[Disclaimer] I am not a qualified medical professional and I do not intend to take away from your Doctors/Nurses advice. I am only here to help raise awareness and share Holly's own experience.
Heroes
Holly...You are my hero, you are my angel, you are Mummy's best friend, you are the person I will do all I can for, whatever it takes.
Mummy is often helpless when you are in pain.
Mummy is often the baddie when trying to give you medicines.
You are too little to realize that I am trying to help, but that I can't explain that to you just yet.
Mummy wants to tell you that "it will be ok, and that it won't hurt",
But Mummy knows that it will sometimes hurt, and I have to hide my helplessness when I am trying to comfort you.
Mummy wants to take all your pain away and make everything better,
But Mummy knows she can't.
What Mummy can do is cuddle you,
and kiss you,
and protect you the best she can,
and hold you and try my very, very best to do everything in my power to get you through this.
Mummy can be your rock and fight for your safety.
Mummy can try and talk to as many Doctors and Nurses that will listen (and even the ones that won't).
Mummy is your voice, and I will scream at people until they listen because you can't,
you are just a little angel, Mummy's little angel.
An angel with invisible wings (but mummy can see them).
Holly, you have angels all around you, I truly believe that.
Children are the most precious little gifts on earth, they are our future and do-not deserve to hurt.
I need help to comprehend why this is happening.
I get all the help I need looking into Holly's eyes, and listening to her giggle even when she is going through all this.
You are Mummy's hero Holly, and I hope to be yours xxx
Help Holly ***I UPDATE THE TOP BLOG ONCE A MONTH: "ALL THE LATEST UPDATES 2009"*** (do you have any photos of Holly that you can post back to me please I've lost so many) view more
About me: WHAT HAPPENED: Our little girl became ill in July 2006 (then aged 3) with serious bladder & bowel problems. Although Holly has had problems, on & off, since she was only 4 weeks old, the Doctors just called it "colic" or "constipation", but I knew it was more serious. Holly had many infections, especially urine infections, a bowel condition called Intussusception when she was 21 months old, and was diagnosed with an enlarged kidney and duplex ureters to that same kidney. Holly also has a slight problem with her immune system, so she can get quite sick with infections. Then after a fairly good year of health, Holly became much worse in July 2006 and then she was in hospital for 6 weeks during September/October 2006, and had many tests to try and find out what was causing her symptoms of severe tummy pain, loss of appetite, tiredness, pains in her legs etc. One test showed she had a very enlarged bowel (esp. the large intestine) a very large bladder, and large stomach. Her bowel also doesn't work properly as it's "too slow", although the laxatives she is on now are helping her. She cannot tolerate solid food very well and was given prescription drinks, in October 2006, called Scandishakes to take the place of normal meals. The main condition that was mentioned in October 2006 is Hollow Visceral Myopathy. Although a year later we were told that it isn't this condition. Then in July 2007 Holly was put on a dairy-free diet and her Scandishakes were replaced with ProvidExtra drinks.
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HOLLY ALSO SUFFERS WITH A BLADDER CONDITION: Along with Holly's bowel condition, Holly's bladder also stopped working properly in September 2006 and caused very painful urine-retention, and now she has a catheter through her tummy straight into her bladder, called a supra-pubic catheter. After having the suprapubic catheter for 22 months, Holly was going to move onto using Intermittent Catheters to help reduce the amount of urine infections she is getting, but the Neocate drinks she was on for her bowel, helped her bladder condition too and her bladder started to recover: The suprapubic catheter was removed in Aug 2008. In 2006, Doctors thought that the illness went undiagnosed for so long, it caused her bowel to swell and this pressed on her bladder, squashed it, and stopped it emptying properly. Although in 2008 some other Doctors think it is more complex than that, and that she has the same condition in her bladder as in her bowel. In the bladder the condition is called Eosinophilic Cystitis. To date, we still don't know for sure what is causing her bladder condition. Holly's bladder is still very large and she still has some urine rentention which is being treated by a speacialist nurse.
