Its the one place that you can look at a child and smile and they know they are not being judged, parents give a silent nod of understanding and empathy, and quite often I will pass a child who looks so poorly i get an ache in my tummy.
And it makes me realise that Little E is actually doing really well.
Quick update on Little E: She is 9 and a half months and since last week has been sitting up on her own and loving her new Independence! every couple of weeks she gains weight (not alot but its a gain) She is using her hands and feet brilliantly, she is making lots of sounds and they are starting to sound like mummy!!! She is at that clingy age and screams at anyone that's not family! and she is giggling now! still on oxygen and still getting nasty old chest infections but she fights them off pretty quickly.
So me and big D are proud at how she is thriving and developing.
The trouble is she has a very rare genetic syndrome called Escobar syndrome or MPS variant Escobar it means the same thing- its so rare that nearly all the doctors we meet have never treated a baby with this condition so they are guided by medical reports which usually paint a bleak picture. Under all their pages and pages of medical notes and long words that sound robotic is my gorgeous little girl, I wish they would remember that sometimes.
I know they have an important job to do but I always feel like listing all the problems has a major down effect on me, its written in her notes, does it all need to be said? negativity seeps through the pen in their hands!
Our last visit to GOSH was for a swallow study (xray of Little E's throat to see where the milk is going) and to see the hand plastic surgeon. 2 appointments at 11.40am and 2pm (left home at 9.15am got back at 7pm) The swallow study went well, not too traumatic for little E. I'm very happy, she drank some milk and ate some chocolate mousse, she did good.
Doctor says "bad news I'm afraid" (why must they start a sentence like they are a mechanic doing an MOT on my car and have found a major fault "bad news mate, your gonna need a new 2valve multi cylinder blah blah blah")
The swallow study showed milk collecting in the back of her throat as her swallow is not strong enough to take all the milk down, and because when you swallow your airway opens its "likely" the milk is going on to her lungs, she is being referred to the gasostromy team (oh goody we haven't been to that part of the hospital yet!!) She doesn't have a very big "reserve tank" (car metaphor again!) so any extra strain or illness could prove too much for her.
Well if that's what they think they why do we spend so much time at the hospital having tests done on little E? why is she prodded and pocked and needles and probes stuck in her and why is she wired up to machines, xrayed, starved, then force fed. why do we drive for miles and wait for hours for appointments? why cant she just LIVE?
Beckie,
ReplyDeleteThe first two years are so hard. During the first year, I remember leaving every doctor's appointment feeling as if I had given birth to some hideous monster instead of a child. I even began to look at Reece that way. I was so appalled with the way I felt. I wish I could tell you that there is an end to the "news" you will continue to receive. It seems as if there is always something with Escobar kids. Each year we say, "Oh, no surgeries set for this year!! Yay!" and something always manages to creep in. The great thing about all of the tests, notes, etc is that you become an expert on your child in ways you would have never imagined! I just got finished filling out medical record release forms for 5 different doctors just so I can add it to Reece's medical binder (#2, I might add). The neat thing is I can always look back and see how far he's come! Don't worry about Esmee! Sure, all of our kids have "problems", but they also are highly intelligent and extremely witty. Her personality will trump all! You are in my prayers as always, and I'm always way over here in the States, easily accessible through my Facebook addiction :) Big hugs!!
Thanks for your support Beth, finding the support group on Facebook has "Saved" me!!! I remember a friend telling me that I would become a real fighter for Esmee and I didnt really understand but I REALLY understand now!!
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