this has been A. WEEK.

…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.

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11 Comments

Filed under health issues, military life

11 responses to “this has been A. WEEK.

  1. I will say a prayer for you. I think you are an amazing woman for dealing with everything that you do and so well. You really are. Yes, it is hard and it is sad, but you are doing what is best for your family and many of us wish we could do more.

  2. Britta

    Maybe all this is happening because there is some amazing Dr here in the states that you are going to meet that can have some major impact on E’s life? Maybe a better Dr- or better facility is in the bigger picture plan??? I just don’t know what to tell you- I can’t say that and then you move and the misery is still there- I can’t imagine a move would solve everything. I guess the question is- is getting better/ more help going to make things better in the long term/long run for your family (not only E)? If you could move past the miserable short term…. what can you handle- what do you need to have a healthy family? I know it is sooo very hard but I think you should consider moving (I know that is sooo easy for me to say as I am totally not in the place where you are- I am totally divorced of the situation I don’t live it) if it would help yall in the long run. It may be worth it. THat is such a hard decision! Just know we are all thinking of you and rooting for yall. You are doing amazing holding it all together (without going absolutely insane losing it all together- you do get out ofbed in the morning, take care of your family and somehow make it through every day one day at a time- jsut remember that. YOu are stronger than you think and “Popcorn” is hanging in there. SOmehow this will all work out! Jensen is sitting here ocmplaining that he hurt the TV and needs help… I look forward to your next post.

  3. Jennifer

    Oh girl, I’ve been thinking about you all week, somehow knowing that things were worse and not better. It’s not for lack of praying, that’s for sure.

    As much as you don’t want to hear this, I can’t imagine that a move in September is going to be any easier than it would be right now. (Please don’t shoot me for this…) If anything, I’d think waiting until after the baby is born would be worse. Add sleepless nights up with a nursing newborn, THEN moving?

    Don’t get me wrong. I think moving will be a horrible process no matter when it happens. But if it has to happen at some point, during your 2nd trimester would be the best of the worst I would think.

    Even though you’d have to ‘start over’ with the consults for E once you got back, you have to remember that things don’t typically move so.damn.slow. over here as they seem to over there. I seriously doubt you’d wait 3 months for a G tube, kwim? I know they’d get you in with a geneticist way faster than what’s happened there. Then the tests would actually be run halfway promptly vs. waiting for months on end for no answers.

    As much as I hate it for you, I’m on the ‘get it over with’ bench. I just don’t think it’s going to be easier later. And Mark is still working one week on/ one week off, so I can help some if you need me to. It’s not much, but you know I’ll do whatever I can.

    Hang in there.

  4. Wow. You guys are dealing with way too much right now. It has got to seem overwhelming beyond your craziest and wildest dreams.
    I have to agree with Jennifer. Though the task of a transatlantic move is stressful and just a big ol’ pain*in*the*a$$, I think that it may ease the stress knowing that Emmett is getting better care. Better care for him will be better for all of you in the long run – especially if you can start when itty bitty Popcorn is still teeny tiny. As far as pulling Noah out of school – not ideal, BUT kids are strong and he will be fine. We had to do this w/Kaneu when we moved back to the US in Oct. He’s fine. He misses London, crazyily, like I do, but he loves his new school. I think the doc has recommended your move home for a reason. Try to give it ALL to the Lord. I know it’s hard. Hang in there!!

  5. Ok, I have to agree with Jennifer, but for some different reasons. I am also on the move now team. Moving now might mean you have your car and furniture back before the baby is born instead of being without it with 4 kids, one being a newborn. Also, as for O and school…if he’s going to kindergarten (or even pre-k) then it starts in August here. Usually early August, depending where you get sent. Coming now, mid-year is better really. (My teacher opinion coming out)

    Also, here you have friends and family that could come help you more easily than they can with you in Europe. You might end up in driving distance, and if not, the flights will definitely be much much cheaper.

    It’s inevitable and I go with the bandaid approach. Yank it and get it over with. 🙂

    We are still praying for you and your family. I probably pray more now than I have in my whole life!

  6. I’m so sorry…no advice, just sorry.

  7. Heather

    I am not trying to come off as harsh(so please don’t take it that way) but feel I need to be honest with my thoughts(for Emmetts sake)and hope you appreciate that(I tend not to sugar coat things).

    Emmett is having such a hard time and been through so much in his short life.If in any way you can alleviate some of that for him isn’t it your responsibility as a parent to do what is best for him?You asked to adopt a SN child and now that is what you are dealing with,life with a SN child.It is hard and unpleasant at times but did any one ever say a SN child was going to be easy? That is why only certain people qualify to adopt SN children.You qualified, So someone saw what it takes in you enough to give you this SN child.You are capable of doing this,I know you are or you wouldn’t have qualified.

    I just want you to truly ask yourself and be brave enough to dig deep and answer honestly.If they were telling you this about Noah or Sawyer(Or even your unborn baby)what would your answer be?Would you even hesitate to make the move?What ever your answer is, Emmett deserves the same.

  8. Jennifer

    Heather,

    It’s not really my place to put out in a public space the details that I’m aware of surrounding Emmett’s adoption, but I will say this: M & L have been handling a situation that they did NOT sign up for with more grace, strength, and courage than I could have ever imagined.

    While I appreciate that you tried to be gentle with your comments and questions, most of what you wrote is completely off base and not applicable to their situation at all.

  9. Beth

    I’m kind of on the move side too…Not only would you be moving with a newborn (which would bring with it a lot of stressors), but you’d also be doing it after school starts for Noah. If you go now, he can get settled in before school starts.
    As for the geneticist, I’ve talked to some people here (even though I’m not 100% on whether you’re coming here) and can hook you up with someone who knows the ends and outs of the referral process for geneticists here….maybe you could set up the appts now so that you are on the waiting list now?
    I moved (only a mile away) with a five day old…NOT.FUN. Cannot imagine it in an transatlantic flight. I would have much rather done it while the baby was safe and warm in my tummy.
    Hang in there. Maybe what Britta said is right…maybe the answers are here?
    I don’t know. I know I’ve been worrying about you so much this week.
    Hang in there.
    Do you know where you’ll PCS?

  10. Pingback: a rebuttal, if you will « Cheers Y’all!

  11. ok I am voting move and don’t have time to say everything I want…BUT…Heather, WTF? I mean really. Do you have ANY IDEA what the reality is for this mom? I mean I am a mom to a kid with SN and have been through some stuff–and I can’t even wrap my head around it. Lauren hang in there, just getting through the day now seems like a victory worth celebrating.

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