[ewmb]

#1068898

Valarie,
We will be thinking of your daughter. We have a little friend who has brain cancer for the second time and she is only 3. Her parents started a web journal that other people could read about what was going on. It was through the hospital and really let those of use who wanted to help know what they needed. I hope you will find the energy when this surgery is over to share what you all have learned as Ava is probably not the only one who will experience this in years to come. I wouldn’t have learned as much as I did about Graves, that I needed to know, to try and become healthy again without the sharing of the others on this board including you.

Take care,
ewmb

[bradybunch6x1]

#1019055

Hello all,
I just wanted to let people know that our sweet Ava is looking at another surgery for her Craniosynostosis(which was caused from Graves). We were told that it will be within the next three months. I am not looking forward to this again. We have already done one some what like it in the last year on the back portion of her head, and now it is on to the front. I kinda feel like this is the last place to post about this part as it really is a problem all it’s own, but since it is related to her Neonatal Graves, I thought that I would share it with you. I am really worried about this, as it is major brain surgery, and she will also have to have blood transfusion. This surgery about broke my heart the last time she had it but I know that it is what I have to do to allow her to become a functioning adult with limited complications from this disease.
I kinda feel like we don’t fit in anywhere when it comes to this disease, as we seem to be dealing with so much of the effects that most do not. I have tried to reach out to other parents that have children with this disease, to find that yet again we are alone in dealing with the complications that this disease has left behind. I know I shouldn’t feel this way, but really it seems that we are the exception to the rules when it comes to this disease.
I know many of us have this disease, and that in some way you can related to bits and pieces of our on going journey threw Graves disease, so that tends to help alot.
Valarie

[hyperm]

#1068899

Hi Valerie

Firstly, HUGE HUG ((((((((((((())))))))))) As if its not a worrying job enough being a mother you have all this to cope with too. I know I worry myself sick about my kids and when I was going through my op I didn’t genuinely care about any complications in the "real"sense (obviously slightly concerned) but I just prayed that God brought me through that op alive for my 2 boys….even if i was too loose my voice for good at least they still would have a mum.

I am sorry to say how illiterate I am to your daughters condition…but just by reading your post it seems an awful lot for a family to cope with and a little girl to come through…life is funny at times isn’t it?

I think I can speak for others (who I have gotten to know well on here) that you have come to the right place in the sense that although we don’t know a lot about Ava’s condition – you have our support, time patience and sympathy. Most of us on here are mothers and I know one or two have had kids having to go for major ops – not GD related but its a similar trauma… Please don’t feel you don’t fit in…. If you want to PM me even just to get it off your chest or have a good cry while writing (gosh have I done that many times!) then please know that I am here to listen to you. I may not be able to offer you any advice but I gather you are getting so much of that from your surgeons so what you are really needing right now is a friend – I can be that person.

I will be offering up my prayers for little Ava and for your family that you find the comfort and support that you need at this very trying time…

With lots of love and hugs

M xxx

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