…as in, a week from hell.
I don’t have the energy to go into it all now, but the short version is this:
- we have been to 7 appointments this week – six of them for Emmett (the other was for Noah, who has been coughing his brains out for the last 2 weeks)
- out of those 6 appointments, number that have brought more bad news = 4 (not sure about the 6th one yet – Mike is taking Emmett to that one right now – on Saturday freakin afternoon – because I could not take any. more.)
- out of those 6 appointments, number where I have cried = 5
- other telephone consults involving bad news for Emmett = 2
Here’s the jist of the bad news:
- Emmett is scoring lower now developmentally than he was 2 months ago
- He will be scheduled (at some point) for a neurology consult and an MRI
- the genetics testing – oh, it hasn’t EVEN BEGUN YET. that’s right. so the earliest we could possibly expect results would be end of April
- he needs a gastrostomy tube with a fundoplication. this we have known since, maybe early October? I met with the only surgeon at Addenbrooke’s who can do this procedure. We are now on his waiting list. The waiting time is expected to be about 3 FREAKING MONTHS. FROM NOW.
- based on this development, our pediatrician, who has listened to me cry so hard I can’t even speak 2 times in the last week, is strongly recommending that we move back to the states NOW, because the NHS is not providing him with the standard level of care he would get in the states.
- OMG, have I mentioned before that I CANNOT handle a huge move right now? We would be without our stuff for months, without one of our cars for months. We would have to pull Noah out of school, leave our friends, find a place to live, move from here to there (involving a transatlantic flight with 3 kids, 1 husband – if I’m lucky, 1 dog and 2 cats), and start all over with all of these referrals.
So it comes down to this – do we stay (if they let us) until September, which Mike and I feel strongly would be better for our family as a whole, and subject Emmett to a lower quality of medical and developmental care than he could receive in the states? Or do we leave now, which would I guess be better for Emmett, but would totally suck for the rest of us.
I honestly don’t know if our family can make it through a big stressor like a move on top of all this. I am totally not making it through right now. I’ve caught Noah’s cough, am still totally exhausted, and spend most of every day crying at various doctor’s appointments.
It will truly be a miracle if baby popcorn (thanks Nora!) can make it through all of this. How does a teeny tiny baby make it through all of this sadness, this anger, this confusion?
Miracles are truly what we need right now. And I am having a really hard time even praying any more. Things just seem to get worse week by week. I know God hasn’t forsaken us. In my head, I know it. But that’s what it feels like in my heart.
* the next post won’t be about Emmett, I promise. My friend Sarah suggested that maybe there’s been enough about Emmett lately on the blog(although that is a pretty accurate reflection upon our lives – its mostly all about Emmett). Next time I’ll tell you about our girl’s mini-night out last night, in which we got into a fight with the popcorn nazi.
**I just had to add how funny to me it is that we are fighting tooth and nail to stay in a place that is freezing cold and rainy most of time, a place that is far away from my family, a place that has no Target for goodness sake, a place that I would have gladly left in a heartbeat for the first year and a half that we were here.