Choosing my mummy style

A lot of special needs mummy blogs reflect on how they are so upset that they didn’t get the chance to be the mother that they wanted to be. That the requirements of being the special needs parent changes you and robs you from the things that you really wanted to be.

Well I call foul. If you are a person who will schedule your child, or if you are a crafty person or if you are a person who sits on the couch and eats chips all day, then that is the parent you will be, special needs or not. I am learning this as Owen develops and I am reflecting on it now.

I look at Grace and she is the most scheduled child I have met. She has appointments before and after school. She has around an hour a day at home where she doesn’t have to be doing something. At first I thought that it was the crazy way that special needs kiddos had to be. But now I am seeing that is how I am.

With Grace so busy and me having this awesome opportunity to be a stay at home mum I am now starting to schedule Owen. It started slowly. Just an innocent swimming lesson, under the guise of daddy and son time. Now I have added time at a kids gym (like Gymberoo in Australia). Now I am looking at music classes and even potentially a language (Spanish would be very useful). Does he need all this scheduled time? Absolutely not. Do I need it? Absolutely. I am not a crafty person, I am not a teacher, I don’t know how to even begin to offer these opportunities at home. So I outsource ideas and pay others to assist in stimulating my child.

In the future I am going to have to appreciate that these are the decisions that I chose to make. No one will ever be 100% correct in their parenting choices, but you do have to appreciate that you do get to choose. No matter the neurological status of your child. For better or worse.

Running in Texas in June 

Or, Mission Impossible: Losing weight in Texas  (where bigger is better)

I put on a lot of weight while pregnant with Owen. I think the stress of coping with Grace, moving countries and giving birth in a foreign country got to me, well it increased my desire for comfort in food. It was indeed comforting and I really enjoyed guilt free chocolate. However now as I look in the mirror I see that my arms are huge, that things are just a tad too jiggley for my liking. I understand you put on weight while pregnant, but not on your arms. Perhaps I was too indulgent. 

Anyhoo. So now I am pushing myself to lose those extra kilos/pounds, with the goal of having no maternity clothing when we visit New York. In four weeks. And this is how I have come to running here in Texas. 

I am putting it out there that running here is marginally better than running in PNG. At least here there are trees and you can escape the sun. Running in PNG was hot under the sun but not too bad when overcast. 

Running here is much hotter than I imagined. 

Picture Melbourne in November, when it is still humid from Spring but already has the heat of summer behind it. Now turn up the temperature to a guaranteed 30degrees, add about 60% more humidity and you have a rough gauge. 

As you run along the wooded trail you think it would be good to get out of the sun and into the shade. But the problem is that it acts as a vacuum and all the air is sucked out and you are now running and you don’t know if you are covered in sweat or the air has left some residue on you. The lack of air I can only compare to the path that runs behind the sand dunes at the beach. The trees blocking the sea breeze and the sand dune reflecting the heat of the sand back at you. 

But it’s not all bad. Sometimes you can fit your run in before a tropical storm hits. Sometimes freaky type-A people with ironman competitor shirts run by and try and encourage you to run with them (haha! Literally had me rolling along and laughing when that happened). It is pretty here, it is tree lined and plenty of wild flowers are out. You dodge more squirrels and birds than you do people with roving dogs. 

And I appreciate the ability to have 30minutes on my own out of the house. 

 

A picture tells of a thousand hours

  

This picture is nothing special on first glance. But if you look carefully, it can tell you of all the hours Grace has worked, screamed, fussed, talked her way out of and sometimes cooperated. 

