We had such a wonderful day at the Potjie Cook Off yesterday!  Jess was so content to be out in the fresh air and we all enjoyed the festivity of the event.  Due to the overwhelming success of the fundraiser, we are able to get Jess's new wheelchair.  Her exisitng buggy will only probably last for the next few months as she is getting too tall for the back rest.  We are eternally grateful to everyone that played a part in raising the funds and a special thank you to Dennis, Bianca, Dino and Danielle.  Visit Jess's facebook page and the potjie cook off website for photo's of the day.

www.facebook.com/jessicamuraour
http://potjiecookoff.asgsolutions.co.za/

A reminder about the Potjie Cook off taking place this Saurday 16 July at Fourways High School.  We are very blessed as Jess has been nominated as one of the beneficiaries for this event.  Please visit the Potjie Cook Off site on http://potjiecookoff.asgsolutions.co.za/ for more details of the event.

We took Jess for her follow up visit to the Neurologist on Monday.  The doctor is happy with how Jess is doing however we are increasing her dosage of the Lamictin over the next ten weeks to try and bring down her Infantile Spasms.  She was very happy to hear that Jess hasn't experienced a 'fright' in a while and advised that her epilepsy is probably changing.

We are extremely thrilled to announce that Jess has been nominated as one of the beneficiaries for the 2011 Potjie Cookoff taking place on 16 July 2011.  Details of the event can be found at http://potjiecookoff.asgsolutions.co.za/
Please visit their site for all of the necessary particulars if you wish to come and enjoy a fun filled day or even participate in the cookoff.   

First and foremost, we have to boast as to how well Jess is doing in her standing frame.  Generally, she is now managing around 45 mins twice a day however last night she managed to tolerate a full hour and 10 mins before starting to moan!  We are so proud of her for the progress she is making.  Both the Physio and Occupational Therapists were happy with her on Monday.  Jess started her walking training again and her exercises with the elbow immobilizers.  The muscles in her arms are still quite weak so it will take a while until she is able to lift her arms properly with the immobilizers on.  We have also received confirmation from our Geneticist that Jess's DNA reached the UK on 14 June and that we should expect a 4-6 week waiting period until we receive any results.  We are starting to master the waiting game :)

Due to Jess being ill last week, we were only able to start her back in her standing frame again last night.  She managed to do 15 mins while eating dinner!  This morning she battled a little and only got 8 mins in however we will persevere.   New pic's have been uploaded under the Photo's Page.  We have today, also received confirmation from the lab in the UK of payment received however still do not have any indication on an estimated time period before we will have results.

Today we collected Jess's splints and elbow immobilizers!  We are so looking forward to being able to put her back into her standing frame and start her walking training again.  Will post some more pic's over the weekend to show off her new gear.  We have also received the invoice from the UK for  the chromosome tests.  This will be paid tomorrow so that our Genetics lab can courier Jess's DNA.  Things are steadily moving forward and we are optimistically looking forward to the outcome.

Today we took Jess for her feet to be sized for her new splints.  The Orthotist wants to keep her in the same design as her last one's as these primarily aid with weight bearing through the legs and ankles.  We are also getting her elbow immoblizers that her Occupational and Physio Therapists have requested so that Jess can practice putting weight through her arms...now she really does have an ironman suite :)  We would just like to take this opportunity to thank eveyone again for their ongoing support and to all that have assisted us with the funding to make this possible.  We really have no words to explain how very grateful we are to be so blessed.  There is still no update on the chromosome testing.  We are awaiting final details from the Geneticist however the great news is that we will not have to take Jess over to the UK, we are able to send her blood samples via special courier.

We had our follow up visit at the doctor this afternoon.  Jess's biochemistry is normal which means that she does not have a metabolic disorder like he suspected in our initial meeting.  The doctor has indicated that there must be a chromosomal abnormality.  He has contacted the Head of Genetics to discuss the chromosome tests that we have already done and will apparently hear back from her tomorrow once she has reviewd Jessica's file.  The doctor has explained to us that they will do as many of the necessary tests that they are able to do here in our Country however there may be a possiblity that we will have to take Jess over to the UK for further testing if necessary.  We pray for guidance and strength and that we will finally receive the answers that we so desperately need.

We finally spoke to the Doctor this morning regarding the last blood test that we were waiting for.  Although a few of Jess's levels are a little high, her Biochemistry is all normal.  So as the Doctor commented, this is good news and bad news.  Good in the fact that these tests are normal, bad however that we need to explore different avenues.  He has requested to see Jess again for a follow up visit next week Thursday where we will discuss our next set of tests.