18/09/13 - The Packing

I'm sure I touched on this last time we headed south for surgery, but the trip involves a whole lot more than just jumping in the car and driving for four hours. Even though we are lucky enough to get a room at Ronald McDonald House - who provide beds, kitchens, bathrooms - we still need to take a mountain of stuff with us.

For example: Ellie needs a portacot for the nights she will spend at the house. With a portacot comes baby bedding, sheets, blankets, pillows. Then there's the bottles, sterilising equipment, syringes, medications, formula, feeding gear, the pram.

The four of us need enough clothes to last the trip. Yes, there are washing machines, but we don't want to be worrying about the washing every day. So we each need at least five changes of clothes. Make that 10 for Ellie. That's a suitcase and three backpacks worth of clothes. Shoes. Toiletries. Nappies. Wipes. 

Sophie loves the toys and books at the house, but she also needs her own creature comforts to make her comfortable over a long stay. So we need to take her "mankly," her gruffalo, the portable DVD player, DVDs, colouring books. We need mobile devices, cameras, chargers, pens and paper. 

My list of things to pack in our regular-sized car is four A4 pages long. 

And while I'm worrying over whether we will forget anything, I'm also trying not to stress about the finances. Drew will only get paid for two days out of the at least 10 that we'll be away. Just because we won't be home doesn't mean we don't have to pay the rent, the power, the phone bill. I've done my best to get in front on everything, but it's still going to be tight. We need to buy food and pay for parking, and Sophie needs to do something other than sit at the hospital the whole time.

I don't remember being this stressed about all of these things last time. Maybe I was too busy worrying about the actual surgery, where as this time I'm not over thinking that part. Maybe I simply can't NOT worry about at least one thing! 

Three more days until we leave. I just hope I go back to feeling calm once we arrive and unpack! 

16/09/13 - The Final Check Up

Today we took Ellie to the child health clinic for a check up. I wanted to get an idea of her weight before we go in to surgery, so we know how much she loses afterward. Last time she did surprisingly well and still managed to put on weight, but I'm expecting this one to hit her a lot harder.

We are incredibly lucky with Ellie, in that she has never really had any feeding issues. Once she got the hang of the Haberman bottles she was off, and she never really looked back. There were a few times when she would get sores in her mouth and wouldn't want to take the bottle, but we've never had the trouble getting her to gain weight like a lot of cleft babies experience. 

For me it's reassuring to know that she has a bit of extra weight behind her going in to this operation. Even if she does lose a bit she will still be healthy, and that means she can get on with the business of recovering. Today she is a plump 9.5kg. 

I also took the chance to talk to our nurse about the ridiculous paediatrician who called Ellie obese. I explained what he'd recommended and that I'd ignored him, and she agreed with me totally. She said that because Ellie had always been tracking along the same line on the growth chart, because she was still within the normal lines, and most importantly because she has major surgery coming up, there was absolutely no problem with her weight. I know by now that I did the right thing on that one, but it's always good to get the reassurance of a professional.

The funny thing is, when Sophie was a baby we got stuck with a really stupid child health nurse. She was an idiot. She disagreed with everything we did, she ignored Drew at every appointment, and she accused me of neglecting Sophie and causing her to be hospitalised when she got pneumonia. I was determined that I would never take another baby of mine to the child health clinic ever again. But we have been very lucky with Ellie to get fantastic nurses who all seen to know what they are doing, and all support us one hundred percent.

So that's it. We are all set to leave on Sunday. And I still feel calm. I just have the feeling that everything will be ok this time. I hope I'm right! 

15/09/13 - Wonder

Because I like to stay up to date with anything and everything cleft-related, I subscribe to google news updates on certain search terms. Each morning I receive an email with any news stories that feature the words cleft lip, cleft palate or craniofacial. A lot of the time it's only stories about amazing doctors traveling to places like India or Africa to operate on children who would otherwise go without the life changing surgeries, but every now and then I get a story that I find really interesting or helpful.

This weekend I found one of them. It was a news article about a book by author R.J. Palacio, called "Wonder." The article explained how Palacio was moved to write the story after an encounter with a craniofacially affected little girl that she felt she handled badly - 

"Palacio tells NPR's Michele Norris that the book was inspired by a real-life encounter with her own kids six years ago. They were at an ice cream store and sat next to a little girl with a severe facial deformity. Palacio's 3-year-old son cried in fear, so the author grabbed her kids and fled. She was trying to protect the girl but also avoid her own discomfort."I was really angry at myself afterwards for the way I had responded," she admits. "What I should have done is simply turned to the little girl and started up a conversation and shown my kids that there was nothing to be afraid of. But instead what I ended up doing was leaving the scene so quickly that I missed that opportunity to turn the situation into a great teaching moment for my kids. And that got me thinking a lot about what it must be like to ... have to face a world every day that doesn't know how to face you back."

I love reading, especially books like this, but for some reason I've never done a search for books about cleft kids. I don't know why... Maybe until now I just haven't been ready subconsciously. But as soon as I read the article I knew I had to read this book. I downloaded it on my kindle straight away, and just the first few pages had me hooked. I was laughing and crying all at the same time, and I knew that this story was going to change lives.

There's a quote in the book that I love - "given the chance to be right or be kind, choose kind." The author now does tours around schools in the United States, where she goes in to the classroom after they've read the book as a class, and she teaches them about choosing kind. It's a great concept, and will do wonders for teaching kids to be more accepting of other people's differences.

