My dad

It's good to have this blog to get things off my chest. I have a bit of venting to do about my Dad. Don't get me wrong, I totally love my Dad. But sometimes he is not open to other viewpoints. He just gets in his head that his opinion about a certain topic is the only correct one, and then he can't see that somebody else's opinion can also have merits. I have been having a bit of trouble with his response to all the stuff with Xavier's development. It is making me feel like crap to be honest. Basically he can't accept that Xavier is behind the other kids of his age group and that he might need extra help. In his eyes Xavier is perfect and can do no wrong and he doesn't need help with anything. He gets very defensive and angry when you even suggest anything of the sort. Don't get me wrong, I think Xavier is perfect too, but I also think I need to be realistic about what sort of level he is on. Dad acts like I am seeking help for him because I want him to be some sort of super kid or something. It's not about that - it's about him being able to function when he is older. I am trying to get him the help he needs now so that later down the track, he will be better equipped for his life. If I ignore his need for help now then later on he may really struggle. Every time I bring up any of Xavier's therapy appointments, Dad gets mad and goes into a rant about how I should leave the poor kid alone and let him do things at his own pace. As if I am trying to push him like a stage mother or something. I say to him "listen dad, the paediatrician has said Xavier needs to go to speech therapy (or whatever therapy we are talking about at the time) so I am taking him." and then he will go on about how the paediatrician is probably getting a commission and it's all a big set up etc. It is just exhausting! It makes me panic too because I wonder if down the road Xavier is actually diagnosed with a disability or condition that is causing all of this, how will my dad react? My mum has been great with it all. She actually works as a disability support worker so she understands that sometimes obviously people need help. The other day Mum asked me about our latest paed appt and she asked the question of whether or not the paed thought Xavier would be able to go to a regular school or would he need a special school. I said to her that I had asked the same question and the paed said we wouldn't know until he was a little older and we did some assessments in regards to his readiness for school. But I mentioned to her that I had done some research and found there is a really nice Special Development School right near us and that I would put that in the back of my mind and if it turned out later that he did need to go there I would look into it further. My dad overheard all this and really got annoyed with me "my grandson doesn't need a special school...etc etc" all that sort of stuff. Grrr what is his problem!!???

A big Xavier story

Over the Christmas/New Year period I went AWOL a bit from blogging just because life got a bit hectic. During that time we had some new developments on Xavier's situation and because I wasn't regularly blogging each little update as it happened, it has become a big update. I keep thinking "I must update everyone" but of course it takes a while to sit down and do a big post so I haven't as yet got there. So today here we go. Xavier's having a nap, Joel's at the gym, chores are done, house is quiet. Time for the update:


You might remember that Xavier saw a paediatrician a few times last year. His name was Dr C. He was a nice doctor, but to be honest he didn't have a lot to say. He suggested a few things but it was all more along the lines of "don't worry, he'll catch up" kind of talk. Not that I wanted him to say something was wrong, I just hoped he would have more solutions or shed more light on the subject. I must say, without disrespect to him, that the last 2 times we went I paid the money at the end and wondered what exactly I was paying it for, so in the end I didn't make another appointment. As time went by a little I started to feel funny about Xavier's development. Of course we have known for awhile that he is behind the other kids. He improves all the time, but then so do the other kids, and he always seems to be that little bit behind the 8 ball. We were always of the impression that it was his eye sight that was causing the problems. Then we saw an ENT as he was found to have fluid in the ears and needed grommets, so that was another reason for him being slower. But then it got to a point where both the eye and ear specialists were saying their work was done and the problems were resolved and yet he still wasn't catching up. I found that worrying so I decided it was time for a new paed.


Xavier has been seeing a physio since Aug last year because of his motor skills. She has done wonders with him and knows her stuff. I asked her if she could reccommend a paed and she said she could highly reccommend one. So I made an appointment quite a while ago and his wait list was so long that we couldn't get in for a first appointment till this Jan just gone. So we waited it out and went to see the new paediatrician Dr B on Jan 6.


It was a very confronting appointment. I really liked the doctor alot, but he was a straight talker and did not sugar coat anything. I think I have been used to things being sugar coated and being told "don't worry it's just his eye problems..etc...he will catch up" so I wasn't expecting someone so forthright. He didn't say anything meanly or unkindly, he just didn't hold back. He saw Xavier for about half an hour with us in the room. He did quite a few different tests and activities with him, and then sat down and spoke to us. He said that Xavier has what is called "global developmental delay" which means that he has delays in two or more areas - his are speech and motor skills. He explained that GDD is not a diagnosis, it is more of a symptom and now we have to see if we can find a cause. For example, someone with a chromosomal abnormality like Downs Syndrome might have GDD. Their condition is not GDD, it's Downs Syndrome. The GDD is a result of that.


