Making goals

This week I went to an IFSP!!! What is that you ask? It’s an Individual Family Support Plan… pretty much an IEP (for those teachers out there) for a kiddie who isn’t in school yet. What a change in events in my life. I used to go to IEP meetings, as a teacher, not a parent.

It was very interesting to be on the ‘other side’ and be involved in planning the goals for Chloe as a parent. But I’m so blessed, so lucky to be part of what we get at Disabilities QLD. Truly the early intervention has been key to Chloe’s progress. I’m a bit worried about what will happen when the National Disability Scheme is rolled out here in QLD, but that’s a political debate I won’t get into.

Chloe is still yet to reach a few milestones due to some low muscle tone, either caused by SLOS or by all the medical intervention. Part of her problem is her core strength, because although she feels strong and is able to push off and roll and kick, she’s yet to weight bear on her legs or crawl. Though her little partial commando crawl is quite funny to watch. She reaches out with her right arm, pushes her bottom in the air and sort of slides with her face planted on the ground! So one of her goals in six months is to be crawling on her hands and knees, weigh bear and hopefully start pushing herself and cruising around holding onto furniture.

She sits up pretty well now, has good balance and can reach for things without falling over, so that’s a good sign her core strength is developing. It’s almost like she is on the cusp on crawling but just doesn’t. Maybe she’s a bit like me and knows someone will just get what she wants so she doesn’t need to try hard! Though put her dummy her out of her reach and she will move heaven and earth to get it!

Another goal is to work on communication. Both Mike and I sign to Chloe for particular things. So far we sign the symbol for food, bath, more and done. Chloe thinks the sign for food (fingers touching your chin) is hilarious, as is the sign for more (Palm facing inwards and tap towards your chest). When she sees the sign for food, she smiles and giggles. The speech therapist believes that Chloe is learning that it means something and we are hopeful she will pick these signs up.

This doesn’t mean we don’t think she will be verbal. Quite the opposite, Chloe is an expert babbler and very very loud! But research has shown that children often pick up sign language symbols and can communicate using these much faster before they learn actual words.

Her final goal is feeding! What a surprise! Chloe has come along in leaps and bounds with feeding. Truly a miracle! An answer to prayer…though I do always have in the back of my mind that she won’t eat enough for nutrition and growth. But we’ve come this far! The feeding therapy has become somewhat of a little interest to me, and I would love to learn more about it and get involved in helping people and sharing what I’ve learnt. Did you know that feeding, as in biting, chewing and swallowing are all behaviours that a baby needs to learn? Some take longer than others. Chloe still enjoys purees, and prefers savoury over sweet. She loves sucking on pieces of fruit but isn’t great at chewing. We offer her ‘meltables’, these are foods that almost dissolve on your tongue when eating them. These like cruskits, potato stix, milk arrowroot biscuits… rice crackers. I often spread them with different types of dips and purees for her to try. We are hoping that we can slowly progress to more ‘finger foods’, like steamed veggies and so forth. But slow and steady wins the race!

A recent favourite of Chloe’s is frozen fruit smoothies in a fresh food feeder. She loves to suck on these! I make up a big smoothie, freeze it into little ice cube trays and them she sucks on them like ice creams.

So even though she has diagnosed Cows Milk Protein Intolerance, I’m starting to introduce a little dairy, like yogurt and cheese. She seems to like them with no big problems so we just go for it!

Chloe is slowly approaching 8kgs! At last weigh in she was 7.2kgs…. and I can already feel that she is getting heavier to carry around! She loves tummy time, and rolling around playing with toys and can often be found facing the wrong direction in her cot!

Gosh she’s amazing! I am often completely overwhelmed by how far she’s come, and how far we’ve come as a family. It was only this time last year we were booking private ultrasounds in the hopes of catching a glimpse and a picture of Chloe’s little face. She would’ve been around 28 weeks…and we were very worried we would never get to meet her face to face, to hold her and hear her giggle. It was this time last year that we booked the scan because we thought it might be one of the last pictures we would get. Funnily enough, little miss stubborn refused to let us get a picture and all we got was arms and legs because she was camera shy (oh how she loves the camera now!)