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HOW HOLLY GOT A DIAGNOSIS FOR HER BOWEL:
After Holly had colonoscopies and biopsies in October 2006 and again in July 2007, we then saw a private Doctor at GOSH in October 2007 and the conditions Holly has been diagnosed with is: Eosinophilic Enterocolitis. Holly has to avoid Dairy & Lactose to help her overcome this condition, some dieticians call this a "MEWS" diet because Holly also has to avoid Milk, Eggs, Wheat & Soya. In Oct 2007, Holly's diet has been restricted even more, and now she is having special drinks called Neocate Active on prescription. Then during the winter of 2007/08, Holly had one infection after another and this caused a "flare-up" in her Eosinophilic condition. By February 2008 Holly could only tolerate JUST Neocate, she had an Ng (nasal-gastric tube) fitted to help her to take the Neocate drinks (as she hates them!). Holly couldn't eat for 4 months! The Neocate diet helped Holly so much that in June 2008 Holly started eating "safe" foods and we are reintroducing one new food a week, but in keeping with her Hypoallergenic Diet. In August, after 5 months, the Ng was removed.
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Since getting this diagnosis for Holly I have set up a new page on here called "EOSINOPHILIC SUPPORT". I started it on the 1st November 2007. It was set up to try and give others the information I was finding so hard to get hold of myself! Please click the banner of Holly below to go to it.
I edited my profile with Thomas Myspace Editor V4.4 (www.strikefile.com/myspace)
Who I'd like to meet: Since we have been going through this with Holly, I have noticed that it is very hard to get help, support and information about this condition ~ especially from some Doctors themselves! I would like to meet other Mums/Dads/Carers that can relate to what we are going through.
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Holly has been in our local newspaper 3 times, on BBC News two nights running, in a local children's health magazine, and I have done a radio interview.
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I find the worst thing...not knowing what the future holds. Thank you so much for taking the time to read this, Love Tina and Holly's Daddy, Pete xxx
Long ago in a small, far away village, there was place known as the House of 1000 Mirrors. A small, happy little dog learned of this place and decided to visit. When he arrived, he bounced happily up the stairs to the doorway of the house. He looked through the doorway with his ears lifted high and his tail wagging as fast as it could. To his great surprise, he found himself staring at 1000 other happy little dogs with their tails wagging just as fast as his. He smiled a great smile, and was answered with 1000 great smiles just as warm and friendly. As he left the House, he thought to himself, “This is a wonderful place. I will come back and visit it often.”
In this same village, another little dog, who was not quite as happy as the first one, decided to visit the house. He slowly climbed the stairs and hung his head low as he looked into the door. When he saw the 1000 unfriendly looking dogs staring back at him, he growled at them and was horrified to see 1000 little dogs growling back at him. As he left, he thought to himself, “That is a horrible place, and I will never go back there again.”
All the faces in the world are mirrors. What kind of reflections do you see in the faces of the people you meet
Hi Tina, I'm so sorry I haven't been by lately. But you and I know how that goes. I haven't had much time to do anything but take care of Van. He's responded well to chemo but it makes him so sick. It's almost like he hasn't improved but he has amazed his oncologist. He is having a body scan on the 16th, June and that will show the real picture. Hopefully he can reduce the amount of chemo and start to feel better. They said he has to have it as long as he lives but if things go well it will only be weeks or months apart. That is our goal. A miracle would be nice. So how is that beautiful angel of yours doing? I still pray everyday for Holly. She will always be special to me even though we are so far away. She pulled my heartstrings the first time I saw her. Lots of love to all of you, Karen write when you can.
Just wanted to stop by and say hey to all my good friend. I hope your week is going well. It's hard to believe it's halfway through already. The weeks seem to just fly by anymore. Take care and remember I'm thinking about you. That's cause you're all so special to me.
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