getting anyone else down

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Permalink Reply by kelly on November 7, 2008 at 7:31pm

hi thanks hun and sorry you are finding things hard too.
i think i am just feeling really sorry for myself at the mo.
i am still getting used to having a dissabled baby with the reflux and eveything else, not being able to go back to work so not having any money, the prospect of Abbie having the fundopilcation op i just keep thinking she was bad enough when she had the gastrostomy.
my hub is worse that useless and does nothing to help and my other 2 girls are being so difficult at the mo.
i am seriosly considering selling them on ebay. lol
kelly

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Permalink Reply by katie price on June 6, 2009 at 8:06pm

Hi Kelly,
I have only just joined this site but have spent hours reading all the blogs and have to say that it's hard to believe that there are so many of us out there suffering so much. You really do sound as if you are having a hell of a time. My little one Orla has severe reflux and we fed her with an NG tube for 4 months which we have just got rid of. However, feeding is still so hard and I get so down when it takes me an hour to get 50ml in her and then she pukes it all up again. I have seen a consultant who has recommended a gastrostromy - it terrifies me though. Are you able to give me any advice on what the op was like and how things are for you now? Would you recommend it? How is Abbie doing these days? katie

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Permalink Reply by kelly on June 7, 2009 at 11:23am

hi hun,
sorry to hear that you are having these afull problems too hun,
unfortunally abbie is no better i feel like we are living a nightmare everyday, she is having the fundopiation op soon hoping it will be the end of all this but knid of know its not going to be,
the gastrostomy was the best thing we ever did, nott hat it has made her reflux any better but she is happyer not having the ng tube plus i am happy not to be putting it down all the time,
becuase abbie has such poor muscale tone due to her chromaosme disoder her reflux seem to not be able to be controled with medication,
abbie is not sick alot she tends to swallow it back down now but what she does not mannge to get rid of goes into her lungs, and burns her throat,

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Permalink Reply by katie price on June 8, 2009 at 8:18am

My God, poor you and poor Abbey. You really do have a lot on your plate. Are you getting much help from family and friends? Is the gastrostomy easy to look after and how well did she recover after the op? Has it ever come out and can she have a bath etc?
We have just found out that Orla has a genetic condition called Noonan's Syndrome and a heart condition which has been a bit of a shock. God these last 6 months seem like 6 years! when is your fundop?

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Permalink Reply by kelly on June 8, 2009 at 9:13am

ah hun i ams o sorry, noonan syndrome was on the list they thought abbie had, as wells as tuners syndrome, kind of wish she did have the turners syndrome on where near as bad as what she does have,
i know its hard but she is still your little star, abbie makes me smile every single day, i do get a bit upset when i see other children the same age doing things abbie cant well even 7 month old babies can do more than abbie but every time she does something new its extra specaial, her conditon is called Trisomy 9p syndrome, if you watched the tv serise born to be diffrent, abbie has the same condtion as shelby,
so far abbie still has the peg tube so she has not pulled it out yet but when she goes for the fundo she is having a button fitted which are easyer to get out, we will find out when she is having op on the 15 th june got app at manchester, well got 2 that week at manchester not on the smae day, abbie need hearing aids too so going for that,
i am here if you ever need to talk hun

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Permalink Reply by sparkle on June 9, 2009 at 11:04am

I have been going through a similar time with my baby - although its only been 12 weeks - 84 nights of no sleep, I really really feel for you, its like life is just a blur as I said to my husband this morning your wife has gone on holiday to the maldives and the woman you are now living with is an imposter !! crying, agitated , sleep deprived. I love our baby boy so much , but the sleeplessness takes its toll on the enjoyment of being with your baby. I am now on count down to go back to work and it scares me how I will be able to cope with my job, with little sleep. hang on in there, I read lots of comments who say eventually the babies grow out of it into beautiful happy little people!!

Take care x

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