You also need to understand a little more about reflexes to appreciate this picture. See how Grace’s hands are either side of her shoulders, nice and even? Well that hasn’t come easy. Part of Grace’s CP is that she has an overly strong ATNR. The ATNR is one of those newborn reflects that integrates about 2-3 months into life. Once it’s gone you can do cool things like suck your thumb, clap your hands or even walk with your hands by your side. Most people aren’t aware of it (nor should they be unless they are a Physio or doctor type). What it forces on the child is that every time they put their head in one direction the hand they have turned to will shoot out. It looks like the child is taking an archery stance, and this reflex can be referred to as the archer or fencer. What all that means for Grace is that when she is on her tummy one arm will be straight, making it hard to army crawl or even bring her head up.  If she does get up on her hands the one straight arm will push her and she will topple over. Then when she creeps on her belly she goes round in circles as the dominant side keeps getting activated bSo to see her with two hands and arms in a lovely position like this is fan-freakin-tastic. 

You might note Grace’s cute little pixie hair cut. This is not a mother initiated style, it comes again from Grace and her reflexes. This is from the grasp reflex. You see it on babies as they cling to your finger or even some Facebook posts where they have a baby hanging from a washing line. That is how strong the grasp is. While Grace is on her back or even her tummy, she will try and move or feel around and she will invariably find her hair. She will clamp down on that tiny tuft of hair and then suddenly realize that it is attached to her own head. She will then pull will all of the muscles that she can and finally that tuft of hair will be free. Well, free of her head and a little bald spot will remain. As it is her hair takes forever to grow. I blame the medications she took for her seizures and now the diet that she is on. Neither are positive for hair growth. I can’t recall the last time she had a haircut – I think I tried to even out the nape and once I gave her a cut so bad she looked like a cancer survivor. 

The other thing is that Grace suffered reflux as a baby. Anyone who has been a parent to a child with reflux will understand this, these kids have no desire to be on their belly. It just increases their discomfort and pain. Grace has hated being on her tummy since before time. She hates the wedge that is meant to help take some of the strain away and build her arm strength. The only thing we could do to build back strength was rolling on an exercise ball. So she hasn’t built up her back as well as other kids. Which makes holding her head up like this in the picture a lot of hard work. 

I don’t know what is the exact reason that she has suddenly taken to enjoying tummy time or being as active as she is. But something is working at the moment. All I can hope for is that this little break through continues and lots of new skills keep on coming. 

Settling in

Well it has been some time since updating you all on what we are up to. It wasn’t an intentional lack of communication it has just taken us this long. Moving countries is hard enough, throw in having a baby and having one with special needs and things are going to take time. I am learning slowly to make my peace with that. 

So how are we doing? We have all our stuff  now, all four shipments! It doesn’t all fit into our new home, we are lacking in places to store all of it – amazing to think we have gone from a two bedroom apartment where everything fit to a five bedroom house that feels too small! A trip to ikea should solve our issue, but that too will have to be planned. 

Grace has now been registered to start school in the Fall (August). We still haven’t 100% decided on whether to go special needs or inclusion but we will before then. I hope. It has a life long impact for her so we are taking it very seriously. Grace has been working with a great speechie who really understands that Grace is quite bright. She had Grace tested to understand where her level of understanding actually is. It was quite remarkable Tobias what she did was present Grace with a flip chart that was landscape and about 1/3 of an a4 page. On each page was 4 pictures. The speechie would ask Grace to point to the dog or the circle or the place where you would sleep. And Grace would then move her arms to touch the answer. 

The remarkable thing about this was that she could see the images. It was lit up or in high contrast or anything special. It was just pictures on a page. She could differentiate between like objects, so the clock was next to a wheel but she knew which was the clock and she knew body parts when they were all the same skin tone colour and quite indistinguishable. This from someone classed as blind. Not only could she see the pictures but she moved her body with a purpose and selected an answer. Not only that, but she kept going for about 45 minutes. A three year old with that long an attention span? 

It took her 45 minutes before she got to a point where she had six wrong answers in a row. She only had two or so before that and they were quite tricky like, which picture is the kids playing baseball – bit of a cultural difference there. So we could rule out that she was guessing and we could rule out lucky as she would have answered around 30-40 questions. AMAZING. 

So our focus in speech has changed from eating to increasing her vocabulary and use of a speech device (set up like her book). She is already vocalizing more and she is also less frustrated as we have begun to talk to her less like a baby and more like the kiddo she is becoming. 

