March | 2014 | Chloe's story

I foolishly thought that perhaps the heart surgeries would be the toughest part of the journey with Chloe. Truth is, although those moments, the handing over for surgery, the anxious waits, the recovery… that was hard. Well, hard doesn’t do it justice.

I’m a fool who thought that day to day life, the ‘normality’ of having a baby at home would be much easier. Truth is, life with Chloe, day to day, is actually pretty hard. That is, to be specific, life with a special needs child is a hard slog. It’s worth it, I get the laughter and the giggles, the milestones, all of these are celebrations, but on a daily basis? No one can really understand how hard it is unless they’ve lived it.

Recently more issues have arisen with Chloe that we need to deal with. Firstly it’s the walking. Chloe is motivated to move, she always has been. She doesn’t want to stay still, she wants to explore just like most toddlers. But her body doesn’t cooperate with this! She wants to walk, desperately, but her low muscle tone gets in the way. She pulls herself up on furniture and cruises around, she can’t yet stand on her own with out support. And her feet have a lot of pronation. This is where her feet roll inwards and she is almost walking on her ankles. This doesn’t hurt her so I’m told. It’s just her way of doing what she wants, which is stand!

So we are going to try orthotics in the way of AFOs. You may have seen these on children before, they are a brace that goes around their foot and up to their knees. We are off to the orthotist on Monday to get her leg cast made, should be interesting for them, trying to keep her still long enough to do it!

Well, feeding. Feeding has declined. Not just a little bit, but a massive amount. All the things I’ve done to get her to feed are now counterproductive to this point. The distractions, the toys, using TV. They no longer help. Really, it’s a matter now of teaching Chloe that food time is eating time, not play time.

I usually try to give Chloe three meals a day. I don’t give her snacks because it’s so stressful, but usually I give her pediasure as a snack (A high calorie/energy/fats milkshake made for children with medical issues). This pediasure I add her to milk or give her poppers flavoured vanilla. It’s costs us about $70 for 3-4 weeks of it (in powder and popper forms). Sometimes she drinks it and sometimes she doesn’t.

The last few weeks her meals have declined in the sense that she would have one ‘bad’ meal every 2-3 days, and the rest be average or really good. What does a ‘bad’ meal look like? Often screaming immediately after being put in the high chair, followed by banging her head or hitting her head. Sometimes I manage to calm her down with a toy and she might start to eat some puree or self feed with whatever I’ve offered. These meals are usually exhausting for everyone, both Chloe and myself.

These days, ‘bad’ meals are nearly every meal time. I was so glad this week when we went to feeding/speech therapy that she did exactly all of these behaviours for the ST. She really put on a show. She banged her head, got distracted, stored the food in her mouth (then spat it out), hit herself, squirmed, threw food everywhere.

And I know, some of you might be saying that your toddler does this too. Please remember, Chloe is not a ‘regular’ toddler…she has a syndrome. Alongside that she has had a lot of medical intervention. She has sensory problems, she’s not just a ‘picky’ eater. She has an eating disorder.

The ST and OT are excellent and have intervened really well. They are very supportive. We have a plan to try and tackle these issues. Firstly it involves changing her mealtime routines to 5 times a day. That’s 5 proper meals, not 3 meals and 2 snacks. That’s offering 3 different types of food in a sitting and not allowing her to play or be distracted. She must learn that mealtimes are for eating, not playing.

Before each mealtime she must be allowed to have some sensory play with me. This means 15-30 minutes of playing where she can get her ‘sensory’ needs delivered, so she is calm before trying to eat. Some of these things include playing with a vibrating toy, squishy balls of different sizes, fluffy items and brushes. And maybe some water play.

One thing Chloe really likes is water. As soon as she see her water cup she wants to play with it. She wants to put water all over herself and splash with it. Up until this point I’ve allowed her to do that while trying to put food in her mouth. I think I’ve mentioned before that it has been like she doesn’t want to know she’s eating. Well, at this point, she needs to know she’s eating. So no more water cup or offering water before or during a meal time. Once she is finished and indicates to me she’s done (yes!! She will sign for ‘done’ [finished] and sometimes even try to say it) then I take the food the away. And because she doesn’t like her face being wiped, I no longer do this in the highchair. No negative associations with the mealtime! So I put her on the floor and wipe her face and then let her play with her cup and drink some water.

It seems like a lot! It is. And I can’t be sure if this will work, or help the situation. We may end up with tube feeds anyway. This would be Chloe would need a surgery to place a Gastrostomy Tube, which is a little tube that goes into her stomach through the abdomen wall, where feeds can be administered. Lots and lots of children happily live every day with G-Tubes. It’s not the ‘end of the world’. But in an effort to try and give Chloe as much normality as possible, I want to persevere to get her feeding to enjoyable state, and one that delivers enough nutrition for her growth and development.

Chloe definitely has some sensory issues. The OT refers to it as ‘tactile defensiveness’. Certain things will make her crawl away at great speed. Or become very wary. Especially those weird squeeze rubber balls that have tentacles. Actually, come to think of it, I don’t care much for those either!

So onward and upward. Chloe is doing rather amazing all things considered. She continues to bring smiles to those around her. And lately she’s been experiencing the swings in the park and I’ve never seen such a big smile plastered all over her face!

Love this phrase. Defying the odds. So many of kids like Chloe do this every day, so doesn’t that mean that they are just doing the ‘normal’?

When we first heard the diagnosis of Chloe’s heart condition, almost 80 odd posts ago, we were given a pretty bleak diagnosis. I read and researched and got in touch with other families affected by CHD. I read stories of hope, kids who were doing amazingly well. Defying the odds.

Mike remained reserved about the whole thing, while I decided to buy in to the ‘hope’, that although doctors told us that things could be difficult and challenging, or even result in the worse case scenario, I knew that there were other children out there living happily and normally.

The doctors told us to expect long hospital stays, unexpected hospital visits, sickness and surgeries. And complications from surgeries. Then we learned of Chloe’s SLO, and more unexpected and unknown prospects were told.

I read blogs and stories from others who had experienced some of the things in store for us. Stories of children who were tube fed, on oxygen, had complications that were ongoing…lots of the ‘expected unexpected’.

Yet, even though we have struggles, Chloe really has had such a smooth ride.

In the last months or so she is trying hard to walk. She pulls herself up on furniture and cruises along holding on. We’ve been to see a podiatrist about her feet, and although he says there is nothing physical going on from preventing her walking, she does have a lot of rotation in her ankles and not much strength. We’ve had some special inserts made for her teeny tiny feet that will help correct her foot position. And gosh does she love to stand! The only problem now is that she doesn’t know how to sit down from standing. So once she’s up, she starts getting cranky after a few minutes! And I have to sit her back down. And then it’s pretty much rinse and repeat! She does this in the cot too! So frustrating. I think it’s a double edged sword isn’t it! We long to have her meet these milestones, even though we’ve been warned she might not, and when she does it adds another level of frustration for her. (And us!)

When you hold onto her she is taking steps which is just amazing. She’s gone from standing with you and getting very cranky about trying to walk, to laughing and giggling when you do it in just a matter of weeks.

So, in true Chloe fashion, she continues to ‘defy the odds’… stay tuned.

Here’s a few picc of Chloe…