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