I have gone crazy now and attempting to teach her to read first words and sight words. Playing with the harder stuff she seems to enjoy, she is growing in confidence and desire. It’s a really great transition to watch. She is hungry for this knowledge and certainly proving she is capable!

Our boy Owen is busy being adorable and very sweet. He loves to have time by himself playing with the toys on the mat. He is cooing and smiling like a real chatterbox. He just had his 2 month vaccines and is passed out on my lap as I type this update. I think this weekend I will move him into his own room (the delay has been his room is upstairs and I don’t want to run up and down all night!). 

The storms I hear have made the news in Australia, as they should. It has been CRAZY here. Thunderstorms and lightning so much it shakes the house, rain so much that on the main freeway they had a mini tsunami that wiped out heaps of cars and pretty much no one could get to work. I marvel at the way kids sleep through the storms, you have to tiptoe past the bedroom but a thunderstorm is ok. Go figure. 

I will leave my griping about the American medical system to another day, I am frustrated to say the least it is a daily battle that you have to prove your childs needs. I thought it was going to be easier than this is the only thing I will say. 

Hope all is well wherever you are and don’t forget to stay in touch xx

Settling in

We have been here now for three weeks I think. It’s all running together a bit, and February is a short month (so it throws your perception of time right out the window!). What have we actually managed to achieve? Well…we got a place to live, put a couple of beds in it, stocked the fridge and cupboard, bought two new cars (which is taking some psychological adjustment on my part…never wanted to be a minivan driver!), hung a TV and connected it to all manner of trashy TV, bought a coffee machine…oh celebrated our 5 year wedding anniversary, Grace’s 3rd birthday. That’s enough in 3 weeks right?  Well then pepper all that with a dose of working out the American medical system, having multiple check ups with my OBGYN, Grace met her new neurological team, organised a pediatrician (everything has to come from a referral of your pediatrician over here, so no therapy until you have it written by them, even hippotherapy!) and we found a school for Grace come this August.

I am a bit excited/nervous/anxious/excited about school for Grace. It looks great, they do therapy and cognitive stuff there all at once. The grades are different, they take 0-4 year olds in one room, then 4-8 in another and 8-12 in another. There are a few different ‘streams’ within these groups too. So there are rooms for the more high functioning and rooms for those that need more behavioural assistance and so on. I am excited because I think the interaction will be fantastic for Grace, she loves being with other kids, even happy just to watch them run around and squeal, quite frankly, she loves people and it helps her to maintain head control and interest in activities.

I am nervous because I will be leaving her there. All the usual mummy leaving kids at daycare kind of emotions really, topped with a dose of ‘Will they be able to feed her?’ ‘Will she scream too much during therapy time to ruin it for the other kids?’ ‘Will they be able to use her communication book?’ ‘What will she learn?’ those kinds of things. I personally think she will love it. But I will wait and assess at the end of the term.

I am anxious because it is an hour drive from our house. If we get a bad day Grace can scream blue murder the whole way. It’s an hour on very busy freeways at 110km an hour, with on and off ramps every mile, people not using indicators and doing whatever they want, big F250s with a tray full of garbage that is spewing out debris onto the road that you get to dodge while it is raining. And Grace still screaming in the back over the top of the GPS commands so I miss the turn off, or get off to early or generally just get lost. I seemed to have narrowed down her frustration in the car to being either hungry, tired or both (hangry). Or if you drive too slow, or stop for more than 0.25 seconds. As long as these things don’t occur and I continue to sing nursery rhymes we should be fine! At the moment this will mean that I will be in the car for at least 4 hours a day, with a newborn, and Grace for 2 of those hours. We are looking into getting some assistance at home to help out with this so at least we can share the load, and also looking to utilise after-school care so Tom can do pick ups.

Excited because this is a great opportunity for her. I really look forward to seeing her develop cognitively. She has fantastic awareness and comprehension. She also has a fantastic vocabulary and a desire to use that vocabulary.

