Thursday, March 4, 2010

Update - lots of assessments


4th March 2010


Hi there,

It has been a while since I updated. I got to the point where I felt I didn't want to overwhelm you guys with all our life issues but today I was the one overwhelmed by you asking for an update. So before I start, thank you for caring so much about Jed and please, if you don't want to receive mails please let me know - no offense will be taken I know everyone is busy at work... that way if you want an update you can view his blog at http://jedjourney.blogspot.com/ or his facebook group "Save Little Jed".

It has been a very busy period for me with Jed needing lots and lots of testing to determine what damage has been done to his brain from the radiation. Sometimes the damage only shows in later years so we needed a starting point to refer to. We had a Psychometrist assess him and she did a 2 hour evaluation with him. We will get that report in about a week or two. He also had a 4 hour eye exam... most of the time he spent annoying the lady trying to test his eyes - the test was broken up over two days as Jed got soooooo bored during the testing. I am VERY happy to report that Jed's vision is 100% perfect. Considering the location of the tumour this is wonderful news and well worth the cost of the test!!!! He then had an evaluation by a new Occupational Therapist - they think he has SID (sensory integration disorder) caused from the cancer - the OT - Rachel will work with Jed every week on a Thursday from now on. Jed is still doing his swimming instead of the physio and he is doing very well - he has managed to swim 5m across the pool - I'm so proud of him. On the 13th of this month Jed has to see an educational psychologist as part of the recommendation from the psychometrist to determine if Jed will be able to attend a main stream school next year or will he need a remedial school. I honestly I don't mind either way as long as he gets to go to school!!!! I also took him to a homeopath to see how she could work with the oncologist - that turned out to be a complete waste of money as none of the medication, although natural, can be given to Jed according to the oncology dietitian... so who knows.... A special thank you my cousin Rachel in England who did some fund raising and this is covering a large part of these expenses!


Jed was due for an MRI on the 2nd of March - yip yesterday - the neurosurgeon and doctors have decided to push the MRI out to see the real effects of the chemo and to see if the contrast enhances over this time. His MRI is booked for the beginning of April. I am extremely anxious about this decision and Jed is very shaky in the mornings and then I have all kinds of negative thoughts but by lunch time the shaking improves and he is filled with energy.

Jed's chemo did not go well on Sunday and he has developed an allergy to Carboplatin chemo - this was a rather serious reaction - he went bright red and his ears started burning - he was screaming "help me Mommy" - the nurses administrated phenegan - allergy medication and the reaction stopped about 20 mins later. Going forward the doctor and I have agreed to pre-treat Jed with allergy medication to avoid the allergic reaction. Jed will also be monitored very closely as the chemo is given. Nothing in life is ever simple hey!

Jordan's surgery has been moved to the 14th of April so please keep that date in mind for extra prayers. The other day Jords was playing with his water gun in the pool and he pointed it up to the sky and shot it towards the heaven and then shouted "hey mom I shot God" - I found it rather funny as the relation is very real to Jordi and he was having fun playing water guns with his heavenly Father!

Vusi has finally had his ballie removed from his tummy - today in fact - and was sterilized at the same time. Even this made me sad, I now will never be a granny, the chemo and radiation have made Jed sterile. Even this is a mild concern considering what the overall risk is!

Thank you for your loving messages on mail and thank you for not forgetting me. If one thing I can tell you besides this being a horrid experience - it is also very lonely at times.

My life sure has changed!


Attached is a photo taken by my friend Jenny of Jed playing in her garden!

Love and gentle hugs
Bonni

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