I realise it’s been a few weeks since I updated on Chloe’s progress…so I’m going to separate this one up into sections!
Growth
Children who have SLO do not grow fast. I feel like I constantly say this to the doctors. Not Chloe’s paediatrician, but other doctors who simply forget that she doesn’t just have a complex cardiac condition, but also a complex genetic disorder. Chloe is growing, and by WHO standards (World Health Organisation) she doesn’t even make the growth charts, falling off the 1st percentile. In length, weight and head circumference. But on the SLO growth charts, she is average! Except for her head size, which is a little small due to the microcephaly. Though if you look at her, she’s all in proportion.
So finally this week she cracked the 6kg mark! 6.03kgs just to be precise…though as I type this she may have put on a few grams! She is 62cm in length. Which means in length she has grown out of the 000 onsies…but not for weight! I did go through her clothes this week and had to get rid of some things she no longer fits! Which is another excuse to buy more cute clothes!
So anyway, I’m happy if she continues to grow, albeit slow…as long as she grows and puts on weight!
Feeding
Well feeding always remains one of the day to day constant obstacles. Back when Chloe was post her PA Band surgery, I worked hard to get her to feed. Sometimes it would take me over an hour to get 50mls in to her. Sometimes she would just graze all day, taking sips here and there. I was pretty determined that she would feed orally, so I persevered. She always like to tread a fine line between having all her feeds orally, or having a ng tube for top up feeds.
She improved immensely, and I got her in a routine of 3 hourly feeds through 24 hours (yes even through the night). So basically her day of feeds would be around 6am, 9am, 11am, 2pm, 5pm then a top up at 6:30pm for sleep, then feeds at 9:30/10:00pm, 1am, 4am..then up for 6am, or sometimes later feed.
Her Glenn surgery fixed her heart…but not her feeds! Post Glenn surgery, all this hard work of routine feeds, and getting in a good amount was gone and we were back to grazing all day, sips here and there and feeding every 2 hours, sometimes 1 hourly through the night. Even if she only took 20mls I considered that a win, as every ml for Chloe is important.
Finally we’ve had some progress in the last week. She is starting to resume 3 hourly feeds, but as I tell most doctors and therapists dealing with Chloe, “the only consistent thing about Chloe is her inconsistency…especially with feeds”.
BUT…solids continue to be a ‘work in progress’! I get amazing help from Disabilities Queensland, and work the speech therapist, without this vital help I don’t know where I’d be. So many amazing ideas, she educates me on the development of feeding, and feeding aversions, and how Chloe will progress through all these.
Perhaps it’s Chloe’s reflux, or the medical intervention, it could be SLO, but Chloe really struggles with solid food. However, she likes to be independent with it…it has to be Chloe’s way…or NO WAY! (Don’t know where she gets that trait from!) Chloe will take all the utensils, and will attempt to put these in her mouth herself, but she will not let me feed her unless it’s something she potentially likes. So far, she has tolerated eggs, avocado, and strangely enough my puree beef casserole. But she doesn’t really EAT it…just plays with it, tries to swallow it…mostly spits it out again. She’s not a fan of fruit… or much else. But she does like to suck on salami sticks and hot chips!
I try at the moment to get her to experience food…she plays with it, covers herself in it… all these experiences are supposed to help her accept the new smells/flavours and textures and hopefully one day soon, she might eat some!
New issues
Last week, the birthmark on Chloe’s eyelid stopped being quite faded, to bright red…then she developed a rash on her face. Much to my, and her dismay I’m sure, she seems to have developed the dreaded eczema. Poor thing. Hasn’t she been through enough? I smother her in cream and it seems to help, and hopefully it won’t hang around too long. I can tell it unsettles her because when she’s swaddled, she nuzzles her head in my arm in a way to try and scratch her face.