So we still have a lot to get done. We anticipate that our first shipment from Melbourne (which has all the newborn stuff in it) will arrive in 2 weeks, then we have visitors #1 coming a week after that (Alex/Granny), baby boy will arrive two weeks after that and then my mum/Oma will arrive for another 3 weeks. So a very busy next month! I think the shipment from PNG isn’t due until later in April? Very far off anyway.

Hope that all is well wherever you are, stay in touch and let us know what you are up to. We miss all of you!!

Location change

So we have now arrived in Houston. Tom did an amazing job, he pretty much carried his 30week pregnant wife and gastro sick 3 year old (along with 7 pieces of checked luggage, 3 pieces of large carry on) across the world, while being infected with man flu. It was amazing to watch!

Our flight turned into a disaster pretty much as soon as Grace started to eat. She threw up all over me and the floor. Thankfully I had put on those fantastic grey pjs and the Qantas guys were able to give me a new pair. But did I think that meant I shouldn’t feed grace? No, I tried again. Mostly because I was worried about her keystones. So we tried another meal…same result, new pjs were handed over again. I gave her some water and a cuddle…more vomit, new set of Pjs. Ok, three strikes, no more food for you girl!! So we focused on getting her to sleep, which is hard to do over those business class arm rests! Tom worked her for an hour and finally she got to sleep, poor little munchkin. She woke at breakfast, so it out her in a good time zone.

At LAX her keystones were high so we gave lemonade, as is protocol, nope, came straight out. Flight from LA to Houston she vomited again, so we knew we were in for an emergency visit. No fluids and no solids we were worried. I should mention though that as long as we weren’t trying to feed her or give her fluids she was fine. She slept, she cuddled and she was just Grace, it was kind of weird.
On landing in Houston we tried to check into a local emergency doctors but they sent us to the hospital for IV fluids…so we spent the next 3 hours in emergency with Grace as they tested her blood and administered IV fluids. We made it home and straight into bed. Other than the actual sickness of it all, it was a great way to reset our body clocks! It was very stressful and gross and sad though…

But now Grace is pretty much back to her usual self, still fighting to not eat, still smiling at silly songs and noises, still telling me to hurry up when I talk too much (with her vocalizing and her comms book).

We are moving into our new house tomorrow, I am sitting in the laundromat at the moment as we won’t have a washer or dryer until at least Friday…Tom along with our friend Matt went and picked up mattresses for us. Tomorrow I have to run around and get all the bits that go on a mattress to make it a bed, as well as maybe something to sit on…or something to eat off of!

It has been a very full on week. Tom informs me his new work site is fantastic and state of the art, his colleagues are very lovely and we have bumped into a few PNG people already (that was a bit sooner than we thought!), and we have caught up with old friends too.

Today I also checked out a potential school for Grace. It seemed pretty good, I liked that it was ‘all inclusive’. By that I mean you get your cognitive academic learning and you also get your OT, PT, and speech in the one place. I am only worried that it may not be cognitively challenging for Grace enough. This school was a specific special needs school, which comes with it’s pros, but also with it’s cons. I really want Grace to start something though as I feel she gets bored with the minimal stuff that I know how to do, and let’s face it, your mum can only be fun for some of the time 😉 Grace would greatly benefit from all the social interaction and the daily challenge of learning though, and that’s what excites me in getting her into school. Anyway, we still have some more investigation to do on where she would gain the best inputs. I still have to find all the extra things as well, horse riding, swimming, Feldenkrais, and any other activities that she would benefit from that assist her physically and she enjoys.

Let’s see, anything else I should update you guys on? Oh, the weather is amazing. First it was freezing, and now I am walking around in a T-shirt! We have had three very beautiful days, and I have been promised that in a month it will be like this more often than not.

The house we are moving into has a pool, two bedrooms downstairs and three upstairs – plenty of room for all those people who promised to visit! We are laughing that we are in such a big house and will probably only use it like a two bedroom apartment. We won’t have any of our stuff from Australia or PNG for at least a month, so we will have to learn to live in a Buddhist manner.

