<![CDATA[Give hope to Evie. - Blog]]>Tue, 16 Feb 2016 00:45:38 -0800Weebly<![CDATA[February 06th, 2016]]>Sat, 06 Feb 2016 12:38:17 GMThttp://givehopetoevie.weebly.com/blog/february-06th-2016WELL HELLO AND THANK YOU FOR FOLLOWING US ON THIS HORRENDOUS JOURNEY!
Evie is almost 6 now and we still haven got anywhere from 2 years ago , still waiting for a referral to London its been such a struggle, Christmas day 2013 we spent in hospital as Evie has severe breathing problems due to her little stomach filling with air , after that came lots of vomiting on a daily basis so mummy decided (after a lot of thought and research) to stop all Evies medication! what a transformation in the little girl , Evie can now count to five say her name ,age,and where she lives , everyday this little girl amazes me that is where my strength comes from.from. Evie still can not walk bum shuffles everywhere and into absolutely i everything and we love it ha! we are trying to raise money to get Evie to a metabolic clinic ourselves but sadly with the lack of knowledge and understanding to mitochondrial disease there is very little support, we just want to thank everyone who have helped us on this journey xxx.      ]]>
<![CDATA[Evie's update! 31/07/2014]]>Thu, 31 Jul 2014 10:45:01 GMThttp://givehopetoevie.weebly.com/blog/evies-update-31072014Well still no peg for miss Evie as we are currently waiting for a referal to Queens square hospital in London (been waiting since october last year) Evie has been given a walking frame that she loves! walked to the shop last week her little face was priceless.... We finally have a new home adapted for Evie and its lush :) I have decided to home school Evie as the health risks for school are too high, and i want her here as long as possible it was one hell of a battle but we done it! i would move heaven and earth to keep my baby safe. We are lucky to have amazing people in our lives and wouldn't change a thing :) A huge thank you and loads of love to my mum who is here day and night through it all every seizure, tube change the works ...as soon as we know more we will update :) thank you people lots of love from Evie and family. xxxx
<![CDATA[Current update. 12/07/2013]]>Fri, 12 Jul 2013 11:25:52 GMThttp://givehopetoevie.weebly.com/blog/current-update-12072013Finally got a date for Evie's percutaneous endoscopic gastrostomy surgery
She will be having her PEG in her tummy on the 08/08/2013. 
We were told yesterday that on the 07/08/2013 she will be admitted into peads south ward in the heath for observation. 

The following day she will be having her surgery. This surgery is done to many patients throughout the year, but it can be very complex with Mitochondria Patients.
Mitochondria patients aren't allowed certain general anaesthetics  and recovery is hard.

Knowing Evie the strong little fighter she is all will be fine. 

we will continue to add more notes following her recovery & progress.

Evie's operation has been cancelled due to an hospital emergency apparently :( no date for her to go in as yet ... updates to follow ..lots of love Evie, Mum and Family x x

<![CDATA[Evie from Birth]]>Mon, 08 Jul 2013 00:34:59 GMThttp://givehopetoevie.weebly.com/blog/faqEvie was born on the 22 April 2010 ..Having a newborn is suppose to be a celebration ,for me that was not the case at all , Evie was not feeding properly I also noticed "tremor" like episodes her little body would be so stiff but very jerky at the same time,i knew this was not normal at all.. so in and out of hospitals,clinics and whoever else would listen,they found nothing at all ,well then came projectile vomiting over and over, Evie's weight dropping by the day,Evie wouldn't fix and follow with her eye's or respond to sounds i knew there was something wrong but what?? the days turned to months and still nothing until Evie had a standard check up with GP by now Evie was four months old the doctor noticed Evie's soft spots on her head had closed and said it was a possible sign of brain damage my heart sank ..we were then told to take Evie to our local hospital where she underwent blood work ,spinal fluid test {lumber puncture} to watch your baby go through this and cry until they just can't cry no more,That really pulls the heart strings! anger and frustration soon set in ,my time of joy was a complete nightmare! walking on eggshells as Evie would then just stop breathing ... the hospital stated that the amount of vomiting and "gaspy" breathing it was likely that I was over feeding her ..I came a way with a tremendous amount of guilt ! did I make my child sick? 
2011 DEC.... Evie had an MRI head scan so all we could do was wait in between the infections ,admissions to hospital and the tears! Then FEB 2012 the results where in, Evie had an abnormal scan but still no information to what or why this was...  MARCH:2012   Evie had a muscle biopsy and then five months later in JULY two days before my birthday it was said that Evie had this Mitochondrial disease i was so relieved to have an answer .. none of the wiser what it actually was, i was told it was to do with energy and "not to worry" so i didn't . they also mentioned that there are different syndromes associated with this disease and they do not know what syndrome Evie has that was JULY 2012 ... now to date WE STILL DON'T KNOW ...  We are waiting for "if and when" last MARCH evie was starving to death as she could not swallow seen a lot of dieticians who said to try and make more of an effort to feed my daughter as maybe i was too anxious ! they had no idea to be honest as i have weaned four happy healthy thriving children before Evie ... so now i had a two year old little girl who could not swallow drop to 14 pound in weight ... i went to my doctor in tears who then seen just how sick Evie was her eyes sunk her face so thin, it was awful... They admitted Evie right away and got her on the NG tube ..what a difference it has made ..Evie is now three and a healthy 24 pound in weight ..well healthy for Evie ,she can not walk but bum shuffles ..it has to be said again she hit rock bottom before doctors intervention! I know they can not work miracles but even so a mother knows her child ..its the most powerful tool in the universe ..It also turned out Evie has allergy to baby milk so it was not due to over feeding ... we are now waiting for surgery so Evie can have the peg in her tummy it was booked for MAY but guess what ,still nothing,I will update if and when that happens .... we have a long rough road ahead and this I understand but we still do not have a lot of information regarding Evie and her health we know what we the family have researched ourselves, I still 100% don't know what it all involves ..Evie has now been referred to TY HAFEN children's hospice ,and again we were told not to worry ..so we are trying to raise the funding to maybe get private treatment and help ,again I know there is NO CURE but there could be treatments and useful things we could be doing to stop this awful disease progressing ! thank you for reading this ... more to follow with love Evie and family! x xx]]>