Dr B said that up until now we have understandably been thinking that the delays are caused by eye and ear probs, but that while that was still a possibility, it was starting to get to the point where we should look and see if we can find any other cause. He ordered a lot of tests - blood tests, urine tests etc to check for chromosomal abnormalities, metabolic disorders and things like that. He also put us on the list for Xavier to have an MRI at the children's hospital in June. Xavier has balance issues and issues with using his hands for fine motor skills. Again, we have always thought this was sight related. Dr B. wants to do the MRI to rule out any brain issues that might be the real culprit. He said he doesn't think we will find anything, but says it would be silly not to check. At the moment we are paying for all Xavier's therapy with the physio and a speech therapist out of our own pocket, which can get very costly. Dr B has put us on the wait list for a government service where he can get those services at a discounted cost. He has also helped us apply for a Carers benefit through the government which can help to fund his medical costs.


Today we went back to Dr B to get all the test results and touch base again. All his blood and urine tests came back normal so that is great news. Now we just have to wait for the MRI in June. I asked him what would happen if that came back fine too. He said it is common for GDD to be found to have no obvious cause. Sometimes kids that have GDD just catch up along their life. But he said that I have to be realistic and he is not a genie that knows the future. Some children don't catch up. Sometimes they need to go to a special school, sometimes they can go to regular school but they need assistance while they are there. He said we won't know what his capabilities are until we wait for him to grow up and show us. We just have to give him all the help we can while he is growing.


So that is where we are at so far. Sorry this story has been a bit delayed in me telling it, but as you can see, so much has happened. It has all been a little scary but I am trying not to get too far ahead into the future. As Dr B said, we can't see into the future. He may completely catch up by the time he's older, and if not he may need more help than other kids. There are then so many more scenarios in between, so we just have to wait and see what happens, give him all the help that we can, and trust God.


Thanks everyone for making it to the end of this long post, and thanks for the nice responses to my last post about my due date. I am feeling a lot better about it all, and your kind thoughts helped. xoxo

I forgot my due date

I am ashamed to say it. As you all know, in June 2009 we undertook an FET. We achieved a pregnancy but were told it would be shortlived judging from my HCG numbers. This proved to be correct and I had an early miscarriage. I have since heard doctors describe my experience as a chemical pregnancy - a term I hate because I think it's as good as saying "not a real pregnancy". Had the pregnancy progressed my due date would have been March 6 2010. Last year on March 6 I was pretty upset. I think about it and I still feel such sadness. There is not a day that goes by when I don't think of my baby at least once, and when I don't ask myself questions that start with the word "what" . What would it be like to have 2 children under 3 in my house? What gender would the baby have been? What would Xavier be like as a big brother? etc etc. Mainly these sorts of questions hit me late at night when I am lying in bed going off to sleep.

I felt terrible when I saw the date on the calendar the other day, and I saw that March 6 had past me by this year and I hadn't realised it. I don't know what this is supposed to mean but for some reason I feel really guilty about it.

The perfect housewife

That's what I feel like today! I spent my afternoon doing housework and stewing plums lol. Very 1950's! You might have seen on the news that we have had one crazy summer here in Australia. We have had so much rain and therefore we have had flooding in both Queensland and also here in Victoria. The floods in VIC, which is the state where I live, were like nothing I have ever seen before. It was my Dad's 60th bday on Feb 5, and the night before was when it started pouring with rain. I was just driving out of work when it hit, and man was it scary driving in that kind of a downpour! The next day I tried to get to Mum and Dad's house for Dad's party, and what is normally a 10min trip took almost two hours due to roads being flooded and closed. I tried so many different routes and everytime I would almost get to their house, the road would be closed and I would have to turn back. Finally, I got there. Most party guests were able to make it although a handful couldn't due to their streets being flooded, or because their houses had been damaged in the storm the night before.

Why am I telling you all this? Because it explains the stewed plums! These floods have severely affected our fruit crops here in AUS. My little boy is a banana addict and not really keen on many other types of fruit. He is fantastic with veggies but as far as fruit goes, bananas are the only thing he is interested in. Any other fruit is met with a scrunched up nose and a "yuck!". As a result we usually have bananas in our house by the truckload, but now because the banana crops have been so affected they have skyrocketed in price. Instead of being the normal $2.99 a kilogram they are around $8.00 and our normal supply of bananas that I would regularly buy in our shopping trip costs over $20. This inspired me to experiment with different ways to try to get some other type of fruit into my son. It turns out he will eat any sort of fruit if it is stewed, especially if it has a dollop of yoghurt on the top. So my dear mum has taught me how to stew fruit and today I decided to try plums out. I will let you all know the verdict :)