Other than all that busyness of moving country and resettling we are well and trying to eat well. Hope you all are too!!

Reflection

My intial joy of getting to through the birth certificate process I have found was a little premature. We returned for the pick up only to be asked a question (which was on the actual form) and then informed to come back next week.  Oh well, luckily our initial move date of the 15th fell through!
This week we hopefully have our own visa interview and preparation for departure.  We have had some fantastic support in getting some things set up in the states already. Doctors for me and Grace, school for Grace (so so so excited about that one, 1:1 student to teacher if required!). Will hopefully have someone to help with housing soon and then we are pretty set I feel.
But as I went for my mandatory 30min walk (to ensure low blood pressure, which I am checking daily this time) I couldn’t help but feel how much I am going to miss this place. I am not going to miss having to be a split family, or the poor support for Grace or being away from family and friends but I am going to miss how easy our expat life was here.
We have two ladies who come and clean, every day. They do everything every day. The stuff they sweep off of our floor daily is feral. How will I find the time to sweep every day let alone mop? We have a nanny for Grace which means when we are out being social I am able to sit and talk with the parents or even to interact with Grace on a fun level while she is ‘managed’. Or even able to take a photo of Grace – I seem to run out of hands and photos fall to the bottom of the list. It also means if i need time out from therapy or Grace it is easy. We have someone who drives us in a car we don’t have to maintain.  The weather generally means you can swim whenever you want (except for the last few weeks where we have finally had a wet season).
Above all, the lifestyle here is so easy. Everything is so casual, people are at home with the kids so we are all able to catch up whenever we get a bit bored. The community is pretty tight and friendly.
Grace has some lovely little friends here too. I ask her if she wants to go see one and she does her little excited dance, the one she normally saves for when we ask if she wants water or if she wants Lisa. It’s pretty darn cute.

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A little reading time

Everything else here is going well. The little inutero boy is growing and making me massive. I also believe he is aiming to be in a football based sport the way he has been kicking my internal organs. The pregnancy continues to give me strange dreams, much to our amusement.
Should have an update about the date of departure soon for you all, and then you can all get your visiting plans sorted too 😉

Steps to departure

We are in the preparation stage of moving from PNG to Houston Texas and one of my major projects is to make sure that Lisa is set up before we go. Lisa is Grace’s nanny while we are here and is absolutely vital to our sanity and for Grace’s enjoyment. She is a very mild mannered lady from a very remote village – I am learning just how remote at the moment! – she absolutely dotes on Grace and probably takes more pictures of her than me and her grandmother combined.

Step 1. Get Lisa a bank account.

We actually wanted to do this earlier, but she didn’t want one, so we left it. Then when I returned last from Melbourne she asked if I could help her get one. This is great, it’s great for her independence, great for her development, great for the safety of her money, great great great. I was so excited when she asked that I dropped everything to work out how to do it.

Step 1a. Birth certificate.

So Lisa had to check, but her mum had lost her certificate somewhere along the way, so we need a new one. Ok, online I go and see which government department we need to visit and so on. I found some documents online and an address. So while we were out I asked a driver if he could take us to that office. He informed us that that office no longer exists, but you can go to the Civil Registry office and do all that stuff. He showed us where it was. Unfortunately it was already 1030 so there was a long queue and it didn’t look like the best place to be hanging out. So we decided to try early in the morning the next day.

Next day, we arrive, no one around so we walked straight in. I peeked down a corridor and saw a man and went and asked him if he could help. He would have to be the first person in PNG that I have dealt with that has grey hair. Anyway, he rummaged through the papers on the desk and finally found a form for us. He then helped us to fill in the form – which was a wow moment as well. Lisa has no idea of her age or birthday. So we had two men trying to work backwards from the date of her children, to the location of her village to the date of her marriage. One of the men was asking her if when she was married did she have tight boobies or dropped ones. Can you imagine dictating your age by the date of that? Working off that detail the man said we will say she was born in 1982. We then gave her the birth date of Christmas Eve because Lisa likes Christmas.

