This years Momentum 94.7 Cycle Challenge was such a huge success!! Thank you so very much to our whole team for opting to ride for our cause to raise funds primarily so that Jess could attend her therapy sessions more frequently and to cover any costs not covered by medical aid for any equipment, nappies or medication that Jess may need. Jess has been attending additional therapy since August thanks to the funds raised from this event. We are also very proud and excited that our whole team managed to complete the cycle challenge, this in itself is a huge accomplishment as only 19 200 of the over 32 000 registered riders managed to complete the challenge before the cut off time! Well done Team!!
Our immense gratitude also goes out to our corporate sponsors as well as everyone that sponsored a rider. The total funds raised to date from this particular event is R74 340.91. We are so overwhelmed by this as it has exceeded our target required to cover the items noted in our objectives for our Ride for a Purpose.
Next year, we are expanding our Ride for a Purpose for Jessica and friends. We have another three special angels that we would like to include in our cause!
Last week Thursday Jess had her botox injections done and casts put on both legs. This was done under general anesthetic in theatre. Although she was a little miserable once she came around, she has been a super star. The orthopaedic surgeon advised us that due to Jess's feet being puffy on the day, he couldn't make the casts as tight as he would have liked to as this could cause pressure sores. We just have to keep an eye to ensure that she doesnt try and pull her feet out of the casts otherwise he will need to remove them sooner than expected which is two weeks. The botox acts by preventing the transmission of signals between a nerve and its target muscle reducing excessive stiffness which will increase the chance of normal motor development. Jess now needs to have intensive physio therapy over the next two months. Thanks to the funds already raised during the Momentum 94.7 Cycle Challenge Campaign, today Jess started with her extra therapy sessions. We are feeling extremely blessed :)
Today we took Jess to the Orthopaedic Surgeon that we were referred to by her Neurologist as she was concerned about Jess's hips and ankles. The good news is that there is nothing wrong with Jess's hips! According to the orthopaedic surgeon, the way Jess lies with her legs in a froggy position actually protects the hips and there is no chance of dislocation. Jess's feet and ankles are a bit of a concern however as well as her hamstrings. Her muscles are very tight which is what is causing her pain during therapy and why she is able to slip her foot out of her splint. He has suggested that we start with the less invasive procedure which is botox injections in her legs and feet and put her in casts for two weeks. Holding thumbs that this all goes well :/
YAY!!! Today RIDE FOR JESSICA was officially registered as a Charity Bond for the Momentum 94.7 Cycle Challenge taking place on 17 November. Turns out we do not need an NPO number to register for this event! Anyone that would like to join our team of riders must please register on www.cyclechallenge.co.za. During the registration process you can link your entry to the RIDE FOR JESSICA charity bond or alternatively, once you have completed your registration, you can advise us that you have done so and we can link your entry for you. The cost to enter is R475 (which includes a timing chip and race license - payable directly to Momentum 94.7 Cycle Challenge). If you would like to sponsor any of our riders, please email us on firstname.lastname@example.org for a Sponsor Form.
This year Brendon along with a team of friends are partaking in the Momentum 94.7 cycle challenge Ride for a Purpose to raise funds and awareness for Jess. The race is on 17 November. Currently we are in the process of setting up a Trust for Jessica and we can then apply for the registration as an NPO. Once this process is complete, we will have Jess's Cause registered as one of the charities on Ride for a Purpose. If you or anyone you know are interested in joining our team, please let us know so that we can notify you once all the legalites are in place. Thank you very much to everyone who has assisted with the design and layout of the pamphlets and sponsor forms, much appreciated!!
It has been a year since we travelled down to Cape Town to start Jess off on the Ketogenic Diet. We can happily say that this year has been a great success. Although we have a phone consult every month with the dietician to tweak the diet according to how Jess has been through the month, on the whole it has made such a difference to the severity and frequency of her seizures. Because Jess maintains ketosis so well, there is no need for her to be on the formula which keeps the cost of the diet to a minimum. She is only on the diet itself and MCT Oil that aids in producing the ketones. We also recently took Jess to a new neurologist who has adjusted her medication dosages and started her off on something to help her sleep through the night. We see the neuro again toward the end of the month to update her on how Jess has been on the new dosages etc.