This time last year the future was so uncertain and Mike and I were losing hope… but we set up her room (the ark) and held on to the little hope we had. And now… now we are planning for her first birthday and looking forward to most things parents look forward to! Which is very exciting. But it’s also a testimony to God’s faithfulness to us, and that miracles do happen in our world today. I hear about them in my online support groups from other parents who walk this difficult journey with their kids. If the strength and resilience and the telling signs of  these little miracles doesn’t bring you to some belief in God, what can? Truly, Chloe is another sign that God is out there, and he cares. I mean look at this face….. touched by God’s hands… the miracles of children!

ps… still no teeth yet…. where are they?

Sometimes…

Sometimes a blog is about Chloe, sometimes it’s about me…sometimes it’s about our little family!

It’s been almost a month since I wrote for the blog. It never seems like that long to me! The last time I wrote I was talking about Chloe going from strength to strength… I was returning to work…

The last time I wrote I said I was returning to work part time. So much has changed. What can I say and still leave with integrity and my head held high? I was, and still am extremely excited about returning to the classroom. I love my job. I love that I get to be a part of so many kids lives. Maybe, just maybe I have changed some of them forever! It was after all, my year five teacher who inspired me to become a teacher!

I recently found out that my return to work was not as welcoming as I thought. I don’t really know why, or who felt that way, but at the end of the day that’s not really the point. They were not as excited as I was about returning. But perhaps it was just God’s way of saying it’s time to move on. So, after much deliberating, Mike and I decided to take a huge risk, and I resigned.

When I say huge risk, it really is. It’s a massive step of faith. It’s like jumping out of the boat and hoping you can walk on water! We simply cannot afford for me to not to work. If it wasn’t for the recent fundraising effort, we probably wouldn’t be able to do it. We are living life on the edge! We are praying that a new opportunity comes my way, and I’m hopeful. I’m actually really excited about starting something new. A fresh start.

In the coming weeks, our in home carer will start, and hopefully this will allow me some time to complete applications and attend some interviews. In the coming final term of the school year, I’m hoping I will get some relief teaching. During this time we will get 100% child care paid for (for a limited time) while I look for another opportunity.

I am feeling confident that Chloe is really stable and, as I said in my last blog, going from strength to strength. Chloe is really doing amazing after her Glenn surgery, I cannot believe how much it has changed her energy and growth, it’s remarkable.  I think this is why partly I’m excited about something new. When I start at a new school, no one will know about the journey we’ve been on and how far we’ve come. And although I love to share the miracle that Chloe is, I also like to feel ‘normal’ sometimes. Like a ‘normal’ mum would feel as her daughter grows up. Battling the same old sleep problems, teething problems… all the usual stuff.

I recently took Chloe for her 4 month immunisations…she’s 9 months old! She does not handle vaccinations well, but I believe they very very important. Last time we ended up in hospital, and were undecided if the needles were the cause. This time I’m fairly certain that the needles are the cause. She’s had a low grade temperature, very unsettled and very poor feeding (yes, her feeding can get worse than her ‘normal’ feeding). But thankfully our wonderful paediatrician steps in again, checks her over and says to ‘ride it out’. He didn’t feel anything really bad was going on. Besides, in between the grumpiness she does laugh and giggle.

She’s also starting to eat a bit more solids, proving the doctors wrong even more! She’s not crawling yet, but I keep pushing her! She does do reverse though! She thinks Mini (our dog) is the funniest thing in the world and nothing makes her giggle more than the anticipation of something funny.

We are also trying to teach her some sign language. It is believed that children learn the signs much faster than verbal language. She will hopefully learn ‘food’, ‘more’, ‘finished’, ‘bottle’ and ‘bath’. The carer will continue to do this work with her.

It’s exciting. I love seeing her grow and develop. I’m constantly in awe of our little girl, as I am sure most parents are of their little ones. But Chloe, who lives with ‘half a heart’, to me, she is just amazing. She reminds me on a daily basis that although there are obstacles and battles to overcome, you should smile and be positive through it all. I mean minutes after having her needles she was talking happily and giggling (I probably would still have been miserable)!

She gives new meaning to the saying ‘don’t sweat the small stuff’.

Celebrating Father’s Day!

Bit of a sad sack after needle day.