It is so hard to determine all of the details of where and how one arrives in PNG. Hospital births are abnormal, home and rural village is very much the majority. But what that means is that the official status of your birth won’t be recorded until you try and claim your certificate.

We worked through the remainder of her details, and then we had to go an pay for the form to be given to us, so over to another building in another suburb we go. This visit is quick and we just hand over the credit card and get it all done. Then back to the original building to lodge the form to get Lisa’s certificate.

When we get there a man tells me that the building isn’t open yet. Shocked, I explain that we had already been inside earlier that morning and told him who we were dealing with. Then he, likewise shocked, explained that we were dealing with the boss! We find out that the office isn’t really up and running yet, that most people haven’t come back from Christmas leave and so on. So the only guy to deal with is the governor of the department! We left feeling very important and happy to have been able to get all of those details done. I am still a bit shocked that we were able to get so much assistance from such a senior person. It was a great experience.

Step 1b. Employment identification

This one seems the hardest. To work with us in the compound we are in Lisa was required to complete a few tasks. She had to get a bill of health – no TB, and she had to have police clearance. Then she was required to hand all that to the compound management and she is meant to wear identification while on the grounds. We had the photo done some time ago, but the ID seems to be under some sort of delay. I chased it  up and it was due to everyone being away for Christmas. So we are still waiting on step 1b to be completed.

Step 1c. Bank Account

I imagine this is going to be one of those slow things as well. Lisa has requested her account be in BSP as that is the local bank and probably has the most amount of ATMs outside of POM. There are accounts available where you don’t need an address and there are no bank fees and so on, but we will need to make sure of all those details when we set it up.

Step 2. Make sure her kids have what they need for school

So this is something else that we really wanted to help out with for the kids. Lisa has two girls, 11 and 7 and she looks after her big sisters son as well, he is 16. He is starting year 11 this year. He needs a uniform, school supplies and a supplemental cost amount to be enrolled. School fees here are free to attend, however there is also the sport uniform, school magazine and school project they need to contribute to. Lisa earns 200 kina a week, from this she has to pay for all three to eat and looked after. These additional fees are 300 kina and the uniform was 250 kina. School supplies are roughly the same price as at home, some are a bit cheaper here, but I don’t think you buy textbooks or anything like that. Either way, we covered the uniform cost and will be bringing some supplies up from Melbourne. The uniform was a horrid polyester, I think if he gets too close to a naked flame or even moves too quickly he will catch on fire. The shoes here are way too small, being brought in from Asia, and they are plastic. The smell made me gag as we were trying on shoes.

Step 3. Make home life as easy as possible

I don’t know enough about the conditions of how Lisa and family live. I know that she was kicked out by her husband and that her cousin uncle brother or something beat up her girls, so they all moved out. I feel they live in some kind of open space with minimal coverage. We have given her what we thought may be useful like tarps and so on. But the thing that made them happy was some solar lights that Tom had won in trivia. So we gave her our set and another friend gave her set. They were all so excited, they had lights and they also had a way to charge their mobiles (there was a power point on it as well) and the kids could now read at night. These lights aren’t anything much, and if she could have told us what she wanted we would have bought them for her. Now I am asking her if she needs anything else like that, maybe a water filter or anything like that. I feel she is too shy to ask, and also she is unaware of products that could help make her home life easier.

Step 4. Get our stuff ready!

New year!

New Year has arrived and resolutions have been thought of, not really set, but in the process of refinement.
My first thought was to make sure people are kept up to date a bit more and get some thoughts out of my head more often…which mostly revolves around this blog and some personal writing.

We had a great Christmas, presents that were able to follow us up from Melbourne and even a couple I was able to source here in PNG from some leaving families. We had a tree from a neighbor who ahd gone home for Christmas and a variety of decorations and music (Grace loves the Christmas music!) had breakfast at a neighbors house with all of those that were around in POM still. We then returned to our house to then prepare gourmet lunch. Instead of turkey it was lobster sized prawns, oysters, duck and ham follwed by cherry ripe souffle and ice cream plum pudding.

