Sorry I haven't got round to writing to you all for a while. Its been hectic with Christmas and then getting the kids back at school. Just to keep ourselves busy we are moving house as well. Well we don't like to keep things stale!
Alot has been happening with my boy since we last 'spoke'. We have had his test results back now and he has finally had the Von Willebrands disease confirmed. He has type 1. They have also said that his platelet count is very low as well which is not symptomatic of type 1 so yet more testing coming up for him :o(
Since the last time I updated Ive had a very lovely lady contact me and put me in touch with some other lovely people who's children have the Mosaic Monosomy 21 as well! It feels great to be able to discuss little things that we have found with Jack and find what their special people do as well. They definitely are a very special bunch of children. It can occasionally be quite scary as well though as there are things you find that haven't been discussed with you that have been discussed with others etc. Have called our genetics team and we are waiting on an appointment to go and chat about these other families and their children.
Jack also seems to be having more and more trouble with his legs. His falling has got quite bad again and he awoke twice in the night crying, rolling round and holding his knees. We have an appointment to see someone about his legs on the 8th of Feb so I will update you all then as to what they say.
He has taken SOOOO much to his little sister now and calls her Baboo which is just one of the cutest little things. His speech is still taking baby steps forward which is wonderful to see and he seems so proud when he says something that people can understand. The frustration that he must feel sometimes when he is trying to tell you something and you don't know what he means. Though bless him he never ever lets it get to him. We have to feel proud for that as we are obviously doing something right with him.
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