Journal Entry for July 10, 2007
July 10, 2007 4:22pm
Well today i am not a happy bunny i have gotten carys home from hospital and have been applying for all the help they advise you get, and i have been …
Helenstar 
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About Me
Helenstar
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About Me
I am Helen im 30years old and have a baby girl called Carys who is nearly 15months old and i also have Taylor who is 8years and Tyler my step son who is 4yrs. My lovely is Craig and we get married finally in 5weeks on 28th July. We are both police officers in the UK and my biggest passion is Partylite candles!!!
I am Helen im 30years old and have a baby girl called Carys who is nearly 15months old and i also have Taylor who is 8years and Tyler my step son who is 4yrs. My lovely is Craig and we get married finally in 5weeks on 28th July. We are both police officers in the UK and my biggest passion is Partylite candles!!!
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Journal Entry for June 23, 2007
June 23, 2007 7:09pm
Well finally i have found a CHARGE forum as there are very few in the UK and the one i did try to join i never heard from after asking to register …
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I’m With You
my baby girl also has charge s. she is 4.5 y old.I hope you and your girl feeling good. i know it's not easy... sending you hugs!! michal
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noticed you haven't been around in about a year or so ... just wanted to give a hug. finding CHARGE S support is so difficult ...
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hope you have a good week...
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I’m With You
take care...write me...
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Please let me know how the baby is and how you all are doing i care love kalei
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Support Groups
Close CHARGE Syndrome
Carys has spent her entire life in hospital since birth and is not yet home,10 months of which was in intensive care,she has life limiting heart conditions 3 open heart ops so far, bronchialmalacia in her lungs pierre robin syndrome in her upper airway has a trachiostomy is on oxygen 24hrs, no balance, has GDD and also is gastrostomy and jejunostomy fed only.She also has a submucus cleft palate she was diagnosed with CHARGE six months ago.
Treatments
- Inderal Somewhat Helpful
- heart med that helps to stop her heart from going into svt,is a beta blocker,flexcanide is an anti arrythmic, spirolactone and frusimide are diuretics,ranitidine antacid
Close Parenting Toddlers (1-3)
I have an 8yr old son a 4yr old step son and a disabled 15month old daughter me and hubby are police officers and get married in 5 weeks 2 weeks before my daughter comes home after spending 15months in hospital
Open Arrhythmias
My 14month old daughter carys has already had 3 open heart surgeries but the after marth is aortic ectopic arrythmias with rates of between 175 and 257 bpm (not runs of svt)and on occasion bradycardia her lowest before arrest being 45bpm.She has tachycardia and also flips in and out of sinus rythymn if her heart is too fast for too long.Unfortunately she is extremely sensitive to drugs and we only have two that have some effect so far
Treatments
- Inderal Somewhat Helpful
- The exact amount of propanolol does help bring her rate down, she has it 3 times a day the flecanide helps so that if she goes high she doesnt flip out of sinus rythym
