Thanks to all those who have put their spare change into the MegAid tins, we still have a few coming in. A fantastic $285.75 from the Bright Chinese Restaurant & Harrietville store tins & $50 from the Bright Newsagency. Thanks to the stores who have allowed us to put tins on their counter. Also a big thanks to Bill & Ya at Sugunnya's Thai restaurant in Bright who donated $100 from my birthday dinner held there a couple of weeks ago!
To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846
Thursday, May 27, 2010
Wednesday, May 26, 2010
News
Hi all - sorry I have not been updating the blog much lately. With our weekly trips to Melbourne for therapy at CPEC www.cpec.com.au , we are away 3 days a week and with the traveling and Meg's care - I just don't get time to get online.
We are having a rare treat of a week off CPEC and no trip to Melbourne this week so I have promised myself that I would write an update on Meg and her progress.
Firstly my last post talked about how I was looking forward to getting comments from Meg's therapists about any of the changes we have seen in her so far. Unfortunately Meg has been an absolute terror at CPEC since our return, her behaviour has made it hard to do anything with her. So, so far no comments.
We have started to use some techniques to get Meg to calm down during therapy which are beginning to work, I am not sure why she has such an aversion to therapy, I guess it is hard work for her and as much as we try to make it fun it is still hard and frustrating for her. She does most of the movements at home with no problem so we do believe it is just a behavioral problem and we will continue to work at it.
Anyway even though she is screaming blue murder during our therapy sessions, she continues to improve! There was a lull in her progress of any changes we were seeing and we thought oh well maybe that's all the changes we are going to see from the stem cell therapy, but in the last week or 2 Meg seems to have made another leap forward, her movements are more co-ordinated and she is doing more herself. I had my car keys in my mouth the other day rushing to head out the door and Meg was on my hip, she started to grab at them, (I say - just like a real baby) and what I mean is as you would expect a baby to do, Meg has never done this before, it ment she supported herself with one hand on my shoulder while independantly using her other hand to grab at the keys ( this is pretty big for Meg).
We are finding that the movements we ask her to make on a regular basis, arms up to get the tray on her feeding chair, or bum up to change her nappy etc, we don't even have to say the words any more - she just does them automatically. This is a big step forward to think that she couldn't even make these movements herself 6 months ago. So she can be taught to move her body which is a huge relief to me as her mother and carer as her quality of life will be so much better if she can learn to do things for herself, and my quality of life will also be much better also.
Meg has entered the terrible twos with a vengeance, she has a severe case of Mummyitis and I can not leave the room without a tantrum being thrown, it makes hard work for Joan Meg's carer or Grandma who is left with a screaming child but I take consolation in the fact that this is pretty normal behaviour for a 2 year old and am happy to see that she is acting like a normal 2 year old.
So all good news really, some therapists that haven't seen Meg in a while saw her in the last week or so and were amazed at how well she looked health wise, how her head control had improved, how chubby in the cheeks she is now she eats and how alert and interested in everything she is including her communication book.
Again I guess the medical profession would say these are all airy fairy improvements in Meg's condition and may have happened anyway without stem cell therapy, but to us as the people who will have to care for her for the rest of her life - we don't care, we have seen the reduction in spasticity in her hands and arms, Meg spends most of her time now with her hands open (only fisted when she is distressed) she is getting hold of her feeding spoon and getting it up to her mouth (not quite in her mouth yet but close) and this reduction in spasticity has resulted I believe in her increased abilities. I have also noticed that her leg length discrepancy (her left hip tilts due to tightness in her abductor muscles) which causes her left leg to appear shorter, has decreased. Meg also receives weekly Bowen therapy from our local wonder, healing woman Paula Hall which we hope may also help with this.
On the feeding front Meg continues to thrive, eating loads of food and we have finally reduced the night time fluids over the last 6 weeks since our return from Europe to nothing. We are now on the first week of one month with no using the PEG at all and then OUT IT COMES! - This will be a big day for Meg and the whole family.
