That damn mickey - Urgh !!!!

Morning my precious pumpkin

So we had a relatively restful week last week, but since the weekend it hasnt been so great so hopefully we will be over that soon.

On Saturday morning you were cramping terribly after your feed so I put you over my shoulder - a position that normally seems to settle you quite quickly but you didnt and not for a while. You then gave one big heave and had a not so small vomit over my shoulder - which indeed confirmed that the nissen is once again loose (sigh - breaks my heart). Then suddenly I realised that the whole front of me was wet and I guess out of habit checked to see if it was your mickey that was leaking again or you somehow managed to vomit all over me and not only over my shoulder. And well yes, you guessed it, your mickey wasnt leaking it just freaking popped right out of your stomach. Thank goodness I did check cause as we all know how mommy panics with the stoma closing, I panicked like crazy, ran around like a chicken without a head :-) but thanks to daddy all was sorted chop chop, while mommy cleaned you up and cleaned the stoma, daddy cleaned the mickey and we got it back in time - not without my shaking hands though, but at least it ended all well. So now we have had to order another mickey cause this one obviously has a leak in the balloon. We keep topping it up by 2 - 3 mls every day because it just seems to deflate over night. Should be getting your new one today - thank goodness cause this is really nerve wrecking.

We also decided to take you back to the doctor on Saturday for a check up because you have been a little on the mizzy side - thank goodness we did that too, cause your chest is so full of phlegm again. I also asked the doc if we could put you back on antibiotics just in case of infection with all the drama from the mickey and he said well with your chest the way it is, we dont really have an option. At least we had stock of this at home. So once again my precious angel we are pumping you full of medicines again - at least we can do all that we have to at home and not have to go to a useless hospital - oh how I wish your doc would find another hospital :-( So mommy is doing all your physio and nebs at home (twice a day) and that seems to have helped quite a lot actually, you dont seem to be as congested or sound so phlegmy any more, so we will continue with this. Your doctor also suggested putting you on Nexium for the reflux, especially now that the nissen has come undone again and so far so good - but it all just seems like so much again, so much medicine. I wonder how your little body seems to cope with it all, how is it that your little liver hasnt decided to just give up - but by the grace of God it hasnt.

Another thing that daddy and I are baffled by - even the doctor is - normally we battle with the circulation in your body so your hands and feet, arms and legs too, are always ice cold, but for some unkown reason your legs are really really warm and the rest of your body is cold. We keep taking your temperature but that is normal. We are hoping this isnt something that you body is trying to fight off and maybe its the circulation that is trying to sort itself out. Your doc said we shouldnt stress just yet, but if you start with a temperature or anything else changes we need to give him a call.

Oh my honey, how ........ how do you do it. How do you manage to stay so strong and fight so hard, when sometimes I am so ready to just give up and there is nothing wrong with me. I am an abled person, I can do what I want when I want. You cant always do what you want or even communicate it at times and you always stay so happy and cheerful and fight with all your might.

I guess my saving grace is that Daddy has taught me and your sisters, that when we are down to just look your way and realise that we have so much to be thankful for, and that we have so much to fight for, so why not do it with a smile and the love that you give and show to us all.

Love you baby boy - you are just so worth it !!!