Post Christmas I traveled to Brisbane for a routine (for me) check up, got to hang out with a friend, fresh coffee and see our baby growing healthy and well, what else do you need?

New Year was another party at our neighbors house…which I actually made to not just midnight but at least 30min after (a shock mostly to myself!). However today I feel more hungover than I would have even if I had been drinking! We relaxed by the pool and had an afternoon family nap…quite the ragging party!

And so you are now up to date. Photos will come, they are on a variety of cameras and devices spread across POM, but here are a couple.

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Checking in

Well it has been quite some time since I have posted and I apologise! I think I am apologising to myself when I say that, as I was kind of hoping that this blog would be a bit of a diary of what is going on or what has passed. I believe there may be many a gap.

Well where are we now? So Grace had her EEG, and the initial review left me flat and eating my emotions. Then a week later we had another review (so the doctors actually had time to read the EEG) and I came out elated. The EEG now shows no signs of subclinical seizures. This means that not only are we not seeing any visible signs of seizure activity, but even the yuk ones that only medical equipment can find are no longer there. There are still some crazy brain wave activity, but not seizure activity. FAN-FREAKIN-TASTIC!

So we began the wean of one of her meds – Frisium, a derivative of valium. We went on a pretty quick wean of this, believing that it hadn’t actually done all that much for her seizures anyway. Wow, if you have even seen an addict wean of their drug of choice then you can kind of guess what it is like to wean a child off a drug. The squealing was brain shattering for all involved (especially in an enclosed space like a car or cafe), her sleep has gone from constant to unable to sleep the night and no longer needing day sleeps. She has become needy and requires constant attention and interaction. A quick word with the doctors and we have resolved to continue the wean, but slower. Hopefully that will help her build up more delicately.

We continue with the diet – which, I love. The food and the preparation that goes into getting the food ready and the stress of having to get every morsel in is totally worth it. The actual fear I have is that it makes it so darn obvious how much you are what you eat. And yet I still reach for junk food or sugary snacks, hopefully Grace will have a better handle on this than her mother!

While we have been weaning I have been a bit lax in Grace’s therapy. It is very hard to force her to do anything at the best of times let alone while she is feeling so confused. It has enabled us to be a bit more social though, which is great. Grace loves the sound of children and to be around them really makes her happy so I have been taking her to a few things that we may have missed. An example is a friends birthday, where she tried out a jumping castle – loved it. We went to the pool but instead of hydro we played in the kids area which has a pirate theme with waterslides, sprinklers, bubbles, kids screaming etc – loved it. More walks to the park – loved it. Riding a rocking horse – loved it. 

I do have one gripe – I currently am hating on Yooralla. We applied in November for AFO’s, a second skin suit and a standing frame. All of which would total a sum of money of $9k. All have been explained to me as important and dire if we do not have and do not use. Her hips won’t grow, she will be at threat of low bone density, her spine will become crooked, her feet will be twisted, she will never walk, she will not gain muscle, she won’t be able to interact in the world, etc etc. So we applied for the government to help out with the cost. We got letters to say we missed the December review so we would be reviewed later. We got letters to say we have been reviewed and we got letters to say we are on the wait list. Then we got letters to say that we could have the money, but not yet. Then therapists have been on the phone to find out what is going on and we are still waiting. So this is how the system works. Apparently the NDIS is going to help with this. Apparently. 

In the mean time we are using equipment that isn’t 100% right for Grace, if I had of known that this would be the pain of doing it this way I would have just bought the equipment and be done with it. The hard thing is, if the turnaround on these matters is a year, what do we need in a years time? How big will she be? What will she be doing? Where will we be living? Who will need to help her with the equipment? So many balls that are flying around that I am confused, frustrated and incredibly lost.

With this much going on I find it very hard to focus and work out any level of routine, its all day to day. I guess that is any parent though!