Thanks again to everyone for all the support encoragement and love you have show our family over the last year
Kate, Meg, Jason & Tom
To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846
We are having a rare treat of a week off CPEC and no trip to Melbourne this week so I have promised myself that I would write an update on Meg and her progress.
Firstly my last post talked about how I was looking forward to getting comments from Meg's therapists about any of the changes we have seen in her so far. Unfortunately Meg has been an absolute terror at CPEC since our return, her behaviour has made it hard to do anything with her. So, so far no comments.
We have started to use some techniques to get Meg to calm down during therapy which are beginning to work, I am not sure why she has such an aversion to therapy, I guess it is hard work for her and as much as we try to make it fun it is still hard and frustrating for her. She does most of the movements at home with no problem so we do believe it is just a behavioral problem and we will continue to work at it.
Anyway even though she is screaming blue murder during our therapy sessions, she continues to improve! There was a lull in her progress of any changes we were seeing and we thought oh well maybe that's all the changes we are going to see from the stem cell therapy, but in the last week or 2 Meg seems to have made another leap forward, her movements are more co-ordinated and she is doing more herself. I had my car keys in my mouth the other day rushing to head out the door and Meg was on my hip, she started to grab at them, (I say - just like a real baby) and what I mean is as you would expect a baby to do, Meg has never done this before, it ment she supported herself with one hand on my shoulder while independantly using her other hand to grab at the keys ( this is pretty big for Meg).
We are finding that the movements we ask her to make on a regular basis, arms up to get the tray on her feeding chair, or bum up to change her nappy etc, we don't even have to say the words any more - she just does them automatically. This is a big step forward to think that she couldn't even make these movements herself 6 months ago. So she can be taught to move her body which is a huge relief to me as her mother and carer as her quality of life will be so much better if she can learn to do things for herself, and my quality of life will also be much better also.
Meg has entered the terrible twos with a vengeance, she has a severe case of Mummyitis and I can not leave the room without a tantrum being thrown, it makes hard work for Joan Meg's carer or Grandma who is left with a screaming child but I take consolation in the fact that this is pretty normal behaviour for a 2 year old and am happy to see that she is acting like a normal 2 year old.
So all good news really, some therapists that haven't seen Meg in a while saw her in the last week or so and were amazed at how well she looked health wise, how her head control had improved, how chubby in the cheeks she is now she eats and how alert and interested in everything she is including her communication book.
Again I guess the medical profession would say these are all airy fairy improvements in Meg's condition and may have happened anyway without stem cell therapy, but to us as the people who will have to care for her for the rest of her life - we don't care, we have seen the reduction in spasticity in her hands and arms, Meg spends most of her time now with her hands open (only fisted when she is distressed) she is getting hold of her feeding spoon and getting it up to her mouth (not quite in her mouth yet but close) and this reduction in spasticity has resulted I believe in her increased abilities. I have also noticed that her leg length discrepancy (her left hip tilts due to tightness in her abductor muscles) which causes her left leg to appear shorter, has decreased. Meg also receives weekly Bowen therapy from our local wonder, healing woman Paula Hall which we hope may also help with this.
On the feeding front Meg continues to thrive, eating loads of food and we have finally reduced the night time fluids over the last 6 weeks since our return from Europe to nothing. We are now on the first week of one month with no using the PEG at all and then OUT IT COMES! - This will be a big day for Meg and the whole family.
Thanks again to everyone for all the support encoragement and love you have show our family over the last year
Kate, Meg, Jason & Tom
To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846
Sarah Davis from Essendon - comment
Hi Sarah - thanks for your contact. I am afraid I accidentaly deleted your details. If your still wanting to make contact please comment again or email me on casleyke@bigpond.com
To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846
To Donate to MegAid Bendigo BankMegAid TrustBSB 633000Acct 137281846
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