? Maybe that is overreaching but a girl can dream and a baby can grow and move and shake.

And crawl all over the couch and into the sunset.

Shame Spiralling in a Tub of Cornstarch

I'm so tired. My whole body hurts from not sleeping.

We are exploring a solution to Eleanor's overnight hypoglycaemia (we give her a double dose of cortef at bedtime), but it's hard to tell if it's working because she developed a cold. She is back up on her high dose of steroids around the clock to avoid a hospital stay, and she is Hulk-Smash-ANGRY all the time. I've tried to curb her activities so we don't infect others and she can recover, but she is past the point where our house is interesting. She climbs all the furniture, throws her toys around and then proceeds to climb on me. And scream in my face. And pull my hair. It is super fun.

When I awoke to the dulcet sounds of her screaming her head off at 3:55 this morning, I couldn't contain it anymore. I had an all-out, "WHY ME?" sob-fest as I tried to rock her back to sleep. It all seems so futile. If we double her steroids, she wakes with 'roid rage. If we keep her steroids level, she wakes with dangerously low blood sugar. So our next option is cornstarch. We have to feed her cornstarch before bed and this might solve all our problems. Seriously endocrine? This is your best solution?

So I feel worn out. Worn down.

Exhausted doesn't even begin to cover it.

This is just our reality now. We will have to figure out how Kris can do his job and I can get through the day with her while we exist on very little sleep. And I curse it! I hate it! I have never been very good without sleep and I feel selfish and protective over that aspect of my life. My body needs REST! And that is where the shame comes in. I can wake at 4 to a daughter who is in relatively good (albeit complicated) health, or I can wake at 7 and be like so many parents we have met who have lost their children. It's like that expression "I'll sleep when I'm dead", but much, much worse.

Ugh.

It's 8:30. I am going to bed and praying that tomorrow is better.

So so thankful

We had a lovely Thanksgiving this year. It was really simple - just family gathering and children playing. Kris made the turkey and the stuffing so my mum was able to relax and enjoy the day a little more. Eleanor was kept busy by chasing around her big cousins and I ate alllllllll the food. It was awesome. We couldn't help but reflect on our year and what Thanksgiving was like last year. Eleanor was crazy sick and I begged Kris to stay late at the hospital with me. Henry's grandparents were kind enough to bring a Tupperware container full of turkey dinner to us from Ronald McDonald House. We dined in Eleanor's tiny hospital room, the two us squished on my cot and whispered to each other about how much our lives sucked. It was a very different story this weekend!

Eleanor had a visit with all her doctors at the end of September and they all went pretty smoothly. We continue to struggle with early mornings (she wakes between 4:00 and 4:30 every day) so endocrine suggested we test her blood glucose every morning. Sure enough, it's super low. It levels out as the day goes on, but she definitely wakes up a cranky-pants. I don't know how we are going to fix this; maybe we can feed her cookies in her sleep? Liquified? But I am nerding out gathering all the data! We are tweaking a couple of her meds: we've cut her Mitotane down to twice a day instead of three (I think I mentioned that before), we've added an extra florinef to boost her sodium levels and we are phasing out her blood pressure medication completely! Her little ticker is doing great and the cardiologist thinks she will be fine without it. We will do an ECG in a couple of weeks to make sure he's right(!) and then we are only on adrenal replacement drugs. And her adrenal suppressant/chemo/insect repellent (Mitotane), of course.

I posted awhile ago about Eleanor pulling herself up to standing. It has become an obsession. She no longer needs a "flying leap" type take-off; she can sit right next to the couch/ottoman/chair/side-of-the-bathtub(!) and pop up. It's crazy. Well, it's not CRAZY, it's just...no, it's crazy! I was combing through photographs of the little lady from the spring, and I have this whole series of her sitting up and playing. It looks like nothing, but I took them because it was the first time she had sat up on her own. Until April she couldn't do that and now it's October and she can pull herself to stand. Pretty soon she's going to be cruising and then comes walking on her own! Gah!

I've been taking advantage if her good health/mood/disposition and have been taking her to various baby groups around town. She's making friends! There's this one little girl who thinks Eleanor is AWESOME. She sits really close to her and they hug each other lots. I caught her stuffing Eleanor into the oven in the play kitchen and she said that yes, she was baking the baby. So cute! She's only six months older, but she dotes on her like a little sister. Sweet.

Before I sign off for the night, I want to apologize for being a little MIA over the past little while. Eleanor has kept me really busy and her early mornings make for tired nights, so I haven't had the energy to post. So here's a super cute (and super blurry) photo of Eleanor and her bestest friend, Atia.