Sleep
Sleep is for wimps and weaklings I’ve decided! Who needs sleep? Sleep isn’t important. Chloe’s sleep has gone from bad to worse recently. She has been waking through the night crying every hour…the only thing that settles her is cuddles. Sometimes a short feed, but really, cuddles and tapping and more cuddles. The second you try to put her back in the cot she cries.
It’s either gastro upset with wind or reflux or constipation, eczema or she’s just going through a phase. In the past, Chloe would wake in the night, feed, go back to sleep. The last week has been long! Hopefully she will settle back into a better routine soon.
Cholesterol Therapy
We are approaching nearly 8 months old and still waiting for a start to cholesterol therapy. You may be wondering what this is. SLO is a syndrome that is caused by the lack of the body making cholesterol. Many families decide that giving cholesterol to help with this will in turn help with development.
The medical community is divided on this front, many doctors believe that if the cholesterol wasn’t there for development in the first place (in utero) then you can’t change what’s already been ‘made’. Some believe that by giving cholesterol you can help balance some of what is missing. I’m inclined to believe that I should do anything to help Chloe grow and thrive. As long as it causes no harm.
After weeks of emailing and nagging I finally got somewhere! However, it is not the ‘usual’ cholesterol that other SLO families use. It’s expensive (I just paid $120 for a 450g tin to be delivered) and I know a family that paid $46000 in three years to give their child cholesterol therapy! I really get frustrated at the lack of support for medicines like this. I do have a health care card for Chloe, but that means nothing to get medicines like this.
So anyway, I’ll start with this tin (how on earth am I going to get her to drink it is beyond me!) and I will further research the other options. I have very helpful contacts through the SLO facebook site, who willingly share knowledge and information, and contacts, I don’t know what I would do without these people!
What else?
What can I say about our little miracle? Chloe is such a joy! She has the most infectious smile and giggle. Nothing amuses her more than the simplest of things, an eyebrow raise, a poking tongue, blowing a raspberry, and lately, doing a huge sigh seems to absolutely crack her up!
She continues to do far more than I ever could have dreamed. In fact, a part from being little (and the obvious scar down her chest) I don’t think anyone would realise there is anything going on. She babbles, and grabs things, and is doing quite a good job at starting to sit on her own. Put her dummy out of reach on the play mat and she will roll to her side, and try to get it…she hasn’t quite rolled all the way yet.
The time is coming too when I have to think about going back to work. My paid parental leave will finish soon and we can’t afford for me to stay home indefinitely with her. We are in the process of organising an in home carer, someone who can spend the time with her solids feeds, her bottles, her sleeps, give medicines and do play time and exercises with her in order for her to keep developing. Please pray the perfect person will present and we will be able to afford it!
In the next week we have another cardiac review in Brisbane, and a meeting with the Gastroenterologist. We are hoping that the GI doctor might be able to help us sort the chronic constipation and wind problems and suspected tummy problems she gets. Though I’m a little reserved on the issue of any surgical investigation as she has already been through so much.
We have ongoing speech therapy and physiotherapy which I love! The girls who work with Chloe are awesome as I have said already! Goes to show that fighting for that help was well worth it! (don’t know if I mentioned that in trying to get assessed with Disabilities Queensland I had to speak to a team leader who does the assessment…he wanted me to access a different service. Well, to cut a long story short, I just flatly refused to get off the phone until I got the assessment I needed and the services I’m entitled to! Take that!)
And finally, please send up a prayer for a new friend of mine…I won’t mention her name but she knows who she is. I cannot believe how many ‘strangers’ out there in cyber space my blog has reached. But this new friend is expecting a HRHS baby! In the next week. She has followed my blog and read along, and finally we met up in person. She’s lovely, her son is lovely…and I absolutely can’t wait to meet her little one! It looks as though at this stage her bub will need surgery in the first weeks of life, so I’m praying for strength for the baby and all her family, and if you get a chance, send one up too! If this journey has taught me anything, it’s the power of prayer as Mike likes to remind, without it, I do not believe for one second that Chloe would be flourishing and meeting milestones like she is.
Chloe's story 