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franie
13th May 2005, 07:41 PM
I'm just looking for a place to vent and this is the best place that i can think of without upsetting my family with my pessimistic attitude.

We got the date for Adam's MRI today, it's the 1st JUne. I know that it is good that it will be done so quickly and we will better know the situation but i am so afraid of what they will find.

The boys were born 8 weeks premature and spent nearly 3 weeks in special care, two months later we discovered a lump above both of their groins. These turned out to be hernias which had to be corrected with a minor operation. Two months later Adam developed a very high fever and was rushed to the hospital. THis turned out to be meningitis. He was in hospital for a week but made a full recovery. Whilst there they noticed the kidney reflux problem and as that can be genetic we had to have Dylan tested too. Of course he also had the condition. So back in we went for tests, scans and finally another minor surgical procedure tyo correct that. 3 months later we were back to make sure that the problem had been corrected. Dylan was given the all clear but Adams hadn't been corrected and this was also when they detected the scoliosis. So he had to have the procedure again, we will find out next month whether it worked this time. In the meantime their grandmother had developed TB and we were all in hospital regularly to be tested for that too. So as you can see we have spent alot of time in hospitals over the last year and everytime that they have been dealing with one thing, they have discovered another problem.

Therefore i am terrified that the MRI will show yet another problem and i think that i have basically convinced mysef that is the case. My main fear is over this extra piece of "bone" protruding from his spine as the doctor said that it could casue a problem and would have to be dealt with if it was too close to the spinal chord.

Anyway i had to get that out and want to remain upbeat for my family as i tend to be the strong one and if they see that i am worried about this, they will think it is serious.

Thanks for listening

andrea
13th May 2005, 09:17 PM
Yvette, big hugs :squeeze: Firstly, I am so glad you feel able to come and vent here. We are all hear to listen and provide that virtual shoulder for you, even if we physically can't make it all go away for you.

You have had a really tough start with your boys and probably haven't enjoyed them in the same way as other parents without the medical issues you've had, because you've had a constant worry at the back of your mind all the time the way only a mother will understand (I don't mean to exclude fathers, but i truly believe a mother feels differently about her children to fathers).

I know totally how you feel about other members of the family. I have had both my parents and my sister cry to me about Erin, but I refuse to let them see me cry. I don't know whether it's fear of showing them how I really feel or fear of upsetting them, but I hope they have no idea of what I go through emotionally.

I always think that every child has their "thing", something about them that their parents worry about. In my NCT group of friends, we've got a hole in the heart, a deafness problem, hypermobility etc, and I thought Erin's kidney problems were her "thing". Little did we know it was just the start of her journey, and I guess you must feel the same too.

I wish I could, but I can't allay your fears of what the MRI will show, but whatever it does, it is so much better to be aware of what's going on and be able to deal with it. Sitting and waiting and not knowing is by far the worst situation to be in IMHO. You've been through so much, and it is totally understandable why you're so worried. Have you spoken to your partner about your worries?

I often try and persuade myself that I shouldn't worry about things I have no influence over. It's difficult, but it's true. You can't change anything they will or won't find, so perhaps concentrate on other things to get you through this time.

I'm sorry I can't offer any more reassurance. I wish I could. Please keep in touch and let us know how it goes, and anytime you want to rant or scream or shout at the unfairness of it all - please feel free. We all know what that feels like.

Sorry if I went off on one a bit there.
Take care
Andrea

jfkimberly
13th May 2005, 09:37 PM
I can't say it any better than Andrea already has. We're all here for you, Franie. I am amazed by what you have already been through with your boys. It is clearly a testament to your strength. I know it seems daunting now, but as they get older, things will surely get easier. Until then, just try to enjoy the good times. We'll be here to help you through the bad times.

Sealy
13th May 2005, 10:26 PM
Andrea and Kimberly said it beautifully !

I was pretty nervous about the MRI and rather than letting it control me, I decided to just forget about it. If there was something wrong, I knew they would contact me with the bad news. I didn't have to go out of my way to find out the results. Anyway... that's how I handled it.

I hope everything goes smoothly with NO SURPRISES for you and your little guy. I don't think I can handle any more bad news :cry:


Sealy

newgirl
15th May 2005, 05:01 AM
Yvette,
I thought I had a cr***y year but it has been a walk in the park in comparison to yours.
I really cannot add much to what Andrea has said so well.
I do know how you feel about the MRI just discovering more problems, I know I felt the same, until they showed me the written result, I don't think I believed that there was nothing more to find. June 1st is not that far away, I know I always used to arrange a few things to do in the days and weeks coming up to big appointments, such as a dinner out with the girls or a night out with hubbie. It always used to make the time go quicker when I had something nice to look forward to.

Make sure that you arrange with your consultant about a time to get the results, I made a clinic appointment for about 2 weeks after the scan to ensure that we got the results. There is nothing more frustrating than ringing to look for results, at least if they are expecting you at a clinic they will have everything at hand ready for you.


Fingers crossed that the MRI shows no surprises, keep in touch,
Maybe when I am back in Dublin, we will be able to meet up for a celebratory drink :pint:
Nicola

franie
15th May 2005, 09:39 PM
Thanks everyone for the replies. I am feeling a bit calmer and rational about the whole thing now and realise that whatever will be... will be. If there is a problem uncovered in the MRI, then we will deal with it one step at a time. It was great to be able to voice all my fears without having to worry about scaring someone.

I had a ( good) few glasses of wine on friday night and had a good cry with my husband about all of the crap that we have had to endure over the last year so that helped me feel better. Plus i reminded myself that i have two very special little guys who are perfect in every way to me and i am very lucky to have them, humps and lumps and all.

I'll let you know how we get on on 1st June and Nicola, i'll hold you to that celebratory drink ( please God!).

Thanks again everyone..

Yvette.