The number one thing that worried me when we got Ellie's diagnosis a year ago was the reactions of other people, particularly her peers. I've been to high school, I know how nasty kids can be. I don't want Ellie to ever have to experience bullying because of something she has no control over. It's not her fault she has scars on her lip, it's not her fault her nose is flat, it's not her fault that her jaw is misshapen. It's not her fault, and it's not all there is to her. I don't want her to be defined by her appearance. Which is why we need to make more kids aware of conditions like cleft lip and palate. 

The section that really resonated with me though was written in the eyes of Auggie's older sister. She talked about how she felt like she had no right to complain about anything in her life, because nothing would ever compare to what her brother was going through. She never asked her parents for help because she knew they were busy caring for Auggie. I've always been overly-conscious of Sophie feeling like this. I worry that she misses out a lot. So reading that hurt a little bit. 

There were a lot of parts in "Wonder" where I felt angry for Auggie. There were times when I wanted to punch a ten-year-old in the face. But there were also times that I cried because of how nice some people can be. And they're the sort of people I want in Ellie's life. 

The book costs $12 to download on Kindle. I recommend everyone reads it at some point, and share it with your kids. It will change lives. 

14/09/13 - Thanks to the Village

The saying goes: it takes a village to raise a baby. We mightn't live in an actual village, but we certainly had a whole array of "villagers" helping out along the way. Or maybe that should be "village people"!

As we get closer to Ellie's next surgery the offers of help and well-wishes are pouring in again. From the family who will be physically present to help with the girls, to the friends who provide emotional support when I'm struggling to keep it together, to the strangers who Ellie has touched along the way with her strength and resilience. Each and every one of you make it possible or me to keep putting one foot in front of the other when things are a bit hairy.

I guess that's the village they're referring to. And I'm sure that when Ellie's old enough to understand just how many people are out there cheering for her, she'll be just as amazed as you all are in her! 

12/09/13 - The Great Toast Debacle

This morning has been less than fun for poor old Eleanor. Over the past few days I noticed a strange smell coming from her nose, and realised that its been a while since she leaked anything from her right nostril. Upon closer inspection this morning I found a piece of toast lodged in the back of her right palate groove. 

Usually when something gets stuck up there it washes out after one or two bottles. If it doesn't we can stick a finger or a cotton bud in and wiggle it out easily enough. But this was stuck in a different spot, and it was much closer to her throat. I was a bit worried about poking around in there on my own in case I hurt her or made it worse.

I decided that before I tried anything I should call our speech pathologist, Sarah. She was great as usual, and reassured me that I couldn't damage the palate, but to be careful that it didn't dislodge and "go down the wrong way". She suggested that if we couldn't get to it safely then to take Ellie to emergency and let the professionals tackle it. 

So, much to Ellie's horror (and with very shaky hands!) I dosed her up with Panadol and got out the cotton buds. It's very hard to stick things in a palate. You need to angle past the pre-maxilla and point upwards but not too far.... It's tricky. Luckily I managed to push the pesky bit of bread forward enough to be able to pry it out without her swallowing it. But in the process I've rubbed the inside of her palate and it started bleeding. Bleeding and Ellie... Not my favourite sight.

After it was clear I flushed her nose with saline, which set off her sneezes. She sneezed 15 times during the minute long exercise! But at least there is now a free flow through the nostril! She's very upset and clearly in pain, so there'll be lots of cuddles for my little princess today.

We need to keep an eye on her for a few days and keep flushing it through, because there is a risk of infection from any left over residue. And with surgery less than two weeks away, the last thing we need is a palate infection stopping us in our tracks. 

The joys of a clefty. I'll be more than happy to see the end of these troubles on the 25th. 

7/09/13 - She Speaks!

I resigned myself long ago to the fact that Ellie wouldn't be able to speak until after her palate repair. That doesn't mean that I didn't feel a little bit sad every time I heard that another baby in Ellie's age group had started saying basic words.

This morning though, while she was eating her toast, I heard something that almost sounded like "mama". I figured it was just my imagination though - you can't talk without a soft palate, right? Throughout the day she kept saying it - "mama-mum-mama" and she would look straight at me when she said it. That's when I realised it wasn't my imagination at all - my princess was saying mum! 

I don't know how it's possible, but I'm sure not questioning it! Ellie has always been a miracle, I guess I should never have expected this to be any different!

05/09/13 - Tummy Time

Ellie has always hated tummy time. I think it was a combination of not getting it in the early weeks because of her hospitalisation, and the reflux-monster. We've been lucky if she'd stay on her tummy for longer than a few seconds before spitting it and screaming to be turned over. 

It never really bothered me, but I did wonder if it would mean she wouldn't learn to crawl at the same time as others. One report I read said a baby couldn't learn to crawl from the sitting position, while another said they needed to sit before they could crawl. Confusing.

But lately something big has happened in Ellie's little world. She's suddenly this very happy, smiling baby girl, instead of the screaming monster we've have for almost eight months. And with that comes a new acceptance of her tummy time. Now she flips herself from a sitting position to laying on her tummy, and once she gets there she starts pushing herself up and rocking on the spot. Crawling can't be far off.

Can she figure it out before her operation? Do I really want her to? Chasing a crawling Ellie around Ronald McDonald House could be a challenge, and then of course those pesky arm splints are going to get in the way post-op. who knows. As always with Ellie, it's one day at a time!