Jacks speech is just coming on in total leaps and bounds! There was a point where I honestly hand on heart, didnt think he would ever learn to talk. He just wouldnt even attempt it.
Its still small baby steps and lots of it is more a sound than a word but the sound is right :) He repeats the whole alphabet after you now and will pretty much attempt anything that you ask him to say.
We saw his speech therapist who was really impressed with how far he has come since she saw him last time and is going to back off him a little whilst he goes through this spell as we dont want to push him too hard and have him take a step backwards.
At the moment the main thing I have found I have needed whilst raising Jack is PATIENCE. I dont mean this is a sense that I could lose my temper with him or anything but more in a sense that everything that he has learnt so far and will learn in the future takes time. Every baby step that he takes in everything he does is a little miracle really because there is no documentation on this condition, so nobody really knows what to expect in the future.
My favourite thing he has said so far today is 'Hi Baboo' That one never ever gets old :)
Thursday 16 February 2012
Wednesday 15 February 2012
Finally in the new house!
Hello all,
Sorry its been so long again since I last updated but we have had no internet. Its been a nightmare. Funny how quickly you come to rely on the net once you have it.
Since I last wrote I have had a letter to say that they 'think' that Jack has type 2b Von Willebrands. Still waiting on another appointment to go and see haematology. Speaking to another one of the monosomy mums and she is going through the same thing with her little man. I'm hoping that we can get these genetics and haematology departments to speak as I think it will make it much easier on everyone.
We had our appointment to have his legs looked at and we haven't been very satisfied with how it went. He had a feel of his knees and said they felt OK other than a bit of hyper mobility. He watched him walk and said he flicks one of his legs out to the side but that could just be his gait! They x ray ed his hips . Not too sure why when they didn't do his legs. When we go and see our genetics guy we are going to ask him to refer us to the hospital he works from for a second opinion. Ive had enough children to know that the amount of times Jack falls and the pain he gets from time to time ISN'T normal.
We are finally in the new house and its just perfect for us all. The first time we took Jack out into the garden he screamed. He was so excited. Cant wait to see him playing out there when the weather warms up a little. Its a stunning garden and has plenty of flat ground for him but also plenty of little steps and things for him to build his muscles up a bit.
Sorry its been so long again since I last updated but we have had no internet. Its been a nightmare. Funny how quickly you come to rely on the net once you have it.
Since I last wrote I have had a letter to say that they 'think' that Jack has type 2b Von Willebrands. Still waiting on another appointment to go and see haematology. Speaking to another one of the monosomy mums and she is going through the same thing with her little man. I'm hoping that we can get these genetics and haematology departments to speak as I think it will make it much easier on everyone.
We had our appointment to have his legs looked at and we haven't been very satisfied with how it went. He had a feel of his knees and said they felt OK other than a bit of hyper mobility. He watched him walk and said he flicks one of his legs out to the side but that could just be his gait! They x ray ed his hips . Not too sure why when they didn't do his legs. When we go and see our genetics guy we are going to ask him to refer us to the hospital he works from for a second opinion. Ive had enough children to know that the amount of times Jack falls and the pain he gets from time to time ISN'T normal.
We are finally in the new house and its just perfect for us all. The first time we took Jack out into the garden he screamed. He was so excited. Cant wait to see him playing out there when the weather warms up a little. Its a stunning garden and has plenty of flat ground for him but also plenty of little steps and things for him to build his muscles up a bit.
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