Wednesday, June 9, 2010

Life, love and grandbabies

How do you like Robbie's Melbourne Cup Race outfit - hat and hand bag - the hat features designs from Margaret's Magnificant Melody Design CD and the hand bag is hot off the press from Peaches' Purses - the directions for the hat will be in CE 28 and the directions for the purse will be on the design CD along with directions to make all the purses etc that are on the design CD - it is truly a beauty!
They say a picture is worth 1,000 words - well this is it - I don't want the yogurt and you are wearing it - and that I am right on the middle of the nose with one flick of the wrist - baby Cooper-Jay hit the spoon flying with the yogurt in it and I copped it - I had forgotten how to wear food but soon got back into the swing of things.
Well our lives will forever be changed since the birth of our beautiful baby Zoey Ruby-Rose (Cooper-Jay's baby sister) has Tuberous Sclerosis Complete a rare genetic disease which can be inherited if one parent has it but in her case it is a spontaneous mutation. This horrid disease allows non malignant tumors to grow on vital body organs like the kidneys, heart, eye and brain - all of which she has. The main concern is the brain and due to the fact that the tumors die and calcify electrical currents get blocked and cause little explosions which result in seizures - she has started at eight weeks. (I was hoping for an up dated picture of our little Zoe but the DVD my son Jason gave would not open!) The picture will have to wait for next time.


A week in Westmead Children's Hospital is a lesson in love given by the parents and amazing nurses and doctors, acceptance for parents and grandparents and a total new perspective on life. Seeing this apparently perfectly beautiful baby girl with electrodes covering her tiny head for an EEG - not once but twice, learning she is on a strong anti-seizure drug with the edict being given that from now on we all will follow the path her tiny body leads us truly makes one realise you don't have a choice but to be strong. When I consider my life is nearly over and what can I do to be there for her and her parents and please God let it be for a while! (One good thing has come out of this I have discovered I can still cook on a regular basis - I have become a real soup kitchen!


Zoey is home now, doing all the wonderful things a 9 week old baby does, smiling, laughing, gurgling, kicking and bring a wonderful joy to us all, always tinged with the sadness of reality - but today is a good day and we are grateful for that.


Our beautiful Harvey is growing in charm, looks and chatter - he is like a sponge soaking up everything he sees and hears being the total little mimic - this we have learnt he is very good at too!


On the work front which has taken a second place we are still all on track with CE 28 being just completed and now we are up to our next projects - we have three new quilts in the making and a new design CD coming along - and yes Peaches' Purses will be out by next week - it is quite a large project, but we know you will love it.


On that note I must away and get back to work, forgive me Erica I am trying to be faithful in my blog up dates, but life has thrown us all a curve ball and it is a little hard to catch at present, love you all Jenny.

8 comments:

  1. Our thoughts and prayers are with you all...
    Erica and Dick

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  2. Helen O'HaraeJune 13, 2010 at 1:22 AM

    May God give you all many good days with Zoe, and all the strength to help her through her bad days. I am sure that many of us are praying for you and your family.

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  3. I have great empathy for you all, be strong, my first and only child had multiple handicaps, it sure puts things in perspective! All the best.
    Sue A.

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  4. Jenny-I don't know what to say-I know from experience what it is like to have a child and a grandchild born sick. I just pray that God gives you and your family all the strength that you will need. Much love to all of you.

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  5. Jenny- My granddaughter Olivia has the TSC. She is almost 2 years old. In May she had surgery done in Cincinnati, Ohio. Dr. Franz is world re-known in TSC. Olivia started having seizures @ 4mos old. She as was prescribed Kepra which helped and kept her seizure free for about a year. Then the seizures returned as the brain grew. Then she was prescribed vigavatron, it did not work. Surgery was the next step, she had surgery May 10 and has been seizure free since. She is developmentally on target and doing great. There is hope! Joan jmurray56@tampabay.rr.com

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  6. Jenny and family,
    In different situations and human disease, disasters, it is difficult to write, he also had passed and pass remains difficult moments in my life, I know you must fight and must not lose hope, strength, look for help, I wish you all a lot of strength, I pray, I wish you much forces,

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  7. Jenny, Words can't describe how devasting it must be for you and your family to know that little Zoey has this terrible disease. My thoughts and prayers are with you all. May God give you all the courage you will need over the coming years!!! and may HIS peace and grace be with you always.

    Maryanne

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  8. jenny, i have just recently visited melann's in adelaide and she told me of your granddaughter. jenny you know me (ce.27 sewing legend) and know of my daughter, so please accept my thoughts, love and prayers, for zoey. i know exactly how you all are feeling at this moment, so please look after yourselves as zoey will be needing you all to help her recover. i have never subscribed to blogs before but will continue to now to see how little zoey is handling her illness. hearts and hugs to you all lois

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