Jess has always had cold hands and feet however over the past few months the discolouration has gotten a lot worse. Jess's feet go so blue that they are almost black and sometimes they would not even be cold! On Sunday her right leg became swollen. We have been very concerned as clearly the circulation to her legs are not at optimal level. We were referred to a paediatric cardiologist to determine if there was any underlying heart condition that could be causing this. Jess had a thorough assessment done and thankfully the structure and blood flow of the actual heart is completely normal...GREAT NEWS!! However, during the examination, the cardiologist identified that Jess has a condition called Wolff Parkinson White Syndrome. He exlplained that most people live a completely normal life with this condtion, some never being diagnosed. Basically, this means that along with the normal pathway in the heart where the electrical signals are passed through, Jess has an addtional abnormal pathway. The electrical signals can therefore either go down the usual pathway or the extra one. This could lead to a rapid heartbeat and is the most common cause of a fast heart rate in children. He has also diagnosed Jess with Raynaud's Phenomenon which would explain the discolouration in her feet. It occurs due to a decreased blood and oxygen supply to the affected region and is triggered by the cold. Besides the discolouration, other symptoms are pain and swelling. The cardiologist feel's that neither of these conditions are a cause for concern at this time. If the discolouration does not get better during summer we can start Jess on meds to dilate the blood vessels, but the only treatment we need to do for now is a massage to promote proper blood flow. If we start to notice episodes where Jess's heart rate increases, there are surgical options available to freeze the abnormal pathway, however the cardiologist doesn't think the risk factor is high. We are grateful to know that there is no immediate need to put Jess on more medication or that these condtions will cause and serious problems for Jess. We have a follow up visit in 9 months.
We met up with the neurologist for the results of the MRI and EEG. He explained to us that there was nothing unexpected found on the MRI, that on a whole it was normal. Unfortunately it is the under development of Jess's brain that is causing her epilepsy. This will never worsen however can also never improve. All that we are able to do is keep her seizures under control. He also advised that he wouldn't go as far to say that Jess has Lennox Gastaut Syndrome however more generalised seizures. He confirmed that Jess is a perfect case for the ketogenic diet and that he would like us to have a phone consult in a month once we are certain that Jess is completely over the viral infection and we will then adjust her medication a bit. We are fully aware of Jess's delay but it still makes us very heart sore to hear the words spoken out loud. Jess was finally discharged from hospital last week Sunday as she managed 24 hours without a fever. We were so grateful to get out into the fresh air, and it allowed us some time to take in Cape Town before our return to Joburg on Wednesday night. We are extremely happy to say that we are now on day 8 with no seizures whatsoever. We are still adapting to the new diet as the portions are tiny and very fatty. We are so blessed that we had the opportunity to do this trip and thank everyone for their support, prayers and kind words.
Jess was an absolute star on her first flight! We were admitted to hospital on Monday afternoon and Jess started on a formula and oil to put her into a state of ketosis. This is basically a state of starvation but without physically cutting out all food to achieve this. The formula and oil ensure that the body makes more ketones than glucose so that she will use fat for energy rather than glucose. We have to monitor her levels of both the ketones and glucose three times a day to ensure that she remains in the state of ketosis permanently. Once she is in a full state of ketosis, we should see a drop in the frequency of her seizures. Unfortunately, Jess has picked up a viral infection which has put a little spanner in the works as she was battling to keep any fluids down and the oil just made her gag. She has now been placed under the care of a paediatrican who is also clued up on the diet and that will now be working with the dietican and neurologist until the infection has cleared. Jess is currently very weak and tired which are symptoms of the initial phase of ketosis but the infection has also been a contributing factor. Thankfully, Jess managed to keep at least half of her first keto meal down today so we hope that she is on the mend. The neurologist has booked her in for an EEG and MRI on Friday afternoon so we should hopefully have better insight thereafter.
We are so very pleased that we have made contact with a dietican based in Cape Town that specialises in the Ketogenic Diet. I had such an inspiring phone consult with her two weeks ago where we discussed the benefits of this high fat diet in the prevention of seizures. The only real side effect is hard work and we are so ready for that! We leave for Cape Town on 4th March and Jess will be admitted to hospital down there under the care of a neurologist that will monitor her progress on the diet as well as the dietican. Finally we have a postive outlook towards the prevention of Jess's seizures. The Ketogenic Diet apparently works on the same basis as Diabetes where the body utilises fat for energy instead of sugar. During the first few days in hospital, Jess will be put into a state of ketosis via a specialised formula and from there, the new diet will be introduced.